Talk Cancer

Question:

u can’t tell.  if you are having problems there is no way to predict if your problems would be worse by not taking the novantrone. Same with the abc drugs. I live with that knowledge daily and just assume that they are helping .  A leap of faith yes. — Laura "Jodi" <hellofromj…@nospamcharter.net> wrote in message

news:5nyde.34085$QR1.8372@fe04.lga… – Hide quoted text — Show quoted text -> "Laura" <the_happy_w…@myrealbox.com> wrote in message > news:Vqudna4S7cGINevfRVn-gA@wideopenwest.com… >>it is one of those odd drugs though – you could still have new >>problems when you are on it but your problems may not be as bad as >>they would have been had you not used novantrone. > What a loop, so you don’t really know if its helping or not. >> Any problems you are currently experience may be helped with >> steroids. > Steroids don’t seem to help anymore. > Thanks for your input, > TC, > Jodi > YMMV though. >> some folks are really helped some not.  Any one know of any other >> drugs to aid with an exacerbation like steroids help? >> if that is not the case please someone jump in here. >> — >> Laura >> "Jodi" <hellofromj…@nospamcharter.net> wrote in message >> news:O3vde.33572$QR1.18635@fe04.lga… >>> "Robert" <rob…@bellsouth.net> wrote in message >>> news:KTqde.505$SC.334@bignews6.bellsouth.net… >>>> In article <eufde.30831$c42.10…@fe07.lga>, "Jodi" >>>> <hellofromj…@nospamcharter.net> wrote: >>>> I guess it depends on what you mean by "helping." >>> Calming her active lesions is what i meant as helping.  For some >>> reason i thought the chemo would do that quickly. >>> Thanks for your reply. >>> Jodi >>> Novantrone is not, to my >>>> knowledge, a "magic bullet." It is to aggressively retard >>>> progression and in >>>> some cases has effected some symptom reduction (I guess that’s a >>>> good >>>> term…). >>>> I took the full course of Novantrone and while I didn’t see any >>>> symptom >>>> abatement I am hoping that it will slow progression. Is it >>>> working? Who really >>>> knows? >>>> I didn’t have rapid progression before, my usual length of time >>>> between "bad >>>> periods" was 5 years or so. My last one was in 2001 and I did >>>> Novantrone in >>>> 2002 – 2004 so I am awaiting 2006 to see if I have another 5 year >>>> episode. >>>> My doctor did say that he had a couple of patients who *did* have >>>> some >>>> improvement in symptoms so it does happen. I, personally, think >>>> your time of >>>> having MS is a big factor. I’ve had it 21 years so I really don’t >>>> think >>>> Novantrone (or probably any med) can radically change my course of >>>> disease as >>>> it could, say, someone having it for just a short time. I do >>>> believe time is a >>>> factor. I’m not a doctor so it’s just my opinion. >>>> Good luck, >>>> Robert

Response:

Jodi wrote: > "Laura" <the_happy_w…@myrealbox.com> wrote in message > news:Vqudna4S7cGINevfRVn-gA@wideopenwest.com… >> it is one of those odd drugs though – you could still have new >> problems when you are on it but your problems may not be as bad as >> they would have been had you not used novantrone. > What a loop, so you don’t really know if its helping or not.

That’s exactly the case. With Novantrone, as with the BARC drugs, the data on exacerbation/progression prevention are statistical *only*, and they in no way indicate whether or not any proposed patient will be helped by it or not… nor – because of the fairly random nature of MS – is there any way to tell if they *do* help in any given patient. – Hide quoted text — Show quoted text ->> Any problems you are currently experience may be helped with >> steroids. > Steroids don’t seem to help anymore. > Thanks for your input, > TC, > Jodi > YMMV though. >> some folks are really helped some not.  Any one know of any other >> drugs to aid with an exacerbation like steroids help? >> if that is not the case please someone jump in here. >> — >> Laura >> "Jodi" <hellofromj…@nospamcharter.net> wrote in message >> news:O3vde.33572$QR1.18635@fe04.lga… >>> "Robert" <rob…@bellsouth.net> wrote in message >>> news:KTqde.505$SC.334@bignews6.bellsouth.net… >>>> In article <eufde.30831$c42.10…@fe07.lga>, "Jodi" >>>> <hellofromj…@nospamcharter.net> wrote: >>>> I guess it depends on what you mean by "helping." >>> Calming her active lesions is what i meant as helping.  For some >>> reason i thought the chemo would do that quickly. >>> Thanks for your reply. >>> Jodi >>> Novantrone is not, to my >>>> knowledge, a "magic bullet." It is to aggressively retard >>>> progression and in >>>> some cases has effected some symptom reduction (I guess that’s a >>>> good term…). >>>> I took the full course of Novantrone and while I didn’t see any >>>> symptom abatement I am hoping that it will slow progression. Is it >>>> working? Who really >>>> knows? >>>> I didn’t have rapid progression before, my usual length of time >>>> between "bad >>>> periods" was 5 years or so. My last one was in 2001 and I did >>>> Novantrone in >>>> 2002 – 2004 so I am awaiting 2006 to see if I have another 5 year >>>> episode. >>>> My doctor did say that he had a couple of patients who *did* have >>>> some improvement in symptoms so it does happen. I, personally, >>>> think your time of >>>> having MS is a big factor. I’ve had it 21 years so I really don’t >>>> think Novantrone (or probably any med) can radically change my >>>> course of disease as >>>> it could, say, someone having it for just a short time. I do >>>> believe time is a >>>> factor. I’m not a doctor so it’s just my opinion. >>>> Good luck, >>>> Robert

Response:

Jodi wrote: > Calming her active lesions is what i meant as helping.  For some reason i > thought the chemo would do that quickly.

jodi, one of the things i’ve always disliked so much about M.S. treatments is that we, the patients, are forced to place a lot of emphasis on FAITH. if you’re on a D.M. and still having relapses, you have to believe that you’d probably be having more relapses without it. if your disability continues, you have to believe that it’s progressing at a slower rate than it would otherwise. in a case where someone is having frequent, severe relapses, and treatment with any of the D.M. drugs cuts the number and severity, it’s an easier situation to deal with, because you’ve got evidence of efficacy in your own life, you don’t have to take it on faith. another thing that a lot of people who are doing well on CRABs sometimes tend to forget is that lesion load has NEVER been directly correlated with disability progression. i had multiple brain lesions on my very first MRI. the first year post-dx was a rough one, but after that i settled in to a typical RR course, with good remissions and no residual disability. other people whose initial MRIs show only 1 or 2 lesions sometimes have very difficult disease courses, with residual disability after relapses, etc. novantrone, as well s the CRABs, has been clinically shown to reduce the number of active lesions on MRI. so, if active lesions still show up, the patient is back to ‘faith’ — if not for the treatment, there would/could/might have been more. i do remember that tracey was having frequent and severe relapses early on — if the number and severity has been cut down, then the treatment is working. if this doesn’t seem to be the case…time to talk to the doc again? also, with novantrone and betaseron, both of those can cause fatigue, nausea, muscle aches, etc. — tracey will have to try to separate out the side FX from the drugs, from M.S.-related fatigue, aches, vertigo, etc., to see if maybe the disease HAS been kicked back a few paces. if it was me in that situation, i’d see the novantrone treatment through and then get with the neuro and figure out which of the ‘lifetime’ dugs has the fewest side effects and the least disruption of my life. it’s possible that the neurologist is so focused on slight, tiny, un-noticeable ‘clinical benefits’ of beta and rebif over avonex or copaxone, that s/he pushes quality of life issues to the side. and yes, definitely if someone’s having constant relapses with residual disability after each one, their QOL ain’t gonna be real good, so if one or the other of the D.M.s seems more effective in that sense, it could be a good first choice. how many nvantrone doses are scheduled? 8, 12? since they’re infusing every 6 weeks instead of every 3 months, the limits will be reached sooner — it won’t last forever! with the CRABs, we’re pretty much expected TO take them ‘forever,’ or at least as close to that as possible. me personally, i’d suffer through the novantrone and deal with the side FX as best as possible, and focus more on finding something that doesn’t kick my butt all the way into the next county as a ‘regular’ D.M. like i said, that’s me! i can’t and wouldn’t want to try to ‘tell’ anyone else what to do. i’m also a different generation, i mean M.S. wise, not just age-wise. there WERE no treatments other than steroids and IVIG available to treat M.S. when i was diagnosed. the docs told me to get used to the idea — so i got used to it, LOL! which i guess made it easier to be unable to afford to self-pay for any of the D.M.s, not having them covered by straight medicare, and always coming out JUST over the allowed limit for financial assistance! so my experiences with them have been sporadic. i was working and had private insurance when beta hit the market. i was in the 2nd group of the ‘lottery winners’ which meant i ‘won’ the privilege of figuring out how to pay for beta. my insurance covered it for a trial period of 90 days. i was on it for 4 months, inclusive — took me a LONG time to pay for that last month’s worth of beta! i did clinical trials for both avonex and rebif. i got a medi-gap policy with injectables covrage AFTER my dx had already changed from RR to SPMS, but went ahead and injected copaxone anyway, as the neuro said it had neuro-protective qualities and was proven to reduce brain atrophy, in addition to its relapse reduction. injected it for about 18 months, then decided to stop, told the neuro, he argued just a tiny little bit and then agreed with my decision, one novantrone infusion, and ayy vi-ola, here we are! the best thing to have is a doctor who understands that being flat on one’s back and unable to enjoy any activities is NOT a good thing, whether it’s M.S. or M.S. TREATMENT that’s laying you out. in that situation, it’s definitely possible to have genuine dialog between doc and patient, to try to find the ‘middle ground.’ some doctors will get sort of aggressive about their patients’ feelings, which i think flat SUCKS — you know ‘ok, you feel tired all the time, is it worse than being confined to bed 24/7 would be?’  IOW, they’re worst-case scenario’ing that ‘might’ happen if you don’t use a D.M. i hate high-pressure tactics, reminds me of car salesmen and scientologists, more than medical professionals — but SOME of them are like that. a thorough, unhurried convo with the docs would be best — i know they can be short of time, but since M.S. is a lifelong disease, IMNSHO any physician who’s treating M.S. should oughta realize that since we’ve got to learn to live with it, we ant to live as well as possible, and yeah, that includes having side effect profiles that we CAN live with. M.S. sucks, life with it shouldnt’ have to. all the best to you and tracey! rose

Response:

"Laura" <the_happy_w…@myrealbox.com> wrote in message

news:Vqudna4S7cGINevfRVn-gA@wideopenwest.com… >it is one of those odd drugs though – you could still have new problems >when you are on it but your problems may not be as bad as they would have >been had you not used novantrone.

What a loop, so you don’t really know if its helping or not. > Any problems you are currently experience may be helped with steroids.

Steroids don’t seem to help anymore. Thanks for your input, TC, Jodi YMMV though. – Hide quoted text — Show quoted text -> some folks are really helped some not.  Any one know of any other drugs to > aid with an exacerbation like steroids help? > if that is not the case please someone jump in here. > — > Laura > "Jodi" <hellofromj…@nospamcharter.net> wrote in message > news:O3vde.33572$QR1.18635@fe04.lga… >> "Robert" <rob…@bellsouth.net> wrote in message >> news:KTqde.505$SC.334@bignews6.bellsouth.net… >>> In article <eufde.30831$c42.10…@fe07.lga>, "Jodi" >>> <hellofromj…@nospamcharter.net> wrote: >>> I guess it depends on what you mean by "helping." >> Calming her active lesions is what i meant as helping.  For some reason i >> thought the chemo would do that quickly. >> Thanks for your reply. >> Jodi >> Novantrone is not, to my >>> knowledge, a "magic bullet." It is to aggressively retard progression >>> and in >>> some cases has effected some symptom reduction (I guess that’s a good >>> term…). >>> I took the full course of Novantrone and while I didn’t see any symptom >>> abatement I am hoping that it will slow progression. Is it working? Who >>> really >>> knows? >>> I didn’t have rapid progression before, my usual length of time between >>> "bad >>> periods" was 5 years or so. My last one was in 2001 and I did Novantrone >>> in >>> 2002 – 2004 so I am awaiting 2006 to see if I have another 5 year >>> episode. >>> My doctor did say that he had a couple of patients who *did* have some >>> improvement in symptoms so it does happen. I, personally, think your >>> time of >>> having MS is a big factor. I’ve had it 21 years so I really don’t think >>> Novantrone (or probably any med) can radically change my course of >>> disease as >>> it could, say, someone having it for just a short time. I do believe >>> time is a >>> factor. I’m not a doctor so it’s just my opinion. >>> Good luck, >>> Robert

Response:

"Michael" <muirh…@haidagwaii.net> wrote in message

news:U-idnYHdTPAOS-vfRVn-ow@qcislands.net… – Hide quoted text — Show quoted text -> Jodi wrote: >> "Laura" <the_happy_w…@myrealbox.com> wrote in message >> news:Vqudna4S7cGINevfRVn-gA@wideopenwest.com… >>> it is one of those odd drugs though – you could still have new >>> problems when you are on it but your problems may not be as bad as >>> they would have been had you not used novantrone. >> What a loop, so you don’t really know if its helping or not. > That’s exactly the case. > With Novantrone, as with the BARC drugs, the data on > exacerbation/progression prevention are statistical *only*, and they in no > way indicate whether or not any proposed patient will be helped by it or > not… nor – because of the fairly random nature of MS – is there any way > to tell if they *do* help in any given patient.

Not to be nit-pickity, but with Novantrone one must have his WBC count (among other things) measured before treatment.  Its rather obvious it drops WBC’s, and thus the amount of things which can cross the BBB and cause damage.  I would say, in those who dont respond to Novantrone, that its clearly another form of MS, and not the one most neuros are familiar with. My WBC count is always high.  Over the normal limit, always has been, still is.  Other than the times I took Novantrone, when it dropped by at least 10 fold.  They even tested me for leukemia because of it once. Rob – Hide quoted text — Show quoted text ->>> Any problems you are currently experience may be helped with >>> steroids. >> Steroids don’t seem to help anymore. >> Thanks for your input, >> TC, >> Jodi >> YMMV though. >>> some folks are really helped some not.  Any one know of any other >>> drugs to aid with an exacerbation like steroids help? >>> if that is not the case please someone jump in here. >>> — >>> Laura >>> "Jodi" <hellofromj…@nospamcharter.net> wrote in message >>> news:O3vde.33572$QR1.18635@fe04.lga… >>>> "Robert" <rob…@bellsouth.net> wrote in message >>>> news:KTqde.505$SC.334@bignews6.bellsouth.net… >>>>> In article <eufde.30831$c42.10…@fe07.lga>, "Jodi" >>>>> <hellofromj…@nospamcharter.net> wrote: >>>>> I guess it depends on what you mean by "helping." >>>> Calming her active lesions is what i meant as helping.  For some >>>> reason i thought the chemo would do that quickly. >>>> Thanks for your reply. >>>> Jodi >>>> Novantrone is not, to my >>>>> knowledge, a "magic bullet." It is to aggressively retard >>>>> progression and in >>>>> some cases has effected some symptom reduction (I guess that’s a >>>>> good term…). >>>>> I took the full course of Novantrone and while I didn’t see any >>>>> symptom abatement I am hoping that it will slow progression. Is it >>>>> working? Who really >>>>> knows? >>>>> I didn’t have rapid progression before, my usual length of time >>>>> between "bad >>>>> periods" was 5 years or so. My last one was in 2001 and I did >>>>> Novantrone in >>>>> 2002 – 2004 so I am awaiting 2006 to see if I have another 5 year >>>>> episode. >>>>> My doctor did say that he had a couple of patients who *did* have >>>>> some improvement in symptoms so it does happen. I, personally, >>>>> think your time of >>>>> having MS is a big factor. I’ve had it 21 years so I really don’t >>>>> think Novantrone (or probably any med) can radically change my >>>>> course of disease as >>>>> it could, say, someone having it for just a short time. I do >>>>> believe time is a >>>>> factor. I’m not a doctor so it’s just my opinion. >>>>> Good luck, >>>>> Robert

Response:

`89 "Jodi" <hellofromj…@nospamcharter.net> wrote in message

news:5nyde.34085$QR1.8372@fe04.lga… – Hide quoted text — Show quoted text -> "Laura" <the_happy_w…@myrealbox.com> wrote in message > news:Vqudna4S7cGINevfRVn-gA@wideopenwest.com… >>it is one of those odd drugs though – you could still have new problems >>when you are on it but your problems may not be as bad as they would have >>been had you not used novantrone. > What a loop, so you don’t really know if its helping or not. >> Any problems you are currently experience may be helped with steroids. > Steroids don’t seem to help anymore. > Thanks for your input, > TC, > Jodi

It may be time to start an antibiotic such as minocycline or doxycycline. Good luck. Rob – Hide quoted text — Show quoted text -> YMMV though. >> some folks are really helped some not.  Any one know of any other drugs >> to aid with an exacerbation like steroids help? >> if that is not the case please someone jump in here. >> — >> Laura >> "Jodi" <hellofromj…@nospamcharter.net> wrote in message >> news:O3vde.33572$QR1.18635@fe04.lga… >>> "Robert" <rob…@bellsouth.net> wrote in message >>> news:KTqde.505$SC.334@bignews6.bellsouth.net… >>>> In article <eufde.30831$c42.10…@fe07.lga>, "Jodi" >>>> <hellofromj…@nospamcharter.net> wrote: >>>> I guess it depends on what you mean by "helping." >>> Calming her active lesions is what i meant as helping.  For some reason >>> i thought the chemo would do that quickly. >>> Thanks for your reply. >>> Jodi >>> Novantrone is not, to my >>>> knowledge, a "magic bullet." It is to aggressively retard progression >>>> and in >>>> some cases has effected some symptom reduction (I guess that’s a good >>>> term…). >>>> I took the full course of Novantrone and while I didn’t see any symptom >>>> abatement I am hoping that it will slow progression. Is it working? Who >>>> really >>>> knows? >>>> I didn’t have rapid progression before, my usual length of time between >>>> "bad >>>> periods" was 5 years or so. My last one was in 2001 and I did >>>> Novantrone in >>>> 2002 – 2004 so I am awaiting 2006 to see if I have another 5 year >>>> episode. >>>> My doctor did say that he had a couple of patients who *did* have some >>>> improvement in symptoms so it does happen. I, personally, think your >>>> time of >>>> having MS is a big factor. I’ve had it 21 years so I really don’t think >>>> Novantrone (or probably any med) can radically change my course of >>>> disease as >>>> it could, say, someone having it for just a short time. I do believe >>>> time is a >>>> factor. I’m not a doctor so it’s just my opinion. >>>> Good luck, >>>> Robert

Response:

In article <eufde.30831$c42.10…@fe07.lga>, "Jodi" <hellofromj…@nospamcharter.net> wrote: >… Does this mean the N isn’t working?  Sure is >making her sick.   I know it is different with everyone, but anyone on N and >how long did it take to start helping you?

I guess it depends on what you mean by "helping." Novantrone is not, to my knowledge, a "magic bullet." It is to aggressively retard progression and in some cases has effected some symptom reduction (I guess that’s a good term…). I took the full course of Novantrone and while I didn’t see any symptom abatement I am hoping that it will slow progression. Is it working? Who really knows? I didn’t have rapid progression before, my usual length of time between "bad periods" was 5 years or so. My last one was in 2001 and I did Novantrone in 2002 – 2004 so I am awaiting 2006 to see if I have another 5 year episode. My doctor did say that he had a couple of patients who *did* have some improvement in symptoms so it does happen. I, personally, think your time of having MS is a big factor. I’ve had it 21 years so I really don’t think Novantrone (or probably any med) can radically change my course of disease as it could, say, someone having it for just a short time. I do believe time is a factor. I’m not a doctor so it’s just my opinion. Good luck, Robert

Response:

"Robert" <rob…@bellsouth.net> wrote in message

news:KTqde.505$SC.334@bignews6.bellsouth.net… > In article <eufde.30831$c42.10…@fe07.lga>, "Jodi" > <hellofromj…@nospamcharter.net> wrote: > I guess it depends on what you mean by "helping."

Calming her active lesions is what i meant as helping.  For some reason i thought the chemo would do that quickly. Thanks for your reply. Jodi Novantrone is not, to my – Hide quoted text — Show quoted text -> knowledge, a "magic bullet." It is to aggressively retard progression and > in > some cases has effected some symptom reduction (I guess that’s a good > term…). > I took the full course of Novantrone and while I didn’t see any symptom > abatement I am hoping that it will slow progression. Is it working? Who > really > knows? > I didn’t have rapid progression before, my usual length of time between > "bad > periods" was 5 years or so. My last one was in 2001 and I did Novantrone > in > 2002 – 2004 so I am awaiting 2006 to see if I have another 5 year episode. > My doctor did say that he had a couple of patients who *did* have some > improvement in symptoms so it does happen. I, personally, think your time > of > having MS is a big factor. I’ve had it 21 years so I really don’t think > Novantrone (or probably any med) can radically change my course of disease > as > it could, say, someone having it for just a short time. I do believe time > is a > factor. I’m not a doctor so it’s just my opinion. > Good luck, > Robert

Response:

I think steroids are the only thing that does that actually. Novantrone is supposed to be better than even the abcr drugs for keeping new exacerbations from happening.  it is one of those odd drugs though – you could still have new problems when you are on it but your problems may not be as bad as they would have been had you not used novantrone.  At least that is how I understood it.  Any problems you are currently experience may be helped with steroids.  YMMV though. some folks are really helped some not.  Any one know of any other drugs to aid with an exacerbation like steroids help? if that is not the case please someone jump in here. — Laura "Jodi" <hellofromj…@nospamcharter.net> wrote in message

news:O3vde.33572$QR1.18635@fe04.lga… – Hide quoted text — Show quoted text -> "Robert" <rob…@bellsouth.net> wrote in message > news:KTqde.505$SC.334@bignews6.bellsouth.net… >> In article <eufde.30831$c42.10…@fe07.lga>, "Jodi" >> <hellofromj…@nospamcharter.net> wrote: >> I guess it depends on what you mean by "helping." > Calming her active lesions is what i meant as helping.  For some > reason i thought the chemo would do that quickly. > Thanks for your reply. > Jodi > Novantrone is not, to my >> knowledge, a "magic bullet." It is to aggressively retard >> progression and in >> some cases has effected some symptom reduction (I guess that’s a >> good >> term…). >> I took the full course of Novantrone and while I didn’t see any >> symptom >> abatement I am hoping that it will slow progression. Is it working? >> Who really >> knows? >> I didn’t have rapid progression before, my usual length of time >> between "bad >> periods" was 5 years or so. My last one was in 2001 and I did >> Novantrone in >> 2002 – 2004 so I am awaiting 2006 to see if I have another 5 year >> episode. >> My doctor did say that he had a couple of patients who *did* have >> some >> improvement in symptoms so it does happen. I, personally, think your >> time of >> having MS is a big factor. I’ve had it 21 years so I really don’t >> think >> Novantrone (or probably any med) can radically change my course of >> disease as >> it could, say, someone having it for just a short time. I do believe >> time is a >> factor. I’m not a doctor so it’s just my opinion. >> Good luck, >> Robert

Response:

Please drink at least one glass of tomato juice, grape juice or wine, orange juice, and chocolate milk, each, every day.  I cant think of anything that can provide so many antioxidents in such a simple way.  Avoid water as much as possible and only drink nutricious fruit juices, V-8 and chocolate milk. Seriously. Langers makes a grape juice with aditional antioxidents.  Theres also orange juice, grape juice, and tomato juice, with added Vitamin D and calcium. Canadian studies show that the more fruit and veggy antioxidents are consumed the less severe the MS.  And also that those who consumed the most fruits and veggies had the least risk of MS.  Course, thats not pefect, else Id never had MS in the first place. Rob – Hide quoted text — Show quoted text -> I agree that it sucks.  I’m still having alot of attacks.  Last MRI showed > about 9-10 active lesions.  AAAHHHHHHHHHHHHHH!!  So frusterating!! > "rose" <rosedawn_sc…@yahoo.com> wrote in message > news:1114961369.555868.151340@z14g2000cwz.googlegroups.com… >> Tracey wrote: >>> The Novantrone treatments are getting harder.  Since I’m on >> Beta-seron >>> /Novontrone combo I’m sick ALL the time.  I go for my 5th treatment >> on the >>> 5th of May.  Thanks for your well wishes Rose.  You take care- >>> Tracey >> that sucks, tracey. have the relapses stopped hitting you hard and >> fast, at least? th active novantrone dosing won’t last forever, but >> hopefully the benefits you get from it will continue beyond that. >> if you can get copaxone without breaking the bank, you might want to >> ask your neuro about it. it IS a more frequent needle stick, so i don’t >> know if it would be helpful with skin reactions, but i never had >> nausea, fatigue, or the flu-like symptoms while i was on copaxone. >> now that better MRI technology and disease modifying drugs are >> available, i think some neurologists tend to leave quality of life >> issues completely out of consideration when treating their M.S. >> patients. if one or more studies, small or large, seems to indicate one >> CRAB is ‘more effective’ than others, the doc will go for that one, >> because the evidence for its efficacy is ’scientific,’ whereas the side >> effects are sort of pushed to the side. >> obviously, anyone having back-to-back relapses isn’t having the >> greatest quality of life either! so if one of the CRABs really does >> seem to work better FOR YOU at preventing relapses, or making them less >> harsh, it’s improving your QOL even if the side FX kick your butt. >> but if you and the doc haven’t tried copaxone, it’s POSSIBLE that it >> would be as effective at preventing or easing relapses as betaseron is. >> no guarantee, but no guarantee that it WON’T be, either. >> i think of novantrone differently, because it does have a lifetime >> dosage limit. dennis and tam were worried about me taking novantrone — >> i suggested they think of it as taking a year out of my life in hopes >> of gaining several more. oh! i was referring to being productive and >> able about taking time off in exchange for more time, not about life >> shortening and extension. in my mind, it’s ‘allowed’ to be harsh, >> because it won’t be forever. >> but the CRABs are supposed to be forever, or at least nearly so. there >> are a lot of factors to weigh when it comes to something you’ll be >> expected to continue taking year after year. efficacy at reducing >> relapses is definitely one of those things, but so is being able to >> live with the treatment — if it comes to the point where the not-cure >> is worse than the disease, maybe fewer side FX will be more important >> than a clinically identifiable, but not noticeable to the person >> him/her/your/my-self. >> those are matters for you to give thought to, for sure, but also to >> talk about with your neuro. if the neuro’s willing to have a real >> discussion with you, it could be a win-win situation. doctors also need >> to realize their patients are more than the sum or our lab results. my >> neurologist does understand that; i think it’s too bad everyone’s >> doesn’t. >> rose

Response:

that sucks, tracey. have the relapses stopped hitting you hard and fast, at least? th active novantrone dosing won’t last forever, but hopefully the benefits you get from it will continue beyond that. I agree that it sucks.  I’m still having alot of attacks.  Last MRI showed about 9-10 active lesions.  AAAHHHHHHHHHHHHHH!!  So frusterating!! "rose" <rosedawn_sc…@yahoo.com> wrote in message

news:1114961369.555868.151340@z14g2000cwz.googlegroups.com… – Hide quoted text — Show quoted text -> Tracey wrote: >> The Novantrone treatments are getting harder.  Since I’m on > Beta-seron >> /Novontrone combo I’m sick ALL the time.  I go for my 5th treatment > on the >> 5th of May.  Thanks for your well wishes Rose.  You take care- >> Tracey > that sucks, tracey. have the relapses stopped hitting you hard and > fast, at least? th active novantrone dosing won’t last forever, but > hopefully the benefits you get from it will continue beyond that. > if you can get copaxone without breaking the bank, you might want to > ask your neuro about it. it IS a more frequent needle stick, so i don’t > know if it would be helpful with skin reactions, but i never had > nausea, fatigue, or the flu-like symptoms while i was on copaxone. > now that better MRI technology and disease modifying drugs are > available, i think some neurologists tend to leave quality of life > issues completely out of consideration when treating their M.S. > patients. if one or more studies, small or large, seems to indicate one > CRAB is ‘more effective’ than others, the doc will go for that one, > because the evidence for its efficacy is ’scientific,’ whereas the side > effects are sort of pushed to the side. > obviously, anyone having back-to-back relapses isn’t having the > greatest quality of life either! so if one of the CRABs really does > seem to work better FOR YOU at preventing relapses, or making them less > harsh, it’s improving your QOL even if the side FX kick your butt. > but if you and the doc haven’t tried copaxone, it’s POSSIBLE that it > would be as effective at preventing or easing relapses as betaseron is. > no guarantee, but no guarantee that it WON’T be, either. > i think of novantrone differently, because it does have a lifetime > dosage limit. dennis and tam were worried about me taking novantrone — > i suggested they think of it as taking a year out of my life in hopes > of gaining several more. oh! i was referring to being productive and > able about taking time off in exchange for more time, not about life > shortening and extension. in my mind, it’s ‘allowed’ to be harsh, > because it won’t be forever. > but the CRABs are supposed to be forever, or at least nearly so. there > are a lot of factors to weigh when it comes to something you’ll be > expected to continue taking year after year. efficacy at reducing > relapses is definitely one of those things, but so is being able to > live with the treatment — if it comes to the point where the not-cure > is worse than the disease, maybe fewer side FX will be more important > than a clinically identifiable, but not noticeable to the person > him/her/your/my-self. > those are matters for you to give thought to, for sure, but also to > talk about with your neuro. if the neuro’s willing to have a real > discussion with you, it could be a win-win situation. doctors also need > to realize their patients are more than the sum or our lab results. my > neurologist does understand that; i think it’s too bad everyone’s > doesn’t. > rose

Response:

"Tracey" <rubytuesday…@charter.net> wrote in message

news:Qsade.7860$cZ6.4529@fe02.lga… >Last MRI showed about 9-10 active lesions.  AAAHHHHHHHHHHHHHH!!  So >frusterating!!

4 doses of Novantrone 6 weeks apart, 3 MRI’s (before N, 3 months later and 2 weeks ago) and still active lesions.   The last mri’s they were different ones, but more of them.   Does this mean the N isn’t working?  Sure is making her sick.   I know it is different with everyone, but anyone on N and how long did it take to start helping you? thanks, Jodi

Response:

Hi Tracey After a few years I also started getting severe site reactions. Necrosis in both legs and a couple of spots on the abdomen – the scarring is still visible after 5 years on Copaxone. Those gullies just don’t go away. Because I had varying reactions on occasion I ignored them as they got worse. It wasn’t consistent, but once you’ve injected there isn’t much you can do. Sometimes the pain didn’t start for days. One leg got to the stage of cellulitis, which is pretty serious – the GP said I should never have left it so long, but I thought I was just being wimpy. You should definitely get this looked at. I would seriously think about switching off betaseron before it gets worse. Dawn "Tracey" <rubytuesday…@charter.net> wrote in message

news:JGice.26536$Jg7.10656@fe03.lga… – Hide quoted text — Show quoted text -> Hi all- > For any one that’s had experience with shot site reactions,(pretty much > everyone.)  I have been taking interferons for the last 4 years and > dealing with the related site reactions.  Let me tell you, I’ve gotten > some nasty looking site reactions.  Anyway, about a month ago I took my > shot and later noticed a small reaction forming.  By the next day the > reaction was very painful and I’d never seen anything like it.  It had a > series of three connecting, blood red dots. About a 1/4 inch wide and > probly a 1/2 inch long.  Looks like a vien brought to the surface.  The > thing is.. it’s been about a month and the reaction is still there and it > is EXTREMELY PAINFUL. Now it is scabbing and it is kind of sunken in like > a valley where the red dots are.  I don’t know but it has proven itself > worthy of a post. > Any help would be appreciated. > Tracey

Response:

Tracey wrote: > The Novantrone treatments are getting harder.  Since I’m on Beta-seron > /Novontrone combo I’m sick ALL the time.  I go for my 5th treatment on the > 5th of May.  Thanks for your well wishes Rose.  You take care- > Tracey

that sucks, tracey. have the relapses stopped hitting you hard and fast, at least? th active novantrone dosing won’t last forever, but hopefully the benefits you get from it will continue beyond that. if you can get copaxone without breaking the bank, you might want to ask your neuro about it. it IS a more frequent needle stick, so i don’t know if it would be helpful with skin reactions, but i never had nausea, fatigue, or the flu-like symptoms while i was on copaxone. now that better MRI technology and disease modifying drugs are available, i think some neurologists tend to leave quality of life issues completely out of consideration when treating their M.S. patients. if one or more studies, small or large, seems to indicate one CRAB is ‘more effective’ than others, the doc will go for that one, because the evidence for its efficacy is ’scientific,’ whereas the side effects are sort of pushed to the side. obviously, anyone having back-to-back relapses isn’t having the greatest quality of life either! so if one of the CRABs really does seem to work better FOR YOU at preventing relapses, or making them less harsh, it’s improving your QOL even if the side FX kick your butt. but if you and the doc haven’t tried copaxone, it’s POSSIBLE that it would be as effective at preventing or easing relapses as betaseron is. no guarantee, but no guarantee that it WON’T be, either. i think of novantrone differently, because it does have a lifetime dosage limit. dennis and tam were worried about me taking novantrone — i suggested they think of it as taking a year out of my life in hopes of gaining several more. oh! i was referring to being productive and able about taking time off in exchange for more time, not about life shortening and extension. in my mind, it’s ‘allowed’ to be harsh, because it won’t be forever. but the CRABs are supposed to be forever, or at least nearly so. there are a lot of factors to weigh when it comes to something you’ll be expected to continue taking year after year. efficacy at reducing relapses is definitely one of those things, but so is being able to live with the treatment — if it comes to the point where the not-cure is worse than the disease, maybe fewer side FX will be more important than a clinically identifiable, but not noticeable to the person him/her/your/my-self. those are matters for you to give thought to, for sure, but also to talk about with your neuro. if the neuro’s willing to have a real discussion with you, it could be a win-win situation. doctors also need to realize their patients are more than the sum or our lab results. my neurologist does understand that; i think it’s too bad everyone’s doesn’t. rose

Response:

Hi all- For any one that’s had experience with shot site reactions,(pretty much everyone.)  I have been taking interferons for the last 4 years and dealing with the related site reactions.  Let me tell you, I’ve gotten some nasty looking site reactions.  Anyway, about a month ago I took my shot and later noticed a small reaction forming.  By the next day the reaction was very painful and I’d never seen anything like it.  It had a series of three connecting, blood red dots. About a 1/4 inch wide and probly a 1/2 inch long.  Looks like a vien brought to the surface.  The thing is.. it’s been about a month and the reaction is still there and it is EXTREMELY PAINFUL. Now it is scabbing and it is kind of sunken in like a valley where the red dots are.  I don’t know but it has proven itself worthy of a post. Any help would be appreciated. Tracey

Response:

- Hide quoted text — Show quoted text -Tracey wrote: > Hi all- > For any one that’s had experience with shot site reactions,(pretty > much everyone.)  I have been taking interferons for the last 4 years > and dealing with the related site reactions.  Let me tell you, I’ve > gotten some nasty looking site reactions.  Anyway, about a month ago > I took my shot and later noticed a small reaction forming.  By the > next day the reaction was very painful and I’d never seen anything > like it.  It had a series of three connecting, blood red dots. About > a 1/4 inch wide and probly a 1/2 inch long.  Looks like a vien > brought to the surface.  The thing is.. it’s been about a month and > the reaction is still there and it is EXTREMELY PAINFUL. Now it is > scabbing and it is kind of sunken in like a valley where the red dots > are.  I don’t know but it has proven itself worthy of a post. Any help > would be appreciated. > Tracey

Disclaimer:  I’m not a doctor and I don’t know what I’m talking about. I think you should re-post this message with "Ping: bobbyD – " in the subject header… in fact, I’ve decided to do it myself, because this sounds to me like the sort of reaction that leads to tumour necroses, and he’s lived through a *bunch* of ‘em and is still dealing with pain, scarring and other after-effects of the site-reactions he’s had.

Response:

"Michael" <muirh…@haidagwaii.net> wrote in message

news:QYudnfSbeqSdJ-zfRVn-jg@qcislands.net… – Hide quoted text — Show quoted text -> Tracey wrote: >> Hi all- >> For any one that’s had experience with shot site reactions,(pretty >> much everyone.)  I have been taking interferons for the last 4 years >> and dealing with the related site reactions.  Let me tell you, I’ve >> gotten some nasty looking site reactions.  Anyway, about a month ago >> I took my shot and later noticed a small reaction forming.  By the >> next day the reaction was very painful and I’d never seen anything >> like it.  It had a series of three connecting, blood red dots. About >> a 1/4 inch wide and probly a 1/2 inch long.  Looks like a vien >> brought to the surface.  The thing is.. it’s been about a month and >> the reaction is still there and it is EXTREMELY PAINFUL. Now it is >> scabbing and it is kind of sunken in like a valley where the red dots >> are.  I don’t know but it has proven itself worthy of a post. Any help >> would be appreciated. >> Tracey > Disclaimer:  I’m not a doctor and I don’t know what I’m talking about. > I think you should re-post this message with "Ping: bobbyD – " in the > subject header… in fact, I’ve decided to do it myself, because this > sounds to me like the sort of reaction that leads to tumour necroses, and > he’s lived through a *bunch* of ‘em and is still dealing with pain, > scarring and other after-effects of the site-reactions he’s had.

Yep.  That particular reaction doesnt mean you are predisposed for more, I dont think.  But a visit to your neuro is in order.  You dont want, what that might be. I had reactions that gave me slightly red, patchy, splotches all over after a warm shower.  I was taken off it immediately.  I called it relapsing remitting body-wide diaper rash.  My neuro feared it was a predassesor to tissue necrosis.  A very bad and painfull condition.  It may be time to switch to Avonex or Copaxone. Rob

Response:

"Tracey" <rubytuesday…@charter.net> wrote in message

news:JGice.26536$Jg7.10656@fe03.lga…  It had a series of three > connecting, blood red dots. About a 1/4 inch wide and probly a 1/2 inch > long.  Looks like a vien brought to the surface.  The thing is.. it’s been > about a month and the reaction is still there and it is EXTREMELY PAINFUL.

I just wanted to add that there isn’t a lump or anything under the spot, it felt soft.  When Tracey showed it to me, i felt it, she screamed at me, lol, but i was able to tell there didn’t seem to be a lump or anything under it. The light touch did make her scream and yell at me though.  Sorry sweetie. Jodi

Response:

"Jodi" <hellofromj…@nospamcharter.net> wrote in message

news:RJsce.1461$cZ6.632@fe02.lga… > The light touch did make her scream and yell at me though.

By that, i meant, because it was so painful. Sorry sweetie. – Hide quoted text — Show quoted text -> Jodi

Response:

On Thu, 28 Apr 2005 21:25:14 -0700, "Tracey" <rubytuesday…@charter.net> wrote in alt.support.mult-sclerosis: > The thing is.. it’s been >about a month and the reaction is still there and it is EXTREMELY PAINFUL. >Now it is scabbing and it is kind of sunken in like a valley where the red >dots are.  I don’t know but it has proven itself worthy of a post. >Any help would be appreciated.

Tracey, you need to have a medical person look at that. Some people can get bad reactions to the injection sites. — Joan

Response:

Rob Duncan wrote: > remitting body-wide diaper rash.  My neuro feared it was a predassesor to > tissue necrosis.  A very bad and painfull condition.  It may be time to > switch to Avonex or Copaxone.

tracey, HAVE you ever tried copaxone? i think i remember that you were on avonex at one point, but the relapses were still hitting frequently. did your neuro think it would be the same with copaxone, or did you actually inject copaxone and have the same ineffective result? i think you should definitely for sure tell the neurologist about the reaction. even if it gets better, the doc needs to know in order to keep an eye out for it in the future. how are the novantrone treatments going? all the best, rose

Response:

"rose" <rosedawn_sc…@yahoo.com> wrote in message

news:1114797666.174547.110380@z14g2000cwz.googlegroups.com… > Rob Duncan wrote: >> remitting body-wide diaper rash.  My neuro feared it was a > predassesor to >> tissue necrosis.  A very bad and painfull condition.  It may be time > to >> switch to Avonex or Copaxone. > tracey, HAVE you ever tried copaxone? i think i remember that you were > on avonex at one point, but the relapses were still hitting frequently. > did your neuro think it would be the same with copaxone, or did you > actually inject copaxone and have the same ineffective result?

I’ve never been on avonex or copaxon.  I was on rebif for a year and I couldn’t continue taking it because the injections were so painful.  If I had a shot in the leg… I could barely walk for the rest of the day etc. I’ve been on beta-seron ever since. > i think you should definitely for sure tell the neurologist about the > reaction. even if it gets better, the doc needs to know in order to > keep an eye out for it in the future. > how are the novantrone treatments going? > all the best, > rose

The Novantrone treatments are getting harder.  Since I’m on Beta-seron /Novontrone combo I’m sick ALL the time.  I go for my 5th treatment on the 5th of May.  Thanks for your well wishes Rose.  You take care- Tracey

Response:

"Tracey" <rubytuesday…@charter.net> wrote in message

news:JGice.26536$Jg7.10656@fe03.lga… – Hide quoted text — Show quoted text -> Hi all- > For any one that’s had experience with shot site reactions,(pretty much > everyone.)  I have been taking interferons for the last 4 years and > dealing with the related site reactions.  Let me tell you, I’ve gotten > some nasty looking site reactions.  Anyway, about a month ago I took my > shot and later noticed a small reaction forming.  By the next day the > reaction was very painful and I’d never seen anything like it.  It had a > series of three connecting, blood red dots. About a 1/4 inch wide and > probly a 1/2 inch long.  Looks like a vien brought to the surface.  The > thing is.. it’s been about a month and the reaction is still there and it > is EXTREMELY PAINFUL. Now it is scabbing and it is kind of sunken in like > a valley where the red dots are.  I don’t know but it has proven itself > worthy of a post. > Any help would be appreciated. > Tracey

sounds like necrosis to me,, but have your doc or neuro check it out,,,  i still have injection site redness after my last injection in 1997,,, many years ago,,,  i was told by my neuro long ago ,, that most people can handle 3 years on betaseron then they have a propensity to develop anti bodies get it looked at,,, DON’T INJECT anywhere near your sore area,, skip it on site rotation!!!!!!!!!!!!! hope you get better soon please feel free to email me if ya like  to discuss this more phatbhat@ Remove telus.net bobbyD

Response:

"bobbyD" <phatbhatREM…@telus.net> wrote in message

news:xVvce.12643$tg1.2257@edtnps84… – Hide quoted text — Show quoted text -> "Tracey" <rubytuesday…@charter.net> wrote in message > news:JGice.26536$Jg7.10656@fe03.lga… >> Hi all- >> For any one that’s had experience with shot site reactions,(pretty much >> everyone.)  I have been taking interferons for the last 4 years and >> dealing with the related site reactions.  Let me tell you, I’ve gotten >> some nasty looking site reactions.  Anyway, about a month ago I took my >> shot and later noticed a small reaction forming.  By the next day the >> reaction was very painful and I’d never seen anything like it.  It had a >> series of three connecting, blood red dots. About a 1/4 inch wide and >> probly a 1/2 inch long.  Looks like a vien brought to the surface.  The >> thing is.. it’s been about a month and the reaction is still there and it >> is EXTREMELY PAINFUL. Now it is scabbing and it is kind of sunken in like >> a valley where the red dots are.  I don’t know but it has proven itself >> worthy of a post. >> Any help would be appreciated. >> Tracey > sounds like necrosis to me,, but have your doc or neuro check it out,,, > i still have injection site redness after my last injection in 1997,,, > many years ago,,, > i was told by my neuro long ago ,, that most people can handle 3 years on > betaseron then they have a propensity to develop anti bodies > get it looked at,,, > DON’T INJECT anywhere near your sore area,, skip it on site > rotation!!!!!!!!!!!!! > hope you get better soon > please feel free to email me if ya like  to discuss this more > phatbhat@ Remove telus.net > bobbyD

Thanks BobbyD.  I have been skipping the sore area completely in rotation. I geuss it has been about three years on beta-seron too. Thanks for your help  and you can email me too at rubytuesday…@charter.net Thank you-  take care Tracey

Response: