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#1 | |||
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Grand Magnate
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I was first on Copax for two years. Loved it. After my DX year of being back to back flares, my MS was finally stable. Had energy. But I was one of the few that had many of the immediate post injection reactions (IPIRs). When it went from every few months to every few days, was yanked off of that one.
Then I tried Rebif. MRIs were still stable, but did not feel good on it at all! Premedicating with aleve helped some with the flu like symptoms. Fatigue got really bad, and was mad at the whole world 9 days out of 10. Cog fog shot up like a rocket, probably due to the combo of the med effecting my mood and being tired all the time. 10 months into that one, had an allergic reaction to it. No interferons for me now. Because of what happened above, way too scared to try Ty. Inbetween neuros right now, so in a bit of a waiting game right now.
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Strength comes in all types of packages, even those you don't expect Dx'd MS 2007, Fibro 2009 |
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#2 | |||
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Grand Magnate
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I was on betaserson for two weeks. When I increased the dose to 50%, I had a nasty allergic reaction. So the neuros said no more interferons. I was then on copaxone for 4 1/2 months. Had six IPIR's in that time accompanied by high temperatures, cold chills, and shaking. Next in my first year journey of MS was tysabri. Had 5 infusions and experienced increasingly severe infusion reactions.Also developed antibodies I decided to try copaxone one more time. On the very first day, I did not have a IPIR but about three hours after the injection my temperature shot up to 103. So both my neuro and shared Solutions decided that was rather unusual
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#3 | |||
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Grand Magnate
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I'm 53, PPMS, in a chair, did Rebif, tried Novantrone, compounded 4-AP. No side effects but no help either. I now won't get MRIs anymore (Why? Not like they can do anything except tell me, yeah you still got MS, well, duh.), Try to use a minimum of meds. Not anti-doctor if it's needed but choose when I go, not their "MS" time schedule.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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#4 | |||
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Elder
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After first being dx in 2006, I began Betaseron. I had my 3 month follow up, and my liver enzymes were thru the roof! I set a clinic record. I didnt feel badly, but it was clear, I needed to be pulled from the med.
I have been on Copaxone since that time, and it took more than a year to start working with me. They clinic was ready to pull me from the drug, and finally about 14 months in, it was clear it was having a stablizing effect on my MRIs. fast forward 2 years, almost 3 and I feel MISERABLE on this stuff. I cant focus, I am easily distracted. I am more heat intolerant, I am grouchy, and feel angry at the world. How do I know its the C? when I stop, ALL these sx go away! I dont feel that C is helping or hurting me, other than the side effects. The clinics keep telling me that since I couldnt tolerate an interferon, that ALL other interferons are out of the question for me. Inc Ty! I cant take LDN because I take narc meds, and cant give them up. I stick with the c because, its either this or...hiC or Novatrone. Since I did so much chemo in the past, I doubt I would qualify for novatrone or HiC anyway. I do feel my MS is progressing, and now we are playing the SPMS vs RRMS and the CNS vs ANS MS game. I hate this silly disease.
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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#5 | |||
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In Remembrance
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I can't tell you how much I appreciate all your responses and DMD stories. I helps me to know you better and feel your pain.
I believe it helps us all....Keep them coming!!!! ![]()
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#6 | |||
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Elder
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Was on Copaxone for 1 1/2 years...and was getting increasingly severe symptoms. so neuro decided with me that I am off of the C and on to a clinical study next month...it's a B cell agonist, which he feels may work better considering the sxs.
I love not taking shots, but hate how my sxs have increasingly gotten worse. ![]()
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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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#7 | ||
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Senior Member
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Wow after reading your horror stories I guess I should count my blessings. I started Copaxone 5 years ago right after diagnosis. My MRIs are stable, or as stable as an imperfect process can be and I don't have any issues with the injections other than local site reactions and some dents in my legs.
As for my daily MS I'm still able to work like a dog but I'm tired all the time when I'm not working and need about 10 hours of sleep each night. Have times of minor nerve pain, paresthesia, increasing bladder issues and some bowel urgency, yippee. ![]() I'm too afraid not to work as much as I do because I think not having the income I am used to would actually be more stressful for me than working is. Sucks that at 45 I should even have to worry about this kind of *****.
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He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion. Anonymous |
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#8 | |||
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Wisest Elder Ever
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My first DMD was C. I stuck with it (no pun intended!
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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#9 | ||
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Senior Member
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Quote:
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He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion. Anonymous |
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