[KittyLady]

I have had now 5 IPIR's with copaxone. Just had my last one saturday. Injection was fine, but 50 seconds later, my hands turned beat red and felt like they were swollen and on fire, my face and ears did the same thing, and my throat felt like it was closing and such an intense stabbing sharp pain in my lower back. My lower leg also felt like it was on fire. Called SS and they said I had all the symptoms of IPIR and not to take any more shots until I talk to my doc. Well, thats enough for me. This was the most severe and it scared the daylights out of me, so, Im done. No more. Its now Monday, and Im finally feeling a bit better. Took along time for my body to get over that shot. My throat still feels a bit closed off, but not as bad. I dont really care what my neuro has to say about it, Im done. I'll ask for LDN, but none of the dmd's. Sometimes I wonder if this is all worth it. MS is going to do what its going to do no matter what I do. All these chemicals I put into my body, could they be causing more harm than good???

[Kitty]

I don't blame you. Sometimes the stuff that's supposed to help us ends up hurting us more.

[AJ49]

Same thing here. I did have a good 2 years though. My last 4 shots I spaced out 4 weeks inbetween. Guess I'm a slow learner. I had to lay on the kitchen floor(because it's cooler there) until I cooled off. Did LDN next and now Tysabri for 4 years. At least I'm stable now.

[NurseNancy]

that sounds just awful. i don't blame you for quitting it.

[SallyC]

I never had one of those with Copaxone, but the very first one would have set me running for the hills.

I'm glad you're off of it. Good luck with LDN. I hope it helps you to feel better,

[Mariel]

I'm scared to try a new drug. I have a drug which is off-label to increase Dopamine, used by Parkinson's patients. To stop the spasmodic jerking which is in my left leg and hip and which sometimes keeps me awake. It's breaking through into daytime now. I'm sitting here jerking. Feel hopeless but I already am doped out by taking both demerol yesterday for pain (rare for me to do that) and Zyrtec antihistimine for itch. I can hardly drive and I have to drive. I can't take one more thing to make me stupid. So I'm where you are, KittyLady, just fed up with drugs.

[KittyLady]

I called my neuro Wednesday to let him know what happend and advise him Im done with copaxone and want to try LDN. Well, spoke with the nurse and told her everything but have to wait for neuro's response as he is in France right now for meetings. France!! WTH!! Well, I do feel better being off copaxone. My lumps are going away and no more bruises... Hopefully he will let me start LDN and I can see if that helps me any.

[DejaVu]

Hi KittyLady,
I am sorry your experience with meds has not been very helpful to you.

I don't have a formal diagnosis of MS, yet have had many co-occurring diagnoses of the central and peripheral nervous systems. All very painful. Lots of spasms, weakness, severe fatigue, etc. Severe disability. (All in all, it appears to look more and more like MS. My primary Neurologist strongly feels I have MS in addition to other neurological issues, yet... we will see.)

We have tried so many meds and combinations of meds for the past 30 years!
I cannot tolerate more than 90% of all of the meds! I just cannot! It's incredibly frustrating! I have all kinds of serious reactions to most meds, which make me worse, not better. Not helpful.

I will be starting with a Physiatrist soon and hope this helps me some, even a little. I cannot find anyone, yet, interested in prescribing LDN.

It can be such a long road sometimes.
My heart goes out to you, KittyLady!
I hope you find some truly significant relief, soon!

[karilann]

Wow, so sorry you had such a hard time! Almost sounds like an allergic reaction with the throat closing up etc.
When I started Beteseron, they slowly increased the dose. Didn't start off on a full dose. I did well that way....but perhaps I am just lucky.

Had my 6 month check up with my Neuro just last week. I told him I've been on shots since 2002 and my skin has had it. I want to try the new BG12 pill. He said it comes out in a few weeks and he would like to see how the general M.S. population does first. He feels trials always look pretty good until more people go on it. So he asked me to give it another 6 months for him to check it out.

I don't have any side effects from the Betaseron EXCEPT for the awful injection site reactions. My skin is always sore and stays that way for a long time. I'm running out of areas to shoot up. My disease has been stable since the Betaseron, but I'm not convinced I would have been stable with or without the shot. We never know and it is fear that keeps us where we are.
I'm waiting for my liver to show some problems.....I think it is inevitable.