Seriously considering finishing with Betaferon
 

I think I've reached the lowest point of my Beta experience and I'm weighing up the pros and cons of ending our bitter relationship.

On the up side, I'm confident (as much as I can be) that it is helping me.

On the down side, even after nine months, the side effects are actually getting worse. I wake up racked with flu symptoms and last night was the worst for ages. My joints are burning, I can't move off the bed, I'm shaking, shivering, freezing cold (it's 20 degrees overnight (70 in old money)), and pain killers don't seem to touch it.

I'm starting to hate the whole experience. I started taking it at midday since I was awake through it anyway, I may as well take it and be done with it then sleep off the 'hangover' but all that seemed to do was extend my 'hangover' (which is also quite bad) to the next day too.

Any suggestions how I can get my life back? I feel like I'm a slave to the jab. My only good time is the hours/day before my jab. Other than that, I'm either in pain or feeling dizzy and lethargic. I'm thinking it shouldn't be this hard and maybe I need to look at something else.

I think I've had enough. :(

Pud, which pain medication do you try? Not sure what you have available to you, but Tylenol (acetaminophen) and Aleve (naproxen) do not help me with side effects from Betaseron. BUT Advil or Motrin (Ibuprofen) does. I take 400 mg of ibuprofen when I do the injection and 400 mg more as needed. If I forget to pre-medicate with the ibuprofen I ache and get bone rattling chills....some times it aches so bad my fingers, toes and nose feel like they are going to fall off! :eek:

the nurse that taught me to do my avonex told me to take 2 tylenol and 2 benedryl 2 hours before injection and to repeat every 4 hours with tylenol and every 6 with benedryl . Although it made me sleepy it worked wonders. when i would fall asleep and forget to take my meds I would wake up with the nasty flu like stuff. Unfortunately after 2 months on the Av I started having weird reactions and breaking out in hives despite the bene so I started TY last month.

I hear ya, pud's. I was on Avonex and hated it for how it was making me feel. I think it may have helped too, but at what cost..:mad:

Maybe you could switch to Copaxone. I did and had no side effects, except that I keep on having exacerbations, so I stopped it too.

Good luck with your choice...Don't forget about LDN. A lot of Peeps on your side of the Pond are on it. :hug:

That's my exact story except it was rebif I was on for a year and a half. I know it was working but I couldn't take it anymore and the copaxone didn't affect me much at all but I kept on having bouts of ON.

I spoke with my neuro about LDN the last week and he said he was(n't) recommending it because of the lack of study, but said he had another patient that was on it from which I assume he would give it to me if I asked. Still thinking about that. A good diet and exercise has seems to be staving it off lately. <fingers crossed>

Hope you find a happy median pud.

Thanks guys.

I only take some paracetomol after the jab. it seems that if it hurts going in, i know it's going to be a bad one. A painless injection usually means less reaction.
I stopped taking brufen because i don't eat often enough and was giving me problems.
I might explore other analgesia. I have until january before seeing neuro spec to decide on a plan.
I'm reluctant to take on copaxone since I have so little fat on me; the thought of a daily jab would be too much.

Since I'm generally symptom free at the moment, how would I know if LDN was working? Bit wary of taking on an unknown and am sure spec would poopoo the idea anyway.

Last night I woke up literally too stiff to move. as usual, the cats had drunk out of my night glass of water so couldn't use that to take anything close at hand. So i cried instead. It was pitiful.

I found Beta made me feel like I was having flu sx, but I took advil and went to bed. I found advil worked better than tylenol for me. I couldnt take Beta cause it made my liver unhappy, so I switched to Copaxone. I wont lie and tell you its been a bump free ride, but I never feel like I am getting the flu.

Hang in there, its such a tough thing to do. :hug: