Still getting a rash from Avonex

[maxthecat43]

Hi everyone!  I have a question about controlling allergic reactions.  I won't see my neuro until next month, and I have had more difficulty with allergic reaction to Avonex.  For the last couple of months, I've been able to control it with 10mg of oral prednisone, and two benadryl tablets- along with the usual pre medication for interferon.  Last week, the rash persisted for an additional day.  This week, the rash/itchiness is still present, three days later.  I don't want to give up!  Other than the skin rash, this dmd has been the most tolerable for me.  I haven't tried taking the prednisone more than once, right after injecting.  Should I keep taking prednisone for  few more days after injecting?  Week after week- that just doesn't sound safe.  Maybe just take a higher dose the first time, and not take it over the next few days?  I really need something to work.  I haven't been able to stay on any of them long enough to see if they help, so I'm not ready for the "big guns" yet. (Tysabri/Gilenya).  I'm afraid that I will end up in a situation that leaves me without any options at all.

Anyone else have this issue?  What did you do about it?

[bettebelle]

Since I have been on avonex....I started in Decenber, I have never had a blood return. It's to ensue your not in a blood vessel to my understanding. I follow the hand measurement on mh thigh to make sure I'm hitting the muscle. There are handy videos on YouTube if you don't know what I'm talking about. I'm a fair skinned person and have had reactions to many other drugs, but I have been real lucky with avonex. I hope that the self mix will help you out! I haven't had severe side effects on avonex and an generally pleased with it

[maxthecat43]

Do you have any trouble when you "draw back"?  The Avonex nurse said that if I get any blood in the syringe, the company will overnight another kit to me the next day. With all the blood vessels in our legs, it seems like this could happen a lot.  

Also, why do we have to "draw back" with the type you mix yourself, and not with the prefilled?  

Tammy

[bettebelle]

I think it's a good call to switch to mix yourself avonex.  I think you may be on to something with the pre filled syringes. I mix my own avonex and it is incredibly simple with how they give you a weekly kit. Hope it's a simple fix and you can stay on avonex!

[maxthecat43]

Yes, the prednisone was prescribed for the rash, but since it's getting worse now - we are going to try switching to the version that has to be mixed.  Maybe it's the preservative I'm allergic to- because I was allergic to Rebif too, and they have the same preservative in the pre-filled syringes.  It's possible that I am allergic to interferon beta 1a, but that's fairly rare...  We'll see.

Tammy

[doublevision1]

Just curious - was the prednisone prescribed because of the reaction to Avonex, and does the prescription provide a dosage range to work within so you can adjust as needed?  

I agree with contacting your neuro and/or nurse, a month is a long time to wait if you are in a lot of discomfort, especially if it is avoidable or could be at least minimized.  Re: the prednisone, your pharmacist is also a great resource for you.  I understand your concern about ongoing use as over time it can cause complications.  Like so many meds it is an exercise of trial and error to find the dose that is high enough to provide adequate relief while not so high that it causes complications.  It can be tough sometimes to figure that out.  It is also discouraging when the DMD we've chosen seems not to agree with us.  Good luck and I hope this problem resolves so that you don't have to consider making a change.

[maxthecat43]

Thank you Lulu, you are always so sweet.

[maxthecat43]

I never thought of that as a possible reason...I will give the Avonex nurse a call.  Thanks!

[Lulu54]

Darn it! I hate to read about people having trouble with a therapy choice that they otherwise think is the best one for them.  I can be of no help to you with what to do with the prednisone, That is definitely worth a call to your doctor now rather than wait another month to ask for direction.  They can best tell you what to do for your next injection.  

best, Lulu