Welcome to Willowmom

Willowmom said...

Hi everyone- I'm new to the site but have been reading away like crazy for two days. Lovely to read about so many people with the same symptoms and issues as myself (not lovely that we all have them). I'll jump in more on some other topics, but couldn't resist this one tonight.
I was diagnosed w/ RRMS in 2003 and started on Betaseron right away. I had no relapses, though plenty of symptoms that flare up still. However, in 2007 I was running out of injection sites that weren't ruined with bruising and bumps and I had been anemic for a year despite taking iron. So I switched to Avonex.
Avonex side effects I had were way worse than any 'flu' symptoms from the Betaseron. Like tkelly I had to have help once a week because I was completely laid up for 12- 16 hours. I had to go to a 4/9s work schedule to have a day to recover from shot. So after six months and never more than a 75% dose I went off of it. I am 5 months without anything and I am pretty sure the last two weeks have been a relapse, though not severe enough for me to overcome my fear of solumedrol IVs (let's talk about that somewhere else).
My point- My self-help group members explained that there are 2 types of AVonex. Pre-mixed formula and the type that you reconstitute. I had been on the newer pre-mixed which has caused some patients intolerable side effects who had done fine with the 'old' Avonex. Armed with that knowledge (my neuro never mentioned it) I am going to give the 'old' version of the Avonex a try. Just waiting on nurse to come out and teach injections. I did my own subcu's but never got up the nerve with the Avonex, but I will now. Copaxone is a possibility for sure, but check which version of the Avonex you were on.
A pleasure to meet you all.

Hey Willowmom,

I thought I would start a new thread for you so everyone could say hello!!  You have some fascinating information here.  I have never heard this before but it certainly warrants some attention.  I have talked to some that have been on avonex for years and have not had much trouble with it and others have just hated it.  I wanted to wish you the best of luck with your switch.  I hope you soon find a med you can tolerate.  Please do tell us your fears of solumedrol.  I have done the five day course and it really wasn't too bad.  Anyway, welcome to HW.

Love and prayers,

Hi and welcome Willowmom you have found a great site

I have been on both forms of avonex and the next day is always pretty bad meaning the legs are usually heavy hope they told you about the tyelnol before injection and after and even the next day..I also get the solumedroul iv's every 3 months for 3 days ....Not exactly fun but it is tolerable....I wish you the best...Oh and the avonex needles come in a smaller size too in case your doc. or pharmacy didnt mention that to you.Not quite as intimadating . I still use the bigger one. Premixed.....good luck to you!!!! Hope to see you around on here! pokey79 (barb)

Hi everyone- Thank you so much for the warm welcome. I have a computer glitch and have to refresh my page each time I come on- I have just figured that out and am seeing your responses for the first time. Thanks again and I will be sure to keep you posted. Supposedly it may be a reaction to the 'preservatives' in the mix. We shall see.
In my five years I have not had a relapse requiring the Solumedrol. The last 4 weeks have been one of those times (that i read several of you talk about on here) where you are unsure if it's a relapse or just old symptoms rearing ugly heads. MS Hug has been most uncomfortable and burning pain in my arm. I have just started an antibiotic for a sinus infection so maybe if we clear that up my immune system will settle down.
For those of you having done the IV solumedrol- if you would share your experience...I'll share my concerns- Will i be too hyped up or weird to go to work or take care of my kids (single mom)? I'm worried it will make me manic (this happened with antidepressants). Will I feel the IV port in my arm? They said they leave it for the three days and that creeps me out. Troubles coming off of it? Do you notice relief from things like spasticity or nerve pain or is not that sort of response?
Pokey-do you do your own injections or have family member do? Thanks again everyone.

Thanks Gretchen- that's very good feedback. And I think that if I'm still able to get to work and get around, albeit with more difficulty and pain, then it's not really enough for the Solumedrol. It's nice to know more about it so that I can at least consider the option if I get worse. Starting back on Avonex soon may help. - W