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Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/7/2008 7:19 AM (GMT -6)   
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,
Gretchen       co-moderator MS board       diagnosed with MS July 2006


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 5/7/2008 4:02 PM (GMT -6)   
Hi Willowmom,
Welcome to the board. You found a great place here with alot of great people to talk to. It is, so nice to chat with folks who know how you feel. Good luck with the switch of the meds and let us know how you are doing.
Take care
Lynn  :-)
Dx MS Dec 06, Started Tysabri March 2008, Baclofen, Cymbalta


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 5/7/2008 5:37 PM (GMT -6)   
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)
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 5/7/2008 7:30 PM (GMT -6)   
Hey Willowmom!

Welcome to the board! I agree with Gretchen...what a story! Sounds like u’ve been around the block on this Avonex thing, but are being quite a trooper about it! Good for u! Hang in there friend. I didn’t realize there was a difference in the ‘types’ of Avonex, but now that I know I’ll be so curious to see the difference in how u respond! Please do let us know how this goes for u.

I’m so glad u decided to post! This is a wonderful site as, no doubt, u’ve seen. The people here will do all they can to support u and help u get answers to u’r questions. Please feel free to post and let us get to know u! Again, welcome to the board!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 5/8/2008 11:26 PM (GMT -6)   
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.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 5/9/2008 7:32 AM (GMT -6)   

Hey Willowmom,

I did five days of solumedrol last spring.  The IV port was fine.  They wrap it  in a very secure stretchy sleeve to keep it from being in the way.  My home health care nurse gave me the option to have the IV started each day or to leave the port in.  I chose to leave it in rather than to play "find the vein" for five days in a row.  I was much too ill from the flare to work.  I wasn't up for doing too much.  My worst side effect was that the first night I had trouble sleeping.  After that, it was the horrible acid reflux that you get.  I did not taper off with an oral steroid (that is supposed to be really helful) so coming down from five days of the IV steroid was a bit rough.  The solumedrol does make you feel pretty energetic but I was not walking too well so it was hard to use all that extra energy.  I would only do the solumedrol again if I flared was as bad as last spring.  Again, I was nearly completely numb from the waist down and I could not walk too well.  I had deep numbness in my left leg and very bad spasticity. I basically was out of commission for about 3 weeks and it took about 3 months before it all settled enough to know what residuals I would be left with.  The solumedrol does not reduce disability, it only treats symptoms.  You have the option of NOT having solumedrol as it is supposed to be for symptom relief and it doesn't treat MS or keep it from doing damage. 

Love and prayers,

 


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 5/9/2008 11:27 PM (GMT -6)   
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

nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 5/15/2008 12:40 PM (GMT -6)   
Willowmom,

I'm coming into this post late, but I definitely related to your reaction to the Avonex. I have only been on it for a few weeks, so I am kinda new to it, but that first shot was horrible. It was worse than any flu I have ever had. At least the symptoms are getting better now. I have the prefilled syringes, but I do remember the nurse saying the symptoms weren't as bad with the powder form. I hope this works out better for you.

Kathy
Diagnosed with MS March 2008
Avonex         

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