This Is MS Multiple Sclerosis Community: Knowledge & Support

I am a longtime thisisms fan but this is my first contribution. I am very grateful to the regular contributors who have helped me through many struggles along my journey.

I was diagnosed 5 years ago and was on Copaxone successfully up until a few months ago when I began to have an allergic reaction in the form of hives. It took a long time for me to associate the hives with the Copaxone because they weren't immediate and I had been on the drug for so long. When my neurologist suggested taking a week off the drug, the hives completely went away.

My neurologist then encouraged me to go to one of the interferons and we decided on Betaseron. I wasn't thrilled with the flu-like symptoms but was committed to making it work. My first injection was on Wednesday and that went OK but I had the worst hive reaction yet on Thursday night and into Friday. Both my neurologist and the Betaseron nurse agreed I should discontinue immediately.

I am meeting with my neurologist tomorrow to discuss alternatives. Both drugs (as do Avonex and Rebif) have an agent called mannitol and I'm afraid that is what I've developed the allergy to. I'm nervous about what he will suggest and feel that I may get bumped up into a heavier hitter - Tysabri or another - not because of breakthrough in my disease but because of this allergy.

Has anyone had a similar experience? Or does anyone have advice as I face this next step in the process.

Thanks so much!
Katie

I have no similar experience nor have heard of any but some MSers suffer from Lean gut syndrome and one of the tests to find if you suffer from this syndrome includes mannitol absorption.
I don't want to mislead you but have you ever heard of LDN?
My wife takes it as some others do and has no side effects at all in long term use except some insomnia the first few days, do your search!

There is no mannitol in the powdered form of Avonex. Here's the list of ingredients...

Essentially, it's just the Ifn-B+albumin, in a phosphate buffer at physiological pH.

NHE

By the way, if you do decide to give the powdered form of Avonex a try, then you might also want to read my injection technique thread.

I've also posted about using ibuprofen to counteract the side effects and injecting off to the side of the thigh muscle instead of in the center of the thigh muscle in order to avoid hitting a nerve or blood vessel.

Let me know if you have any questions and I'll try to find the posts for you.

NHE

Wow - in my nervous quick search I somehow missed this. I think I probably misread a connection with REBIF. Do you feel that powdered form of Avonex is better than pre-filled? I have a feeling Avonex will be my next step. I had been very clear internally that if I had to take an interferon there was no way it would be that inter-muscular injection. Oh well - time does change things.

I'm also intrigued by the leaky gut connection and mannitol. I am quite sure I will be seeing an allergist and this will be something I discuss.

Thanks for your input!
Katie

I started on the powdered form of Avonex before the prefilled syringes were available. I have chosen to stay with the powdered form. Adding water to the vial is no big deal and takes less than a minute. The powdered form is also more stable and can go 30 days at room temperature without refrigeration which makes it ideal for traveling. In addition, several people have reported increased side effects when using the prefilled syringes. I'm not sure why this occurs. It could be due to the different pH buffer, i.e., 4.8 vs. 7.3 (the latter is more physiological), but I don't know this for certain. I do know that variations in pH can affect protein structure. Again, this may or may not be involved with the side effect issue.



The IM injections aren't so bad once you get used to them. I find that t's important to keep my leg relaxed with no tension on the muscles. I also find that if I inject off to the side of the upper thigh going vertically down then there's usually very little bleeding (and sometimes none at all) and less discomfort. Avonex also has an advantage over the other Ifn-B's in that since it's an IM injection, there are no injection site reactions. The worst I've gotten is a small bruise but this goes away after a couple of days. I attribute the bruising to poor injection technique (I was either in a hurry or not paying too much attention for some reason) and haven't gotten one in some time. In contrast, the literature for Betaseron describes the injection site reactions as "injection site necrosis" which occurs with the subcutaneous injections (a similar situation exists with Rebif which is also give via subcutaneous injections).



Sure. I hope it was helpful.

By the way, I'm not saying that Avonex is a miracle drug for MS. Clearly it is not. However, it does have some advantages over the other Ifn-B's.

NHE

this has nothing to do with mannitol or hives (well okay a little bit of hives at the end!), but since we went to leaky gut...
on leaky gut and zinc, in vitro

Zinc Deficiency Induces Membrane Barrier Damage and Increases Neutrophil Transmigration in Caco-2 Cells1,2
Alberto Finamore3, Mara Massimi4, Laura Conti Devirgiliis4 and Elena Mengheri3,*
2 July 2008.



zinc is low in ms patients (although often inside the "normal" range the level is not "optimal"), it is implicated in optic neuritis a common ms presenting symptom, and it affects membrane integrity (intestines, blood vessels, blood brain barrier). for starters

50mg zinc per day for MS patients!

HTH, although rather sideways from the original question

JL

ps: my manager came in from some outdoor work in december and said she was getting hives from her cold allergy. the ensuing discussion about herself and her family's various health issues pointed, from many different directions, to a lifestyle-based zinc insufficiency. i will have to check in with her on whether she started a zinc supplement in the last couple of months, and whether she has noticed any difference.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Met with neuro today and started the process of filling the Avonex prescription. I also made an appointment with the allergy doc for Friday afternoon. He's skeptical about the mannitol allergy theory and will do a complete workup for hives - whatever that means. I won't start the Avonex until I'm sure what's causing this. I don't want to keep eliminating drugs if something else is at the root.

I appreciate all of the input and will report as I learn more.

Again, thanks!
Katie

What a journey! After a lengthy discussion with the allergist and 2 very interested interns, we discussed the possiblility that it may have been the ibuprofen that I reacted to instead of the Betaseron. As a result we scheduled an ibuprofen challenge test. Last Tuesday I reported to his office at 7 am and began ramping up the dose of Advil - first 1/2 tab, one hour later full tab and one hour later (at which time I had already started to feel itchy) 2 tabs - well that sent me into full blown hives, a quick dose of Clarinex and definitive conclusion.

The allergist feels that for some reason I developed a case of chronic hives from the Copaxone. He said that in 30% of cases of chronic hives, ibuprofen will trigger the reaction. This is what was happening with me.

So, instead of taking Avonex I am back to taking Betaseron with Tylenol instead of ibuprofen. I've taken 2 shots and had no sign of the hives.

I wanted to share this with the group in case it happens to someone else. I have seen online posted reports of several longtime Copaxone users developing chronic hives. I now know that if I tried the Avonex with the ibuprofen I would have had the adverse reaction to that too.

I've appreciated your input and hope maybe my journey will be helpful to someone else out there.

Katie

Hi tomkats,
It's good to hear that you were able to discover what was causing your allergic reaction.



There is nothing that specifies that Avonex must be taken with ibuprofen or that Betaseron must be taken with Tylenol. If Tylenol works for you for counteracting Ifn-B's side effects, then that's great. It's likely then that it might work for you with Avonex as well as Betaseron.

In addition, some people on the forum have reported that Alieve, which contains naproxen, works well for them. I happen to find that naproxen is quite hard on my stomach while ibuprofen is not. Moreover, there have been other posts that reported that people have had good luck taking an allergy medication containing an antihistamine to block the side effects. I tend to be quite sensitive to antihistamines so I stick with ibuprofen. However, you should use whatever works best for you.

If the injection site reactions that typically appear with Betaseron use aren't bothering you, then stick with it. However, there are still advantages to Avonex in that it produces almost no injection site reaction since it's an IM injection. You may just need to use a different drug to counteract the side effects.

NHE

Thank you for sharing that experience.

I had a similar episode after using rebif, as if the side effects alone were not enough. For a week I sported a tribal war paint called calamine from head to toe, I felt so pretty.

I have yet to pursue the "further" testing of the actual allergen because I wanted nothing to do with it further. I see my stubborn ways are not educational.

After reading your post, I think I should have pursued the testing and possibly will still do it. I see there is a value in knowing beforehand what our bodies will develop issues to.

Interesting about the ibuprofen instigating a reaction, this is the first time I've heard of it. It is good information, thank you for the follow-up.