REBIF and Itching, Hives

[sllowe]

Hi All,

Has anyone had itching, hives, bumps, etc., while on Rebif?  I'm not sure what the monkey is going on w/me.  I'm in my 5th month, and this is the 1st occassion of this problem.  

It may not be Rebif, it might be something else, but I'm putting this out to the experts.  I've haven't changed detergent, nothing.

Tonight I bought some topical stuff, antihistimines (orally) and me don't agree, and I will only take them if desperate.  Since Sunday, I get hot red spots, then itchy, then welty spots, no rhyme or reason, anywhere from my ankle, to my earlobes, back, arms, head you name it.  Each spot, comes, then goes, thank the good Lord, but then goes to another area.

What the heck IS this? I'll take whatever input you've got!

Can't imagine what poor dogs and cats experience with fleas!!!! Yikes!

thanks,
SL

[Jaquin]

Yes, I believe it can be the Rebif. I was on it successfully for about 7 years and then it is like I became "allergic" to it. Itching, red patches on my face and actually vaginal issues that I thought was a yeast infection. It was a "necessary evil" in that it initially stopped lesion progression in my brain. But, somehow, it's like it built up in my system and then became toxic. I am working closely with my doc to stay medication free for now and see where it takes me. Due to some of the painful symptoms (vaginal), I am very distrustful of being on a medication again. Would prefer to be super regimented with my diet etc. and try to treat holistically.

[yselina24]

Hi
I was just recently diagnosed with MS and one of my symptoms was itching and hives.  This usually happens when i take a shower, or exercise. I have not started any meds yet for MS, but I thought it might be releted. Anyone else have itching before treatment?

[Jaquin]

MS (the lesions) play with your brain / nerves so itching is completely normal. I have some weird areas that always seem to itch since being Dx.

[sllowe]

Thanks Deb,

I'm glad to know this.  Do you know what they looked at to determine if it was the rebif?  Did she stop treatment and then resume it? I think that may be the only way I really know, unless the allergist has other thoughts.
Also, I hate to even ask, but was her reaction like described above (mine and also Ms 4 ltr word's)

Thanks again for your thoughts,
SL

[Deb61]

Dear SL,

My sister has had an itchy skin rash.  Her dermatologist said that it was an autoimmune skin disease, but when she told her neurologist, he said that he thought she was having an allergic reaction to the Rebif.  He doesn't want her to ever take the Rebif again and has ordered Tysabri.  An order was also written for Copaxone until the Tysabri is approved and she's able to start it.

Deb

[sllowe]

Hi there,

I so appreciate you sharing this with me, and our forum.  the post is right on time. Unfortunately, I did stop the Rebif, because I felt I just had to know, and my Neuro consented to it, very reluctantly and said I guess you could stop for a few weeks, to be conservative.  I do believe that it was my sleep meds too afterward, because taking them, flairs it back up. Just don't know what came 1st, the chicken or the egg.

I've been a mess the past 4 weeks, and don't have my Drs coordinating anything for me.  I've researched so much on my own, and feel that it is the meds, just don't know what to do about it.  I can't handle the doses of prednisone, and am now on nothing, and have lingering problems which include burnt feeling skin, fluid underneath, etc., can't be on my feet for long, or they and my legs swell and burn.  I can't put any pressure on my body, or the fluid goes to it.

I feel like my body is just acting/reacting like it hurt.

Any information you can provide that was discovered by your allergist would great.  I'd like to go in armed with info, and knowledgeable of what can and has happened.

Again, thank you so much for posting this, and welcome to our family. I hope you stay with us.
be well,
SL

[Momzilla]

Hi!

Thanks for the info!  I'm sure SL will be glad to hear it!

Is this your first post?  If so, Welcome!  If not -- I feel so foolish!

I'm sorry you had the reaction you did to such a great medication.  Is it going well now? Sounds like it's a challenge.  My son takes Singulair for asthma, and it has been his wonder drug!

Please share more of your story, if you'd like (if you haven't already -- I'm so bad at remembering everyone.  Please forgive me if you have posted before!).  We'd love to hear more from you!

Momzilla*

[msisafourletterword]

Hi,
I've been on Rebif for 2+ years now, and I had an occurrence of hives about 6 months after I started taking it. I didn't have another incident until a few months after that one, but then they were consistent--like, everyday consistent--and I ended up going to an immunologist to get some help. After months of trying antihistamines, he finally consented to an allergy test and ran panels on every basic allergen. I was very mildly allergic to cats and white oak, but not enough to cause a reaction like full-body hives and angioedema. Especially since I've been around cats and trees for my entire life. So, anyway my immunologist, neurologist and I reached a consensus that it was the Rebif. Needless to say, my neurologist didn't want me to stop taking it because I haven't had a single relapse since starting it, and I didn't want to quit taking it for the same reason. So, I've been on hydroxyzine and Singulair for the past few months and haven't had but one or two tiny hives since. The hydroxyzine in very mild and doesn't leave you feeling "hungover" the next morning, and the Singulair has no drowsy side effects. Just wanted to tell you this so that you wouldn't be afraid your doctor was going to take you off of the Rebif. He might, I don't know. I guess it's all about benefits outweighing side effects/risks, but my doctors didn't, and I just wanted to tell you that. Good luck!

[sllowe]

Hi there,

Well, I think the benadryl is wearing off, it's starting up again, but it's not as severe.  I've put the call in, but haven't heard anything back yet.

db1 - I only had the flu-like symptoms w/Rebif, and it took some getting use to, but they did go away after awhile.  The MS lifelines nurse was fantastic, and very accessible.  I wish you all the best w/the Rebif.  And, thanks for your advice, when I read your rash thread, it was totally the same. .

KITT-KATT - See you next week, we'll catch up soon,

I'm hoping this is just some sort of a itch - glitch in my system and it's overreacting. . ha/ha
Will keep ya's posted
SL

[kitten o]

HEY GIRL I READ YOUR POST
I HOPE YOU GET IN TOUCH WITH YOUR
DOC. BECAUSE HE NEEDS TO NO WHAT IS GOING
ON, LET US NO WHAT HAPPENS.
SEE YOU NEXT WEEK. I WILL BE IN TOUCH.
FEEL BETTER SISTER,
KITT

[doublevision1]

To answer your question from the previous thread, I got the same hives/rash just like you describe above, back in the Fall.  It came on about 6 weeks after the beginning of my relapse, and about 2 weeks after Solu-Medrol treatment.  My neuro did not think it had anything to do with the MS or the treatment.  It seems suspicious that it's somehow not connected, given I have never had hives before in my life.  I took both oral and topical Benadry and it was soon under control.

Let us know how you make out and what if anything you think Rebif may have to do with this.  I start Rebif next week and am keeping fingers crossed that it doesn't disagree with me.  

Another thought --- have you tried calling the Rebif patient support program to tell them about the hives?  Perhaps they have heard from other patients with the same problem?

Good luck to you.

db1

[Jxtower]

Thanks, i just started rebif and the iching  is driving me nuts

[sllowe]

Sorry, I forgot to thank you, so, thank you so much.  Always just the right amount of "giving me the business" when I need it most!!!!!!!!!

SL

[sllowe]

Quix - You sure do know exactly what to say, to make me do something.  I like it though, because I'm not good at taking my own advice.

I couldn't take it anymore, and took a benedryl when I got up this am. It's actually working, for now.  I guess I will know more when it wears off.  I'd hate for it to be the Rebif, because I don't want to go off of it, and then return, and have to get use to all the side affects all over again.

I'll call when the office opens, and let all know what happens.

SL

[Quixotic1]

Hmm...as someone who did her postdoc work in Immunology and Allergy, hives are considered a Major allergic reaction.  Your doc needs to know ASAP.  Other causes of hives are many, but an infection is most common, at least in kids (especially strep throat, vaginal yeast infection, sinus infection, some viral infections - esp. Hepatits)  But, the proplem with hives is, if they signal an allergic reaction to the drug, the next time they might not be  just hives.  They can escalate at any time to airway problems or cardiac collapse.

Let your doctor know!  If they are bad, and they sound it, a Medrol dose pac might be in order (3 to 5 days of oral steroids).  Don't take another dose until you talk to the doc!  Call and call until you see him.  If at any point you feel itching or swelling in your mouth or throat call 911.

Hear me???  I mean business; I'm not just a pretty face around here.

Quix