First some background...
I received about 1/3 of a 1000 mg Solu-Medrol IV yesterday (was suppose to be the first of 5 for optic neuritis) when my eyes started to itch, then burn, then swell, and hives(about 10 minutes after the iv was started and progressed from itching to hives within about 3 minutes). I rang for the nurse when I felt them starting to swell, and by the time she got there they were almost completely swelled shut and hives were starting on my face and eyes.
Needless to say they stopped the treatment and pumped me up with Benadryl. Hives, redness, burning and some of the swelling went down within about 30 minutes of the benadryl iv.
Now the questions...
Have you ever heard of someone having such a reaction. The nurses and the MS Neurologist said they had never seen anything like it before. I have taken oral predisone in the past, and even had steroid injections around my eyes years ago for Pars Planits and never had any sort of reaction.
Are there any other treatment options for optic neuritis that do not involve steriods. The nurse told me there wasn't. I am concerned that my vision is not returning.
Went to cleveland Clinic for 2nd opinion. They suggested having my dr. try the solumedrol again with a preservative free formula. My dr agreeed, and I had the same reaction. I was much quicker to notice it coming on and had the benedryl shot immediately, and after about 10 minutes I was able to continue the infusion. I had the remaining 4 infusions by just predosing myself (orally) with benedryl. I basically was on benedry for a week - talk about tired. But the steriods made me jumpy and unable to sleep. To further compound the tiredness, my hubby was gone for the week on a required training for work, and I was home with 3 kids by myself!!! Basically a week from HELL!
That was only about 2 weeks ago, and I did get some noticable improvement in my vision, (even after basically waiting 3 months after onset to get the steriods )so I guess it was all worth it. Still not 100%, but much better than it was.
Also started on Copaxone after the round of steriods. Seems to be going well. been on it for almost 2 weeks now. Seem to be having more injection site reactions now than in the beginning, but other than that, no side effects to speak of.
I go back to see neuro in August unless something else occurs before then.
Last October, I broke out in hives two weeks after my first round of Solu-Medrol treatment. Since it was so long after the fact, I can't see how it could have been related. What is weird though is that I cannot think of any other possible trigger. The hives just appeared out of the blue. I did not eat or drink anything different and was taking no other meds. Whatever I was reacting to, it was not as bad as yours sounds. I just broke out in itchy, big red hives all over my body. They were in a symmetrical pattern on both sides of my body. Since it was two weeks later I assume all the steroids were out of my system, but I always wondered if there was a connection to the hives, since I can think of nothing else that might have caused them. Like maybe the steroids subsequently made me more sensitive to a particular food. I guess I'll never know. It did not happen again, with my next course of steroids.
I'm glad you were able to continue with them and that they have had some good effect on your symptoms.
I went Googling for "'solu medrol' hives" and here you were. I have to say that I was almost surprised to hear of a similar reaction from someone else.
I have been doing IV SM for about 2 years (1g/day at 3g/2mo at first and now 1g/mo) and never had a reaction until the last two months. The first time, my nurse set up the IV and after a few minutes he noticed I was scratching my leg.
"Oh yeah, I guess I am!"
On closer inspection, we saw that I was beginning to get some hives and the itching was spreading to my chest, back and arms. He slowed down the IV and put me on Benedryl. Both of us were shocked that something he would have been giving me if I were having an allergic reaction to something else appeared to be causing one! And I had never had a reaction to SM before. Curious.
The thing that occurs to me is that I have been changing my diet extremely. I've been moving toward the Best Bet Diet and have recently had food allergy tests, discovering that I'm allergic to everything: cocoa, wheat, oat, corn, pea, yeast, hazelnut, cashew, flax, apple, pear, navy bean, pinto bean, peanuts, almonds, ginger, walnuts, onion, garlic and crab. I was tested for 45 foods and was allergic to 25 of them. As it turns out I was having allergic reactions all the time but because it was so endemic, I didn't know it. Was it staying off all of these allergens that created an opportunity to notice the Solu medrol reaction? Hmm.
Anyway, I could use some help on this quandry...
My nurse was nervous about writing the reaction in his notes because he was afraid that the doctor might want to stop treatment while both he and I think it necessary. Does anyone have thoughts regarding this?
You don't know how much your story has helped me today!! I just got back from the doctor's office. I had have a shot of Benadryl..my eyes swelled up and my tongue did too!! I was on Solu-medrol for 5 days (iv), upon completing my treatment, I broke out in hives all over my body!! I was told by the doctor at the clinic that this was NOT due to the steroid treatmentf for my MS..she told me that she had never heard of this kind of reaction. I was so afraid that something else was wrong with me!! I guess I will continue to take Benadryll until my hives go away..I have just joined this forum, and I am so grateful for people like who for sharing your story and helping people lilke me. xoxo
DEAR LORI, BLESS YOU AND THOSE LIKE YOU WHO ARE NOT AFRAID TO CHALLENGE "the powers that be"!! GOD KNOWS I'VE BEEN THERE AND BACK! RIGHT NOW, I'M STILL UNCOMFORTABLE WITH THESE GODFORSAKEN HIVES AFTER RECIEVING BOTH BENADRYL INJECTION AND DECADRON INJECTION THIS MORNING. I HAVE SWORN OFF THE STEROID APPROACH AND WILL CONTINUE THE BENADRYL ORALLY. HOPE IT WORKS!! i'll keep you posted !!!! have I told you lateythat you ARE THE BST SISTER ANYONE COULD HAVE? I love you sooooo much, LYNNE
I have had the same allergic reaction about 20 years ago. All the doctors always insist that it is not possible but I was hospitalized hooked up to an IV, no food allergy possible. It is incredible that when I tell drs my allery they don't believe it. I thought i was the only one.
I know what you mean about solumedrol treatment and beinghome alone with the children. The orders are to go home and rest each day. HA! With two pre-schoolers, thatis IMPOSSIBLE. It would actually be easier on me to do it in-patient. Then people would know and understand that I need help witht the children. Hang in there. Oh yea, I itch for about 4 weeks after solumedrol. I know that I am allergic to al kinds of preservitives. I can't even use topical antibiotics because of the preservatives.
I am very grateful to read that other people have had a reaction to solu-medrol. I am very empathetic and sorry anyone would have to go thru such reactions but I have been going crazy with hives from head to toe after a solu-medrol injection. 3 doctors and they all say that sm would not have caused my hives. Then again each doctor barely even looked at me. I haven't slept more than 2 hours a night for at least 5 nights now. Nothing helps! Not Benedryl, Zyrtec, or any other drug, lotion, or cream. The worst part is, the hives are in my genitals as well, at least I think that is what it is! I'm beside myself and all the doctors can say is that solu-medrol wouldn't cause this and even if it did, it would be out of my system by now. What in the world do I do next?
Hello, it nice to meet u. I'm not sure if you realize this but, this is an old post. U might want to start a new post and ask your questions there some people on here don't read old post. Can u start a new post and tell us about yourself.
And, maybe someone can help u with your question. This is a great forum with wonderful people.......... Welcome to this group.
I don't think any of you are crazy. I have MS, and I'm also a doctor. I had never seen anyone have an allergic reaction to Solu-Medrol until I had one myself. It occurred after I had had it several times. I went to an allergist and asked to be tested, because I needed to know if this option for treatment had to be taken off my list. She told me it is very rare, but not unheard of, to be allergic to steroids. We did skin testing to Solu-Medrol, Solu-Cortef and Decadron. Only the Decadron did not react. So...it is not impossible. I now have my exacerbations treated with Decadron.
I wonder if we see this because we with MS tend to get repeated exposure to SM/Decadron. Something I'm planning on discussing with the allergist sometime.
My 16 year old daughter has had a reaction twice to oral medrol dose pack. Doc is very hesitant to put it on her chart as an allergy. She's been treated with it 3 times. Once at the age of 12 for a severe neck spasm. She was good until a couple of days after treatment when she broke out into hives. Her usual meds did not work so he started her on another medrol pack FOR the hives and every time she took a dose, the hives went crazy, so we stopped it. Fast forward to age 16, and doc treats her for another condition with medrol and day 3 into the dose pack she begins swelling her lips, eyes, fingers and nerve pain from her neck to her waist. He STILL doesn't want to call her allergic, but I had the nurse put it on her chart anyway.
I was searching for an alternative medication to medrol and ran across this site. I'm interested in the gal with the IV treatments that continued to take them along with Benadryl? Seems risky to me, but glad to hear it worked. Thanks for the info!
I'm not sure I would continue to see a doc that doesn't seem to interested in the evidence on front of him.
If you're talking about IV Solumedrol, it's a very high dose of methylprednisolone, the same med that is in the oral version. Oral methylprednisolone can contain as much as 32mg/pill. IV Solumedrol is 1000mg/treatment. Benadryl can take the edge off some of the adverse reactions, but if your daughter reacts the way she does at the lower dosage, I'd be very careful.
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