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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.
I am not sure if there is anything non steroid, but I do wonder is there another
type of steroid injection like Predisone injection that could be used for that???
since your allergic to the other. You could ask your doc on that one.
maybe someone will be along soon with a better answer for you.
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 not sure if there is anything non steroid, but I do wonder is there another
type of steroid injection like Predisone injection that could be used for that???
since your allergic to the other. You could ask your doc on that one.
maybe someone will be along soon with a better answer for you.
Gollie
ON treatment,
Look under the post by MOM if you get a chance.
Gollie
Oh man, that's crazy! The very thing that stops allergic reactions in there place, jacked you up!!!
Not sure why they did not write up a script for the prednisone. Think like Gollie says, best to ask. Don't want to mess around w/the eyes. . .
be well,
SL
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.
I'm glad you were able to continue with them and that they have had some good effect on your symptoms.
db
You brave little Med Challenger YOU!!!
After all you've gone through, and I know it's a lot, you still did it. I'm glad you've made it semi-out-of that allergic mess.
Hang in there, wish you didn't react to the free forumula, but at least your alright.
Hope that Copax does you well.
I'm very proud of you! Hope you are giving yourself much credit over this latest feat!
-SL
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?
Thanks