This Is MS Multiple Sclerosis Knowledge & Support Community

I need to understand this whole solumedrol thing. I am having my first major exacerbation in almost 5 years since my diagnosis. I realize how lucky I am that I have not had to have Solumedrol since thie first go round. I blame it on my being not so lucky as to having to have had 3 surgeries in 2006, with the last being this past November. I believe that is what triggered this flare. Anyway, since I haven't had Solumdrol for so long I can't remember much about it. Can anyone share their experiences with me? I am specifically interested in side effects, results after treatment and anything else you may think is significant. By the way, this particular flare is nystgmus and double vision. The optic nerve itself is unaffected. I am on a 5 day course starting today. Thank you for your help.
Lori

Lori,

I can tell you from my experience....

I was put on a 4 day course of IV Solumedrol in June of 2005 for the exact same thing; Nystagmus (right eye). I had no side effects that I know of (except for maybe some mild weight gain), and my nystagmus went away about 4-5 days later. I recovered 100%, meaning I didn't have any other visual problems. So my experience was good. I hope this helps some.

Brock

Lori,

I forgot to mention how lucky you are to live in Naples, FL! I love it there. I've only been once, but it was such a great city. We went there on the way to Marco Island. The whole are is a paradise to me, compared to Missouri anyways. The only thing that was bad were the Mosquitos (ouch).

Brock

Brock
Thank you, that's good to know.

We really like it here in Naples, although it is changing a lot. Growing quite a bit. We moved here from Ohio to get more sunshine and warmth. Never looked back!

I hope to have the same luck with Solumedrol. I hope to also hear about others' experiences. The only time I was on it I had success also. It was just so long ago and so many other new things happening to me that I can't remember the specfics.

Thanks for your help!
Lori

Lori

I'm so sorry you're having a relapse.

I haven't had solumedrol so can't comment on that, but since you mentioned nystagmus I thought I'd mention memantine. It's something I came across in my reading about neuroprotection but I have no idea if it's applicable in your situation.

There’s been some research suggesting memantine is effective for “acquired pendular nystagmus” caused by MS.

Therapeutic Considerations for Eye Movement Disorders

Acquired pendular nystagmus, one of the oculomotor syndromes often caused by multiple sclerosis, results in the severe impairment of reduced visual acuity. Memantine, a weak NMDA antagonist, has now been proven effective here.

It might be something to check out with your physician.

Meanwhile, I hope your treatments are going well and the relapse is a short one.

Sharon

Everytime I have had a bad relapse I have had steroid treatment. It has worked for me everytime. Vision problems were gone within the week. I had a very bad relapse where my co-ordination of everything below my neck went so i couldnt walk - this time the steroids tok a bit longer to work (4 weeks -ish).

I had a few side effects but nothing that would stop me going again!!

I had loads of evergy (which is a novelty to me - so i enjoyed that bit), hungry and thirsty all the time, and my face went a touch rounder and I gained a few punds (probably as a result of too much chocolte ) but the side affects are no big deal to me. After the steroids I get sore skin for a few days and cant carry bags etc. But these are nothing compared to how you feel when you have a relapse.

Hope you are well again soon

R

Sorry to hear about your relapse Lori. My side effects were also a bit of a round face and insomnia. The energy was great as mentioned above and the recovery was quite good, not perfect for me.
Good luck, take it easy for a while, your body has had enough with all these surgeries. Carole

Hi Lori-
Sorry for the exacerbation-that sucks!!
On the subject of Solumedrol, my neuro put me on infusion for 3 days last year. I had been feeling great but apparently my MRI was awful.
The side effects they warned me about DID NOT happen (weight gain, ravenous hunger, and hyperactivity) but what DID happen was it knocked my immune system out and I got a terrible sinus and upper respiratory infection. I missed 7 days of work, lost 13% of my body weight, then they put me on antibiotics (which I had never had) and I had a reaction to that. Obviously, everyone is different, but if I had to do it again I would just do the solumedrol and then stay home, away from germs as much as possible. I NEVER get colds, flu, or anything, well, except MS, but that was a definite lesson for me.
Best of luck to you-

Lori, I was having a pretty extensive exacerbation when I had solumedrol so it didn't work instantly to resolve all my problems. I do remember that it gave me much more energy and a VERY healthy appetite. I still haven't lost the weight I gained while I was on steroids 3 years ago. It definitely improved my condition but it also made me a basket case. My emotions were through the roof. I would start crying and have no idea why. So watch out for the mood swings and over-eating. I was having problems sleeping already because of bladder problems so I'm not sure if it gave me insomnia. Good luck. It seems like it really helped those who had eye problems.

Lori- do you know how long you will be on it?

I wasn't having any exacerbation that I was aware of prior to the treatment with it, and when I got so sick later I was pretty p.o.'d, like I'd been duped into taking it, which was a typical response from me at that point in time. Luckily I haven't had to have it since.
It really does seem to help- I think the tech. told me it was like "taking a baseball bat to a whiffle ball" as far as knocking back a exacerbation.
Best of luck to you-

Thank you all for your help. Here's my update. I finished my last dose on Friday (it was a 5 day course) and my s.e. were as follows: low energy (bummed about that because I was looking forward to just the opposite), really upset stomache, some weight gain and "moon face", mood swings, and general not feeling great. I hope these will dissipate quickly. I think, on the positive side, I am starting to see some vision improvement (I had better!!) and hope to continue over the next few days. Interestingly, I feel the tingling that I have in my left had has slightly worsened. I hope that is just a temporary thing.

I had an MRI last Wed. so should be getting results this week and then will know better what's up. Thank you all for your support!
Lori

One of the side effects of a steroid such as Solumedrol is that it can elevate blood sugar levels. As such, administrators of the treastment monitor these levels carefullly. In some patients, it can create temporary diabetic-like symptoms. Also, those who receive Solumedrol and/or oral Prednisone regimens may be more vulnerable to infections for up to a year following treatment. There are a number of other possible side effects which you can learn about by consulting with your health care provider.

And with elevated blood sugar (glucose) the pancreas is stimulated to secrete more insulin!

Update: I got some vision improvement with the IV Solumedrol. Most of the nystagmus has resoved. The neuro told me last week that I could continue to have improvement but if not to call her. Well, over the weekend I felt the double vision had started to return a little. So I called the neuro yesterday and she started me on oral prednison taper. I thought in the past that they used to do the IV Solumedrol and then oral steroids automatically. Now it is only if the Solumedrol doesn't clear things up by itself. So my next question is who has had to do the oral steroids also and how has that gone? I am starting to become frustrated by all of this and also a little discouraged, so any help is greatly appreciated.

Thank you
Lori

Hey Loriyas,
Glad to hear the solumedrol burst is over, but yes, it's a major bummer when you find that you have to hit the ORAL steroids too! I do a solumedrol "burst" every two months in order to keep exacerbations at bay. (Diagnosed Feb06, without a MAJOR flare since I began the bursts in August 06) I hate it... HATE IT. What dose did they put you on for after the infusion?

I got married with a moon face... it was a major bummer to see my photos and feel like the whole day will be remembered as "wow... she really let herself go". However... it was SO much better than having my hubby come down to kiss the bride in a wheelchair! Or have to decorate my cane ("pimp stick") in order to make it match my dress.

After the burst, I do a four week taper from 80mg, to 60, to 40, to 20... then 10, 5 and I continue on 5 as a "maintenance dose" for my Lupus (joint pain). I am forever on steroids... and have been for WAY TOO LONG. However, with smart diet, exercise, Nexium (for my tummy), and the confidence to show everyone my apple-cheeks without hiding... I'm happy to be healthier than I was BEFORE I did the 'roids. What are your docs thinking about for a long-term plan of steroids?

My major side effect with the solumedrol: ROID RAGE! I would get FLAMING mad about stupid stuff (couldn't open a bottle of tylenol and ended up throwing it against a wall and exploding it everywhere... VERY unlike me) I would cry, throw fits... and essentially act like I was 2 years old and not getting my way. I still do this every time I get my burst for about three days. Hubby just lets it run its course, puts a hot pack on my neck, rubs my back and bit... and tells me to go put on my big girl panties and go on with my day.

Keep me posted on your side effects... I am a good ear (eye?) most of the time... except every-two months for about three days. Then run. And hide