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Muzzkat posted:
Can I get some feedback from people who have done the Solumedrol IV series of steroids?
They say: MS, you don't get it unless you got it. Well...I still don't get it! ;^)
mmthlvr responded:
I've done a 5day treatment, by time they hook up the IV & all the prep, it took 1.5-2 hours. It leaves a nasty taste in your mouth so bring gum, mints or anything fairly strong to help with the taste. I also drank a lot of fluids & took valium to help me sleep.
Make sure you tell them if there is any burning or itching with the IV. They had to slow mine down, started itching & turning red.

It does not hurt & it really did make a difference. For me it was really expensive, $750 per day, I have insurance but it still was quite a big out of pocket expense. I couldn't afford to do it through an IV the 2nd time so I did what's called smoothie medral. You mix the Solumedral with any type of fluids, smoothie, shake or whatever. I was the worst thing I ever tasted in my life & my taste was not right for weeks.

Now I just do the taper oral steroid, works good, cheap & really no side effects except it is still hard to sleep, Valium!!
Are you going to be doing this soon? Please let me know how it goes.
duchessmom responded:
The solumedrol worked like a miracle for me. I had lost most of the vision in one eye due to optic neuritis, and I feared I would never recover it. (Lots of pain, too.) My doctor sent me for three daily i.v. treatments of 1,000 solumedrol. Within hours of the first one, my vision started to improve -- when I woke up the next morning, it was all back! All of it! Colors, detail, focus. And no pain. I was delirious with joy.

I've had the treatments twice now (the optic neuritis came back about six months later), and the second round worked just the same.

Some people have it done at home, if their insurance covers it -- mine doesn't, so I go to an infusion clinic at my MS center. It takes about an hour. Everyone gets different short-term side effects. A lot of people get a metallic taste in their mouths, so get some hard candies. Don't eat big, heavy meals -- can make your heart speed up. Some people get a "high" and clean closets at 2 a.m. -- I was the opposite, so leaden-exhausted I could barely function. The first time, the i.v. treatments were followed by two weeks of oral prednisone, the second I didn't do that -- the results were the same, and the second time I was spared the side effects of the prednisone.

To others reading this post, especially any doctors, I wonder how many times you have the treatments? I'm a little concerned at having to have it twice in six months -- how many treatments before the long-term cumulative side effects build up, so the drawbacks outweigh the benefits?

Good luck Muzzkat -- please let me know if you have any specific questions -- I was so scared the first time I had it I started to cry in the chair, so if I can help you feel more comfortable, I'd love to help.
Rory26312 responded:
Hi Matt

I've had steroids four times in eight years and usually find it very effective.

I've had all the side effects the others had but I will not do it without the oral taper again .

The home treatment is nice and easy to do but not all doctors prescribe it and not all insurance covers it.

Duchess I do not know how often is too often but twice in six months sounds like a lot.

Muzzkat replied to Rory26312's response:
Thanks for all the input! I'm doing 4 days @ 750, instead of 3@1000. I haven't had any of the amped up feelings. No sleeping problems. No real noticeable effects other than an increased appetite?

As far as I know there are no plans for further steroids. Rory, not sure what the oral taper is? Guessing it's a way to ween you off the steroids?
They say: MS, you don't get it unless you got it. Well...I still don't get it! ;^)

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