Wednesday, July 1, 2009

No way back. No good options left.

As he entered the waiting room, a large, friendly sign instructed him to be seated and wait for his name to be called.

"God will be with you shortly."
The neurologist has disengaged. He didn't offer any treatment courses to help manage BR's symptoms. When we brought steroids back up as an option, his response was "OK. Do you want oral or IV?" I got the distinct impression that he didn't think there was anything that would help, and he would have prescribed hemlock if we asked for it.

So I turn to you, dear readers. Do you have any experiences or advice regarding the difference between oral Prednisone, or IV Solu-medrol?

The Wheelchair Kamikaze warns of a side effect called Avascular Necrosis, which he got while being treated with IV Solu-medrol.
I have the condition in both shoulders and both hips, which now often feel as if they're made of razor blades. If I were healthy, I would have already had two total hip replacements. Since I'm in no shape to undergo the surgeries and subsequent rehab, I'm left with hips and shoulders that vacillate between intense pain and "holy crap I can't believe how much this fracking hurts crap crap crap" pain. Take my advice, don't get Avascular Necrosis.
Lisa Emrich has a nice article on Health Central summarizing the more common side effects.
In 2005, I was in the process of being officially diagnosed. After the results of my Lumbar Puncture came back, I was called into the neurology center to begin a 5-day adventure into SolyWorld. One of the other MS patients already hooked up mentioned that it was like “PMS in a bag” - a description he and his wife had lovingly coined.
WebMD offers:
Intravenous (IV) corticosteroids may work faster and have fewer side effects than oral steroids alone. Treatment with IV methylprednisolone may be followed by treatment with oral prednisone or oral methylprednisolone. Toward the end of the treatment, increasingly lower doses are used so that the body can recover its own ability to produce natural corticosteroid hormones.

Corticosteroid treatment does not work for everyone. In some people who have severe or frequent attacks, corticosteroids are effective at first, but become less helpful after repeated use.
Hmm. So we may just be getting a short period of better quality of life at the risk of some pretty severe and permanent side effects. Maybe we can play a timing game. A round of steroids now to help get through the hot Texas summer months. A round in November to help get through the holidays.


Lisa Emrich said...

For my first major attack (optic neuritis in 2000), I took oral prednisone at the equivalent amount that IV would have been (1000mg daily). I didn't have insurance at the time. Personally it was extremely difficult on my body and took a long time for me to get over the steroids. But I've since learned that I can't take oral prednisone....period.

Now when I have a major attack, I do 5-days IVSM followed by an oral Decadron taper (still a steroid but not prednisone). Still feel like crap for about 3 weeks, but it works.

Some folks get a monthly 1-day IVSM pulse infusion to keep the MS a little less active. This is used more for folks who are having break through disease (or symptoms?).

If it is convenient enough, I'd probably ask for 3-days of IVSM maybe even delivered at home. It would be good to see if the steroids have any impact on the symptoms with some possible relief.

BTW, I tried doing a taper-only round of oral steroids once for a minor attack. It did absolutely nothing for me.

Hope you guys are doing better soon. Try to stay cool with the heat.

Cranky said...

Steve - skip hasn't taken steroids since she used to have them in conjunction with Cytoxan (chemo). I'd have to say Cytoxan is the only treatment she ever had that seemed to really stabilize her for the entire 1+ years she was having it. It was hard for 2 days following chemo/steroids (basically had incredible headaches, jaw locking and took lots of lorazepam to treat), but for the remainder of the month, she seemed to be in a good, stable state.

Sounds like the neurologist isn't happy dealing with someone in BR's situation. Are there alternative neuro's in your area?

Living Day to Day with Multiple Sclerosis said...

Steve, I can not believe the way the Dr. acted towards you. I am sorry about that.

As for the steroids... I have tried the oral but not very much luck with helping me at all.

When it comes to the infusion... It has always stopped the symptoms of the attack very quickly. On the down side... When I get them I get 1000mg a day for 5 days. in that time I do put on 5-7 pounds each day. A lot of MS'ers say they love them because they get lots of energy and feel as though they are MS free for awhile. For me they I love that they take the Attack symptoms away but I have negative side effects from them. Most people do not. So I am not saying this to you to scare you.

If you are looking for a faster remission then the IV steroids are the way to go in my opinion.

Good Luck!!!

steve said...

Thanks for the additional data points, ladies.

BR has started a three day course of 1000 mg/day oral Prednisone. So far, so good. Appetite is up, which is a big plus.

Diane J Standiford said...

Oral prednisone made me feel "unwell," the IV always made me feel WELL. I took the oral ONCE and never again, IV on/off for 8 years---all good. (Though the good effects eventually died down, BUT I have a friend DX just like me and she STILL takes it every onth or so and swears by it, she IS doing very well too. (20 yrs out)