Periodic steroid infusions may stabilize/improve PPMS
A team of neurologists in Brazil has developed a protocol for PPMS patients involving periodic methylprednisolone (MP) infusions and has reported positive results so far. Their case report describes eleven patients who had a pre-treatment disease duration of 2 to 17 years and EDSS scores of 5 to 7. The treatment regimen included three MP infusions (30 mg/kg or 1.5 grams) the first week, two infusions the second week, once-weekly infusions for the next eight weeks, and then infusions every 10 to 30 days depending on how the person was doing.
At the time of publication, the subjects had been on the MP regimen for 5 to 14 years. EDSS scores had improved in nine subjects, with a decrease ranging from 0.5 to 3 points, and stabilized in the remaining two. Subjects with primarily cerebellar symptoms had greater improvement than those with primarily spinal symptoms. Improvement was gradual. No major side effects were observed.
While this was a small study, and didn't involve a control arm, the results are still interesting, particularly because there are no approved therapies yet for PPMS. The authors recommend establishing a multicenter trial to see whether these results can be replicated in a larger study. Just out of curiosity, are there any MSNews readers who have PPMS and who have tried long-term steroid treatment?
Yes - yes - yes. It was
Yes - yes - yes. It was wonderful while it lasted. I received it on a monthly basis for about a year during which time I and those around me saw pretty dramatic improvements in many areas. At one point I was walking 5 miles a day without any difficulty. Best of all I was able to greatly reduce other meds taken for other symptomatic issues.
I would still be on this today, except, I ran into an objection from my insurance company which refused to approve coverage for this when the doctor submitted an authorization request for another six months of treatment. Their objection, they ruled it experimental, and asked the doctor to submit the standard "multi center", random "double blind" test results demonstrating the treatment plan's efficacy. My doctor and I could find nothing published that would satisfy the insurance company's appeals committee requirement and I ended up throwing in the towel. If anyone knows of such information I would love to get my hands on it! I am not sure that this study from Brazil would suffice - but along with a couple of others it would certainly help.
I have on occasion sprung for a treatment "out of pocket" when I have a big event coming up - but at about $200 to $250 a month (including infusion costs) it is something that is a bit out of reach for me on a regular basis.
Hi, my experience actually
Hi, my experience actually is been good. I'M using solumedrol for three days each three months since a year and i feel better. I feel less tired and less clumsy to walk. My insurance company is not objected my treatment with solumedrol at the present. My exacerbations are been reduced to one in almost ten months that's
great for me.
You might talk to your neuro
You might talk to your neuro about prescribing a high dose of oral Decadron - another steroid drug (not sure I got the spelling right for the drug). My neuro feels (and some studies have supported this)that extremely high doses of oral steroids are about equivalent to the infusions and I prefer pill over the IV from a convenience perspective. I know they have cleared bouts of optic neuritis in a couple of days. My doc prescribed very high dosages (25-30 pills/day x 5 days) of Decadron, and the drug is very cheap and your insurance co probably will not catch on - I paid about $8 for the 5 day supply.
For some reason the
For some reason the infusions made me worse (remember everyone is different). However, for the last year I have taken 40 mg of dexamethasone for the 1st four days of each month. I have seen a big improvement in my stability, fatigue, spasticity, and a general feeling of wellness. The effects of the dexamethasone last nearly all month.