This Is MS Multiple Sclerosis Community: Knowledge & Support

It is an old article back in 2008, but I am wondering if anyone knows how it stands today. Anyone with ppms has tried such a regimen of steroids?



http://www.scielo.br/scielo.php?script= ... so&tlng=en

I was taking high doses orally every 3 months with my family doctors knowledge and approval. I took 1250 mg every second day for 0 dys then did a short taper. I always had great relief from spasti ity and some increased trength which would fade after a few short weeks. I enjoyed the periods of decreased stiffness and better functioning but did continue to progress. Maybe it would have been worse without steroids?

It has now been a year since I last tried this. I only stopped because I started intrathecal methotrexate treatment at a clinic in NYC and am hoping to get in to their stem cell trial. I would still be doing oral Prednisone if I weren't trying this. If you are interested in the clinic in NYC it is called International Multiple Sclerosis Management Practice. I need a few more months to see if the methotrexate is helping. I travel to this clinic from Western Canada and consider it worth it.

_________________
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

Hi Kate,
I just heard on the news last night that there's a prediction of a methotrexate shortage. It might be a good idea to check with your doctor to see if this will affect you.

28 cancer medications in dangerously short supply
http://www.cbsnews.com/8301-18563_162-5 ... rt-supply/

Supply of Methotrexate, a Cancer Drug, May Run Out Within Weeks
http://www.nytimes.com/2012/02/11/healt ... .html?_r=1


NHE

Wow, this is news o me, thank you for telling me. It seems fundamentally wrong to be le to increase prices eightyfold, or to stop making a drug like methotrexate that is life saving just because you can't make buckets of money. I know it's cheap- increase the price threefold but not 80. I think the kids with leukemia should get it first though.

I just booked very expensive flights to NYC for the last week of March so will check before I leave. I know they would phone if it were a problem.

Thanks again for the heads up.

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

I take 3gr every 8 weeks for over a year now. We did it based off this study and one that is for SPMS. He wouldn't follow the exact protocol because he said the steroids were bad for me in high doses. That being said I haven't progressed, I'm walking better, my blood tests are better, and I've lost 20lbs as of yesterday, since March 1st or 15th.

I don't get the worry over high dose roids, and I can't find anyone who has gotten high doses in a short time. I'm all for them!

Over how many days do you take the 8gr?

Whoa, 3gr lol. I do them over 3 days. I can't say I don't understand why steroids are bad, they can be nasty buggers from what the doctor said. I did get Bronchitis 1 year ago and my thumb got a fingernail fungus. I know some folks who take a daily dose of roids, they have lupus and RA, and the roids have given them skin issues, moon face, and other stuff I don't know about I'm sure. I'm not arguing with the protocol I'm on because it is working. I'm all for trying the other protocol based on the other results but if it could end up putting me in worse shape, no thanks. The doctor hasn't wounded me yet so I think I should trust him lol. A bit more experience than me with roids. Plus my memory isn't what it was so I may be forgetting some of the issues. As far as high dose steroids, I should have clarified, in the protocol I'm using, I'm all for them.

Whoops... my boo boo

I have taken prednisone for over 15 years now. I was originally wrongly diagnosed with a peripheral neuropathy that daily steroids were the standard treatment for. I had very little side effects from them, I thought.

What they did give me was bone thinning. However, a year on Fosamax turned that around. I noted that taking DHEA when on the steroids helps this greatly (and there is some research ion it).

My big fear is that one day they will stop working for me. I personally think that that has already started to happen.

Well I had the bone thinning before I started actually lol. I've been doing Alendondrate for a year that works well. In August I find out how I did.

Can't be worried about what if, gotta go by what is for sure this very moment. Tough though for sure.

Explain the DHEA thing to me please

Just search google, and you will find many links

For example http://www.abundalife.com/dhea.html

What got me onto it was that previously, after taking 75mg/day of steroids for a few days, while taking calcium supplements, I noticed I was literally urinating calcium! and even in small chunks! By chance, I was trying DHEA as a general health thing, when I noticed that when I also did the prednisone, my urine was clear of the cloudy calcium. That was where DHEA could be taken without prescription. Anyway, back in Australia, you need a prescription, and get it made up by a compounding pharmacy. One time when I went to get the DHEA, the girl sheepishly asked why I was taking it. I explained the calcium thing and she smiled knowingly, and told me my Dr was way ahead of the pack, as they had just been commissioned to create a batch of tablets for a large study at one of the Hospitals, for that exact purpose.