Periodic steroid infusions may stabilize/improve PPMS

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Periodic steroid infusions may stabilize/improve PPMS

Postby Liberation » Sun Feb 12, 2012 5:29 am

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?

The dose of MP was 30 mg/kg in 250 mL of glucose solution in three consecutive days during the first week, two doses during the second and one dose in the third week. One weekly session for eight consecutive weeks was given. After, a once-a week/eight-week interval was maintained. The medium EDSS before treatment was 6.2, and after 11.2 years of treatment, the EDSS was 4.9. Although we studied a small sample of PPMS we may conclude that therapy with IVMP prevents clinical worsening of MS in the majority of patients with improvement in EDSS scores.


http://www.scielo.br/scielo.php?script= ... so&tlng=en
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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby KateCW » Mon Feb 13, 2012 7:09 am

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
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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby NHE » Tue Feb 14, 2012 3:06 am

KateCW wrote: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.


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


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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby KateCW » Tue Feb 14, 2012 4:41 am

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.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby chrishasms » Fri May 25, 2012 10:28 am

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!
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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby CureOrBust » Fri May 25, 2012 6:38 pm

Over how many days do you take the 8gr?
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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby chrishasms » Sun May 27, 2012 12:02 am

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.
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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby CureOrBust » Sun May 27, 2012 4:55 am

Whoops... my boo boo 8)

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.
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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby chrishasms » Sun May 27, 2012 8:47 pm

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.
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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby chrishasms » Sun May 27, 2012 10:28 pm

Explain the DHEA thing to me please :)
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Re: Periodic steroid infusions may stabilize/improve PPMS

Postby CureOrBust » Mon May 28, 2012 3:55 am

Just search google, and you will find many links

For example http://www.abundalife.com/dhea.html
DHEA is being investigated and may eventually be approved by the Food and Drug Administration (FDA) as a prescription drug for treating systemic lupus erythematosus (SLE) and improving bone mineral density in women with lupus who are taking steroid drugs for treatment. The FDA is still studying the pharmaceutical company’s application for approval.

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! 8O 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.
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