|
Post by jeffn on Apr 17, 2011 18:32:54 GMT -5
|
|
|
Post by Cubby on Apr 17, 2011 20:38:35 GMT -5
That is awsome!!! How many times have people argued that taking this AP, will cause us to be immune to antibiotics when we are really ill? !!! This article is great!
|
|
|
Post by grammie on May 4, 2011 19:38:22 GMT -5
interesting.............grammie
|
|
|
Post by grammie on Nov 11, 2011 9:48:14 GMT -5
Went to Rymie yesterday and was given a new study on minocycline not as effective in systemic sclerosis. It comes from the Arthritis & Rheumatism vol 50 No. 2 Feb 2004 pp 553-557
Basically it states of the 36 subjects with a 5 year plus duration of SD were treated for 1 yr. The primary outcome measure was the modified Rodnam skin thickness score.There was no statistically significant difference in the change in skin scores between the mino treated subject and subject previously reported in the D-penicillamine trail.
Fourteen subjects did not complete all 12 months of treatment for 10 withdrew due to disease progression. Disease duration was significantly shorter for the noncompleters than for the completers.
Conclusion: The degree of change in the MRSS was similar to that expected in the natural course of this disease. Based on these data, mino is not an effective therapy for SSc.
Remember this is for systematic SD
So I'm going to drop down to one mino a day and see how it goes.
|
|
|
Post by grammie on Nov 11, 2011 9:51:35 GMT -5
The report I just wrote about is a summery of the "results". I'd be glad to make a copy of it and snail mail it to anyone interested. Send me a private message with your address and I'll get copies next week and send it out.
grammie
|
|
|
Post by Cubby on Nov 16, 2011 16:49:18 GMT -5
GRAMMIE: I have/had rapidly progressing, diffuse systemic sclerosis, since 2004. I was told by every doctor, that mine was one of the worse cases they had every seen because it progressed so rapidly and I was SOOOO disabled! The minocin worked just fine on me and is still working fine. I also do Photopheresis treatments.
My friend was on Minocin and in full remission so my doctor put her on Pencillamine and she got sick as a dog. She stopped the penicillamine and went back to the Minocin. She is in full remission.
From the dates, it looks like this is a 2004 study, not a new one.
Bottom line, many of the people I know on Minocin have systemic scleroderma and they are all doing well and many are in remission. I actually know and have corresponded with more people than those remaining in the study.
So, I hope you understand that I "bristle" when someone writes that Minocin is not effective for systemic scleroderma.
If minocin is not working for you, try something else but this is really not the board where bashing Minocin will be allowed.
|
|
|
Post by steve201 on Nov 16, 2011 17:30:31 GMT -5
Grammie I was diagnosed with Systemic SD with pulminary and internal organ involvement ...given 6mos to live....doc's were calling me one of the walking dead....I was given cytoxan and minocycline....later to be put on tetracycline due to extreme pigmentation changes from (believe it or not) florecent lighting in my office....(kept getting asked where my taxi was)..... anyway...when I was first put on cytoxan...it stopped the disease but I wasn't showing any sign of improvement until I was put on minocycline and later tetracycline.....that's what kicked the healing process in gear....
on many cases such as myself...minocycline has proven to be VERY effective in SD treatment...either in pill form or IV.... my doc feels it's benign enough not to hurt the body but provides alot of good things to promote the healing from the damage of SD.... there are tons of cycline family meds that if one doesn't work...ask for another..... the body reacts differently to different drugs..and drug combination...(don't ask how I know...but it involved using different ones when something didn't work or made me ill)..
Steve
|
|
|
Post by cherylf on Nov 16, 2011 18:02:38 GMT -5
Went to Rymie yesterday and was given a new study on minocycline not as effective in systemic sclerosis. It comes from the Arthritis & Rheumatism vol 50 No. 2 Feb 2004 pp 553-557 Basically it states of the 36 subjects with a 5 year plus duration of SD were treated for 1 yr. The primary outcome measure was the modified Rodnam skin thickness score.There was no statistically significant difference in the change in skin scores between the mino treated subject and subject previously reported in the D-penicillamine trail. Fourteen subjects did not complete all 12 months of treatment for 10 withdrew due to disease progression. Disease duration was significantly shorter for the noncompleters than for the completers. Conclusion: The degree of change in the MRSS was similar to that expected in the natural course of this disease. Based on these data, mino is not an effective therapy for SSc. Remember this is for systematic SD So I'm going to drop down to one mino a day and see how it goes. Is this the Maureen Mayes Study? If so I have some information that some of you might be interested in, a PhD medical researcher, and herself a Scleroderma patient who has used AP to recover from rapidly progressing SD, got the actual data from Dr. Mayes' study and analyzed the results. It is a funny thing how one can twist statistics to whatever results they want, especially when hundreds or even millions of dollars are involved. I am glad to post the analysis if the study you are referring to is indeed the Maureen Mayes study, if not, nevermind I would love to see the actual study you are referring to. As a active volunteer with the Road Back Foundation, I am not aware of any study other than the Mayes study that supposedly refutes the effectiveness of AP for SD. Cheryl
|
|
|
Post by steve201 on Nov 16, 2011 18:13:10 GMT -5
cheryl...please post the study or the link...
Steve
|
|