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I found 2 things recently – one while proven that this chemo Penacillamine wont stall SD it is prescribed still alot & been around a long time, but in a backwards way it can offer some help if indicated for reducing metals in the body in a chelation type of mode so as a chelator if there is a indication can in a backwards way help to reduce the metal risk association to SD in continued exposure.
Bosentan redcues fibrosis & Pencillimine for Chelation only purposes for a short time for excess iron metals from Mercury iron & nickel all linked to being a antogonist to inducing SD as a player but needs to be under a doc’s guidance I dont know if it could reduce the excess calcium that is a issue in the arteries for SD or not.The other is this for skin fibrosis – Bosentan May Reduce Skin Fibrosis in Scleroderma
Tuesday, 02 August 2011 10:57
Bosentan, which has been shown to prevent digital ulcers in systemic sclerosis, also may have beneficial effects on skin fibrosis.In a small, prospective, open-label study, treatment with the dual endothelin receptor antagonist was associated with a significant reduction in skin thickening as measured by the modified Rodnan skin score (mRSS), Dr. Annegret Kuhn said at the Congress of Clinical Rheumatology. Bosentan May Reduce Skin Fibrosis in Scleroderma
Tuesday, 02 August 2011 10:57
Bosentan, which has been shown to prevent digital ulcers in systemic sclerosis, also may have beneficial effects on skin fibrosis.
Iloprost remains the best treatment for digital ulcers in systemic scleroderma,” Dr. Kuhn said,But bosentan is recommended for prevention, and it may also improve fibrosis, she noted.
Guidelines that were developed this year by a group of German experts on scleroderma call for first-line treatment with iloprost for the healing of existing ulcers, with repeated infusions for long-term care. They also call for the use of bosentan for prevention, and note that current experimental treatments include sildenafil and atorvastatin, she said.
from – http://www.sclerodermatt.org/articles/news/371 I donAgain minocycline is totally overlooked –The fact remains that minocycline has been demonstrated to effectively deal with skin fibrosis due to the effect on regulation of collagen production –
richieHi–While the German study may have merit –the study about Bosentan preventing digital ulcers may be way way too optimistic –the cast of researchers have a long history of studies that really havent produced very much progress in the treatment of diffuse scleroderma –From relaxin about 12–14 years ago to cyclosporine I have seen optimistic so called studies by these same well known so-called scleroderma specialists that in reality havent really been productive —I was supposed to enroll in one of these researchers studies on relaxin about 13 years ago –fortunately I decided to go into the minocin study up at Harvard with Dr T –where the results were outstanding –and the Relaxin study was a subsequent bust –I might also add this study on Bosentan also included Actelion Pharma as a co-author of the study —
Got to take these studies with a grain of salt —I take everything with a grain of salt Ritchie & I also believe in hedging my bets if I can wisely. I am not disregarding minocycline Ritchie but for some reason prior to getting my IV & since I am back on the minocycline I have not held but continue to progress quite fast so I am going to consider while I feel I can what I can do to help along with AP – without suppressing my immune this is not just in way of med’s I hardly take any med’s & dont want too but in any other things to include that shows any valid promise.
One study I came across was for minocycline & while the study had alot of withdrawals it was inconclusive in slowing the progression of SD – I dont say this to be OH my gosh b/c if you hang in there I also realize this study was only one year in duration & there will be on average not big reversals in that time so I dont necessarily think i think we just have to go by what our bodies are telling us. & in this study if the disease has been going on for a bit & there was no pulsing in with IV’s once to month to jump kick things … then yeah I can see if they took on some cases with SD that had been longer standing in duration like mine has been undiagnosed for a long time at least 7 probably closer to 9 yr’s that I am aware of.
I think mino has done me alot of good in stopping raynaulds & that in itself speaks to circulation is improved in the small vessels but the larger arteries have gotten worse during this time – I am thinking that maybe a longer haul ro slow & reverse. I am not willing to just watch things get considerably worse so IV’s yes & Cozaar for helping to block the TGF-b Dr Varga’s presentation for SD since i have need for a BP med. why not? Whey Cool Lactoferrin anything that can help to work on concert to modulate the immune not boost or suppress is on my radar – if it has enuf evidence & especially if it is GRAS why not? But since I have scarring appearing now in this last week fibrosis even with my ramping the game plan is still not on the upswing yet so I am looking to bide some time til that can happen. I think my Road back is needing some add’l army for now with AP being center. If someone is stable where they are at – then they are certainly may be able to be a bit more comfortable, as everyone has the right to make that choice, I am trying to make those the best i can with a issue that is a tight spot for me right now as it is interfering alot more than i want it too is the best way to say it. my mino may need just to be doubled up or it could be the brand or my being on Tetracycline as a teen for acne for 2 yr’s while mino is not the exact same maybe I have become somehow more resistance or just where I am at but I take a baby aspirin with the mino & I even have done that plus bromelain & quercetin to help enhance the mino it is not enuf right now as new issues have been coming forward now since I missed my IV the beginning of this month & they are still coming. At some point I hope it can be.
Best – Jill Systemic SDthe study about Bosentan preventing digital ulcers may be way way too optimistic —
Ritchie if you check the article again it says that this study never proved it to prevent digital ulcers it only was demonstrated to prevent skin fibrosis & had merit for early prevention.
Jill SD
Hi–Fair points –dont get me wrong along with minocin I believe other meds are necessary —my approach was to have one doctor to manage the overall disease –that being DR T up in Boston –for other problems such as Raynauds reflux etc I had my local internist manage that–for example I take Cozaar for kidney protection –as well as maintaining BP –for Raynauds I use a calcium channel blocker –this was also quite effective –reflux omeprazole did the trick –and yes I also take a statin —Early on I always felt it took more than one doctor to manage scleroderma as I felt many of the symtoms really dont fall into a rheumatologists frame of expertise –For me –my approach worked excellent —I have espoused this for years to many folks and many folks have mentioned good results –A game plan and good management is important in my opinion – AS to the minocycline study that did not show good results –history will tell you it was run by folks who never used minocycline and were opposed to its use –It was felt that the entire study was set up to fail —
richieRitchie – I agree on the study for the mino – I dont know enuf details on how they ran that study – the one that said is inconclusive – are you refering to the one Dr Mayes (rheum) did out of Houston? This is the one i am refering to.
Some doc’s are better than others – Dr T was a excellent choice for a Rheum. Here we have according to my 2 PCP doc’s no good Rheum’s in Memphis their words however i have to admit none of them are able to delve or know how to manage a SD patient.You combine other adjunct methods to try to help & while i agree in the AP being key – it is still possible that other things used in concert may have contributed some aide or help in slowing down so the mino/IV’s can start to make inroads.
Take care – Jill SD
Hi–Right on –that exactly is the study I am referring to –WE visited Memphis about 4 years ago –Stood at the HeartBreak Hotel –between Elvis home and Beale St –we really had a fabulous time !!!!
richieRichie,
I have been meaning to ask you if you ever had the clindy IV or pills? I think I remember hearing that you did not, but am not sure. Also from the start of taking mino how long before you would claim that you were in remission? also do you still take the mino in remission? I know that these questions may not relate to your other topic, but I would like to know. I also have heard many things about using other Rx for SD, but since I have been on the mino and have done everything I can to help my body with proper habits, I have seen amazing results. I never took more than about 6 months of nexium for reflux and a continual intermittant dose of serracor for clearing out dead stuff. I never took anything for the raynaud’s which can still be rather annoying at times. louiseMlouise, sorry to intrude on your question to Richie, but thought you might like to read his Remission Corner story from several years ago…sheesh, can’t believe three years has passed, Richie, since you sent in this update. Doesn’t time fly?
https://www.roadback.org/EmailBlasts/ebulletin_spring09.html
Hi –Time does fly and am enjoying every minute of it —As to the antibiotic I only took minocin 200 mg daily –it took about 4-5 years for remission –I continue taking the med as relapses were far too common for me for folks who went off the med —Raynauds was a big problem for me also but once my internist gave me a calcium channel blocker it no longer became a problem —
richieRitchie glad you enjoyed the forest city – AKA Memphis. I dont get down to Beale or downtown very often as nite time is the time to be there but my lungs cant handle the nitetime air of being close to the river too damp – sets off coughing & cant breathe big time It just is not worth it & how I feel for a few days later really run down & tired from just being down there. This is something i never noticed just a couple of years ago – i believe it has to do with SD & my lungs or heart but here in this town they dont know really how to detect this stuff even though my PFT has slid over the last 2 yr’s. They do nothing proactive for the lungs. I recently read that Bosetran for the skin can help the lungs too so I may look into that if i can get a doc on board despite studies they like what they know best. Memphis is great but when both your PCP’s independently tell you that there is no good Rheum’s in town – which I have come to realize that as well… my only hope is resting on the AP right now & I think it is better than anything i have been offered here so far but I would like to consider rounding in with something that will work well in concert with.
I think it is smart to stick with the mino to keep remission – i think one needs to be aware of the risk of returning it happens in RA too.
best – Jill
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