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Do you have Raynaud’s or any other symptoms of poor blood circulation?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinNo Raynauds Phil. It was a bad time to start the mino as I had a viral infection, which really hit me hard.
Will start up again in two weeks once all the medication they gave me is out of my system. Maz, from one of your posts you stated: ” In the original Trentham SD and mino trial, 50mg minocycline was given twice daily (BID) for the first month and then increased to 100mg twice daily thereafter. This is from the old RBF website, but I have a copy of the original study summary that is no longer on pubmed, if you need it.” can you send me a copy of this please?Maz, from one of your posts you stated: ” In the original Trentham SD and mino trial, 50mg minocycline was given twice daily (BID) for the first month and then increased to 100mg twice daily thereafter. This is from the old RBF website, but I have a copy of the original study summary that is no longer on pubmed, if you need it.” can you send me a copy of this please?
Hi Redknee,
With pleasure. If you’d like to PM me your email address, I’d be happy to send this to you. I can’t copy it here, as this forum doesn’t allow attachments, but also because it’s copyrighted, so it’s not something that can be republished or copied elsewhere on the web. I’ll watch for your PM.
Started mino after a bad start during Christmas holidays. My family doctor suggested I wait a month to start again. I am taking 50 mg every second day and will see at the end of the week how that goes, and then slowly up the dosage.
My tongue is a little sore and a dark blue. I am also having some issues with swallowing. Is this anything to be worried about?
I recommend the Cyrex Array 10 if you have some money to spare. Trying to decide if food intolerances are causing or aggravating your condition through guesswork or someone’s opinion is not scientific enough for me. I just paid the big bucks. Also have your HLA pattern sequenced. Boy, was I surprised I had a celiac gene. Keep at it!
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFblue tongue and swallowing issues have cleared up, but now the insides of both knees have a patchy rash. The rash on the inside of the right knee is very red and hot. The patchey spots do feel a little raised. I am wondering if this is a result of the mino or just progression of this disease or something totally unrelated.
Diffuse Scleroderma
currently taking 5o mg teva mino 1x day..next week to 2x day
Multivitamins, kefir, pro-biotics, plaquenilI have been on mino until October of this year when I went to ER with what I thought was Pneumonia. They put me on antibiotics and went for a CT scan, results were: IMPRESSION:
Interstitial fibrosis suspected at lung bases with suspected active pneumonitis,
as describedMy rheumy put me on Cellcept 500mg bid. I think I made a mistake and took 200 mg of mino instead of the 100. I think this may have caused my problem. To make matters worse I had a DVT (blood clot in my leg and an on xyarelto. Should I give up on mino? I feel that I was doing so well, no raynauds, no skin hardening, nothing really but some stiff joints. I was basically doing this on my own, GP gave me prescription and that is all, rheumy won’t use it at all. I am stumped as to what to do? Sorry forgot how to start a new post.
Have you been all the time on Prednisone?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousRedknee, did the hospital know you were using minocycline at the time of your ER visit? Were any other imaging impressions provided? One of the rare but possible side effects of minocycline is something called, “minocycline-induced pneumonitis,” which has the distinctive appearance of “ground glass” opacities on x-ray and pulmonary esoinophilia can result. Not saying you have had this side-effect, but just wondering if the hospital docs may have considered it, if you were taking minocycline at the time of admission. It usually resolves quickly with a round of prednisone and by discontinuing minocycline.
A clinical study of minocycline-induced pneumonitis.
If minocycline has caused pneumonitis in your case, other abx have been used by SD patients with success, but it usually means a visit to an experienced AP doc.
Are you doing anything supportive for your lungs? E.g., N-AC or anything else to promote glutathione, such as curcumin or non-denatured whey protein, as well as anti-oxidative supps?
When I first went to ER they said I had pneumonia and was given antibiotics -Moxifloxacin 400mg once a day for 10 days. I had a follow op with GP and he put me on prednisone 5mg for 10 days and referred me to my rheumatologist. She then put me on another antibiotic Cefuroxime 500mg 1x/day for 7 days. She also put me on Pantopraole 400mg 1x/day because she thought it may have been aspiration pneumonia and also on an inhaler salbutamol. It was then that I had the ct scan. And from that scan I was put on Cellcept. I told them at the ER that I was on minocyclin.
Maz this is the full report from my CT scan:
On high-resolution imaging, there is bibasilar ill-defined coarsened
interstitial markings with patchy subpleural ground-glass density at lung bases.
Bilateral bronchiectasis, particularly peripherally, noted at these locations.
Appearance favors fibrosis with possible active pneumonitis given ground-glass
density visible. There is multifocal minimal similar patchy distribution of
interstitial thickening and ground-glass density right mid lung also present.
There is no central peribronchial nodularity to suggest bronchiolitis and no
dense consolidation present. No suspicious lung the endobronchial lesion.
Small mediastinal lymph nodes are present. Right paratracheal lymph node is up
to 7 mm short axis and subcarinal lymph node measures up to 9 mm short axis. No
discrete suspicious enlarged lymph nodes present. No significant axillary or
hilar adenopathy visible. Esophagus is normal in caliber in within normal
limits on this unenhanced exam. No pleural or pericardial effusions.
Chest wall soft tissues and bones are within normal limits. . The upper
abdomen included is unremarkable.
IMPRESSION:
Interstitial fibrosis suspected at lung bases with suspected active pneumonitis,
as described.My rheumatologist has scheduled me for another CT scan. I asked her about taking NAC and like mino she said there is not enough evidence that it is effective. Before this incident the last time I saw my rheumatologist was in 2014 and she was surprised that I was doing so well, no skin involvement other than the small mouth, no raynauds, no GERD, or curvature of my hands etc. and I have SCL70 -diffuse sclero. My only complaint was stiff joints especially at night. Right now I am coughing a lot of mucus but I still can walk a couple of miles and swim without being breathless. I would love to find and AP doctor in the East Kootenays of BC but so far to no avail.
Hi All
Saw dr today for possible upper respiratory infection. So he suggested to increase my 100 mg minocyn to 200 minocyn daily. I will attempt the new dose as I’m 6 months at 100 mg. Will report back of my progress! Best to all. Marla
When I first went to ER they said I had pneumonia and was given antibiotics -Moxifloxacin 400mg once a day for 10 days. I had a follow op with GP and he put me on prednisone 5mg for 10 days and referred me to my rheumatologist. She then put me on another antibiotic Cefuroxime 500mg 1x/day for 7 days. She also put me on Pantopraole 400mg 1x/day because she thought it may have been aspiration pneumonia and also on an inhaler salbutamol. It was then that I had the ct scan. And from that scan I was put on Cellcept. I told them at the ER that I was on minocyclin, I should have said AO therapy but I really don’t think they would have clued in as mainstream medicine doesn’t believe in it.
Maz this is the full report from my CT scan:
On high-resolution imaging, there is bibasilar ill-defined coarsened
interstitial markings with patchy subpleural ground-glass density at lung bases.
Bilateral bronchiectasis, particularly peripherally, noted at these locations.
Appearance favors fibrosis with possible active pneumonitis given ground-glass
density visible. There is multifocal minimal similar patchy distribution of
interstitial thickening and ground-glass density right mid lung also present.
There is no central peribronchial nodularity to suggest bronchiolitis and no
dense consolidation present. No suspicious lung the endobronchial lesion.
Small mediastinal lymph nodes are present. Right paratracheal lymph node is up
to 7 mm short axis and subcarinal lymph node measures up to 9 mm short axis. No
discrete suspicious enlarged lymph nodes present. No significant axillary or
hilar adenopathy visible. Esophagus is normal in caliber in within normal
limits on this unenhanced exam. No pleural or pericardial effusions.
Chest wall soft tissues and bones are within normal limits. . The upper
abdomen included is unremarkable.
IMPRESSION:
Interstitial fibrosis suspected at lung bases with suspected active pneumonitis,
as described.My rheumatologist has scheduled me for another CT scan. I asked her about taking NAC and like mino she said there is not enough evidence that it is effective. Before this incident the last time I saw my rheumatologist was in 2014 and she was surprised that I was doing so well, no skin involvement other than the small mouth, no raynauds, no GERD, or curvature of my hands etc. and I have SCL70 -diffuse sclero. My only complaint was stiff joints especially at night. Right now I am coughing a lot of mucus but I still can walk a couple of miles and swim without being breathless. I would love to find and AP doctor in the East Kootenays of BC but so far to no a
Hi Redknee.
Keep the faith,diffuse scleroderma as I have it the past 14 years has been filled with many “ gifts” and surprises. Usually when there is a bronchial infection or pneumonia I stop the 1500 mg of cellcept to let the antibiotics work their best. What dose are you on for Cellcept and Mino? Max recommended NAC and I am only seeing good results from it. When the Drs day “ there’s not enuf evidence to support findings “ follow your own instincts too. Don’t discount your knowledge!! I hope you feel better soon. Avoid alcohol, sugars gluten and dairy as best you can!!
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