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My pain Is mostly around rib cage and spine. Anyway I can reduce it?
No amount of pain killers nor do foxy work.
I even know the bug but treatment requires use of very toxic abx.
Any help?
RAers sometimes get cervical (neck) pain, but not usually the full length of the spine.
I don’t know an awful lot about corynebacterium tuberculostearicum, but judging by the name, it sounds to be a tubercular in nature? Long ago, tuberculosis was treated with Dapsone (and today when trimethoprim with sulfamethoxazole aren’t tolerated for certain ailments). Dapsone is a sulpha-derived antibiotic that has some nice anti-inflammatory properties, but can cause some blood anomalies that usually settle down after a month or two (reduced hemoglobin levels, I think). I have no idea if Dapsone is indicated for use with your bug, but if it is, then maybe it would help with the pain you’re experiencing? Something to ask your doc about maybe?
http://www.ncbi.nlm.nih.gov/pubmed/20966036
Provided there is no sulpha allergy, some specific labs need to be run in advance of trialing Dapsone to ensure there isn’t a predisposition to certain problems that can occur with dapsone in the long term. These labs would be:
1. glucose-6-phosphate dehydrogenase deficiency (G-6-PD)
2. methemoglobinemia
Dapsone is used to treat a number of health issues, including dermatitis herpetiformis, toxoplasmosis, pneumocystis pneumonia, leprosy, acne and is also used for folks with dermatomyositis. They also used to use it for RA, because of its anti-inflammatory effects.
Dapsone is also sometimes combined with rifampicin and clofazimine for the treatment of leprosy. Interestingly, the tetracyclines also have effect as a treatment for diseases like leprosy, acne, malaria and toxoplasmosis. So, there seems to be some overlap in terms of these antibiotics and what they will treat.
As mentioned above, can’t say with any surety that it would help your bug, but you can talk with your doctor and, if he’s on board with trialing it, to get the labs needed to begin it? There are side-effects with any antibiotic, but important to read up about this one in advance to be aware of these. Regular blood monitoring is also needed.
Are you saying I could use trimethoprim? This drugs does Def seen to help with prostate.
What about trimethoprim and rifampcin?
No one really knows about this bug, I have consulate over 10 pcp docs and few rehumi.none knows. They all say follow id suggestion.
From report it says rifampcin is 80 % sensitive follow 100 % zyvox and vanco.
I just taken doxy for over a year with few breaks but If it was going to work it will.
I have full spine and neck pain along with rib. My disease is really active.
Do you have experience with rifampcin?
The report is basically a online study report not a actual sensitive report.
It’s just spine pain hurts and know I’m willing to try abx despite severe side effects.
Should I not?
Are you saying I could use trimethoprim? This drugs does Def seen to help with prostate.
What about trimethoprim and rifampcin?
No one really knows about this bug, I have consulate over 10 pcp docs and few rehumi.none knows. They all say follow id suggestion.
From report it says rifampcin is 80 % sensitive follow 100 % zyvox and vanco.
I just taken doxy for over a year with few breaks but If it was going to work it will.
I have full spine and neck pain along with rib. My disease is really active.
Do you have experience with rifampcin?
Just to clarify, I wasn’t suggesting anything, because I’m not a medical professional…just offering info about Dapsone that you can research to discuss with your doctor as a potential treatment option. It’s an antibiotic that has been used for rheumatic diseases in the past to help with inflammation and that also has similar anti-microbial effects as some of the more commonly-used antibiotics. It does, however, have the potential for some side-effects, some of which can be checked for in advance of taking it.
I don’t know if Dapsone sensitivity testing has been run on corynebacterium tuberculostearicum, but it’s been used for other tubercular microbes in the past. As mentioned, I don’t know enough about this bug to offer any insight on it and it’s something to discuss with your ID or other doc. Without laboratory sensitivity testing on your infection, your ID will likely be taking a trial and error approach.
Yes, I have been on rifampin (I think it was for about 10 months?) and had no ill effects while on it, but continual, regular monitoring of liver enzymes need to be run. It can cause tangerine orange body emissions…urine, tears, sweat, etc., but I only experienced discolored urine.
Again, this is just a different type of sulpha antibiotic to discuss with your doc, as I can’t know if it would helpful for you or not.
Hope this makes sense.
Worldofme,
Does it help when you lie down or rest?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 heterozygousTo RA patient, Maz is just giving a suggestion, and her help to the best of her abilities. You do need to work with your GP, because they will know your medical history, what may work, what may agree with your body etc. In my experience yes we do get pain. working with your GP as to medicine wise this needs to be done. Blood work, Ct scan etc. To see whats going on. In my experience when I’m getting those pains, this may sound harsh, but it helps, stretch, just light, also flotation.
Normally I dont want to suggest pain killers, in terms of what to use. But the combo of 1-2 tramacet or tramapar (tramecet & paracetamol) and zeradol..Have been using it on and off only when needed…..I decided to use it when this pain had me in tears and it was recommended by my GP. Have been using it on and off only when needed. Pain like not moving. You need to watch your diet in terms of what makes it worst (flare), keep a journal so keeping track is easy also important for your GP and light stretches. Our bones are not normal, after a period things happen example MS. I was given therpay, which is stretches and keep motion in your body, I know its hard because we are in pain, but keeping it in motion helps with not getting any deformities….This is just a suggestion. But work with your GP especially when in terms of medication.. Im just like everyone else here. All of us here, try to help each other to our best of our abilities. And honestly I’m glad I’m here so happy to have found Road Back Foundation, suggestions given, after asking my GP, trying things helped me a lot.
SLE , CTD & RA
Supplements: C and D, Evening Primrose, Flax Seed gel caps, Combo (Calcium, Magnesium, Zinc ) , Vitamins B's , Probiotics, Flotation , L- Arginine.Soon to update and add other supplements to work along (assist) with the Tetracycline 250 mg.
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