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Hi, Everyone. It’s been awhile since I posted. Since I was first diagnosed, I have been plagued with tendinitis in my fingers. I find it more debilitating than the actual joint pain. I allowed my doctor to give me 1 cortisone injection that while painful did help that finger. Clearly this is not a maintenance treatment so I’m looking for input from others who may have suffered with this as well. In addition to minocycline, I’m currently taking Naproxen 500 mg, twice daily as well as plaquenil, which I added earlier this month. None of these is offering much improvement at this time.
Karen
Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.@CurlyinNC wrote:
Hi, Everyone. It’s been awhile since I posted. Since I was first diagnosed, I have been plagued with tendinitis in my fingers. I find it more debilitating than the actual joint pain. I allowed my doctor to give me 1 cortisone injection that while painful did help that finger. Clearly this is not a maintenance treatment so I’m looking for input from others who may have suffered with this as well. In addition to minocycline, I’m currently taking Naproxen 500 mg, twice daily as well as plaquenil, which I added earlier this month. None of these is offering much improvement at this time.
Karen
Hi Curly,
It’s still really early days for you in terms of whether or not you’d be seeing response. There can be significant worsening in the early days/weeks/months and noted you’d be changing things up quite a bit in your signature line:
Began minocycline 50 mg MWF December 2014. Dr. S. has recommended 100 mg minocycline bid on MWF 12/10/14. Reduced minocycline to 100 mg once daily MWF 12/31/14.Reduced minocycline to 50 mg MWF to reduce herxing effects. 2/2015 increased mino to 50/100/50. Added plaquenil 200 mg 2/2015.
Plaquenil has some anti-microbial effects, too, so if it’s hitting anything in your pathogen load, you could feel more herxing from that, too, but that said, if it is going to help with inflammation, it takes (by some accounts) 3-5 months to reach full effect.
I also had soft tissue/tendon involvement with my RA in the early days and still do sometimes feel it behind my knees. Were you seropositive for RA (positive RF and anti-CCP?).
It helps to occasionally re-read the book and the Historical Protocol info as there are real nuggets that can keep one going in the early days. E.g.
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Beginning-23522
“Beginning the Therapy (toc)
Patients must be advised that the treatment is extremely slow and gradual and may take six months to a year before they can really see much improvement. In more severe or long-term patients it can take much longer (2-5 years).”
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-First-44591
“First signs of improvement (toc)
There is usually little objective improvement in patients during the first three months of therapy. In the ensuing three to nine months the improvement, when it occurs, is quite gradual. The course of events is similar to, although sometimes slower than that noted with gold methotrexate or chloroquine therapy.
The first sign of improvement is usually a lessening of duration of morning stiffness although the initial onset may be as severe as usual. The patient notices a general feeling of well-being lasting initially for perhaps an hour or two and gradually increasing to more good days and fewer bad days with a longer time span in between.
As antimycoplasma therapy continues, toxic substances are gradually reduced and normal functions begin to return. Strength increases, blood count rises to its normal level, mental acuity, ability to concentrate, a return in interest in work and a lessened sense of irritability all become noticeable dividends. All these symptoms may improve remarkably with rheumatoid remission, even after having been present for years.
It has been possible to measure clinical and laboratory parameters for the degree of disease control over a five year period. During this period over 70 percent of patients treated showed sustained improvement after five years. A major advantage of this approach has been the freedom to treat early rheumatoid arthritis in a basic manner with success.
“Hi Curly – Maz is right, of course it takes time for the treatment to work. In the meantime, you might want to look into prolotherapy. I have a wonderful practitioner in Chicago I have used and the treatment is really designed to strengthen ligaments and tendons, and help stabilize joint function from that perspective.
He treats people from all over the country, but there might be someone near you as well. Send me a private message if you want his information.
Bonnie
Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Hi, Maz. How is it that you always know the right thing to say? I’ve begun to have this stiffness/soreness behind my knees, so it was comforting to hear that I’m not alone in this symptom. Thanks for reminding me that patience is the key. It’s hard to do when you see yourself getting worse almost daily and activities becoming more and more limited.
I only had a positive anti-CCP. I certainly have worsened since I began the plaquenil, perhaps it is adding to my herxing activity.
Many thanks for the very good advice.
Karen
Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.I too have developed a tendon in my hand running from my middle finger down my palm that is now popping out of my palm a bit and preventing my middle finger from it’s normal range of “back” motion. Since starting AP 6 weeks ago, only about 5 days back my joint morning stiffness has suddenly drastically improved (holding my breath that this continues). I also have a Grandfather that had such bad hand tendonitis that it eventually closed 2 of his fingers permanently “Dupuytrens Disease” I believe is what it’s called, and I think usually it effects the little finger & ring finger. Don’t know with RA/Lupus (my own diagnosis) if my tendon response is because of my autoimmune condition or family genetics, but the other family members were in their 50’s before Dupuytrens surfaced, and since I’m only 22 I am assuming this is part of my autoimmune condition.
BellaB
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