Has anyone with rheumatoid disease--and last I checked there were 100 variants in this category--gone in for x-rays since advancing to late phase 2 or phase 3? Just wondering if there is longitudinal evidence to support the efficacy of the protocol, in-terms of arrested cartilege or bone erosion. Joint functionality tests, soft tissue scans and strength tests might also add useful evidence. Conversely, has anyone had to go through surgery to deal with continued joint deterioration?
____________________ PA 6/2000; started protocol 8/2004 Vit D 40/22; ACE 70;Minocin, 100 Mg.; hiatus for surgery from 3/17--4/17/06; 5/1/2006 restarted phase one, retesting of vit D 25: D
For five years (pre-MP) I traveled from Ohio to see a west coast rheumatologist, one of the few who treated almost all his RA patients with antibiotics. He took x-rays every visit and was proud of the quality of the images produced by rare earth films. Much time was spent during my visits with him comparing current films with past films, looking at the size and opacity of erosions in my wrists and the joint spacings in my knees, etc.
Over these years during which my doctor was looking at miniscule qualitative changes on these x-rays, my toe joints were totally destroyed. The toes on my right foot over-lapped and wearing anything other than Birkenstocks was painful. I had reconstruction surgery which was successful, but it did not involve any joint replacement. Basically, the joints were removed and the toes are just floppy…but straight. I remember thinking “too bad that won’t work on my hands” because I was certain my fingers were going the way of my toes.
Since starting the MP over two years ago, I have not seen evidence that the damage in my hands has progressed, in fact I see the opposite. I know I have more strength and dexterity in my hands. I am able to type in a more normal fashion and it is definitely easier for me to open cans and bottles and squeeze the lime into my tequila. Some finger joints and both wrists seem less thick. I honestly don’t know if this is due to a reduction in swelling or a resorption of some kind. I admit I would be curious to see how my hand x-rays today compare to pre-MP but I no longer see the west coast doctor and I don’t think they would be comparable unless he did them.
I acknowledge that this is not a report of quantifiable data from objective testing. But I am certain that my hands work significantly better now, and I would not tell you this if it were not true .
I wish I understood more what happens when RA or PA destroys these joints and they get thick, deformed and inflexible. Is it loss of collagen? Is it collagen deposition? Is it scar tissue? What is scar tissue?
In any case, I think the joints in my hands work acceptably well and I’m hopeful that their functioning may improve even more. My big joints (knees, hips, etc) seem pretty good when I am not herxing at those sites. I am thankful that I don’t have to contemplate joint replacement. Given what I have learned about Th1 inflammation and how it impacts bone I just could not bear the thought of having anything implanted.
Carol
____________________ rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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. Some finger joints and both wrists seem less thick. I honestly don’t know if this is due to a reduction in swelling or a resorption of some kind. I admit I would be curious to see how my hand x-rays today compare to pre-MP but I no longer see the west coast doctor and I don’t think they would be comparable unless he did them.
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