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I don’t know about RA specifically, but in other forms of autoimmune inflammatory arthritis (specifically the spondyloarthropothies) a lack of swelling does not indicate whether or not there is inflammation going on! That invisible (but painful) inflammation can be very destructive. Bloodwork, nuclear bone scans, etc. can pick up on it at times, but “swelling” is definitely not the only indication of erosion.
That is a great point Mary. I think it’s one of the myths about RA that just gets perpetuated. Good docs know better as has been shown many times over.
Do any of these studies say what type of Vitamin D was given? there is a clear distinction on the benefits of D2 not D3(which is synthetic)usually what you find in the vitamin isle. D2 is in it’s natural form easier to break down and more goes into your body.Something like 80% is not absorbed when taking a synthetic. That paired with CoQ10 dramatically reduces vitamin D deficiencies in all test subjects.
I do not know what these patients took. Interesting.
Hi Janelle,
I hate to disagree with you, but I believe you may be mistaken about the difference between Vitamin D2 (Ergocalciferol) and Vitamin D3 (Cholecalciferol). Vitamin D2 is produced by plants, and Vitamin D3 is produced by animals, such as fish and also humans (produced in our skin from sunlight exposure). Both forms may be naturally occuring from plants or animals, or synthetic from supplements. Several studies have actually shown Vitamin D3 to be up to 9 times more potent and effective than Vitamin D2. You can read more at http://www.vitamindcouncil.org/vitaminDPharmacology.shtml. Since I’m a Registered Dietitian, just wanted to throw my two cents out there!
Liz
Vitamin D deficiency may be the culprit leading to erroneous diagnoses of fibromyalgia in many RA patients. My rheumy did check for that and I was very deficient. But need follow up levels checked to see if supplementing is getting them high enough. Took a long time and did help with some, but not all pain.
My doc/doc’s group seems to buy into the no swelling=no inflammation=no continuing damage group and thinks the new biologicals are so great. I had an ortho pick up on knuckle synovitis that my rheumy doesn’t even though my hands are always checked “hands on” so to speak.
It may be true that biologics or methotrexate are slowing damage in many & I hope it is. I’ve just met many many patients who have damage while there is not external swelling. Mary’s point is very good about how with other autoimmune arthritis, it is accepted that there can be “inflammation” without obvious external swelling. Swellling, like CRP, is partly genetic. Some people do not swell in a puffed up way, but there is still “inflammation” which can be detected on some nuclear scans or in other ways.
I read the transcript with great interest and I cannot thank you enough, Kelly, for posting these links. I certainly agree on the points you made and I will also add that an improvement of ACR20, to me, is not acceptable! I appreciate everything that is being done in the research of treatments for RA but a 60%-65% ACR20 response should be considered a road sign pointing in the right direction, not an acceptable response in the treatment of RA. I think ACR70 is where the level of acceptance starts. When you reach this level life becomes much closer to normal.
If a disease destroyed all 10 of your fingers would a medicine that saved a couple of fingers 65% of the time be ok? Thinkin’ not.
Don’t get me wrong, these advances in medicine are very exciting, but getting on the right track and making it to the finish line are two different things. This is where the awareness (or lack of) comes into play. If researchers truly understood our plight they would not be so quick to consider an ACR20 improvement acceptable.
As ususal, Lisa, I cannot add to what you’ve said. I know it irritates some for us to be so blunt, but that very example was used to me by an RA researcher in a conversation.
lol, and I’ve toned it down over the past decade. 🙂
Interesting stuff. As a 31 year old male with RA (currently on Methotrexate and Orencia), and a veteran, I surprised these VARA registry people aren’t knocking my door down. So, what I see is I need to gain weight and keep on MTX to stay alive longer? Thanks for all the info.
I think the vitamin D debate is silly. If you are, and I was severely deficient, it can help pain dramatically, as it did with me. My pain is not gone by any means but the was a noticeable difference when my vitamin D levels were normal again. Note it took 12 weeks of 50,000 IU per week to get them there and 2000 IU per day to keep my level up. Just supplementing without testing and expecting results for everyone is stupid medicine. Vitamin D can be toxic in high doses so make sure you get blood levels checked.