Rheumatoid Arthritis questions for Doctor

manderson27 wrote: »

Hi all.

I have had a bad couple of years with one thing and another but I was intending to get back on track with fitness this year (oh the plans I had (weight loss is ok as CICO) ) but during October I developed pain in my hands/knuckles with swelling, clicking and not able to close my hands. Also some pain other joints that come and goes. I have had blood tests and x-rays taken. The initial diagnosis was that I have probably developed RA.

I have an appointment on Tuesday to discuss the blood test results and x-rays but I was wondering if anyone has any advice on what questions I should ask at my appointment. Always useful to go in prepared.

Also any tips on alleviating the pain/swelling using natural methods. No doubt my doctor will prescribe meds of some kind and I will certainly take his advice. But it would be nice to hear what other people find useful as well.

Also would like to start excercising again, I had intended to start lifting again but with painful hands can't do this. I can walk and swim or use the machines for legs but I have lost some muscle in my arms so what excercise do you do that helps to build strength in your arms that doesn't involve lifting heavy.

Thank you in advance for any responses.

Rowing machine, used correctly, can very slowly add some upper body muscle (pull direction only), if you're able to do it, even though rowing is mostly a leg-powered exercise. You don't need to grip/grab the handle, just hook it with your fingertips (first couple of joints). I don't know whether that's possible for you, or not.

Would you be able to use cable machines or other machines at the gym? Even some of the upper-body ones don't necessarily require tight hand-gripping.

I don't have RA so I don't have suggestions about what to ask your doctors . . . other than asking for a physical therapy referral to see if the PT folks can help with your upper body exercise needs, as I'd expect they could.

Oh, maaaan....RA must be going around (joking--it's not contagious). I will share what's been going on for me the past 2 weeks that may help you too.

I have atypical symptoms that affect my tendons rather than my joints, but just had a positive anti-cyclic-citrullinated-peptide antibody test(a-CCP), which gives me a 90% probability of already having or of being diagnosed with RA within 5 years. Unlike many other rheumatological tests, a-CCP is very specific to RA only, and doesn't usually occur in other autoimmune disorders.

Since I have atypical symptoms and currently normal inflammatory mediators (like rheumatoid factor and c-reactive protein) my doc did not put me on strong drugs. We are reserving those if I get a flare to see if we can drive it into remission. My current blood work looks like RA that is in remission.

My doc *did* suggest turmeric extract (curcumin) with black pepper. I looked up the dose in the medical literature and what's studied is 500 mg curcurmin twice a day, but I had to get 1000's because that's what the store had in stock. Right now this supplement is in the 'might help, unlikely to hurt' category of medical recommendation.

From what I read, RA may be the end state of several different but similar autoimmune problems--the exact antibody at fault may be different in different people but what they all have in common is they attack the joint capsule, causing inflammation that subsequently damages the adjacent bone and cartilage.

Looking at scientific articles, it appears that the a-CCP test is so specific to RA because it might actually be testing for the antibodies that (perhaps in concert with others as well) cause the problem for some individuals, not just frequently co-occurring. The antibodies attack proteins which have had a cyclic citrulline added to one of the amino acids (peptides) in the protein chain. The peptides in joint-capsule proteins can become cyclically citrullinated by the breakdown of the amino acid Arginine to release nitric oxide (NO) which is normally used to signal for blood vessel dilation, and creates citrulline as a by-product.

Apparently, the mechanism of action of curcumin is that it down-regulates the activity of the enzyme that releases NO from Arginine and produces the side-product citrulline. So the curcumins can reduce citrulline production, which logically would reduce the chance of citrulline getting attached to a protein. The curcumins are a generic anti-inflammatory (by reducing local-tissue production of blood-vessel dilator NO?) but might have a previously unappreciated specificity for treating the inflammation of RA if these mechanisms are confirmed.

Normal people have some citrullinated proteins in their joints but lack the antibodies to them. Most RA treatment drugs act on the antibody production end of the RA problem (which is why they can cause general immunosuppression because the drugs reduce *all* antibody production), but it looks like the Turmeric acts at the antibody-target end by reducing the amount of citrullinated protein.

Turmeric the spice is only 2%-9% curcumin, so to get the amount in a 500 mg supplement you'd have to eat something like 20g of it morning and night, which is do-able but kind of a lot unless you want an unending menu of Moroccan food. The black pepper extract supposedly improves absorption of the curcumins from the gut.

Your body can make its own Arginine so there's no point trying to restrict it in your diet.

add: suggest printing this post and bringing it with you to doc for discussion.

add: nerdy-detail for the doc--the curcurmins are supposed to act only on the inducible arginase not intrinsic.

I have been on the Turmeric for about five days now and it does seem to be helping me, though at this point it's hard to tell how much of that is placebo effect because I expected it to help. My doc says she's seen studies comparing its efficacy to diclofenac--a weak pain reliever that has never worked for me but that works for some folk about as well as advil, which is my 'drug of choice'.

Definitely don't substitute Turmeric for conventional treatment, but I intend to keep using it as a side-treatment because it's reported mechanism of action may actually be addressing part of the root cause of the problem in a very specific way that doesn't much cross-react with other systems the way the conventional drugs do.

Sorry to keep editing these things I keep wanting to clarify. I have a medical background and so sometimes when I first type something out I use too much jargon for general readers.

PS: erectile dysfunction drugs also act upon the release of NO to regulate blood flow, but I don't know the details of how they interact with the process. If they up-regulate Arginine breakdown as their source of NO, then folk with arthritis might want to avoid them. If the drugs themselves break down to release NO without breaking down Arginine, then they might help arthritis since the body would need to produce less NO itself and thus might consume less Arginine. The drugs are sometimes used for generic blood pressure control, so if you're on one of them for that purpose you might want to go look at how they work and ask your doc if it's a concern.

Oh the other reason not to try to restrict Arginine (beyond the fact its impossible to restrict because your body will just make it) is that NO production isn't the only thing it's used for, it's just the thing that might be a problem for people with RA because of the citrulline side-product of the reaction.

L010 wrote: »

Eliminating milk/milk products, meat, spicy food and having more of plant based diet + medication prescribed by doctor helped my cousin with RA. Also eliminated night shade vegetables (potatoes, okra, eggplant, red/green peppers)

When you eliminate that many things it's hard to tell which, if any, contributed to the improvement. Since this stuff is auto-immune, food eliminations are probably hit and miss--if you're not sensitive to that particular food and so it doesn't activate your immune system in general, it's not going to be activating your anti-joint-capsule antibodies to exacerbate your RA.

Eliminating the nightshade foods was advice for people with Lupus rather than RA and from what I've read the evidence isn't convincing. But again, autoimmune problems are very individualized so its possible if you have Lupus subtype #whatever, eliminating nightshade helps, but if you have Lupus subtype #whatever +1, it doesn't.

I'm thinking it might be worth trying food eliminations but that the food to eliminate might be different for different people. "Eliminate spicy foods".....turmeric is a spice....

I was diagnosed RA along with Chrohns a long time ago. Everything went away / remission. last year I thought the RA was back which means the Chrohns isn't far behind. Turns out, the doctor said it is not RA at all but "inflammatory bowel arthritis. It took a rheumatologist to tell me this. The NP I saw first prescribed a 3 month bout of steroids for the Chrohns. The Rheumatologist said, and this is important, a short round of prednisone, less than 10 days would have been all I needed to clear it up.
I have flares when I drastically change the way I eat, or drastically increase my activity level. I can do these things but I must monitor and control the stress.
In other words, If doc wants to put you on major meds, or steroids, I suggest you ask if you can try a short round first to see if it can be put into remission.

You mentioned random joint pain. It’s rare in developed countries, so doctors don’t even think to look for it, but Rheumatic Fever mimics many of the symptoms of rheumatoid arthritis.

It’s basically an untreated strep infection that eventually works it’s way into your joints. It may occur weeks after a sore throat (you may not even have noticed the sore throat at all). This is a simplification, but your body gets confused and begins attacking your muscles, thinking they are the culprit.

It randomly moves from joint to joint, and will often present a rash, joint swelling, or firm reddish lumps or nodules, particularly on the legs. Some people get uncontrollable jerky spasms. In my case, it felt like massive amounts of pressure, trying to escape from my joints. I felt like an InstantPot with no release valve. One day it would be my left knee and right shin, the next it would be my right knee and ankle, and the next it would be every stinking joint it could find.

Left untreated, it’s the principal cause of heart disease in many parts of the world. This is because your heart is also a muscle, and the body attacks it as well.

I’ve read everything I can lay my hands on about it. There is some speculation that the incidence is actually higher than reported in the USA because the symptoms are so easily attributed to something else by doctors who learned it as a classic disease in early med school classes but were told it had been “eradicated”.

I have had it several times, in the classic “every seven years” pattern, however, because no one was trained to look for it, it wasn’t diagnosed until the fourth time it occurred. The last time I had it, I ended up in a walker for a couple of weeks, and then a cane. I just finished up a seven year course of antibiotics. I am singularly blessed it has not affected my heart.

ARF was the reason I began taking my yoga seriously, way before I did weight loss.

Sorry to interject with rare and unlikely diseases, but your “random joint pain” caught my eye.