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Not to sound totally dumb...

jmaze
0 Recommendations

I've seen a pulmonary doc and a neurologist. Why do so many people have rheumotologists? (did I get close on the spelling?) That has never been suggested to me.

Explore topics in this discussion:

Autoimmune diseases Arthritis Pain Prednisone Lupus Rheumatoid arthritis Sarcoidosis

16 replies

Tawney

Well...I'm still maybe sarc but what drove me to the doctor 4 years ago was arthritis, from head to toe. Arthritis and joint problems deliver you to a rheumatologist's door. For me, the rheumatologist saw my blood tests were negative for all things arthritis and told me I was fine. When I decided it wasn't much fun and was in fact rather painful being considered fine with arthritis, I found the next door I walked through was an immunologist's. I think immunologists get the riddles that rheumatologists don't want to spend time solving. My immunologist is nice enough but slow at riddles. I guess I should be grateful that at least he doesn't dismiss riddles like some do.
Seriously, for some, joint pain is a big factor in their sarc and I think it's usually sero-negative. My immunologist only started testing for sarc a few months ago, after breathing issues came into the equation about 18 months ago and he finally ran sarc type blood tests. But the arthritis has been pretty unrelentless the whole 4 years.

CC

This is a question I have wanted to ask:
How many who are being treated for Rheumatoid Arthritis (with sarc) actually have a positive RA factor?
I ask this question because I have some joint pain but no swelling and I know you can have granulomas in the joints. So I am just curious to know if people really have RA, or it is really sarc but susceptible to the same drugs?
I can't seem to find any literature that clarifies this question.
Thanks for your input. This is a great place to learn and get support!
cc

micheleb

Arthritis, with swelling, is one of my biggest and most painful problems as well. I went through a couple of rheumatologists and although my blood work that shows inflammation such as sed rate and CRP were always high, my ra factor and ana were always negative.

I was being treated for seronegative ra when I got my sarc dx but my rheumy doc never really seemed convinced that it was sero negative ra. The drugs are pretty much the same. I tried them all, humira did help some but I have moved on to remicaid now. I have since stopped seeing the rheumy and just use my pulmonologist as primary for all sarc related stuff. He is convinced that all my joint pain and swelling is indeed sarc and not ra.

Sonoran

My husband saw a rheumy because he has a diagnosis of chronic gout in addition to his sarc.

Jack0

CC,

Excellent questions, I have had the same thoughts but didn't know how to ask it.

I aslo have joint pains (feet, ankles, 1 knee, groin, wrists and thumbs) but no swelling whatsoever.
At present I take no perscription meds and will have to be drugged, tied and dragged in to see a Rheumatologist....

nanner

I have positive RA factor, so was told I had RA in my mid-20s. Looking back at my history, the odds are very good that it was really mostly sarc causing my problems, as I don't have anything resembling classic RA. My rheumatologist had even quit calling it RA some years back, before the lungs acted up and the sarc diagnosis was made.

I used to get swelling in selective joints-left elbow, one of my pinkie joints, the first was my left big toe. With sarc my entire lower legs blossomed.

I'm also very prone to ganglion cysts at the joints, which doesn't help matters.

So to reiterate the question CC asked, are there others with positive rheumatoid factor who have sarc?

Tawney

I have arthritis badly but am seronegative re all auto immune arthritic things and have a negative RA factor. Like you, no swelling for me. I find Salazopyrin helps the arthritis and the side effects are nothing much to worry about.

singernomore

i think that it is generally thought that about 15-20% of ra is seronegative. however, some experts conjecture that much of this may be something separate from ra - either undiagnosed inflammatory arthritis of another type, or a different disease which has yet to be clearly defined.

but concerning the relationship to sarcoid - if sarc is truly an autoimmune phenomenon, as it is thought to be, there is no reason to think that anyone could not have both ra and sarcoid, as it is not uncommon to have two autoimmune illnesses. of course, then it becomes difficult to know which disease is causing the joint sx. generally wouldn't matter, as the treatments are similar (except that enbrel, for whatever reason, has not yet been shown to be effective w/ sarcoid).

paradox, comments?

Paradox

First off, the field of rheumatology is really the field of autoimmune diseases. The jury is still out on Sarc being an autoimmune disease - that's a whole other can of worms.
Many people see a rheum because of their path to diagnosis or because that's the doc that they feel most comfortable with. It isn't a requirement.

About rheumatoid factor (RF): This name is historical and not because of a relationship to a single disease. RF is positive in a proportion of people with no symptoms of anything. RF is also absent in approximately 15% of people with proven rheumatoid arthritis. The actual source of RF is not fully clear but it certainly is present in conditions other than RA (around 80% of lupus patients, for instance). It is really just a marker to try and relate symptoms to cause and by itself doesn't mean a whole lot - as many of you have noted it is possible to have joint pain without RF and to have RF without RA.

There is a fundamental difference between sarc joint pain and RA - that would be the deterioration of the joint in RA. Over time, RA becomes increasingly worse as the immune response destroys cartlidge and joints are deformed. Sarc has granuloma formation, which waxes and wanes, but does not actually typically target the destruction of existing joint structures directly.

As a side note, I've always found it interesting that there are some joints in body that are protected from RA - where it doesn't strike - and no one really knows why (at least not that I've heard).

Hope that answers some of it.

r9214ym

Hi. jmaze. I see a cardiologist, my family dr, an orthopaedic dr,opthamalogist, pain management dr, and know I've just added an rheumotologist to my list. oh, one more the lung dr. all of them started when the sarcoid started.

r9214ym

hi paradox. you get alot of good info and advice. are you a dr? thanks alot. i enjoy reading your comments

jmaze

Hello and thank you all for your input. Thank you too Paradox for explaining some of it in a way I could understand. I think I'll talk to my pulmonary next week when I see her about another doc. Possibly a Rheumotologist since I am having issues with all over pain and some knuckle pain. Don't guess it would hurt any to ask.

derekk

I had no idea how much inflammation I had in my joints and body until I started my treatment with magnesium(not oxide).
After the first treatment I realized:
My feet were inflamed to an extent that my shoes dont fit now tied as tight as possible. I could barely get them on before. I had to do the laces up every other hole and they hurt like crazy.
My legs were completely swollen all over people are commenting now that im in shorts how thin I am in the legs. I never thought I would ever hear "thin" as a reference to me in anyway again.
My face looked like a balloon and all blotchy my wife has taken to staring at me now and constantly saying how different I look.
My back and neck pain I was sure was from my injuries a crushed vertebrae and pinched nerve. Now almost all of that pain is gone. After 10 years of chiro. Wait till I tell him.
My socks any socks used to cut an almost quarter inch indent into my legs now there is a faint mark or outline.
After I applied magnesium gel in a total body massage there is no soreness and the muscles dont lock anymore. I even forgot about my hands that were completely arthritic and painful.

My long winded point is that before this I had no idea how swollen and inflamed I was.

The Sarc is another story but the symptoms and pain are significantly reduced.

micheleb

Yes, paradox is a doctor, isn't it great to have a resident doc on the board!!!

I was told the exact same thing that paradox said about the joint destruction and RF. I have a girlfriend who does have confirmed RA and her hand swelling looks much different than mine. Her swelling is concentrated AT the middle knuckle and they are red. My swelling is more diffuse and although my knuckles are puffy the majority of the swelling is between the knuckle and my hand. The tops of my hands and wrists are also swollen. My rheumy had said several times that my swelling didn't look like ra swelling and I never really knew what she met by that until recently!

jamee

interesting.... I never heard of a magnesium cream that you put on inflamed, painful joints?? Did I get that right? I have had a recent pain in the knees, ankles and hands could be the back is out and also sarc. Is the magnesium an rx? can you tell me more about it?

jjhand

Hi I started out being told that my ra factors were high so I was sent to a rum doctor he numbed my ankle and tried to get crystals from my joint but he didn't find anything so he did about 15 x-rays and came and told them to do a chest x-ray as well and my lymphnodes were very enlarged then a bronc. scope and Sarcoidosis that was July 07 and I still have my leg problems and all the extra weight gain from the prednisone and it developed into lymphodema went through 6 weeks of manual mesage treatment and they took 52cm out of my legs that helped but still the arthritis pain in my ankles and my knees best of luck to everyone. Thanks John

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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