Rheumatoid Drs

Posted by bren0718 @bren0718, Mar 8 10:08am

I was diagnosed with PMR in August of 2023. My family doctor has been all I have seen about my disease. I was ok with her until I came on this support group and now realize I dont know much about the disease itself or about tapering off of the prednisone. In December I was diagnosed with severe osteoporosis. My Dr told me to start tapering off quicker . I have gone from 20 mg to 7.5 . She never told me at what rate to taper or that if I was having a hard time I could go back up for a bit and then try again. I think I need to see a specialist after seeing all your comments. I have only had blood work done the one time and don’t understand the numbers that people are posting. I feel I have done myself a disservice by not seeing a specialist. Do any of you just have your family physician treat you ?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@dadcue

My hand surgeon said it would depend if the ends of the tendon could be found and sewn together again. One end might have recoiled back into my arm. After surgery the surgeon said he found the ends of my ruptured tendon except they were too frayed to be sewn together. For that case, the index finger has two tendons attached. The index finger can still work with one tendon.

My surgeon said he cut one tendon to my index finger and moved it over and reattached it to my thumb. It felt weird after surgery but I'm used to it now.

Surgical treatment is to either place a piece of tendon, taken from elsewhere, between the two ends (Tendon graft) or to take another tendon in the hand and move it to take over the function of the ruptured tendon (Tendon Transfer).

The tendon most often used as a transfer is one of the two extensor tendons to the index finger.

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Ah. That makes sense. My brother had something like that when he blew his knee out on a Ski slope and they had to divide a ligament on the slide of His Knee and attach it in the middle where the ligament was too messed up to use.

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@pb50

@carnie16 - great advice. I agree that particularly in flares you need to get the sugar out of your diet.

I do worry about increasing from 7.5 to 8.5 in response to pain. To me that just makes the hopes of weaning more difficult. Again, I have RA not PMR. but I do use Prednisone on flares. I would always talk my my Rheumy. But if I didn’t have one, I would use the same logic going up as going down - small increments and using other mitigants - like reduced sugar.

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RA is quite a different disease. My rheum was telling me that PMR is not classified as a arthritis. The PMR disease process is not happening on the surfaces of our bones at the joints, creating permanent damage. PMR happens in connective tissues, particularly where connective tissues join muscles and bones, and typically does not lead to permanent bone damage. In fact, it may not lead to any permanent damage at all as it faces and wanes over the natural course of the disease.

Just wanted to point that out.

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@bren0718

Thank you for your advice. I did message my family Dr for a referral. Unfortunately it takes about 3 months around here to get into someone and that is if I’m willing to drive an hour away. I’ll continue to try a slower pace to taper at in the mean time.

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Hello @bren0718 do you live in USA ? I ask because you us the term family doctor, not PCP. to learn about PMR i suggest this site : https://www.pmrandil6.com/

Look at all the slides , under resources tab scroll down to the two videos. In UK , PMR is mostly managed by Primary care physicians- so not unusual - my experience was that my PCP would NOT increase my prednisone dose above 15mg, which is what i needed for 100% relief of morning pain and stiffness. I was able to see a rheumatologist in 1 month in Boston -area.

BTW @pb50 it is well recognized the PMR is an auto-inflammatory disease - not auto-immune.

the attached papers helped me understand PMR -

Shared files

update on PMR 2022 JOIM-292-717 (update-on-PMR-2022-JOIM-292-717.pdf)

impediment to living life pone (impediment-to-living-life-pone.0126758-1.pdf)

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@aussiedogmom

RA is quite a different disease. My rheum was telling me that PMR is not classified as a arthritis. The PMR disease process is not happening on the surfaces of our bones at the joints, creating permanent damage. PMR happens in connective tissues, particularly where connective tissues join muscles and bones, and typically does not lead to permanent bone damage. In fact, it may not lead to any permanent damage at all as it faces and wanes over the natural course of the disease.

Just wanted to point that out.

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Yes. I’m aware. I was diagnosed 12 years ago with an acute, terrifically painful onset in ankles, hips, shoulders, - and hands. The Rheumy then said I had symptoms of RA but large joint areas were more emblematic of PMR. I was sero negative but we agreed to treat as RA and see what happened. So I went home with Humira and it provided dramatic relief.
Over the years, I evolved to sero positive. But I still have large joint involvement as well as more classic RA sites. I have weakness and pain in my hands but virtually no swelling ever and joint damage barely beyond what would be age appropriate. I do have frequent trigger fingers and have had three surgeries to release them.
I’ve been on multiple biologics and am on Remicade for four years now. When I flare - as I recently did with pain in shoulders, knees, ankles and hands - I was given Prednisone to augment my Remicade.

So I stay abreast of both diseases and continue to have symptoms of both.

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My PCP first made the diagnosis in Jan 23 and he has been on top of this since day one. He knew that Kevzara was in clinical trials and his goal was to get me off prednisone ASAP.
I came off prednisone entirely 1year after diagnosis and off Kevzara last month but it is my go to in case of a flare. I am really sorry that your doc does not seem to being as attentive to PMR.

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@aussiedogmom

RA is quite a different disease. My rheum was telling me that PMR is not classified as a arthritis. The PMR disease process is not happening on the surfaces of our bones at the joints, creating permanent damage. PMR happens in connective tissues, particularly where connective tissues join muscles and bones, and typically does not lead to permanent bone damage. In fact, it may not lead to any permanent damage at all as it faces and wanes over the natural course of the disease.

Just wanted to point that out.

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What you say is true. However, there is nothing that prevents a person with RA from developing PMR. The same is true for people with PMR who also have osteoarthritis. You can have any type of arthritis and still have PMR. It doesn't have to be one or the other.

I was diagnosed with spondyloarthritis at the age of 32. My prior diagnosis did create some confusion when I developed PMR at the age of 52. My rheumatologist eventually just said it was "unfortunate" but I had both.

In my case, PMR exacerbated my arthritis to the extent that I didn't know what was causing what --- it would hurt everywhere. My rheumatolgist called it "systemic inflammation." Another phrase used was a "full range of rheumatology conditions." I personally thought it was a "hybrid of things."

All I knew --- whatever "it" was --- the pain wouldn't stop unless I took a lot of Prednisone for a very long time.

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@nyxygirl

Hello @bren0718 do you live in USA ? I ask because you us the term family doctor, not PCP. to learn about PMR i suggest this site : https://www.pmrandil6.com/

Look at all the slides , under resources tab scroll down to the two videos. In UK , PMR is mostly managed by Primary care physicians- so not unusual - my experience was that my PCP would NOT increase my prednisone dose above 15mg, which is what i needed for 100% relief of morning pain and stiffness. I was able to see a rheumatologist in 1 month in Boston -area.

BTW @pb50 it is well recognized the PMR is an auto-inflammatory disease - not auto-immune.

the attached papers helped me understand PMR -

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Gosh I appreciate everyone taking the time to educate me on the differences between PMR and RA. I will just say that my Rheumy in NYC was quite comfortable advising that I had symptomatic overlap but it doesn’t matter. We treat with an anti-TNF and If I have a period where the anti-TNF isn’t addressing the pain, prednisone will. So to me - I understand distinctions between the two quite well - I just also understand that sometimes the difference is without distinction.

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@pb50

Gosh I appreciate everyone taking the time to educate me on the differences between PMR and RA. I will just say that my Rheumy in NYC was quite comfortable advising that I had symptomatic overlap but it doesn’t matter. We treat with an anti-TNF and If I have a period where the anti-TNF isn’t addressing the pain, prednisone will. So to me - I understand distinctions between the two quite well - I just also understand that sometimes the difference is without distinction.

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I'm in the same boat except an IL-6 inhibitor (Actemra) works better than a TNF inhibitor (Humira). I can't say Humira "failed" but I needed Prednisone to supplement Humira. That was disheartening to me because I was able to get off Prednisone completely with Actemra.

My rheumatologist asked me which biologic worked better for me because I couldn't take both Actemra and Humira. He added it would be impossible to "optimally treat" two different conditions or more than two with a single biologic.

It was entirely my choice to take Actemra. My rheumatologist agreed with my decision saying it was better than being on Prednisone for the rest of my life.

My ophthalmolgist wasn't so pleased with my decision to take Actemra. She said it was just a matter of time until uveitis would flare up again.

I'm solidly in the camp that says whatever works best for you as an individual. At this stage, I have taken so much Prednisone, a supplemental dose once in a while probably wouldn't do any more harm than it has already.

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@pb50

Oh snap. You need a rheumatologist. Badly.

What town do you live in?

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I live in Lynchburg Va. I will have to travel to a larger city to get into a specialist. Still it may take up to 6 months to be seen.

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@bren0718

I live in Lynchburg Va. I will have to travel to a larger city to get into a specialist. Still it may take up to 6 months to be seen.

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Wow ... Lynchburg does look like it is surrounded with trees. I bet it is nice there. I live in the rural Midwest state of Iowa. I live in Iowa City which is a relatively small city. In Iowa, we don't even have what people consider a "large city."

Fortunately, in Iowa City there is a large university hospital. This hospital is too large for many Iowans who prefer their local doctors -- nothing wrong with that. Many local doctors will make arrangements for their patients to be seen by a specialist at the University Hospital. Depending on many factors, a "doctor referral" might be faster than a patient "self referral."

If transportation is a problem, the University Hospital has a fleet of cars which go out and pick patients up and take them home again. The specialists at the University are just "consulted" and give advice to the local doctors about the best approach to manage their patient's condition. The specialists at the University don't take responsibility for all of a patient's health care needs.

I had access to many specialists here in Iowa City. Too many specialists isn't ideal either.

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