Polymyalgia Rheumatic: new diagnosis?

[Carolina]

Dear Sjogren's Angels,

I saw my Immunologist yesterday and she thinks I may have Polymyalgia Rheumatica.

https://www.ncbi.nlm.nih.gov/books/NBK537274/

Does anyone know about this condition?

She's referring me to a Rheumatologist (I've never found a Rheumatologist I liked since my first one in 2002).  She agreed a good Rheumatologist is hard to find, but she thinks she knows of one or two.

Later the same morning, I saw an orthopedist about my shoulder and he thinks I need a reverse shoulder replacement!  I know I should do surgery sooner rather than later as my shoulder will only get worse, and I'm already 77.  But I cannot really contemplate surgery until I have some handle on my constant state of flare.

And I'll want a second opinion about this surgery.  It is so brutal, and has to be done right.

https://www.youtube.com/watch?v=gqitRa4dm1U

I had a hard morning, and still feel so miserable even tho' I'm better than I was last week.

It's always something, for sure!

Elaine

[Deb 27]

Elaine, I have known someone who had this and they put her on prednisone for about a year. I think she felt better pretty soon but they had to keep her on meds for longer term so it wouldn't come back. She lost a lot of weight before going on meds. She eventually came off meds and life went back to normal for her. That's about all I remember. I hope you get some relief very soon regardless. I hope you don't need surgery....... Thoughts and prayers for you!!!

[irish]

My mother in law had this and she was on steroids for over a year and it decreased significantly. The doctor told MOL that this condition can sort of burn out or go away. WE can hope this will happen for you. I would guess that you have more pain because of your other health issues. Hope things improve soon. Irish

[Liz D.]

I know at least two people with this.  Both were put on prednisone for awhile and have since done very well!

Liz D.

[Linda196]

I was diagnosed with PMR 5 years ago while taking daily prednisone, plaquenil and weekly methotrexate. My Doctor's only comment was "I've been expecting this, how do you want to handle it?"

Having done my research before the appointment, and having already pretty much decided that was what was happening, I had my answer ready: "increase Prednisone to 20 mg daily until effect, then wean back to daily dose, repeat when needed for exacerbation" Bless him, he agreed, and that was my life for about 2 years, with burst and tapers that started about once a month, then spread out to the point that I'm now where I can have remission for over a year, and have a quick flare that responds fast. In fact, I haven't had a flare in almost 18 months now so it may have burned itself out, which is the usual course.

It can be extremely uncomfortable, with tight muscles and what I can only describe as something that feels like rope burn in the shoulders and hips. What finally clicked for me was the feeling in my lumbar spine similar to the tendon burn and stretch felt during advanced pregnancy (and I was darn sure that wasn't the cause) and radiating tightness and burning pain from my neck up over my scalp.

I hope you fare well with it, but unfortunately, prednisone seems to be the only treatment. Without it, the condition will still run its course, but there is not much else that will handle the pain effectively.

As to the shoulder replacements, we had a saying years ago when I worked ortho; if people could see any orthopedic surgery, they'd never have any of it! Yes, it does look brutal, and orthopedic surgeons get a real work out performing it. We never anticipated everyone being able to watch it on youtube! It looks like a combination of stone carving and carpentry and sometimes an amazing amount of torque and effort is required. Having said that, replacements are quite effective in stabilizing the joint, improving mobility,  and relieving pain. I'm 68, and to be honest, I would think long and hard about it. My days of extreme activity (you know, hanging from monkey bars, pull ups and doing routine CPR compressions LOL) are over, and I've already made concessions in my daily life to minimize reaching over my head much. An excellent physiotherapist and a very skilled massage therapist help maintain what flexibility and strength I still have. I guess in my case a decision would be based on what symptoms and limitations I faced, how much activity I need to maintain, and what alternatives are available.

[Carolina]

Thanks Linda, Irish, Liz and Deb,

PMR:  The pain in my neck and shoulders (upper arm muscles) has been intense for several years.  I have treated it as a 'flare', but could no longer manage that on my own.

The pain in the morning made me think I just couldn't go on another day, but I always did of course.  And at it's worst every movement I made all day long is agonizingly painful.  Think constant terrible flu symptoms.

I do think it is PMR and I know steroids are in my future for some time to come, if that is the diagnosis.  I actually welcome that since what use is anything if I am in misery constantly?  I KNOW the terrible consequences of steroid use, but it IS the rock and the hard place.

I am amazed, Deb, that you were taking methotrexate and plaquenil and prednisone, and still PMR broke through all of that.  Those are all treatments for PMR, as you know.

I am waiting for the referral.

Reverse Shoulder Surgery:  On hold, even second opinion, until I can deal with this PMR.  Actually if the PMR is resolved, I think I can 'live' with the shoulder when it is not longer exacerbated by the inflammation of PMR.

Knee Replacement Surgery:  Actually, Knee Replacement Surgery is on my mind again, since my knee now actually collapses suddenly when I'm standing.  I think the original consulting 'group' rejected me because they were afraid I might 'mess up their' success rate. 

The knee problem exists far beyond just pain:  function is disappearing now. 

But again, all of this will wait until the PMR issue is dealt with and resolved if possible.

Thanks again. It is so wonderful to have such a great group of experts to consult.  And the 'fee' is perfect, too!.

Elaine

[Kathy57]

Carolina,

I hope your referral works out well and I hope you find a top notch, new, Rheumy.  After all that you have been through, you certainly deserve it!

I?m assuming they will be giving you more steroid meds?  Whatever it takes! 

Hang in there.  Some better news can?t be too far away from you.

Kathy

[SjoDry]

Elaine,

Do your research beforehand. My mom had PMR and was treated with huge doses (60 mg per day of Prednisone). This caused huge problems which led to some falls which broke vertebrae.
The PMR must be treated like this so it will not lead to Giant Cell Arteritis/blindness.

I know you always choose top-notch docs...

Best of luck.
SjoDry

[jazzlover]

Sorry to hear, Caroline. I know the pain must be terrible.

They tested me for that about 40 years ago .. twas negative at the time.

My game plan for the steroids would be to get on the lowest dose possible that works. Or go high, then stabilize. This is NOT medical advice, just what I would want.

Shoulder surgery? I hope I never have to do that one. I live with chronic pain in so many joints, shoulders are pretty painful, but so far so good.

Hang in there!!