Progression of other ailments after PMR diagnosis

Excellent question but I don't know what the best answer is! I attributed many things to PMR because I needed to justify taking more Prednisone to relieve the pain. The notion that the pain was caused by PMR was reinforced when the pain was relieved after I took Prednisone.

The problem is ... Prednisone is used to treat inflammation and not all inflammation is caused by PMR. Inflammation is the body's natural response to many conditions such as infections, trauma or simply from overused muscles. Not all inflammation is caused by PMR. Furthermore , PMR is just one of many autoimmune disorders.

There are better treatment options than Prednisone for other autoimmune disorders. The common belief is that Prednisone is the best treatment for PMR. However, maybe it isn't PMR or perhaps we have some other condition that isn't autoimmune related.

I think it all leads to a knee jerk reaction to take more Prednisone whenever we experience any kind of pain. One scenario is that we might take Prednisone when we have an infection or something like cancer. We suppress our immune systems by taking Prednisone when the inflammatory response is our defense for fighting an infection, repair trauma or stop cancer from spreading.

It doesn't help when non-medical professionals on the internet encourage us to take more Prednisone or tell us how to taper off prednisone. They don't have access to our medical records or the ability to order tests and procedures to determine what exactly is causing the pain. The same people say our doctors are ignorant because they don't know how to treat PMR. Well ... it might not be PMR.

It is no wonder doctors become impatient when we don't listen to their medical advice. I now realize how patient my rheumatologist was with me. Had I listened to the people on the internet, I would still be taking Prednisone for PMR and other conditions when there were better options that were available for me.

I remember my ophthalmologist cautioning me about taking Prednisone for uveitis which is a serious autoimmune disorder that causes inflammation inside the eye. Uveitis can cause vision loss if it isn't treated promptly after determining what is causing it. My eye would turn red and become inflamed whenever I had a flare of autoimmune uveitis and it was appropriate to take Prednisone.

There are other types of uveitis that are caused by an eye infection and also traumatic uveitis. My ophthalmologist said Prednisone would not be indicated and might do more harm than good. A dilated eye exam was the only way to know what was causing the uveitis. My ophthalmologist said I would have no way of knowing what type of uveitis it was but the symptoms would all be the same. Depending on the type of uveitis, an antibiotic might be the treatment if the uveitis was caused by an infection.
https://my.clevelandclinic.org/health/diseases/14414-uveitis
"Uveitis can happen for many reasons. The most likely known causes include:
Infections.
Systemic causes.
Injuries.
Medications."
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By the way ... I think trigger fingers are associated more with inflammatory arthritis rather than PMR.
https://www.mayoclinic.org/diseases-conditions/trigger-finger/symptoms-causes/syc-20365100
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I had frequent trigger fingers when I was diagnosed with PMR. I was also diagnosed with reactive arthritis in addition to PMR. I'm a person with multiple autoimmune conditions. There isn't any rule that says you can only have one autoimmune condition. In fact, if you have one autoimmune condition, the risk of having other autoimmune conditions increases.

HI @orangecat -I’ve been thinking about your question, (but I can’t speak about trigger finger ) You have revealed elsewhere that you are 70 yr old male, with a cardiologist. And you had your shoulder looked at, so you have some kind of physical medicine doctor (an orthopedist? ? physiatrist? Osteopath?- ha ha I’ve seen all three over the years! ). If you live in USA you have a PCP and are on Medicare ? Is your rheumatologist in the same system as your PCP?

Here is my take on your question -
1) Without question, you should be aware of the symptoms of GCA . My Rheumatologist was always checking my temples, and both PCP and she asked about headaches, vision, and jaw -pain. But I swear she never mentioned GCA by name.
2) I was a rapid responder to Prednisone ( when increased to 30mg/day after a flare at 20mg) and then had sustained freedom from pain and stiffness - so “in remission” The last task of being a PMR patient was to taper to zero. I think others and myself can attest to weird physical feelings while tapering. I had an open script to go for blood work for CRP and ESR tests. When I thought I was having a flare up, blood work was normal- so as you put it - I was incorrectly associating a bilateral pain as a flare up. In fact, once my osteopath manipulated my neck, it relieved pain in shoulders and arms down to wrists
3) It was so difficult to get a rheumatologist appointment. I wish I had asked how many PMR patients does she actually treat. She shut down the conversation about Kevzara pretty quick. I was expecting more of a coordination of care between my PCP and Rheumatologist. But here I am almost 2 years later , I didn’t need biologicals and I went into remission quickly- what per cent of her total patients that represented , I guess doesn’t matter now.
4) So on that note I hope you will be feeling better soon, but I bet it will take a year or more : ( And you can definitely have more than one thing going on at a time as @dadcue says. Cheers and Get Well in 2025!

@dadcue, @orangecat, @nyxygirl, @johnbishop, and all...
Well, I got my first taste of yucky PMR and GCA the day after my 1st Covid infection last July. My have been after 2nd in Nov... doesn't really matter now. It was horrid. Quite a shock to my and sent me into a 3-5 day pain binge in bed and frightened not knowing what had hit me. I called my Primary who diagnosed over the phone and sent me Prednisone, I believe 10 mg daily at first. Went to 15 mg daily, now after a year, down to 8 mg daily and will not even consider reducing further. My Rheumatologist added 7.5 mg Methotrexate weekly. Wow, did that help! I still take the Methotrexate and he tells me I appear to be at the sweet spot for boxing in these things.

Much better, yes. But, now, have a bunch of pain on my right arm, severe nerve shocks occasionally in the middle of my forearm that debilitize the arm for several days. Now have electrical shocks from my shoulder to fingers, along the shoulder up the right side of my head, with bad headaches, right ear ache, and right jaw pain. Not heart. Not TMJ. Seems to all be connected with the right nerve traveling that route. Blurred vision is part of it at times. Now, for several months, I've had severe heat attacks on the right side on of my face... flushing bright red, very hot to touch that spreads to my entire head. Then, begins the sweating with sweat pouring off my temples onto my face, in my eyes, down my neck... all over my head.

Rheumatologist says not Vasculitis, which I do have. Not related, per him, to PMR or GCA. Neurosurgeon says not related to cervical nerve issues I've had since tennis accident in my 20's. So, while in hospital a couple months ago with heart attach/disease issues, an angel nurse brought me an ice pack to put under my head at the bend in the neck/cervical vertebrae. It all stopped. No more flushing, no headache, no heat, no sweating, no right arm issues.... I slept soundly and without interruption for the first time in months. And no additional medication. AND, no diagnosis.

Since, at home, in bed most of the days, I keep a cold cloth on my right neck at the vertebrae along the shoulder. At times I sleep, I wipe my face frequently with a cold cloth, and often add another cloth on top of my head!!!! next to the bi-pap head gear! Surely good I sleep alone or I'm sure by now I would!

There you go. I still think it had to do with PMR, GCA or Vasculitis. makes sense to me... Perhaps there will be an answer. Currently, I'm tired of it all and just want to enjoy the relief I'm getting. Mayo ask more questions again. May not. Neurology should be involved, but... So, here we go again, right? I prefer a break from the constant fights for answers. Tired of fighting. So, cold cloths it is. Eating cold helps too, some,

That's my story for now. Anyone make sense out of it? Share some of it? Hope not, but kinda would like a partner in this distress...
Blesssings. Elizabeth

I would like people to know that the diagnosis could be something other than PMR. I have been living my nightmare for 2 years now. Mine started with the classic textbook symptoms for PMR, bilateral joint pain, first the hips (couldn't even roll in bed or get out of a chair) then progressed to the shoulders, then to other joints. I responded to prednisone like a miracle. My local Rheumy eventually tried to wean the prednisone and added methotrexate when my bilat shoulder MRI's ( I had developed bilat "lumps" on the clavicle bones) showed questionable Rheumatoid Arthritis, amongst multiple other possible diagnoses. I also had developed Prednisone Induce Diabetes and weight gain; I started oral hypoglycemics. I was sent to an Orthopedist, for my shoulder pain, he wanted to do bilateral shoulder replacements! I said, no thanks, not until somebody figured out what was wrong with me. ( This is the same doc who said I needed a total knee replacement, just 2 months before my PMR diagnosis. I always will wonder if I really needed that surgery). I went to a different Orthopedist who said I did not need shoulder replacements, I needed biopsies! Shortly after being on the prednisone, I developed these strange skin lesions, purpura, in of all places, the crotch. It was felt to be a side effect of the prednisone. Finally, I went to a Dermatologist who biopsied those skin lesions. Diagnosis came back as Amyloidosis. I immediately made an appointment with a specialist at the Cleveland Clinic, 2 hours away. He did multiple studies and found that I also had Multiple Myeloma, a Cancer! of the plasma cells within the bone marrow, causing bone pain. The Amyloidosis is similar, however, not a cancer, but also a disease of the protein cells of the bone marrow where abnormal protein cells deposit into multiple organs rendering them non-functional. Mine happened to be in the skin, and no major organs, that we can tell. My Rheumatologist at the Cleveland Clinic doubts I had PMR and feels that my Amyloidosis had deposited into the joints, causing all the pain, she finally got me off the prednisone. I went on to have 4 months of chemo followed by a Stem Cell Transplant a couple months ago. I developed complications during this treatment, was in ICU and subsequently developed kidney failure, stage 3.
So, I guess my message is, please seek out other professional opinions, don't hold back, even if they think you are nuts. It could be something other than PMR and hopefully, eventually, they will find what is causing all your symptoms, especially if your current treatment is not working or you continue to develop other issues as the folks above have experienced. Thanks for listening.

My first experience with an autoimmune disorder wasn't PMR or GCA. It was triggered by an infection. The disorder I first encountered derives its name from a "reaction to an infection" and is called Reactive Arthritis (ReA).

ReA pain was the weirdest pain I have ever experienced. Going to sleep at night was suddenly turned into a harrowing nightmare of excruciating back pain. However, I would wake up and still have pain. Instead of saying I was going to bed to sleep, I would say my bedroom was a torture chamber and I was going to bed to be tortured.

If the nightly torture wasn't enough, my encounters with health care providers during the day weren't very helpful. I don't think they understood the amount of pain I was having every night. I wasn't having too much pain during the day during my visit with a doctor. The recommendation was ibuprofen and a new mattress.

The nightly torture went on for a couple of months. I'm not sure if all the diarrhea was an enteric infection OR from toxic amounts of ibuprofen. In any case, I wound up in the emergency room severely dehydrated and believing I was on the verge of death.

Fortunately, by then I had an extremely inflamed red eye that looked hideous to the emergency room doctor. After a few liters of IV fluids, there was more concern that I might go blind and almost no concern for my back pain and diarrhea.

It was an ophthalmologist who gave me my very first dose of prednisone. I didn't take Prednisone continuously for the next 20 years but I took incredibly high doses and tapered off quickly for recurrent flares of uveitis. I had recurrent back pain too but prednisone made that disappear each time so I never complained about all the back pain I was experiencing.

I also took Prednisone for trigeminal neuralgia (TN) except the neurologist said TN wasn't treated with Prednisone. I naturally treated myself and didn't see the neurologist anymore. I treated TN with Prednisone until the facial electricity wouldn't stop. I was dehydrated and in the emergency room again. It was difficult for me to eat and drink when my face was electrified. Multiple sclerosis was ruled out after brain surgery stopped TN from happening.
https://www.webmd.com/multiple-sclerosis/ms-trigeminal-neuralgia
and
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344#:~:text=But%20while%20compression%20by%20a%20blood%20vessel,trigeminal%20nerve%20also%20can%20cause%20the%20condition
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I don't recall exactly when PMR was diagnosed. I just remember PMR started after I decided to throw away my entire stash of Prednisone. My cumulative dose of Prednisone was massive by then. At first when PMR symptoms started, I was told I couldn't take Prednisone anymore.

Finally, PMR was diagnosed nearly 20 years after my first dose of Prednisone, I remember thinking that PMR was a blessing to me. I was prescribed Prednisone daily for another 12 years starting out with a 40 mg dose.

Prednisone was a big part of my life for nearly 35 years. I'm happy to be off Prednisone. I think Prednisone tried to kill me a couple of times but I was saved in an ICU. Prednisone did relieve a lot of pain so my death would have been relatively painless.

Actemra has been substituted for Prednisone and I couldn't be more pleased. Not only was I able to stop Prednisone, I also stopped many medications that were treating Prednisone side effects.

I'm extremely tired of everything. However, the overwhelming fatigue was probably due to adrenal insufficiency because the fatigue isn't overwhelming anymore.

Wow, that is a long-term battle! Being on Prednisone that long certainly must have played havoc on your body. I could not tolerate it for even a year. Although, I do recognize it was a miracle drug for pain relief, I wanted off of it because of the side effects.
It is so weird what our bodies go through with all these strange, unexplained symptoms, dealing with them daily, yearly etc. It is no wonder we are tired of it all, waiting for answers and living our own personal hell.
Wishing you and everyone here a better year ahead,
Jeanne

I would ask when you receive your diagnosis of PMR. Have you considered covid as the driving force and do you have co-morbidities?
While there does to seem to be recent studies on the effects of the covid virus on the MS system, here is a Cohort study. There might be more but the frustration is you may not ever know what is behind your symptoms. It is my assertion that the covid virus has done more damage than initially understood. The research is out there and so are the long covid clinics which are not easy to get in to.
Here is a link. Best wishes to you.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10466592/

@dadcue
Agreed! As you know we both have the same multiple autoimmune conditions. The one difference is that I only had the uveitis when I was first diagnosed with the reactive arthritis- one of the classic symptoms of this disorder—I was also treated with prednisone and three different drops for my eyes. The whites of my eyes were blood red and my pcp was also worried I would lose my eyesight!! Thank god I have not had a repeat of that—I feel for you, I really do—it was very painful as well….
Prednisone has also been a constant off and on for most of my life (I’m 75) since it was used when I had severe asthma. Now they are more hesitant to use in large doses because I’m now diabetic!!
Thankfully I seem to be infection free after an awful bronchitis that lasted 3 months—it’s amazing what they can find out when the right tests are run—my pulmonary doctor ordered a sputum culture that was positive for bacteria and they gave me the correct antibiotic and I was better in a week!😃
I’m making an appointment to try Actemra and hopefully I can finally get off prednisone-I’m currently on 5 mg but I’m having a fair amount of pain and stiffness from my arthritis. Not everything is caused by my PMR, which is why I recommend that some people get checked for other autoimmune diseases. Thank you for bringing that to our attention!

@dadcue
Wishing you the best in your health journey in 2025…and may you be pain free!

Thank you for sharing your stories. Very educational and helpful. Best wishes for your complete healing soon.