I was first diagnosed with PMR a little over 6 yrs ago. My initial symptoms were atypical. Although I had extreme fatigue, what brought me to the Dr. was horrible pain in my forearms. Shortly after I had jaw pain. After tons of tests, including a temporal artery biopsy (negative), I was told I had PMR. I was extremely anemic and had lost almost 20 pounds. I was seen by a Rheumatologist and put on prednisone. My treat lasted just 13 months.
Fast forward, over the last couple of months I have been experiencing fatigue and calf pain/ache. I muddled through it as I had been under the stress of losing my father after 5 yrs of caring for him, and dealing with the family trust he set up and his estate. However, calf pain/ache was wearing me down and I had begun to have hip pain that manifested after sitting. None of this even rung a bell with me as being PMR.
At any rate, I went to the doctor last week and he has run a battery of blood tests, and a doppler on my calfs. Most of the blood tests are back and they rule out Lupus, Lyme, Rheumatoid Arthritis and Anemia. However, my C-Reactive Protein and Sedimentation Rate is over the normal parameters. The CRP is 3x the normal level, my sed rate is only 7 mm over the normal range. I may have lost a few pounds but that is about it.
The Dr. is leaning towards a new PMR flare but hasn't made a diagnosis or treatment plan. I don't have another appointment with him until the 10th of April.
Now that I've bored you to tears, I'll get to my questions. Have any of you had atypical PMR symptoms? Been diagnosed with PMR without anemia, or a significant weight loss? Or had a relapse with different symptoms from your initial experience?
I never thought I would actually look forward to taking a steroid, but I just can't stand the fatigue and aches and pains any longer.
I'm at my wits end...... thank God I have a husband that is more than kind and is holding up my end of things here at home.
The impression I get is that a good half of patients with PMR are told at some point they are atypical! It may be because they are in their late 50s so perceived by their doctor as "too young", or they have just hip pain, or just shoulder pain, or they consider their stiffness to last all day rather than being "morning". I have never been anaemic in my life and I gained weight with PMR - because I had 5 years being unable to exercise because I wasn't diagnosed but still ate food! My blood markers have also never been "outwith normal range" - not because the ESR wasn't raised but because it was about 16-18 when actually MY normal is 4. I had severe forearm pain that was put down to RSI - it was tendonitis as part of long term untreated PMR. I eventually went away with pred for the PMR but took a few months.
Your original diagnosis I suspect was possibly not entirely correct - the jaw pain could have suggested you had large vessel vasculitis affecting your upper chest arteries, having a negative TAB does NOT mean you don't have GCA, it means it isn't to be found in the tiny piece of artery they look at and there are a range of reasons for that: GCA forms what are called skip lesions, there are bits between that don't have any; sometimes it doesn't get to the temporal artery at all, the only reason it is used is because it is easy to biopsy and you can manage without it; the surgeon and the histopathologist have to be competent - it has been known for the sample sent to the lab to be a vein!! And so on...
Even so - to be off pred in just over a year is exceptionally fast, PMR has a median (average) duration of 5.9 years according to a recent study. Less than 20% are able to get off pred in under 2 years - and are felt to be at a higher risk of a relapse at some later point. And once you have an autoimmune disorder you are never "cured" - there is always a chance your immune system will go haywire again. It might be another dollop of PMR or it might be an entirely different a/i disorder.
I was diagnosed with PMR 2 years ago.
I did not have an elevated CRP and had only a slightly elevated Sed Rate....no anemia and was not losing weight. Also had hand and forearm pain that I continue to have.
The other symptoms I presented with were more "classic"....neck, shoulders, hips, groin, fatigue.
Responded quickly to 15 mg of prednisone and still currently taking 11 mg while trying to slowly decrease with the DSNS method.
No two people are alike.
I’ve been told I’ve got atypical PMR because I’m in my mid 50s and my hands are involved, which apparently is unusual in PMR. However, after 20 months of signs and symptoms, they still talk about Lupus and RA, although the tests are all negative. Like Eileen, I’ve got tendonitis, which is improving on pred. The carpal tunnel symptoms are also improving and I no longer need my splints at night.
I’ve heard that you can have a relapse of PMR with a different presentation than the original signs and symptoms, but I probably heard that from Eileen.
Sorry to hear about your father. That will add to your stress. I’m really pleased you have a supportive husband though. Worth his weight in gold!
Good luck.
Thanks for your thoughts. The reasons I feel fairly confident of the 1st diagnosis is I had the complete checklist of symptoms, albeit the area of pain., anemia, weight loss, low grade fever, loss of appetite, etc. Also, the Dr did a battery of tests, (in fact they found a Thyroid mass, and kidney stones during exams) she was so thorough. As for the GCA, the surgeon was a well respected one and I don't have a reason to think that he wouldn't know what needed to be done. And as the only symptom that even pointed to GCA was the jaw pain, I had no headaches, tender scalp etc..... so who knows?
I know now that I probably came off the medication too soon. Didn't realize that until I did some research just recently. I had moved from New York to Michigan when my husband got transferred and had to see a new doctor, it was he that weaned me off the prednisone.
Although I realize that PMR can return, I was pretty surprised because it's been so long. But as you say there really isn't a "cure".
While I don't want anything to be wrong with me, I'm hoping it's the devil I know, rather than the devil I don't.
Thanks again...
Thanks for your response.
All my symptoms albeit the areas of pain were textbook, weight loss, anemia, fatigue, low grade fever. If I had the same symptoms as the 1st time I guess I'd feel "better" about this. I responded to the prednisone fast as well and felt great....until now.
I'm finding that what you say is so very true.... "No two people are alike."
Wishing you the best.
Not only are no two people alike - I get the decided impression that flares/relapses in the same person may be quite different. Others who have had PMR twice (with several years between in some cases) say it and I have had 4 major flares and the last 2 have been totally different from the first two. The only link has been a low back problem which seems to manifest a few months before the real flare happens and which can be managed if a different approach is used (physiotherapy with therapeutic massage and manual mobilisation of spasmed muscles). If that is done, I need far less pred to manage the flare itself.
I do know of people who had 7 or 8 years between episodes and one I'm sure was well over 10.
I mentioned poor surgical technique only as one reason - even the best surgeon in the world won't find evidence when skip lesions are there or the GCA is not even in the temporal artery. With jaw pain I'd expect it to be present lower down. You might find this interesting:
https://academic.oup.com/rheumatology/article/56/4/506/2631560
Thanks for your kind words, Claire. My father was a remarkable man, he was 93 when he left us. My husband transferred back to Michigan when dad could no longer physically care for his home, although he drove up until a year before he passed. I'm grateful for the last 5 years we had with him.
It must be fairly routine for the doctors to look at things like lupus etc.... because my dr. is covering all that territory as well. So far everything is negative on those things. Thank God.
I responded very fast to the prednisone the first time around, hopefully you will too. I was lucky in that I had no relapses when reducing the meds either. I'm surprised and baffled by this relapse, it's been so long. I guess we just have to accept that what Eileen says is true....there just isn't a "cure".
And yes, my husband is a gem, I'm so very lucky. He's been through this routine before and has jumped back in like a pro.
Well Claire, it's a journey isn't it? But I will say it could be worse so in that I'm thankful.
Best wishes and good luck
I beginning to find that out as well.
In thinking about PMR and the inflammation it is known for it brought to mind something that I never thought of. Over the past 9 months I have had MOHS treatment 3 times for a squamous cell skin cancer in the exact same spot each time. I queried the doctor this last time about why it kept returning to the same area. His answer was interesting. The first two times I had sutures to close the area.... he decided not to use sutures to close but to leave the wound open to heal. He explained that he believed the sutures may have caused an inflammation that resulted in "attracting" the cancer cells to reform. I'd be curious to know if this may have been the catalyst for the return of the PRM this time around.
Moving on, I have not thought about the use of physiotherapy as supplemental treatment but it makes sense. I will be asking my doctor about that as well.
Thanks
I had a positive right temporal artery biopsy which confirmed GCA but was also told, if it had turned out negative, another biopsy would have been carried out. Eileen describes the reasons why this is important.
Physio in the sense of "exercises" is not always a good thing with PMR, it can lead to severe delayed onset muscle soreness which then takes a long time to resolve - mine is targeted manual mobilisation of the trigger spots in muscle groups and inflamed fascia associated with myofascial pain syndrome. It is caused by the same cytokines that underly PMR but instead of being systemic (all through the body) they are concentrated in inflamed and hardened muscle fibres or the fascia and are released during the physical therapy - which can make you feel as if you are flaring until you have washed them out of the body. I have a superb hospital physio but massage therapy is a recognised complementary approach here. In systems where they are a bit wishy about it a sports physio or massage therapist - like tennis players use - can work wonders for us too!
We never have these special people in our lives for long enough, however old they were when we lost them. You always want them for longer. Your father certainly sounded amazing.
Have you been prescribed Prednisolone yet or is your dr still doing tests? If he starts you on steroids, I hope you get a rapid response.
Good luck in your continued journey with your husband by your side every step of the way! I’m sure he wouldn’t want it any other way. It sounds like you’ve had a tough time, what with the skin cancer on top of everything else!
Take care.
I too have been getting physio treatment, and the exercises given to me have been all about keeping my spine straight, dealing with severe back pain for a while, helping heal a rotator cuff injury (or two) that sort of thing. I continue with exercises I've been doing for many years. None of the exercises are arduous, and my current physiotherapist has always urged caution when I do them, not to continue if they are painful to perform. She also does mobilisation, and has done a few other techniques in which I am passive, dry needling and low intensity light therapy etc. With the exception of the light therapy, which is supposed to help reduce cytokine production, none of the physio has been specifically directed towards the PMR itself. This is quite different from the kind of physio I got when working, when I got a repetitive stress injury and had to strengthen the affected muscles.
Puzzling. If you are being treated with prednisone that should wipe out traces of the giant cells after a relatively short time so I'd have thought a second biopsy would be even less useful than the first.
The benefit of a positive biopsy is that it's a definitive diagnosis. No one can say a few months later that you never had GCA. But a negative biopsy doesn't mean that you don't have GCA.
Oh Claire you are so kind.
I see the doctor next week Tuesday. Don't know if he'll want to do follow up blood tests or not. Hoping he will start treatment or refer me to a Rheumatologist. I just want to get it started so I can go back to a relatively normal life. The meds works fast (and well) the last go around, I'm praying for similar results this time.
The skin cancer is the result of being a "sun child" when I was young. We lived at the beach in the summers. I've had 5 Mohs treatments in the last 15 months. But to be honest, I am very lucky, the kind of cancer it is once taken care of they do not spread, so it's just an inconvenience.
There is a study somewhere that showed that doing a second biopsy later didn't improve the results. Often they do both sides at once - which also seems a bit OTT given that only about 40% of TABs are positive anyway, even in patients where the symptoms are strong enough to make pred advisable.
I was just looking at your post and saw that you also have hand and forearm pain. This has been a red herring to my rheumy as he thinks that if hands and wrists are involved, it can't be PMR, although I have all the other signs and symptoms, and we have been advised by Eileen that hand involvement can be part of PMR.
I've had PMR for 20 months and am down to 9/10mg Prednisone using the DSNS method, but my rheumy has added Hydroxychloroquine, which I'm undecided about regarding its effect. I find the painful hands restrict me with my daily activities, and its the hands that worsen as I reduce the Pred.
Good luck with your journey!
Which seems to me as good a reason as anything to not reduce...
I have had significant hand and forearm pain that preceded my diagnosis of PMR.
I had cervical spine surgery back in 2012 and the hand pain was diagnosed as a peripheral neuropathy or cervical radiculopathy secondary to the spinal cord damage I have. I have been on Neurontin (gabapentin) for it for many years with slight improvement. Now I wonder if it is related more to the PMR and not the spinal issues or if it is a combination of both.
Regardless, I have had severe burning pain, cramps and weakness in both hands since 2012 so I don't doubt that PMR is a contributing factor.