PMR newly diagnosed

[jacdo]

Hi everyone, this is my first post. I was originally following the Psoriatic Arthritis posts but last week have now been given a PMR diagnosis.

To give you a picture of my story, I was 53 years old when I came down with sudden pain and stiffness in my thighs, upper arms and neck in May 2017. Since then I have had numerous blood tests, GP visits, 3 visits to different rheumatologists, x rays, MRI scan and appointments with a hip specialist.

I was diagnosed with PsA in July 2017 but when I didn't react to a steroid injection, that diagnosis was rejected and I was advised that as I have a sedentary job it was probably a mechanical problem and I should take up yoga or pilates. At that point I couldn't even bend down to feed the cats without difficulty so that wasn't an option. I did take up swimming though which does help but didn't solve the problem.

In December after ending up in tears with my GP, after driving home from work unable to turn my neck, the steering wheel or move my foot from one pedal to the other without pain, she presribed Naproxen. This helped until I ended up in hospital for 3 days with a severe allergic reation resulting in hives all over my body, swollen palms, wrists, soles of feet, back of head, face, lips....so that ended my painkillers!

What it did show however, was that the high doses of steroids I was given for the allergy, took away all my stiffness. I now had the ammunition for another rheumatologist appointment and that's when I've got my PMR diagnosis and now on a course of steroids. I'm on what I imagine is the standard dose of 15mg per day which has helped although my right arm still feels like it is dislocating when I move it too far behind me. My hip, which has inflamed tendons is still hurting and I could have an injection straight into that but I feel I'm on enough steroids already so declined that for the moment.

So, I would like to say that I am so thankful to find this group as I have been stalking it for the past few days and taking on board all the useful information. I would be interested to know whether it is possible to have PMR and PsA as I still think I may have some PsA symptoms but then they do seem to overlap and there doesn't seem to be any formal diagnosis of either of them.

Thanks for listening.

[PMRpro Ambassador]

To be honest, my suspicions would be you might have PsA (or another inflammatory arthritis) with polymyalgic onset. It is VERY unusual for Naproxen or any other ordinary pain killer to make the slightest difference in PMR. The response to high dose pred is not a real criterion - the characteristic of PMR is that it responds to a MODERATE dose of pred, 15-20mg, maximum 25mg. If it takes more - there should be some doubt as to the certainty. And you didn't respond to the steroid injection - PMR was more likely to respond to that than any PsA.

Why PsA? Have you history of psoriasis? I don't - but I did have a rheumy who was desperate to make it PsA or ankylosing spondylitis. They sometimes have some strange ideas!

If that hip is possibly bursitis - get a steroid shot. It is far more localised than your oral pred and will have a far better result. I get them every so often, it takes a lot less pred to get a good result than if you try it orally.

[jacdo in reply to PMRpro]

Oh wow, that's really helpful as yes, Naproxen did help with the pain so that's interesting. I have has psoriasis since I was 17 years old when I had a bad flare, and another one when I was 30. Aapart from that, it's always in my scalp but has never bothered me too much. I've had a problem with my hip for about 4 years which has settled into a chronic pain and was helped by exercises I was given by a physio. I had to stop doing those when I started with this pain. It was diagnosed by my MRI scan as inflamed tendons. I also have a pain at the back of my heel when I bend down which I think may be a PsA symptom. It's all very confusing and obviously I don't want to be taking steroids if I don't need them.

[PMRpro Ambassador in reply to jacdo]

arthritis-health.com/types/...

Enthesitis doesn't happen in PMR.

Hum - where are you? You need a good rheumy. Yours currently must be married to my daughter's solicitors...

[jacdo in reply to PMRpro]

That made me laugh I'm in Staffordshire but I went to Solihull Hospital as I just took the first appointment available as I was so desperate.

[Hollyseden]

Oh you have been through the wars. Poor you 😮 One of the "aunties" has spoken so all I can add is that pre-diagnosis I was given Naproxen but it did not touch the pain that was finally diagnosed as PMR. This group is great for information and support.

[jacdo in reply to Hollyseden]

Thanks, that's interesting about the Naproxen. I think I may still be searching for a diagnosis so I agree, this group is great.

[Hidden]

Hi jacdo,

Very much agree with what PMRpro has to say. I speak as someone with a polymyalgic presentation of Ankylosing Spondylitis, PsA is a very similar illness.

I think the problem with PsA is that it can be a complex disease to diagnose and treat. Patients don't always fall into a neat category and I have heard a clinician who specialises in it say that 50% of their patients don't meet the diagnostic criteria.

I wonder if what you really need is to see a Rheumatologist who specialises in PsA before the prednisolone destroys any diagnostic evidence. There are some excellent medications around to treat PsA including Biologics so getting a definitive diagnosis could be very helpful.

[jacdo in reply to Hidden]

Thank you, I was convinced I had PsA but I know that my symptoms don't seem to fit exactly. I was worried that maybe I'd just convinced myself because I have psoriasis. It's good to get people's real life experiences here because it gives me more information about how the different conditions behave.

I think I will try and research rheumatologists in my area to see if there are any PsA experts and then all I have to do is get a referral. Wish me luck

[PMRpro Ambassador in reply to jacdo]

I honestly don't think ANYONE'S symptoms fit exactly in real life. But a lot of lazy doctors think they must...

[Rosedail]

Hi Jacdo:

Alas, I suspect it’s possible that you have both PMR and the early stages of psoriatic arthritis. But my vote, based solely on what you described and my own experience, and not on any clinical expertise, is that most of your symptoms are more likely to be PMR.

I too was struck with PMR in my early 50s and the onset was very sudden. I could relate 100% to your difficulty with feeding cats and driving. The pain and stiffness was not localized...rather from my knees up my back and all the way out to through my shoulders and out to my elbows. But also at times localized with MORE pain in one joint or another. It took me quite some time to convince my PCP (GP) to send me to a Rheumatologist and in the interim and at my worst, I was not able to walk upright but rather bent over from the hips. I was started at 15 mg of prednisone and over the course of 25 months I carefully weaned myself down to zero. This was aided, I believe, by an anti inflammatory and lower carb diet, as well as by gentle exercise and possibly by my relatively younger age. Possibly just luck. (You’ll find lots of recommendations on supportive lifestyles in this forum’s past posts) I wasn’t part of this group at the time but, still, I reduced my prednisone dosage more slowly than my Rheumatologist recommended (25 versus her 18 months) simply because I was responding to what I thought I needed.

After I weaned myself off of the prednisone, and my blood results returned to normal, and my Rheumatologist declared I no longer have PMR, I continued to have joint issues, stiffness and a general lack of dexterity. My joints seem to be injury prone☹️. But these pains are not nearly so severe or generalized as when I had PMR and could barely get out of bed. Also, currently, ibuprofen helps tremendously which was not the case with the full blown PMR. After some hiking last spring, I had my knees drained of fluid (6 months after I stopped the prednisone) along with shots of steroids and that helped enormously too. I’ve tested negative for other forms of arthritis and now my Rheumatologist believes I have the onset of psoriatic arthritis. ( Mild psoriasis since age 13 with a few severe flares when I was younger.) For various reasons, I’m not quite convinced yet so she and I have agreed to take a wait and see approach. Won’t wait too long as it is a degenerative disease, but happily I believe I am improving very slowly.

In the end, I agree with all here that pursuing your diagnosis with Specialists is the best, albeit sometimes time consuming and frustrating, course of action. Also, in addition to the prednisone m, I encourage you to do your best to continue with the swimming and a healthy diet that supports you 🙂 Please let us know how things go. Meanwhile, you’ve reminded me to look at the posts of the psoriatic arthritis group. All the best to you!

[jacdo in reply to Rosedail]

Hi Rosedail,

Thank you so much for sharing your own experience. It has really helped and gives me more food for thought. I'm so pleased that you no longer have PMR and that does give me some hope for the future. Not so good that you may now have PsA and I hope that it turns out to be good news for you.

I definitely agree with you about the swimming and healthy diet and I am feeling much better at the moment now the prednisolone has kicked in so hopefully I am on the road to recovery even though it may be a long one!

I'm going to keep an open mind and maybe another opinion if I can get one so onwards and upwards