I had my first rheumatologist appointment recently after 18 months of PMR, he told me that since my bloods have come in normal that I am PMR free, I still can’t lift my arms and stand from crouching ie putting washing in machine, so I thought he must be mad.
Since then I have had a ultra sound on my shoulders and it came back with shoulder impingement in both which I can have physio for.
I have had an X-ray on my hips and am suspecting I might have an issue there to possibly osteoarthritis?? Last week had more bloods again all normal .
I’m only on 1 mg of prednisone now going down 1/2 mg per week. I have beginnings of osteoporosis ☹️ I’m 54.
Am I PMR free??
Written by
greenvegan
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The duration of PMR averages out at about 6 years according to a Mayo Clinic study. A percentage of sufferers never show inflammation in their bloods. You sound very PMR symptomatic to me. I imagine that your Rheumatologist galloped you off Prednisalone too, this never helps. Co- morbidities are common in our age group, but it seems like you are suffering from fairly acute PMR symptoms. I would be seeking a second opinion from a Rheumatologist who is up to date on the facts of this disease. If you give your location, someone on the forum may be able to help, with a recommendation. My guess is that if you increased your Prednisalone dose to the last one you were comfortable at, you would obtain relief. Is your doctor ( GP) more understanding. Some of us manage with good GP input alone. Read up on how to support your bone health Calcium, Vit D and weight bearing ( gentle) exercise. I am sorry to find yourself in this situation. My personal opinion is that your PMR has not gone. If only blood tests were a reliable indicator.
What SheffieldJane said. Furthermore, I have fairly extensive OA and although it can sometimes hurt it never has caused the same issues with being unable to bend to take care of laundry, or any of the other disabilities you are describing. Those were definitely PMR symptoms. A good doctor will treat PMR by the symptoms, only using the blood tests as an adjunct.
I also suggest that you add Vitamin K2 to your calcium and Vitamin D. The "beginnings" of osteoporosis should not need medication to be reversed.
What are your main calcium sources? I was vegan for 8 yrs in the late 80s to early 90s, then have been veggie since then. I eat lots of leafy greens, lots of tahini and just going back to soya milk now.
oh and calcium sources are oranges, dates, beans,nuts and orange juice and non dairy milk I also take calcium supplement now that my bones are borderline.
Hi Heron, so sorry to but in, but do you think it’s the PMR that’s causing the back bending problems, my GP says It’s OA, but I do have my doubts about how much she knows about PMR, thanks
Hi Freshmimt and greenvegan . I guess I was thinking about the difficulties of sort of folding yourself up to do something like load a front-loading washing machine, and straightening again, because it's true that OA can make you stiff and if it's in your spine your back can hurt. But it's the effort required to get one's limbs to actually move which I think is a PMR symptom. It is hard to tell the difference sometimes!
Squatting and then not being able to get up was my first PMR/GCA symptom. Sounded very familiar PMR to me. OA would have to be pretty acute to have the same effect I would have thought. What OA I have is not at all like a lack of power in the muscles, in my experience anyway.
Squatting for me hurts in my lower muscles of my bum. Also before I was on Pred I couldn't look into the drum of my front loader because of the pain on each side of my neck.....big time! Still slight pain/discomfort to squat, and slight pain in shoulders, but manageable. Down to 7mgs Pred daily now, on a carbless diet, and loads of supplements.
In your case being a vegan, (my first husband was the editor of The Vegetarian Times) I would NOT recommend it, but I eat lots of salmon, chicken, cheese, butter, olive oil, milk, cream, green vegetables, fruit. NO cakes, biscuits, cookies, chocolate, sugar, flour, bread, potatoes, rice, pasta, etc. I know that there are fruits that contain carbs, but I am not bother by that. I have managed to keep my weight at 124 lbs for the past year on it, and I was 204 lbs previously. I never get hungry, and eat as much as I want.
We generally recommend a low carb diet as it helps control the blood sugar spikes that pred randomly causes. It can help control weight but just make you feel better if your blood sugar is not up and down all day. There are lots of discussions about low carb way of eating if you search using the magnifying glass. It is slightly harder for veggies/vegans because keto diets when no or very low carb are consumed mean that meat and are a key zero carb food. Having recently dumped just about all dairy, I am struggling to get as much protein as I would like so may end up vegan and more pulsey.
How long have you been reducing at 1/2mg a week? That is a crackers speed after 18 months on pred - your poor adrenal glands! What dose were you at when the blood sample was taken?
Only 1 in 5 patients with PMR are able to get off pred in a year, only about 1 in 3 in 2 years. Even 1mg a day is enough to keep the inflammation under control, if you are on any pred at all that is enough to manage the inflammation you would hope your blood markers would be OK - they should be. If they aren't, you aren't on enough pred.
Thanks I think I was on 2 , and then 1 on my last bloods last week, I guess I should stick with that since I'm o.k and not any worse , how long before I should reduce again? I had thought a half wasn't much.. opps .
I wouldn't for at least a couple of months. Be sure you are OK first. This is such a low dose there absolutely mo point worrying. It is better to stick at a low dose for a fair time than find the PMR is still there and go back to the start. Then go down half and stick there for a long time.
Half a mg isn't much, it's also how often you reduce by that much. It's taking me something ridiculous now to reduce by .5 mg (from 1.5 to 1) - close to three months! But I haven't been okay at this level before, this is a new, and hopefully this time successful attempt. I've been at around 2.5 -2 for over two years!
Thank you I have always had the problem of standing.. from on the floor even at higher doses . So that’s why I cant see any reason to go up in prednisone.
Okay - the back does sound as if it’s OA rather than PMR - can certainly equate to that I had bad back pre GCA, and still have it now - Lumbar Spondylosis.
But if you still can’t lift your arms as you say in post then that could be OA or PMR. Even a small increase may give you the answer.
They are 2 signs recognised as typical for PMR - I think you do have to consider it.
At 54 if you can't get up that means symptoms are there and built up enough by morning. More pred not less seems sensible so you don't have full flare. If you get a full blown flare where all symptoms return you may end up at your starting dose. A reduction that is too fast is the main indicator of a relapse. 🌻
How on earth does your rheumy know you are PMR free? Has he got a magic ball? No one will know until you are off steroids and you can carry on as normal. Some of these doctors are really impressive with their mind reading capabilities.
Welcome to the forum from a fellow vegan. I don't think there's much I can add to what the others have said... it sounds as though you do still have PMR, and your rheumatologist is bonkers! 😂
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I’m new here. PMR since September 2020.
following on from my last post …….Turns out no PMR or GCA
Do I have PMR? This is getting ridiculous.
On my Final Month ! ( I Hope🙏)
NEWBIE: My very first post: Can PMR and/or Prednisolone cause reduced heart rate?
