Hi, this is my first post on here, hoping I’m over PMR but I can’t get up ...

[greenvegan]

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??

[SheffieldJane]

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.

[greenvegan in reply to SheffieldJane]

Thanks thought as much, although hopeful still feel as though i must have it as still very stiff after sitting and such like.

[greenvegan in reply to greenvegan]

I live near Huntingdon, Cambs

[HeronNS]

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.

[greenvegan in reply to HeronNS]

Thank you i am taking those vitamins and refused the Alendronic Acid.

[Hidden in reply to greenvegan]

What are your t scores?

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.

[greenvegan in reply to Hidden]

I just got the print out on my bloods today and it says below range 1.09

[greenvegan in reply to greenvegan]

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.

[Freshmimt in reply to HeronNS]

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

[greenvegan in reply to HeronNS]

I can bend fine, it’s more squatting to put in washing etc and when I try to extend upwards again I can’t.

[HeronNS in reply to greenvegan]

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!

[Freshmimt in reply to HeronNS]

Thanks Heron, to be honest I’m sure it’s a bit of both, oh the joys of it all x

[Hidden in reply to greenvegan]

I was dx at 55 and trying to get up from a squat is impossible. That is some reduction rate?!

[Mozziebuzz in reply to greenvegan]

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.

[greenvegan in reply to Mozziebuzz]

thanks its nice to know thats normal for PMR, and that others are the same..I hope will will all rise soon.

[stellafmdm in reply to Mozziebuzz]

If you can squat in the first place!!! 😡😡😡

[Mozziebuzz in reply to stellafmdm]

That was the last time for a very long time ☹️

[Hidden in reply to greenvegan]

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.

[greenvegan in reply to Hidden]

Carb less diet ? That’s harsh , does that help? I eat mostly carbs 😕

[Hidden in reply to greenvegan]

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.

[Hidden in reply to greenvegan]

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.

[greenvegan in reply to Hidden]

Yes I love pulses, and nuts ... oatmeal. I must watch the sugar more then.

[Hidden in reply to greenvegan]

Yes. I am trying to. Cook more. I may go bCk to. Vegan as there is so. Much choice when eating out.

[greenvegan in reply to Hidden]

Do it poopadoop 😂 funny name, best choice ever made .

[PMRpro Ambassador]

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.

[greenvegan in reply to PMRpro]

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 .

[PMRpro Ambassador in reply to greenvegan]

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.

[greenvegan in reply to PMRpro]

Ok that’s what I will do thank you

[HeronNS in reply to greenvegan]

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!

[DorsetLady PMRGCAuk volunteer]

Hi,

Q. “Am I PMR free??”

A. I very much doubt it, for all the reasons others have given.

As we are always saying on here - ad nauseam - symptoms are the key - not blood markers! Pity some Rheumies don’t follow that view.

Your arthritis may be causing some issues, but not as many as you explain.

As PMRpro says ultra fast reducing - you need to be increasing to see if this resolves the problem not decreasing.,

[greenvegan in reply to DorsetLady]

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.

[DorsetLady PMRGCAuk volunteer in reply to greenvegan]

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.

[greenvegan in reply to DorsetLady]

I don’t have a back problem, just to be clearer it’s my legs .

[greenvegan in reply to greenvegan]

And my arms apparently have shoulder impingement ,which is the tendon catching on bone I believe and quite common and treatable.

[DorsetLady PMRGCAuk volunteer in reply to greenvegan]

Ok on shoulder impingement, so what’s the actual problem with legs?

However, I still think PMR is active.

[greenvegan in reply to DorsetLady]

Yes I think so too as they won’t push me to standing at all ,and the stiffness is the same, especially after sitting awhile .

[PMRpro Ambassador in reply to greenvegan]

They are 2 signs recognised as typical for PMR - I think you do have to consider it.

[Hidden]

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. 🌻

[piglette]

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.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Perhaps when they qualify they get a crystal ball along with their degree!

[piglette in reply to DorsetLady]

Ah of course, that is why the NHS is so expensive!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Trouble is, they do get cloudy over time as well! 🤣😂🤣

[piglette in reply to DorsetLady]

With the odd storm!!

[PMRpro Ambassador in reply to piglette]

Or cracked ...

[MhairiP]

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! 😂

[greenvegan]

😂💚🌱