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PMRGCAuk
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PMR or Not

Its a long time since i have written, i was dx with possible PMR a year ago then saw Rheumatologist said no its frozen shoulder . I managed to get off the Pred in March this year. Shoulders are a lot better after having cold laser therapy but now i have terrible stiffness in hips and legs , I was told this was possibly side effects from the steroids. Saw Rhuemy again in May and he suggested I start taking Pred again !! it took me 8 months to get off the Pred now he wants me back on it ! i decide to not take them and just continue with laser light and persevere with pain in legs. I am now taking CBD for the pain and it is helping, but in mornings it is really bad ...my legs just feel like lead weights and climbing stairs or even coming down them is a mamoth task .....maybe it is PMR ??

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Hi,

Hope it’s not PMR, but just a word of warning I was treated for frozen shoulder for 18 months and it turned out to be GCA!

No leg or hip pains, just shoulders.

So don’t let it go on too long, and certainly if you get any other symptoms like fatigue, back on the Pred.

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It seems several people have been diagnosed with frozen shoulder. My rheumie said I had it. My osteopath said I did not. I think I believe my osteopath. My current rheumie is private and gave me a steroid injection which did not make a blind bit of difference. I am very suspicious about him giving injections to everyone as a matter of course and profit!

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Pre diagnosis I had 3 injections over a year - they reduced pain for a couple of weeks and then zilch! Just make sure its not GCA - like me!

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That’s true.

How is your knee? I hope you are running around again!!

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Give me a chance - only had it 5 hours ago!

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Tomorrow perhaps for a run!!

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😹

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Dear Dorset Lady, I should not be making jokes about your knee, it is quite a serious operation. Did you have a general or spinal anaesthetic? We had a client who made knees and we used to help with the training. It was mainly in Eastern Europe as several countries there insist that post mortems are carried out on everyone who dies, so there were lots of knees knocking around to practise on.

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Hi

Please don’t apologise about making a joke - especially to me! I would have thought you knew md better than that!

My son brought me in yesterday and when I went through the theatre doors he said don’t forget to bring your old knee back for the dog!

Spinal anaesthetic. Got told I had a curvature in my spine (news to me!) so there was a bit of messing about. - but we got there in the end!

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Did you see your knee? They showed me my old hip at the end of the operation as I had a spinal with no sedation. It looked like a little red hedgehog. I bequeathed it to science as they are doing something on osteoporosis and bisphosphonates.

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No pictures I assume? Shame...

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I know, I was really disappointed but I assumed they would not let you take in a camera or phone into the operating theatre. Just before hand the anaesthetist’s assistant had said no I could not see my hip, but the orthopod ignored her and one of the nurses had it in a dish and moved it round so I could see all the parts of it. I wanted to see the actual operation on camera but apparently they were not that advanced at my hospital. In fact it was an old TB hospital and I had to go outside to get to the operating theatre. Rather pleasant really going through the gardens. They did have a covered walkway just in case it rained.

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When daughter No 2 was borne they took a camera into theatre because they knew she would be going to the baby unit in an adjoining hospital so I wouldn't get to see her for 3 days. However - it wasn't used to take a picture of her, they wasted the single polaroid print on an image of my abnormal bicornate uterus with inaccessible horn... Really not quite the same!

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Oh no what a disaster. What does one say?

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They finally got round to it the next day! Then I had the fight over breast feeding and playing with her in the incubator. They'd never had a perfectly healthy 1090g baby before - the NICU had rejected her with one glance and announced she didn't need their ministrations ;-) I'd already breast fed Natalie - who weighed a bit more at 1300g but was rather poorly for a few days. Both went home fully breast fed after 6 weeks.

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Sounds like how my PMR started, I thought it was the result of a long walk, pains in thighs and hips, but it got worse instead of better. After 1 month I was put on 20mg Pred in Aug 2015 and was a lot better within hours. After a few goes at reducing I am now down to 6.5mg and just have pain and stiffness in left hip for 1/2hr in the mornings. I think that could be down to muscle weakness so I am continuing with the reduction of Pred very slowly. You could try the Pred for a week and see if the pain goes, if it does it is likely to be PMR.

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Sounds a possibility - and "frozen shoulder" has often featured in the run-up to PMR developing.

If it is and you leave it, you will probably just get worse and worse. I had untreated PMR for 5 years and just 15mg of pred gave me my life back. I've been on pred for 9 years now - how much of that is due to the PMR having been left? I can't know and neither can anyone else - but I would be very loathe to give up the relief it gives me.

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thank you for all your replies...TBH i do not have much faith in the rhuematologist ...in my first meeting he put the wrong name stickers on my prescription and blood test forms... he has always been very late but in a hurry and always stated Im too young to have PMR - Im 54 yrs

How can I get a 2nd opinion ?

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Hi Am64, if you do have PMR taking pred is not a bad idea as fighting through without it lays you more open to also getting GCA for one thing not to mention other problems due to the excessive inflammation. Why do you need to see a rheumatologist, isn’t your GP any good?

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If your GP isn't willing or able to decide it is PMR and manage your pred doses then you can ask to see another rheumy for a second opinion - but with the state of the NHS at present it may be a very long wait and you might still find they say the same. However - they are wrong, over 50 is mentioned in all the criteria but even then it is only a guide, you can have both PMR and GCA at younger ages. If your GP were to try you on a moderate dose of pred (15-20mg) and you get good relief from the pain and stiffness it is a fair guess you have PMR. If you have leg symptoms - no-one can say it is due to frozen shoulder.

TBH it sounds to me as if the rheumy has realised he may have been wrong in insisting it wasn't PMR - and may have discovered that your age isn't a problem - so is suggesting a diagnosis of PMR and the appropriate treatment.

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thank you for your reply, it was my GP who initially suspected PMR summer 2017 and i was on 15mg of Pred. But he referred me to Rheumy to have his opinion. The GP also wanted me to start reducing the Pred pretty quickly because I am a T2 Diabetic. The Rheumy said no its frozen shoulder -so did the physiotherapist.

Sadly my excellent GP has left the surgery and i have yet to visit the new one....maybe I should to see what their take on the whole situation is.

I am also seeing an Osteopath alongside having cold laser therapy - She has been working on my neck and back which has indeed helped with the shoulder pain and freed them up so i have a lot more movement.

I am taking Vit D3 Full spectrum Turmeric and Omega 3 Fish Oil ....and yes CBD paste !

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Cutting your carb intake drastically is one way to help cope with pred and T2 diabetes - others on the forums have done so. It is all very well reducing the pred quickly - but PMR is in charge and all that happens is that the symptoms return. The pred cures nothing - it is purely management of symptoms. In fact, by reducing too fast many patients end up taking more pred than if they had done it slowly as we support and which a lot of doctors think is "too slow". It isn't slow when it works!

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i hardly eat any carbs its the way i have always managed my T2 - that and eating huge amounts of Okra ! i reduced by 1/2 mg every few weeks and that was tough at times but i did it ....but then the leg and hip stiffness started :(

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You are already there then - many people have no idea which was why I mentioned it.

How does okra help? It isn't something I eat, when I've had it I found it slimy and horrible! Though it is also something I have never seen in the shops here in Italy.

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I find okra slimy and horrible. Out of interest do you ever see parsnips in Italy? My local Italian shop seemed very vague about them.

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Only in an Austrian supermarket in the town! And sometimes they appear at an organic shop. When I first came to live in Germany parsnips almost didn't exist - one stall in the weekly market - but over the last 30 years they are getting easier to find.

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They must be very much a UK veg. When I lived in Belgium and France I don’t remember them either. A Brexit vegetable.

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The other thing you can't find here - though I think you find it further north - is swede!

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My grandmother was very keen on swede, she used to mash it up with carrots. Made it taste better in my opinion. I don’t see it around that much now along with turnips.

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When I was a child ours came from the farmer's field - where they were being grown as cattle feed...

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My father grew kale for the cattle in a paddock we had. No one thought about actually eating it as part of our own diet. It seems to be all the rage now, personally I am still happy for the cows to have my share.

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Is a swede the same as a rutabaga? Yellow flesh? Hate them cooked but a nice crunchy addition to a platter of crudites. In the last few years have learned to like parsnips - very nice roasted, as well as a tasty addition to a winter veggie/bean soup. Never tried okra, but it is supposed to help with keeping blood sugar in balance.

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Yes swede is the same as rutabaga. I love roast parsnips but thoroughly dislike the soup as it is a bit sweet. In fact I only like them roasted thinking about it.

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Swede, turnips, parsnips all readily available here in the farm shops seasonally, in supermarkets most of the year (I don’t bother)!😏

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Yes, I have noticed the further north you go the more you find them. I love them all! But they are also all high carb...

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I’m so old now that I eat what I like, when I like. Since starting Pred I’ve lost 14 kilos. I eat small portions, but I have ice cream after nearly every lunch (small chocolate ones with almonds - makes a lovely dessert).😂

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Huh!!!!!

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As my mother says I have passed my sell by date so who cares!

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All very interesting but maybe could you all start a veg thread as its blocking up my In box email :)

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since i have been eating Okra my Blood sugars have stablised at a very respectable 6.7 or 51 in new units ...I can only put it down to this lovely Indian vegetable !! its not slimy if you cook it well- the secret is to cut it up a few hours before cooking and DO NOT add salt until its finished cooking. I heat some oil in a pan and add cumin seeds-the oil must be very hot so the seeds sizzle and pop immediately then add onion chopped chilli and garlic - I also sometimes use leeks - when the onion is soft add corriandar powder and tumeric stir it up then add the Okra- give it a stir to coat with spices. Then put a lid on the pan and turn heat to very low. let it cook for 4-5 mins then add salt to taste - eat with plenty of natural yogurt :)

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Never had okra. Your recipe made my mouth water, though! So I see from Dr Google that okra is now suggested as a way to manage blood sugar in the case of diabetes. Interesting.

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How interesting and that sounds good! But not an option here!

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