Polymyalgia rheumatica

The original poster asked this 2 1/2 years ago - I wonder how she got on?

I now have polymialga rhuematica.
I HVe not long been diagnosed. I ,m on 3 5 mil prednisilone.
Going to health unlocked to get more info.
It’s awful and debilitating.
Need help to ge.t up every morning. Sometimes a bit better later.

Marydoll

*Anno*, after some mental arithmetic, I was about to congratulate you on reaching such a good age!

Same here! I was just putting my coat on to rush around to the pharmacist to ask for some steroids!

Another member of your club here!

Diagnosed in December with PMR (couldn't rise from a sofa, pull the duvet over me and was climbing stairs on hands and knees and still I thought that it was because I had stopped exercising! Doh!)

I was started on prednisolone at 15mg but had to raise this to 20mg before it worked for me. Possibly because I had left it too long? Who knows. I have been reducing but had a flare when I overdid exertions but am now on 15 mg.

The common idea from doctors is that this illness will run for approximately 18 months - two years then burn itself out but I understand this to be wildly inaccurate. The average mean time is six years before symptoms disappear.

Check out a website named 'HealthUnlocked'. Within that there is the PMG/GCA organisation and they have the most wonderful help available. Their FAQ's (frequently asked questions) are a real boon to anyone recently diagnosed or who has a query. There is much information regarding tapering of prednisolone. If the information isn't there, it doesn't exist!

Incidentally, the GCA means Giant Cell Arteritis and this is quite a worrying concern if you have PMR as the two are linked. Those with PMR have a 1 in 5 or 6 chance of developing GCA which can lead to blindness, so any concerns with headaches, tender scalp etc., should be taken seriously.

The other aspect to PMR and prednisolone is diet. One should lead a low-carb diet life and in addition to the obvious no buns, cakes, bread, rice, pasta, potatoes etc., one should not eat many vegetables or fruit. Not much left! However, it is possible to eat well and maintain weight. Not easy, just possible!

One of the side effects of oral corticosteroids is that they can increase blood glucose levels and increase insulin resistance, which can lead to type 2 diabetes and in people with insulin resistance, cells don't respond normally to insulin and glucose can't enter the cells as easily. As a result, your blood sugar levels rise even as your body churns out more and more insulin to try to lower your blood sugar.

I don't mean this to be all doom and gloom as taking prednisolone will have given most of us back our lives but there is a payback in the above re. diet, what pred does to our skin and hair etc. Still, being unable to move was not the best of times so if diagnosed (incidentally, not all PMR shows up in blood tests. It is possible to have PMR but not have raised markers in your blood. In this case you need to see a rheumatologist to help diagnose as PMR is similar in presentation to RA) read up and inform yourself as much as possible.

Try to have a positive mindset and know that you should not be in any more pain.

Wishing you better soon...

Last autumn i had severe neck ache , followed by excruciating morning pain . Sometimes shoulders , sometimes thighs ,hips , buttocks . From a fit 78 yr old i was reduced to a decrepit wreck in matter of weeks. Thank God for a competent Doctor and Prednisolone . Within a day of first dose of 15g the extreme pain was gone ! Utter bliss.!
Reducing by 1mg a month , i had little pain , if any, but by8mg hip and thigh pain became annoyingly evident. Mainly left hip, sometimes both. So am upping dose to 12mg for week or so to see what happens . Steroids get a bad press , but don't be put off ; they gave me back my active life.

Hello everyone- I was diagnosed with PMR in June this year. My GP diagnosed it from my symptoms, and put me on Prednisolone 15 mgms stat. I felt wretched, not only with the PMR symptoms, but with rampant oesophagitis from the Ibuprofen that I’d been taking for the pain. They didn’t work anyway! I quickly lost weight as I felt so ill, and when appetite returned, I put myself on a Veggie Low Carb diet, as I was overweight anyway. I’ve lost 23 lbs: Now on 11 mgms and it’s all going ok touch wood! I have to take a cocktail of medicine, but that’s ok too. I’ve had quite a bit of hair shedding. Someone recommended Marine Collagen powder for that.. only taken it for a week. Has anyone any success stories about hair loss and illness. I know it happens! I’m also using the Nioxin regime. I’m too old for Regaine use as well. It’s for the under 65 year olds and I well beyond that at 76!! Any advice please Grannies? x

ESR is indeed a non-specific marker of inflammation. Numerous things can cause a high ESR.

The problem with steroids is that while they are fantastic at reducing inflammation, they come with a plethora of side effects. GMIL has developed obesity and diabetes secondary to steroid use, and her adrenal glands are beginning to pack up as well. Of course the steroids aren't doing her blood pressure any favours, and due to the high blood sugars caused by the steroids, her diabetes can't be properly controlled. Sadly she's effectively a walking mess, mainly as a result of the steroids. The difficulty is that her PMR has returned with a vengeance every time they've tried to wean her off steroids.

PSA: if you're on steroids, DO NOT stop them cold turkey if you develop side effects. Steroids mimic the effects of cortisol, an adrenal gland hormone. Consequently, your body senses that it has enough cortisol and stops making it. It takes a few days to recover the ability to make it. This is why, unless you're on steroids for a very short time, you're usually weaned off slowly. Stopping high dose steroids cold turkey can send you into acute adrenal insufficiency, and that can be VERY dangerous.

I was diagnosed with PMR over 4 years ago and have been taking steroids ever since. Like you grannya I didn’t find the steroids as wonderful as predicted.

Roll forward to a few weeks back I saw a very knowledgeable young Rheumatologist consultant. After an in-depth appointment with her she said she didn’t think I had ever had PMR and that all my aches and pains could have been triggered by the Norovirus! She is now weaning me off the steroids. She also explained having a high ESR marker can relate to other illnesses other than PMR. I wish I had seen her 4 years ago.

What a dreadful time you had grannya?

Grannyactivist- that sounds really horrific for you! Im glad you got through it. My pain is only arms and shoulders - i cant imagine how you managed x

Lyndawads I was also 58 when I was diagnosed with PMR. My husband was abroad when the symptoms got too bad to ignore and the pain and restricted movement was so bad that my teenaged son had to help me to get dressed. I couldn't raise my arms at all and climbing stairs was a real struggle as I had the pain in both my upper body and my back, hips and thighs. A few weeks later my daughter was suddenly widowed as a new mum and it was a dreadful time as I could barely move, but I needed to help with the baby.

I can't remember how long I was on steroids for and they weren't the 'magic bullet' that other people with PMR experience, bu they did help a little.

ALot of mention regarding steroids med Pred...Im on now to give pain relief from RA but the heartburn ...

Lyndawds
RA Doesn't always show up in bloods
But at least you were checked
Hope you keep well

I took a dreadful headache while on holiday and dosed myself with pain relief to cope with the journey home. After a week of indescribable pain (I thought it was a migraine) I contacted the Dr and was treated as an emergency for Giant Cell Arteritis as mentioned by agnurse above. I was started on Prednisolone at 60mg daily and it took a year to wean down checking markets all the time. The big concern was to protect the eyesight. Don't hesitate to contact your doctor I'd a headache appears that won't go away.

My GMIL has had PMR for years. In most cases it burns itself out within about 18 months to 2 years; in her case, sadly, that hasn't happened. She has unfortunately been on steroids for years and that has caused her some health effects.

PSA: if you have PMR, and you're getting headaches, ensure that you see your provider ASAP and get a referral to ophthalmology. PMR is also linked to a condition called giant cell arteritis, which can cause inflammation in the eyes. This can be quite serious.

I’ve also had poly R. Very painful but started to lessen after a few days of steroids. I was on them for about six months and came off very gradually with reducing dosage. It’s never returned although I occasionally have a couple of days where my arms and shoulders feel stiff. Ibuprofen seems to help. Hope you feel better soon.

I have had PMR twice and the only treatment is prednisolone for the pain. My first experience, I awoke one morning and could not get out of bed - rolled out onto the floor.

At the time of my diagnosis, I knew of at least six people who received the same in that week. Just like others have said, once you have had it a second attack likely. Three years on, and I am still on a low dose of prednisolone 2mg daily since inflammation markers still not normal.

At the time of my first attack the condition relatively uncommon in GP experience. As a result some reduced prednisolone too fast and before inflammation makers back to normal. Interesting to me is the sudden appearance of the condition. I read somewhere there was a concern the early polio vaccine (generation) implicated.

I meant to write, my RA was masked by the high doses of steroids I took for my other condition.
Every time I came off them, I could hardly walk.

Wishing you all the best.

Thanks Marydoll my initial thoughts were that it could be RA! Guess I'll have to see what they say when I eventually get to see someone-not holding my breath with all the covid stuff impacting all NHS services.

Lyndawads, I was diagnosed with RA nearly 30 years ago. Initially all my tests were negative, but an RA diagnosis is not based on blood tests alone.
Believe it or not, my RA was diagnosed by the high doses of prednisolone for my lung conditions! A bit ironic, I think.

The specialist will look at lots of things, before making a diagnosis.
You have got over the first hurdle, so fingers crossed for some relief once you have your consultation.

Ha ha Annodomini!!! I thought you should be in the guiness book of records! Thanks for your message x

Anno, after some mental arithmetic, I was about to congratulate you on reaching such a good age!

What was I thinking? 1971! I meant 2011. Clearly fingers were working ahead of my brain!

Hi Glow- the RA tests came back negative too!! Xx

I have this condition, which is responding well to steroids.
Hope to be off them (and the other medication to counteract the effects of the steroids) early in the new year. If you think you have this condition, it is well worth seeing your GP as the treatment is usually very successful.

Have you had your bloods checked for Rheumatoid Arthritas?