PMR newbie

Newly diagnosed in June tho I’d had pain for a while. All I’ve been told is I have PMR GP started me on 30mg I’m now down to 15mg but still have aches rather than pain and feel phew. All I know is I had a lot of bloods done I’m also one point off being diagnosed with diabetes type 2. I just want to feel well. Prednisone has made a massive improvement to my life. But keep having set backs I don’t know how to manage it what do I do ?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

You might like to have a read of this post - hopefully it will help you understand your illness a bit better- and allay some of your fears,

healthunlocked.com/pmrgcauk...

And look through the FAQs - for specific questions - but please ask, that’s why we are here -

healthunlocked.com/pmrgcauk...

[123-go]

Hello, W3bbj.You say you were diagnosed in June, started on 30mg Prednisolone and are now at 15mg which is a big drop in around just two months 2 months. Will you tell us about your symptoms before you were diagnosed, please?

[Hidden in reply to 123-go]

Incredible pain that I’d cry. I was referred to a Rheumatologist who ruled out Arthritis and gave me a diagnosis of probable fibromyalgia I was put on naproxen and pregablin think I’ve spelt that wrong. My GP dismissed fibromyalgia and all my bloods were fine over the years apart from raised inflammatory, vitamin D deficiency and later folic acid deficiency. But for me it was the pain I would finish work get in my car and when I’d go to get out I’d struggle to walk and could do nothing. I’d struggled like this for years. Eventually everything in life got too much for me and I quit my job and suffered severe depression and anxiety. My GP tested my bloods did everything and came up with PMR. Steroids have made a massive improvement to my life.

Does anyone get spasticity? I have started to get it in my forearms.

To be honest I don’t care about putting names to things I just want to feel normal get out of bed without pain not feel so tired. Lose weight because I’m either too exhausted to exercise or I hurt.

[123-go]

Here on the forum many will be familiar with horrendous pain and limited movement pre-diagnosis and you have all my sympathy. I haven't heard of spacticity with PMR but there are tests you can have for that. I do have to say that I feel it's important to put names to conditions in order to understand them and to do your own research.

If you are still struggling in the way you describe after two months on Prednisolone I would suggest that you are either not on a sufficient dose to manage the inflammation in your body or that another condition may be involved. Many people with PMR feel relief from pain within 24-48 hours and for others it takes a little longer.

I strongly advise you to ask your GP to urgently refer you to a rheumatologist who will understand PMR more than a GP. You really shouldn't be suffering in the way that you are currently.

Others more experienced in PMR will be along with their own opinions so please come back here to check. There are 'experts' here who are extremely knowledgable and trustworthy.

[alangg]

Sorry to hear that you are suffering.

At 49, you are quite young for PMR but if it is PMR, and it is affecting your life to that extent, then 15mg might not be a sufficient dose of Pred to keep the inflammation under control. I am not a medic but I can imagine that a younger and more active immune system that is out of control will probably require more medication than an older one.

I was diagnosed at 59 and 15mg was just enough to bring the inflammation down to a manageable level. I stayed at that dose for 4 weeks before beginning a slow tapering reduction. Many people are not diagnosed until their 60's/70's and the usual starting dose for them is 15-25mg.

I do hope that you get some relief soon.

[PMRpro Ambassador]

if you had raised inflammatory markers then it is very unlikely that it is fibromyalgia - it isn't an inflammatory condition and it doesn't respond to pred.

However - I do wonder if you are doing your part in managing PMR? Being on pred is not a licence to return to normal life and activity. It is part of a management strategy to allow a better quality of life and less pain while waiting for the underlying autoimmune condition that causes the symptoms to burn out and go into remission. It is still chugging along in the background unaffected by the pred which just combats the inflammation. You have to do your bit with pacing and resting appropriately.

healthunlocked.com/pmrgcauk......

Another factor is diet - cutting carbs drastically, especially processed carbs and added sugar helps a lot. Sugar feeds the inflammation and in combination with the effect of pred can push you towards steroid-induced diabetes. Inability to exercise matters less with a low carb diet - I lost 35lbs of PMR and pred induced weight gain while still at above 10mg. I've lost 6kg since mid February this year while on 15mg - it is slow but it can be done. MrsNails has a very good post about her weight loss using the NHS's prediabetes diet.

[Hidden]

I have work today and I’m so tired. I can’t ring in it’s a new job only three days a week but even that feels too much. I can’t afford not to work and I can’t claim anything 🥲

[SheffieldJane in reply to Hidden]

Are you sure that you wouldn’t be entitled to disability living allowance? It would probably be worth talking to the citizens advice bureau to make sure that there is nothing you can claim. PMR is classed as a disability. I cannot imagine how you manage to hold down a job. I could barely manage a shower in the early days. You also seem to have reduced from 30 mgs very quickly, did you taper? There are tried and tested slow tapers in the FAQs part of the website to try. I think that as you went undiagnosed for a long time, it may take a while to control the inflammation. I stayed on my start dose (20 mgs) for 6 weeks before I began to taper down, using the dead slow nearly stop method. Can you talk to HR or Occupational Health at your new job to see whether some adjustments can be made to your working pattern and duties to enable you to continue? They have a duty of care to disabled employees and you have legal rights. Your symptoms begin to sound like Giant Cell Arteritis which must be treated as a medical emergency because your sight is at risk. Please have this looked into PMR and GCA are closely related. Let us know how you get on. You must be scared feeling so ill and forced on to the treadmill.

[Rugger]

I'm sorry to read you're struggling so much. If 30mg gave you a"massive improvement", then it could be that halving the dose in just 2 months has been too much, too soon. Not many (any?) of us could have coped with that.

Please contact your GP and discuss a much slower taper after maybe, returning to a higher dose for a while. You could be doing that while waiting for a Rheumatology appointment, which could be a while in the present climate.

As the others have said, it is possible to control your weight and blood sugar levels by diet and that makes you feel you have some control in your life.

I hope you manage at work today. Do you work one day and then have a day off in between?

💐

[Hidden in reply to Rugger]

Yes I have a day off in between but my Uncle has terminal cancer I’m his next of kin I’m just SO tired and sore. Diet, because I’m so tired I’m eating more.

I felt great on 30mg (super human)

My cholesterol is excellent Dr said but I’m obese!?

I’d never heard of PMR but reading it sounds like me only one that isn’t is the age ?!

I do get pain on sides of my tongue and I have blurred vision (had my eyes tested)

Im on the cusp of being diagnosed with diabetes too it’s been creeping up since 2019 apparently.

The fatigue is awful but for me the pain is worse. Think I’ll give the Drs a bell on Monday and suggest going up in mg

[PMRpro Ambassador in reply to Hidden]

Stress of any sort can have a great impact on PMR and cause a real flare in symptoms. I speak from bitter experience in terms of sick family!

[123-go in reply to Hidden]

You do have a lot on your plate! I'm so sorry. Stress and needing to work contribute greatly to lack of success in PMR management and caring for for a very sick relative is, as I know from personal experience, draining even for anyone in good health and not working.

I seem to remember reading on here that PMR sufferers are eligible for benefits; someone here may be able to confirm or otherwise.

Your employer should be aware that you have a chronic inflammatory condition and may be able to make adjustments for you even though you work part-time. If there is an HR person in the company it would be worth a discussion.

It must be so difficult to get your head around everything that's going on, but if you can try to deal with one thing at a time it may help a little. Ringing your GP on Monday is a very good start.

[Rugger in reply to Hidden]

I'm sorry to hear about your uncle and I'm sure you want to do as much for him as you can. Has he got a care package in place so that your time with him can be 'quality time'?

When the higher doses of pred make us feel "super human", the danger is to do too much! The PMR is still active, so we need to pace ourselves as much as possible. If your GP does suggest more pred, make sure you still take as much care of yourself as you possibly can.

Obesity and cholesterol don't always go hand in hand! Thin people can have high cholesterol and vice versa, like you. (Some people just make more cholesterol than others.) Be thankful! However, try to cut the carbs for the sake of your blood sugar level and hopefully, your weight. Possibly that could help a bit with the fatigue.

[MiloCollie]

You’ve made a good start coming in here as there are many very knowledgeable friends. I’m no expert but don’t reduce pred any further til you feel better. Read all the FAQS and advice and REST. Dorsetlady will laugh at that cos I’ve been rubbish at that bit!!! Take care. You’re not alone.

[Hidden in reply to MiloCollie]

Thankyou ❤️