Polymyalgia rheumatica

[lma89]

Hi there I'm a type 1 diabetic 10 days ago I started with an excruciating pain across both shoulders and my neck, no amount of pain killers would move it so I went to doctors was prescribed a strong antiimflamitory and sent on my way cut a long story short after a visit to a+e on day 9 and being fobbed off with cocodamol which I can't take I went back to the doctors relayed all my symptoms and we read something about polymyalgia rheumatica my symptoms fit although it does say usually over 50s suffer and no amount of painkillers will numb it, only steroid treatment, which has worked thankfully just waiting on blood tests to confirm, the only problem with these steroids is my sugars are now all over the place I'm slowly bringing them back under control but my reason for this post is I'm looking for any other type one sufferers who have polymyalgia or are taking steroids for another reason tips hints or just general conversation please

 

[Pinkorchid]

My husband is not T1 he is T2 but he has Polymyalgia well it is in remission now and his doctor said it could stay like that, He took steroids for 3 years and the doctor said that is probably the reason he developed T2 Any way he has been off them now for about two months and hopefully will not have to go back on them.
His BG was never very high while taking them but he was on Metformin

 

[steveBN1]

PMR is no fun at all. Mine's in remission after nearly 3 years on prednisolone. Welcome to the club. I was 54 when I got it. My GP said T1's are more prone to autoimmune-like things.

My PMR developed slowly and I found, pre diagnosis and treatment, that my insulin, basal and bolus doses all had to go up by at least 70% to get anywhere near normal BG's. Once the steroid started, my insulin demand decreased to somewhere between what was normal before and the huge dose pre steroid. It was a bit of a battle, so please don't be too worried. It does sound like you need a conversation with your rheumatologist about the effect on your insulin needs and about the slow steroid dose reduction needed in order to both control the PMR and wean your body off the steroid without PMR flare-ups.

It's been 18 months since I stopped the steroid and no significant flare-up. My GP is a good'n and that helps a lot. The bit of pain I get now responds to good ol' ibuprofen. Good luck. It's a bit of a slog.

 

[lma89]

Well I'm 25 and I am out of the expected age bracket for this er syndrome? I am on the same steroid 5mg until they know for certain and 250mg naproxen when needed I I usually take before bed to ensure a full night sleep. My blood shows high inflammation and slight elevated white blood cells the pmr doesn't bother I just feel a bit peeved that it's taken me 9 or so months to get my glucose levels perfect now they are all over the place I recently halved my basal dose and took morning and evening with perfect control where as before it was pretty erratic so I'm slowly upping basal dose morning and night

 

[MargaretR]

Hi there I'm a type 1 diabetic 10 days ago I started with an excruciating pain across both shoulders and my neck, no amount of pain killers would move it so I went to doctors was prescribed a strong antiimflamitory and sent on my way cut a long story short after a visit to a+e on day 9 and being fobbed off with cocodamol which I can't take I went back to the doctors relayed all my symptoms and we read something about polymyalgia rheumatica my symptoms fit although it does say usually over 50s suffer and no amount of painkillers will numb it, only steroid treatment, which has worked thankfully just waiting on blood tests to confirm, the only problem with these steroids is my sugars are now all over the place I'm slowly bringing them back under control but my reason for this post is I'm looking for any other type one sufferers who have polymyalgia or are taking steroids for another reason tips hints or just general conversation please

I'm sorry you have got polymyalgia, it's not pleasant. I've had it for 10 years, and am unusual in that it has never completely gone away, and I have never been completely off prednisolone. I've had flare ups when my dose had to go up, and 2 bouts of Giant Cell arteritis/temporal arteritis. (As an aside, check this out if you haven't already, as you need to be prepared. I think PMR sufferers have a 1 in 20 chance of getting GCA)

Back to the diabetes. In January I was diagnosed as Type 2 steroid induced diabetes, although I think in retrospect I think I had been pre-diabetic for a couple of years. I bought a meter and started testing, and like you found that my BG levels were all over the place. I posted on here, and was told that what I was eating must be wrong as I shouldn't have a rise of more than 2 after a meal. Fortunately by that stage I had realised that the blood weren't 'all over the place' but were mirroring the prednisolone. I experimented with the pred as I have a variety of tablets (different mg and sugar coated/non-sugar coated.) What cameout of my experiments is that on a LCHf diet is that I can be 5.5mg in the morning, and take my tablets (sugar coated) at 9.00 am. My blood sugar stays in the 5's and 6's. Then at lunch time it starts to creep up, This has no connection with the food I've eaten, but is to do with the pred. It carries on rising slowly until after dinner, then drops quite quickly until being about 7 at bedtime. I tie this in with the sugar coating on the red having been digested away, and got into the blood stream

I have managed to get my pred down to 12.5 mg at Christmas, and seen my blood sugar levels drop. My GP didn't expect to see a difference until I got to 6 mg, but I've been lucky. However (and it's a big one) getting to 12.5 mg has brought back all the pmr symptoms. My GP decided to test for Vitamin D,and my levels were indeed very low. So I had an intense course of Vit D, and I did indeed get some improvement. If you look up Vitamin D deficiency you will find the symptoms are very similar to PMR.

My PMR hasn't gone away, though, despite the improvement, I've still got a lot of pain. I'm seeing my GP (who is brilliant) tomorrow in order to decide if I increase the pred, knowing that it will cause an increase in the blood sugar level.

There are a couple of web sites forums for PMR, one is run by PMR/GCA organisation, and the other by PMR/GCA North East. The North Ea one is very active.

 

[lma89]

Thankyou that is very helpful

 

[34 South]

Hi there I'm a type 1 diabetic 10 days ago I started with an excruciating pain across both shoulders and my neck, no amount of pain killers would move it so I went to doctors was prescribed a strong antiimflamitory and sent on my way cut a long story short after a visit to a+e on day 9 and being fobbed off with cocodamol which I can't take I went back to the doctors relayed all my symptoms and we read something about polymyalgia rheumatica my symptoms fit although it does say usually over 50s suffer and no amount of painkillers will numb it, only steroid treatment, which has worked thankfully just waiting on blood tests to confirm, the only problem with these steroids is my sugars are now all over the place I'm slowly bringing them back under control but my reason for this post is I'm looking for any other type one sufferers who have polymyalgia or are taking steroids for another reason tips hints or just general conversation please

I realise this is a reply to an old post, but perhaps there's a chance it may yet elicit a response. I'm a 58 year old male and have been T1D for almost 40 years. I'm well controlled with a CGM but still do MDI (no pump). I've had moderate pain exactly as described for PMR (neck and bilateral shoulder, lower back, hips, buttocks and thighs) which is worse after resting but is present almost all the time. This started about 15 years ago and was initially diagnosed as capsulitis (frozen shoulder) but eventually confirmed not to be. A test dose of cortisone fully abrogated the discomfort for a day or two but, given that I am T1D, is impossible to take therapeutically. Over the 15 years, the discomfort has worsened and I now also experience debilitating fatigue on a daily basis and which persists for two to three hours or more. There are periods when it disappears for a few days, but always returns. I was diagnosed with ME/CFS but my symptoms do not appear to fit that diagnosis or its severity. I have diabetic peripheral neuropathy (my endocrinologist suggests it may even be autonomic) and Monckeberg's sclerosis, so this could, at an off chance, play a role in the fatigue. I have also had surgery for stenosing tenosynovitis in both hands. In 2018, the term "Diabetic Fatigue Syndrome" was coined in an editorial of a scientific journal for the first time, so perhaps my symptoms could be explained more readily by that, especially given the duration of my T1D. It's just that my symptoms so perfectly fit PMR that it is hard to ignore. However, I have normal ESR and CRP levels (in my field of work we often refer to the latter acronym as "can't really predict") but my GP is convinced I have a mild variant of PMR. I've read though that PMR should resolve after, say, five years, so my 15 years is unusual and, of course, I'm male. I should say that I am an extremely enthusiastic and positive person, as much as my age allows. I enjoy flyfishing, camping, boating, etc. so, as much as my wife might disagree, I am not a couch potato. I guess what I'm looking for in my post is whether anyone here has experienced similar comorbidity, especially in terms of an unresolving PMR and how one deals with that as a T1D?

 

[MargaretR]

Hello34South
I’m sorry to read of your Pmr, it really is an unpleasant condition. As you can read earlier in this thread, I started with it about 13 Yeats ago. There are alternative treatments that I know of. Methotrexate and leflumonide. My rheumatologist tried them both, but I couldn’t tolerate either.

Shortly after I wrote the post earlier in the thread I saw a different rheumatologist as I was having increasingly painful symptoms. My diagnosis was changed to a new rheumatologist and my diagnosis was changed to rheumatoid arthritis. (I’m told it is possible to have both at once). She prescribed methotrexate and has been trying and failing to get me off prednisolone. I had an almighty flare a month ago which got my feet and hands. The rheumatology nurse wanted to inject me with prednisolone, but the last time they tried that I was very ill, blood sugar levels sky high, and narrowly avoided hospitalisation. I’m afraid I took 20 mg of prednisolone instead of 10 mg so I know she won’t be pleased. Despite having increased my dose my blood sugar level has stayed between 4.7 and 5.6 first thing in the morning, so it can be ok. But, we are all different, we need to follow our meters.

However, I’m type 2, not type 1. Can I suggest that you look at PMRGCAUK
pmrgca.co.uk. There is a comprehensive website, but I couldn’t remember its proper address when I googled Pmr as it was buried. When I found it it was clearly active, and up to date. If you look at The link to Our Services you will find a link to Forums. I had a quick look but couldn’t see anything about Type 2, but I expect a question ther would bring replies.

good luck

margaret

 

[34 South]

Dear Margaret

Thanks for your reply. I guess that your having PMR for 13 years confirms that it can be a chronic disease, even with treatment.

I haven't taken medication for what ails me other than low dose Duloxetine (SNRi) which I was really prescribed for my diabetic neuropathy pain. That helped for the neuropathy, but not really for the PMR symptoms (if it is even PMR), suggesting that the two are unrelated in their aetiology. However, the drug had a huge impact on my daily routine and I struggled for over an hour to get up in the mornings. I eventually weaned myself off it and now do not struggle waking, but my neuropathy pain has returned.

I always ignored the claims that CBD oils were the miracle cure for pain (I believe strongly in evidence based medicine) but, in a moment of fallibility, purchased a whole extract tincture to try. It failed to have any effect whatsoever!

You mentioned rheumatoid arthritis. Years ago, when seeing a rheumatologist for the discomfort I was experiencing, he suggested, pointing to a barely visible feature on an X ray of my hips, that I had, or would get, inflammatory osteoarthritis. "Oh, you mean rheumatoid arthritis", I said, since my mom suffered with that. "No", he contorted. In the year following, taking expensive supplements and even an anti-malarial as an anti-inflammatory, nothing changed and, when he suggested I take paracetamol, I stopped seeing him.

Unfortunately, in my opinion, autoimmune conditions and variants thereof, are beyond the scope of specialists who are not actively involved in research in their fields.

Thanks for the reference. I will certainly look it up.

Paul