31 with PMR & Type 1 Diabetes

[Mb1234]

Hi

I'm 31 and recently diagnosed with PMR by my GP. My symptoms were excruciating pain in shoulders and general stiffness everywhere to the point I could hardly get out of bed. My symptoms came on over the course of a few weeks and just got worse and worse. I'm waiting for an appointment with a Rheumatologist now and have been prescribed anti infammatories for now. I have a lot of pain and stiffness but in the last few days I have also started having numbness in my fingers and terrible pain when holding a pen - is this quite normal? Can anyone advise on going on steroids at my age and whether it's a good idea?

[DorsetLady PMRGCAuk volunteer]

Hi Mb1234,

31 is very young to be diagnosed with PMR. The initial symptoms do sound like it, but once you've started the steroids - you don't say what dose you're on - the majority of your pains should recede.

Did your doctor do tests for other illnesses before diagnosing PMR? I'm not 100% convinced you have PMR, and I'm sure others will come along with their theories, but will probably ask for a bit more info from you.

Hopefully you will get a Rheumy appt fairly quickly.

If it is confirmed as PMR, the steroids are the only drug that will control your symptoms - whatever age you are - so really you don't have any choice as whether to take them or not.

[Mb1234 in reply to DorsetLady]

Hi Dorsetlady

Thank you for your reply! I had initially suspected fibromyalgia but I had lots of blood tests and my CRP was 118. They then checked my ESR which was also very high. My GP said I tick all the boxes for PMR apart from my age but the fact I've type 1 diabetes apparently makes me more susceptible to other autoimmune disorders like this. I guess the Rheumatologist will confirm this before prescribing steroids if I ever get an appointment!!

[PMRpro Ambassador in reply to Mb1234]

I think that that is where you have to wait I'm afraid. As DL says, you are VERY young and I will be very interested to hear what your rheumatology appointment brings up. Do you yet know when it will be? Under the circumstances I think that your GP needs to ensure it is an emergency appointment since PMR is not the disease, it is the name given to the symptoms of an underlying disorder. In the case of the PMR we discuss here it is an autoimmune disorder causing inflammation that leads to the symptoms but there are a lot of other things that can cause it, some of them potentially far nastier I'm afraid. Using the word "urgent" doesn't help - it still usually means a wait of months.

As for your hand problems - PMR is often accompanied by/gives rise to carpal tunnel syndrome. I had a lot of hand pain - tenovitis and synovitis led to sharp stabbing pain and aching when trying to hold a pen. Typing was easier.

Pred at your age? IF it is PMR there is no real alternative I'm afraid - but the Type 1 diabetes will complicate things as pred affects carb metabolism. I think it is more than likely that a rheumatologist will want to try using other drugs in the hope of reducing any need for pred - but that isn't necessarily a bad thing for you as PMR does present in exactly the same image as rheumatoid arthritis for example with no distinguishing features except "wait and see" and these other drugs do work in that and other forms of inflammatory arthritis.

Do tell us how you get on - where are you?

[Mb1234]

Just a quick update on my situation. I saw a Rheumatologist in Dec 2016 who ruled out PMR due to my age. He diagnosed me with arthritis and prescribed Sulfasalazine for 18 months. I didn't feel this diagnosis was right so decided to wait on a 2nd opinion. In the meantime my symptoms went away (for 2 months). In Feb the inflammation returned worse than ever, CRP 162 and ESR 82. After a few visits to my GP I got admitted to hospital where I'd lots of blood tests and MRIs. The Endocrinologist diagnosed me with Polymyositis but the following day the Rheumatologist disagreed with this and said he believed it was Rheumathoid Arthritis. Either way I started 20mg preds. They decided to wait on more bloods to come back before making a call on it. 3 weeks later I went to the endocrinologist who said that the diagnosis is Myositis. He reduced the 20mg pred to 10mg as I was feeling much better. I'm also on an anti inflammatory tablet every day. I feel better but the reduction in pred has allowed some pain and stiffness back. I'm returning to work next week after 5 weeks off on sick leave and I'm hoping I won't have another flare up. Another finding was was that my vitamin D level was less than half of normal rate so started some supplements also.

[PMRpro Ambassador in reply to Mb1234]

Polymyositis and PMR are diagnoses that should be on the list together to be investigated - not that it makes that much difference, pred is the first line treatment either way. It is a simple differentiation - a blood test called CK (creatine kinase) is raised in polyyositis, not in PMR.

Hope it goes into remission and stays there! Good luck.

[Mb1234 in reply to PMRpro]

Thank you very much and best of luck!

[Hidden]

Hi MB1234. What is PMR. I have Polymyositis with the anti Jo antibody. There are Myositus specific auto antibodies. Have you been tested for these. If you have one of them it makes the diagnosis. Best wishes. Mary

[Mb1234 in reply to Hidden]

Hi. I've been tested but don't have Polymyositis apparently. Endocrinologist said mine is Myositis he doesn't think it will damage my muscles and should clear out of my system in 18 months or so. PMR on the other hand is Polymyalgia Rheumatica another auto immune condition..these conditions are rare enough it seems. Are you making a good recovery?

[Hidden in reply to Hidden]

Hi Clonmel ,

PMR is Polymyalgia Rheumatica , usually in people over 70, with muscle aches and pains.

It can last up to two years and then usually burns itself out , helped by taking steroids , it doesn't raise the CK like Myositis.

[PMRpro Ambassador in reply to Hidden]

It is NOT "usually in people over 70", nor does it last only 2 years - whatever many doctors will try to tell you. These are misconceptions that make life for patients with PMR even harder. And taking steroids does not help - the pred manages the symptoms until the autoimmune part of PMR burns out, it has no effect on the actual disease process at all.

It mainly occurs in people over 50 - and that is what the international guidelines say. It can occur in younger people and it does appear to be increasing in younger patients. The "over 70" statement comes from the findings in the past that "the AVERAGE age of diagnosis is 72 years". A very high proportion of patients over 70 have PMR so there must be younger ones to keep the average age down! And many younger patients are misdiagnosed as having fibromyalgia or labelled with depression, "your age" or somaticism.

About a quarter of patients are able to stop taking pred after up to 2 years but they tend to have a higher risk of relapse later. About half of patients require pred for up to 4 to 6 years - one study showed 30% of patients still required pred after 6 years. The rest of us require pred for even longer, some for life but that could be either poor adrenal function or the PMR lasting a long time.

[Hidden]

Hi there. I would search for a Rheumatologist who will run these blood tests I have already told you about. 18 moths if he is wrong is a long time to leave it. You have Myositis. Then he needs to tell you what kind of Myositus you have. It's a strange diagnosis. I live in London so my Rheumatologist is here. I had a full battery of tests which included a search for any underlying cause. He found the anti jo antibody so I did not need a muscle biopsy, he also saw the inflammation on a ct scan of my legs. Have you had a EMG to test your muscles or a ct scan of your chest. There are often lung issues with myositis that cannot be seen on a straight chest X-ray. Good Rheumstologists will do that, I had to be seen by the lung specialist for two years. After treatment I am doing just fine but I did have the best Rheumatologist. If you don't feel well keep on to get a diagnosis. If you are waiting long to see a Rheumatologist ask your doctor to run the bloods. You may have to come off the steriods to get the best results with any of these tests as steroids blunt the results. Myositis is not a diagnoses for you, go back and ask what kind, what if any auto antibodies do I have. Do lots of research and tell your family factor what you know. Myositus is rare. Few doctors see it and so almost none of them recognise it when it's sitting in front if them. They are looking for a duck, maybe they should be looking for an Elephant. The more you know about Myosisit the more you can prompt them to look for the Elephant. Most cases are diagnosed at University teaching hospitals as most rare diseases are seen there, Best wishes. Mary