PMR diagnosis , Pred, and slightly high CK maybe statin induced pain.

[Misseyj55]

Hi, Misseyj55 here , Jo for short.

I've always had a tendency to be in pain in the places people complain with PMR. over the last 6 months I resorted to taking Endone and Targen to help me through the days and long painful night. I complained to my regular GP who dismissed me as your getting older what do you expect. I'm 66 not 90 , and an old nurse so lots of damage from lifting way back then. The pain becoming a regular thing which made me feel quite unwell. Long story short in desperation on the 23 December I booked a phone consult with my GP service to a new doctor there, to request help. He listened to my description of the pain and my other medical issues, prescribed me Pred. 25mg for 14 days to decrease over time and ordered blood test.

I went to see him a week later, to discover I'm anaemic as well. ( now on Maltofer) The pain has subsided to a fair extent except for the osteoarthritis pain which is bearable and different, like sore , so a step in the right direction, and because of being a bit of a google addict of late, researching pain and my medications, I discovered statins can also be a severe pain problem, so after much angst, I took myself of Atorvastatin because I believe after being prescribed to me earlier last year my pain with the question of maybe I have PMR increased 10 fold. ( there is a genetic thing , my mum had it from a bit of an earlier age and also had Giant Cell as well). I tried taking it a few days later to wake up in the morning unable to move again and so rusty stiff with arms and shoulders and hips. so explained to him and he gave me a script for another statin. Simvastatin. Took that only the once, it was enough to rebound into agony, so I'm left wondering about the statin situation and PMR or is it the start of Myopathy caused by statins as many people complain of just that, But I have to say the pain is excruciating before the pred. Now I am to see a rheumatologist after the New Year break , am yet to get an appointment, and in the mean time , have regular visits with the new young fresh eyed GP who seems to genuinely be interested in my health, well so far.

I know this is a long shot but has anyone experienced weight loss, swelling loss with prednisolone after they were commenced on it. at other times I've had this drug for Asthma flare and the weight has piled on if I was not careful. this time its different, my legs are much less swollen, my face is a little puffy in the morning when I get up but settles down and my feet and ankles are back to normal size for me. I'm overweight so I accept that I am big that's not my problem. I have lipoedema as well, I'm wondering if its reducing the inflammation associated with this medical issue and that is the answer, any help would be welcome thankyou in advance.

Jo Missey j

[123-go]

Hi, Jo for short 🙂.

I'm not aware of anyone on this forum who has lipoedemia with PMR but I'm sure that if anyone has will be along.

I've just looked at your profile and can see that you've posted on the lipoedemia forum; hopefully you'll find some answers to your questions there.

I can't imagine how awful it must be to have PMR alongside multiple other conditions. You have had a lot thrown at you.

If I understand you correctly the PMR pain has diminished since starting on Prednisolone so I would suggest that the young doctor's diagnosis is correct. However, many other conditions need to be ruled out before a definite diagnosis. If it is confirmed, be prepared to accept that Pred is not a quick fix but will need to be taken for several years with close attention to correct tapering methods; you are much more likely to get the best ever advice on how to manage that from this forum and will find a great deal of information in the 'related posts' section.

[PMRpro Ambassador]

Most people find that opiod painkillers do nothing for PMR - so if the Endone worked that might suggest it wasn't PMR.

One listed adverse effect of simvastatin and a few other statins is PMR and statins can also cause rhabdomyolysis. You mention a raised CK (creatine kinase) in your title but not again - is your CK raised? That is a sign of damage to the muscles and is never raised in "just" PMR.

Some people do lose weight on pred - and in the early days it may well be due to fluid balance changing due to reduced inflammation. However - I wasn't aware that lipoedema was thought to be due to inflammation. Pred should improve anything due to inflammation.

[Misseyj55 in reply to PMRpro]

Hi thanks for the info. The opioids dulled the pain , by no means took it away like the pred has. Just couldn’t get them to listen to me re what pain I was in , shocking I’ve never felt so rusty inside , no one could touch me on certain days hurts too much. Now am feeling much better with just soreness of osteo I have and accept that it’s sore not painful . Pred has worked . Maybe I haven’t explained myself enough. Lipoedema causes pain and swelling where it is in the body due to I think pressure on nerves in the area. Might be wrong . I’m just wanting how other people think about it and cope. Thanks 😊

[Misseyj55 in reply to PMRpro]

Hi and yes my CK is raised and I have low iron as well so a bit of mix that I don’t understand as yet.

[PMRpro Ambassador in reply to Misseyj55]

Low iron is typical - the anaemia of chronic disease. It doesn't mean you need more iron, that is the wrong way to manage it, controlling the underlying disorder is the right way to go, since your body iron stores may be fine but high ferritin due to the inflammation messes up iron metabolism.

The raised CK could be due to the statin or it could signal there is something called myositis going on which can appear very like PMR in terms of symptoms and also is treated with pred.

[piglette]

I am so sorry that you have had so many problems. I lost weight before being diagnosed with PMR as I found I could hardly eat any food. As soon as I started steroids I became starving hungry. I did cut out gluten and simple carbs, which I had been told stopped the moon face. It is interesting that the swelling from the lipoedema has gone down. I must admit I will need a very good reason to take statins, my father became a total zombie with them. When he stopped he became the life and soul of the party. We did threaten him with giving him them again when he got too exuberant!