Polymyalgia (PMR), steroids, advice please

hippy

Hi,

for a few months I have been looking for answers to the aches and pains I am having. All over but most especially my legs.
I had physio and that helped to a degree. Physio said I had OA but 6 weeks later my GP said physio was wrong and that my X rays show almost no evidence of wear and tear.

So, several blood tests later, nothing is really showing, except a raised level of one of my inflammatory markers. I can't remember which one but apparently one shows a chronic raise, the other shows an acute (????) and mine is the acute kind. From this, my GP has deduced that I may have PMR, polymyalgia rheumatica. He also says the best way to find out, is to embark on a course of steroids
I am really not keen. Firstly, I think he is wrong. I have read up on PMR and I don't think it describes me at all. I think he has focussed too much on me saying my shoulders were sore. Yes, they are but it is very minor in comparison to my legs. He also says that PMR would be more likely if my inflammation markers were the chronic, rather than the acute. Thirdly, I am very young for PMR and there is none in my family!

So, anyway, he would like me to take steroids because, he says, if it IS PMR, then my symptoms will get better in days, if I take them. If they don't get better, then it is unlikely to be PMR. He seems to be wanting to use the steroids as a means of elimination. I am not happy at all. I think steroids are a serious drug to be taking 'just in case'. I desperately want to lose weight (which I am sure will help my legs) and steroids are going to put the stop on that! Lastly, I have bipolar mood disorder and I know that steroids can be really bad news for people with a mental health condition. However, he is going to have a discussion with my psychiatrist, before prescribing me the prednisalone (I think that is what he said)

I really DO want to be able to exercise. I DO want to be able to walk more than a mile without pain as though I have climbed a mountain...... but I just can't help but feel this is not the right way.

Lastly, I still think my problem is mechanical. If I rest, my legs get better. When I start exercising, they hurt. I have tried a very gentle, graded exercise programme but as soon as I get to a certain level, my legs just protest badly.

Any thoughts appreciated.

stickywicket

I don't think my thoughts will be of much help, hippy, but here goes...

I do understand your reluctance to take steroids. You are quite right that they are not to be taken lightly - for anyone let alone with your bi-polar problems. But it's quite normal for steroids to be prescribed in order to find out if someone has an inflammatory type of arthritis or not. Quite a few people on here have been prescribed them for that reason.

I think your doc is doing the right thing by liaising first. Of course, in your situation, I'm not sure I'd want to take them even if both docs agreed you should but I'm fairly sure it's likely to be a short course.

We all have a tendency to self-diagnose but the docs are the ones who have put in all the years of study so should know better than us. Have you told yours how you feel about taking the steroids? I guess you have a tough decision to make. I hope it all works out well whatever you decide.

hippy

Sw, no, on the contrary. Your thoughts are very welcome :-) You guys are the experts in this.....I am new to it all.

stickywicket

Hm, yeeees. We might be 'expert patients' but we're not even average diagnosicians Not that that stops some of us

dreamdaisy

Whilst it's true that steroids bring their own troubles they don't instantly do so. What dosage has been suggested and for how long? They have a role to play for elimination purposes, I always found the injections useless but the tablets wonderful. I no longer take them and never took a dose higher than 20mgs. DD

hippy

LOL. SW! Expert patient advice is gratefully received!

Dreamdaisy, I am not sure what dosage has been suggested. He said a higher dose to begin with and then tapering down. I will possibly find out tomorrow because by that time, he will have had a chance to talk to my psychiatrist.

Rach101

Hi Hippy,
I was prescribed a short course of steroids to help with diagnosis of inflammatory arthritis, I had 20mg for a week, 15mg for a week, then 10mg, then 5mg. After 10 days I felt amazing, practically pain free, like a 'normal' person. I'm now on sulfasalazine but have had another course of steroids while waiting for the new tablets to kick in. This time I had 20mg for two weeks and reduced down every two weeks. I've recently dropped to 5mg and had a terrible week with a lot of joint pain. My rheumatologist is happy for me to continue at 7.5mg but not any higher due to risks of long term use.
You have to do what you think is best but the steroids have been a lifesaver for me and I've managed to get back to work by using them. They've given me hope and a final diagnosis but I guess it may not work that way for everyone, I hope that whatever you decide you find a way forward,
Rach x

pot80

Since there is a disagreement over your problem ask to see a consultant. Until the problem is identified I do not see how it can be
treated. I had a polymyalgic onset to sero negative rheumatoid arthritis. The consultant told me that I did not have polymyalgia
per se. Subsequent treatment for RA has worked wonders, I could not ask for better.

hippy

Well....I got the prescription today. 5mg Prednisalone. I then went to see my psychiatrist, who advised me not to take them. Basically he said that depression "opens up pain receptors". As far as I am concerned, this is a typical case of one doctor thinking that the area they treat, is more important than another area, treated by a different doctor. My psychiatrist has never been particularly good at holistic care.

dreamdaisy

5mg is a small dose, how many per day were recommended? I think you need to talk to your consultant / GP who will know more about this medical situation (and the possible impact of a long-term steroidal treatment) than a psychiatrist: I can understand his concern for your mental health but I think he has things backwards. Over the years I have met many affected by depression (and some severely so) who are pain-free because they do not have the added complications of arthritis. Trying to live and cope with chronic pain is challenging for all involved, the patient, those who live with them, those around them and those who treat them, the impact of chronic pain is not easily understood by those who don't have it. DD

hippy

Thanks DD,

Yeah, the pain but particularly the inability to exercise, is having an impact on my mental health. I miss walking the dog, I miss walking in the woods. I don't think my psychiatrist has taken this on board but to be fair, I didn't really explain well. Up until this week, he didn't even know I was having physical problems.

I picked up the prescription anyway. It isn't 5mg, it is 3X5mg daily.

dreamdaisy

I thought it would be. I remember when I first took oral steroids in 2007, I had been bed-bound for three months thanks to having to stop all the meds so my rheumatologist reluctantly put me on them. I took four 5mgs and expected nothing (I learned early on not to expect anything from any med, that way you can't be disappointed) and within four hours I was out of bed and moving around albeit with difficulty. 20mgs was the highest dose I ever took and never more than for five days. They should be taken first thing on waking, this mimics the timing of the body's production of our natural steroids - yours needs some help at the moment to help you through this rough patch. Tapering is necessary as the body realises that it has to do it for itself once more.

Could you walk the dog for a shorter time twice or thrice per day? Have you thought about using walking aids such as poles or sticks? Rollators with seats can be bought reasonably cheaply and they can enable us to go further and for longer because we can sit for a rest every now and again. You name the aid I have it but I am used to using them and think nothing of it. I miss walking, cycling, dancing and swimming but it's a case of mind over matter: I do mind but that doesn't matter. DD

hippy

Thanks DD,

Well, today GP called and asked how I was getting on with them! My shrink hadn't even told him he had recommended that I don't take them, as he told me he would do. Long story short....GP still wants me to take them from now until Monday. So I have.....and I am very anxious about having done so!

dreamdaisy

I can understand your anxiety so distract your mind in any way that you can; hopefully you will soon feel the physical improvement which should result - believe you me it's a lovely feeling and one that I miss on a daily basis. Good luck. DD

hippy

I have definitely felt an improvement......but not as dramatic as I had hoped. I did however go for a walk with the dog, fairly short but a wee bit challenging (walking up the stairs is challenging these days ) I am wanting to see how my legs are this evening as if I don't feel the pain at the time, it is generally later in the day. My thighs are beginning to get sore.

I still think there is something mechanical wrong with my legs. It makes sense to me that whether it is mechanical/rheumatic or whatever, there will be inflammation? So, if there is inflammation, the steroids will help it a bit but that the underlying cause will still have to be found/fixed.

I think I overthink!