New to PMR and not getting that much info

[Lynn29754]

Last year, after many months of problems with my hips, I had a left hip replacement, within 6 weeks the doc said I had gout in my left foot (never had it before) I had no swelling, redness, hotness, it just hurt so the doc gave me naproxen which helped a little, then back to doc (saw another gp) who put me on allurpurinol, within 3 days I was so ill I stopped taking it and started with the shoulders and neck ache, which I put down to sleeping funny, it didnt go away so I bought new pillows, that didnt help either. I got to a stage where I couldnt stand up from the sofa without help. Went away on holiday and at one point couldnt get out of the car I was in so much pain, I couldnt sleep, I couldnt walk,lift anything and dressing myself was painful. Got to see a Rheumatologist in September 2013 and he gave me steroid injection and put me on predisolene 15mg for 1 week and then 10mg for 4 weeks then reducing by 1 mg per month after that, which I have been doing. I was doing ok and had my right hip replacement in January this year, since then my ankles have been really stiff making walking difficult, I had a pain down the left side of my left foot when I walk, my shoulders (mainly my left) hurts along with my neck and now the right shoulder is starting to hurt, it doesnt feel the same as it did when I was diagnosed with the PMR and I have no muscle weakness/pain, my joints in my fingers hurt too. Seen the doc today and she just gave me water tablets for the swelling and amitriptylene to try and help me sleep. I have tried all the usual painkillers and nothing works, I am at my wits end and was hoping to go back to work next week but with no working ankles and hands its nigh on impossible. I need to be active to get my hips back upto strength but cant because of my other problems.. I dont know if all these things that have reared their heads since my hip op are related to PMR or not ?? HELP!!!

[PMRpro Ambassador]

The reduction scheme your rheumy gave you is highly unlikely to be successful if what you have is PMR. It is far too fast, you weren't on a higher dose long enough to deal with the inflammation in the first place.

This is a paper from one of the top PMR groups in the UK and is aimed at GPs so they are better able to manage their patients with PMR:

rcpe.ac.uk/sites/default/fi...

It gives a suggested reduction scheme for PMR over a period of 2 years and they find they get only 1 in 5 relapses or flares using it. They take 3 months to get from 15 to 10mg and leave the patient at 10mg for a year. It also gives a description of how they differentiate between PMR and other illnesses which cause similar symptoms: they use a "pred sandwich" and if the symptoms respond to 15mg pred within a few days and the symptoms come back in a similar time scale after stopping it, it is likely it is PMR. Your GP could try it with you if he is feeling helpful - he shouldn't feel miffed, it is aimed at him after all! Quite a few patients have realised they can't even cope with that rate and only ever reduce 1mg at a time and spread that over a few weeks each time. It is also being tried by a northern rheumy and he finds it works too. But in your case a good start would be to try 15mg and see if it deals with the pain - then it is probably the PMR - flares don't always feel like the original. Then you can look at the reduction rate.

Another possibility might be myofascial pain syndrome. After your hip op you will have walked differently and the back muscles may have not coped with the change. Our back muscles adapt to our posture quite flexibly and settle into a comfortable place for them. If you then change anything it can throw the whole thing out of kilter and the muscles protest! Trigger points of knotted muscle form in particular places, they can pinch the nerves and cause referred pain into arms, legs and neck and the spasmed muscles themselves hurt.

The quickest way to find out if that is an option might be an osteopath or chiropractor. I used an osteopath and a Bowen practitioner (google it) and sometimes a private physiotherapist. Here in Italy I have had cortisone injections and physio. Massage also works. On the other hand - your GP may have heard of it and be able to identify the trigger points (not the same s fibromyalgia by the way, totally different).

Hope this offers a few points of attack.

[Lynn29754]

Its not my GP who is managing my condition it is the consultant rheumatologist, saw him in September, then again 18th November and now have appointment for 22 May, the GP hasnt "interfered" at all other than prescribe the predisolene

[Celtic PMRGCAuk volunteer]

Lynn

Any stress, whether physical or emotional, can have a negative effect on our bodies when suffering from PMR. The stress of the hip surgery to your body, coupled with the earlier advice to reduce from your 15mg starting dose down to 10mg after just one week would not have helped. Depending which dose they are on at the time, patients are often advised to increase their steroid dose for a few days around the point of surgery. Perhaps your GP would agree to contact your rheumy and seek his advice as to whether to increase you back to the 15mg starting dose for a few weeks - if that didn't ease your pain then perhaps you should be investigated further.

[Lynn29754]

I have appointment to see the Rheumy on 22 May, first appointment I could get, although they did say I could ring and see if they have any cancellations. Before my hip replacement last June I was active working, enjoyed holidays, walked as much as I could and now I cant walk more than 20-30 yds before I need to sit down and take the pressure off my ankles.. Doc told me I cant go back to work and I need to as I am not getting paid and cant claim anything from government Is there anything re complimentary meds that I can do in the meantime waiting for my appointment ?

[polkadotcom]

Lynn, do you mean alternative therapies? or some other kind of medication? There are plenty that you can try, but like everything else they don't come with any kind of guarantee and - looking at complementary or alternative meds - you do need to talk to your doctor before you take anything OTC whether herbal or supplement or anything else.

As far as complementary therapies go, I've used both Bowen and Acupuncture successfully and I know some have found physio useful so why not see your GP and ask if you can be referred for physio? I think that you really need to see a GP again and tell him you are discouraged and down, they won't know unless you tell them and I'm sure they will deal with that so you can get something in place while you wait to see the Rheumy?

[Lynn29754]

I meant something like ultrasound or heat or tens. I have seen a physio with regards to my hip replacement but he wouldnt listen to what I was telling him, I told him about the problems with my feet and ankles but he still had me going up and down the steps until I was almost in tears I was in that much pain but because it wasnt on the notes he had he wouldnt listen... I asked my GP if things like I have mentioned above may help and she just said as the consultant when you see him, I asked if it could possibly be RA rather than PMR and again she said ask him... so I dont see the point in going to see her again..I dont think seeing another doc in the practice would make a difference I just dont know where to turn, I cant live with this pain, I'm only 54 and feel more like someone 94

[Celtic PMRGCAuk volunteer]

Lynn, I actually had half a dozen or so sessions of the ultrasound and heat treatment to which you refer, and if you do go down this route, you need to ensure that the physio is familiar with PMR and is aware that the usual manual techniques of physiotherapy are contraindicated in PMR in that they can aggravate the inflammation. My physio used just gentle massage alongside the ultrasound and heat on a very painful shoulder blade and upper arm muscle, and it relieved my pain. I had previously tried a TENS machine in the early days but that didn't work for me although it does help some people. What I did find helpful was a large electric heated pad, particularly for my shoulder pain. I do hope you manage to get an earlier appointment with the rheumy.

[Loco99]

Hello Lynn, I am so sorry to hear you are having such a rough time. The others have given you some very good advice. You mention pain in your hands, this could be caused by PMR, my PMR started with hand and wrist pain, (which spread to my neck and shoulders) so much so that I nearly had carpal tunnel surgery, it was only later when I mentioned to the GP that I was having difficulty greeting out of chairs that he diagnosed PMR. I hope you find a kind and sympathetic doctor soon.

[Hidden]

Dearest Lynn. My heart goes out to you. We are not doctors on this site ( with some exceptions) but we need to become expert patients. In your position I would immediately up my Pred to 15 mgs today and stay there for a week. You can't do yourself any harm and at the end of the week you will know more about your disease, whatever it is. I manage my PMR/GCA by altering my Pred myself in accordance with my symptoms and using the professionals if I get stuck or need blood tests. I have felt like a thousand year old woman too and wondered if I would ever get better but things do improve. Hang on in there sister and just do a day at a time

[Lynn29754]

Is it safe to just up my prednisolene on my own? If I up to 15mg for a few days do I go back down to the 3 mg I am currently taking? Or how do I come back down?

[Polywotsit PMRGCAuk team member]

Don't go right up to 15 mg. You might find that a much smaller increase has a beneficial effect. Strictly speaking you shouldn't be self-medicating like that, so see whether you can have a chat with your GP. Have you had a PMR info pack from PMRGCAuk? You can get one by phoning 0300 999 5090. And don't forget our helpline. Our helpline volunteers are trained and know what they are about 0300 111 5090.

[Lynn29754 in reply to Polywotsit]

Thank you for your advice Kate, My GP hasnt been involved with my treatment so far, has offered no advice/support etc so I am reluctant to ask her.

I havent had a PMR pack, I didnt know there was one I will call for one. I am seeing a physio in an hour or so to see if they can help me "get going" and ease the stiffness in shoulders, ankles and hands.

[Hidden]

Sorry for the delay. I didn't receive notification of your reply. Yes - just do it! Stay up for at least a week and then see your GP. Just stay on the high dose until you are pain free and then slowly start the descent - always stopping if you get symptomatic. You are unlikely to get below 10mgs for at least 3 months. It took me 2 years to get from 15mgs to 2mgs. We are all different but there is no rush. Take enough Pred to be pain free and function. It is ridiculous to be so ill on an ineffective dose of Pred. If you get GCA you have to go up to 60 so 15 isn't a big deal. Keep in touch with us all on here. Xx

[Lynn29754]

I have upped the pred to 8mg and it seems to be working, I am not in as much pain as I was. I was fine before my hip operation on 21 January and up until I went down to 4 mg. MY GP has offered no advice/help and the consultant just told me to reduce the dose by 1mg per month, which I have done.. I feel I am very much on my own with this