Hello! I am new to this site.

[psalmster]

I was diagnosed with polymyalgia rheumatica 4 years ago and have been on prednisolone since then. My blood tests do not show inflammation so it was some time before the rheumatologist confirmed I had rheumatoid arthritis. I have been on hydroxychloraquine for 2 years. The rheumatologist wants me to come off the prednisolone but whenever I get down to about 4mgs per day I start to seize up and get pain all over. When I'm on 7 or 8 mgs prednisolone I am fine and can live a normal life. My concern is that if I must stop taking prednisolone I won't be able to do all the things that I have enjoyed. I am down to 4 mgs now and am having trouble moving and in constant mild pain. I'm not sure if this is a question or just a statement of where I'm at, but any help would be appreciated

[shirlthegirl]

Hi i can't answer your question, as i am new to this decease, I was only diagnosed at the being of September by my GP, I have just started MTX a couple of weeks ago, But i can Welcome you to a loving and caring site, I have make some really great friends on here, who have given me great advice, and have welcomed me with open hands, which i know they will do the same for you,

I am also Sorry that you had to join us, especially at this time of year, so i would also like to say merry Christmas and look forward to hearing from you xx

[psalmster in reply to shirlthegirl]

Hi Shirl. Thankyou so much for your welcome and sorry to hear about your condition (at such a young age!) I was supposed to see my Rheumatologist in Jan. but have had no letter of confirmation so will probably be Feb when I think he'll try something else.

Merry Christmas and thanks again.

Pete x

[shirlthegirl in reply to psalmster]

Sorry i mean't open arms, What am i like

[helixhelix]

hello there,

If I understand what you've said then you were first diagnosed with polymyalgia rheumatica, and then later with rheumatoid arthritis? So I'm a bit baffled as to why you've not been given an alternative to the prednisalone to control the RA. Is that because they are attributing the pain and stiffness just to PR rather than RA? Have you asked your rheumatologist what he or she plans to offer you instead of the prednisalone? I agree that long term use of steroids is to be avoided if at all possible, but since you have RA as well as PR then there are many other drugs apart from hydroxychloroquine that you could try to see if it's the RA causing the problems, rather than the PR which I don't think responds to them? Hydroxy is generally used just by itself when your RA symptoms are very mild, but for many of us we need to take it with other disease modifying drugs to control the symptoms. I take it too, but with 2 other drugs as well (and yes I rattle...). So if your symptoms can't be controlled just on Hydroxy then ask for something that will be more effective for you. I do think that quite often the rheumy's tend to wait until you jump up and down before trying other things, as they assume that all's well unless you make it VERY clear that it's not!

Hope this makes sense! Polly

[psalmster in reply to helixhelix]

Hi Polly;thanks for the reply.i was supposed to be seeing my rheumatologist in Jan but have had no confirmation so will prob be Feb. The hydroxy has'nt seemed to do anything and the rheumy said we would try something else. He left me with leaflets on metroxythate and sulphazadine. It's all a bit trial and error. The only drug that's worked for me has been the prednisolone, but of course I haven't tried much else, and nobody seems keen for me to continue with it.

Thanks again for replying _ I really appreciate it!

Pete x

[helixhelix in reply to psalmster]

I take Hydroxy, and Methotrexate and Sulphasalazine. It's a combination that has worked well for me so fingers crossed that you'll find the same. But I'd start pushing for an appointment and phoning to see if there's a cancellation available rather than waiting another 2 months. Polly

[Hidden]

Hi Pete. My mother-in-law has just been diagnosed with PMR and put on 20mg of Prednisolone which worked almost instantly she said. I read up about this condition following her diagnosis last week and it apparently almost invariably affects over 60s only - whereas RA can hit at any age - including sometimes even children (I say this re your age comment to Shirl!).

What I learned from reading up on PMR is that it is almost always treated with steroids and that this appears to be the only treatment for it - and that often it goes away after several years but sometimes (less frequently) it can turn into Giant Cell Arthriits which is far more serious? I suppose, because my mother in law is in her 80s now and has a lot of other serious health conditions as well, no one, including her, is going to worry too much about osteoporosis from the steroids. She is just delighted to be pain free for Christmas.

But if you have both I'm not sure why they aren't focusing more on treating the RA sooner rather than later as it's the more destructive and long term condition. As Polly says Hydroxy is the mildest of the disease modifiers so Methotrexate or Sulphasalazine are both better options. And I imagine it's confusing for you and for your rheumy team because many of the symptoms of PMR and RA seem to overlap and inflammatory markers for both are usually high initially. It really is a case of trial and error/ suck it and see with rheumatology I'm afraid. Tilda x

[psalmster in reply to Hidden]

Thanks Tilda for replying. It will be interesting to see what my consultant puts me on when I eventually get to see him.

[earthwitch]

I get really annoyed when I hear that people have been diagnosed with PMR and treated with pred without showing raised inflammatory markers. PMR is one of the very few diseases where you must have very high ESR to diagnose it, so it sounds like you were definitely misdiagnosed there. PMR also only usually requires a year or two treatment with pred and then should disappear completely. Steroids are nasty drugs long term as they can cause real problems with bone density and with adrenal function, so your rheumatologist is right in wanting you to come off them. The fact that you are getting relief from pred pretty much confirms that you have inflammatory arthritis of some kind though. However, as others have said, they should be working with you to find one or more DMARDs to use to control the RA so you don't need the pred. From the sounds of it, the sooner you get started on either methotrexate or sulfasaliazine the better as they really are the right kind of drug for RA. Once you have been on either of those for a couple of months, they should be starting to kick in, and you should then find it easier to get off the pred.

[psalmster in reply to earthwitch]

Thanks for replying. I am finding these replies really helpful; it will be interesting to see what the consultant puts me on.

Pete

[earthwitch]

Just out of interest, here are the diagnostic criteria for PMR cks.nhs.uk/polymyalgia_rheu...

One of the key things is age - it really shouldn't be diagnosed by a GP if you are under 65, and if they suspect it when you are younger, then you should be referred to a rheumatologist before treatment begins.

[Hidden]

I had the symptoms of polymyalgia for a year before RA (which is quite common??) anyway, the doctor was very puzzled as my inflammation markers were normal but all other bloods confirmed RA, 1 month later the inflammation markers shot right up, I was told it was a 'no brainer' I did without a doubt have RA.

The nurse suggested that the hospital made a mistake with my CRP.

When i was waiting for my first consultant appointment my GP would not give me any steroids (as directed by consultant) until I went as he wanted to see exactly how I was effected and I believe was then able to treat me as required. I think if my RA was damped down by steroids then I wouldn't have been treated as aggresively (I was given 3 dmard's at once) as I was therefore the disease was brought under control before any permanent damage occured.

Does that makes sense?? I was harder at the start without it, but I'm thankful now as I reached 'induced remission' within 10 months of diagnosis because I got the right treatment without delay.

Sorry, I waffle on as I wish everyone had my Consultant!

[psalmster]

Thanks for your reply. That's really helpful. It will be interesting to see what my Consultant puts me on.

Pete

[fastball]

i was diagnosed PMR years ago by a consultant who specalised in RA and when he tried to reduce my pred the pain came back straight away. He then said it wasnt PMR and it wasnt RA either and he didnt want to know. Mt gp sent me to someone else and that was when i was diagnosed Psa and was given MTX which i am still on. Hope you get sorted. chris

[psalmster]

Thanks Chris for your reply. It does seem a bit trial and error at the moment. We'll see what happens after I see the consultant. He reckons I have RA and has suggested I start on MTX or Sulfasalazine. I'm down to 4mg pred and am in a little pain all over, feel unwell and everything's tight. Hope you are going on ok these days!

Pete

[oldtimer]

My sister was diagnosed with Giant cell Arteritis (GCA) and Polymyalgia (PMR)- she lost sight in one eye with the GCA after having had lots of investigations for her tiredness and muscle pain - the raised ESR and positive biopsy clinched the diagnosis.

But she has not been able to come off the steroids and is still taking them after four years - although a lower dose .

Because of our family history (I have RA, and our grandmother was one of the first people to have gold injections), she has been tried on various DMARDs - methotrexate, leflunomide and sulphasalazine, but she doesn't think they have have made much difference. She still needs the steroid dose or she stiffens up.

Looking at the medical articles written about PMR (and GCA) treatment is still very trial and error. But it seems that RA can sometimes present as PMR symptoms that persist longer than usual, especially in the older age groups.