Diagnosed with pmr

hi Suziemo, well i was diagnosed with pmr oct 12, and given 40 mg of pred right away, high dose, by gp, no baseline bloodwork before starting pred, so when referred to rheumy, everything, blood work clouded have gone from 40 to 20 , but now being on 20 for some 3 weeks or better last while, symptons returning, i dont know if the bloodwork showing RF factor was done, and the other csr , sediment rate was not raised, although was on pred when those were done, now im wondering, if it,s actually pmr or RA, my rheumy wanted me to stay on 20 for while then reduce to 17.5, she, away for 3 weeks, but now with increasingly painful symptons back in am, i am thinking may be RA afterall but don,t know if i should see gp while she,s away, he is reluctant to make any decisions, as says she is expert, 

When you first took the pred did you immediately rush around doing all the things you hadn't been doing? And then the symptoms came back? The pred is only there to manage the symptoms - your muscles remain intolerant of acute exercise and if you do too much will not only protest loudly, they will take much longer to recover. You have a new normal - you can't go back to doing all the things you did before without payback. You need to learn to pace yourself and rest appropriately - then it won't be as bad but there will still be limits.

Who made the diagnosis - your GP or a rheumatologist? Who says you have arthritis in your knees - and what sort is it? If it is rheumatoid arthritis (I'd been surprised if osteoarthritis would appear in both legs so quickly) then it could have presented looking just like PMR - it does happen - but is now raising its head as what it really is. In which case - you need other medication to manage the RA (or whatever it is) and you need to see a rheumy soon about it before damage is done to the joints. 

On the other hand - if it is PMR and you have already weaned down to 5mg - it is hardly surprising you have a return of symptoms. That original dose didn't cure anything - you need enough to manage the daily top-up of inflammation that happens each morning. Without enough pred you will jsut go back to where you were.

But you need a proper diagnosis - not just "you have arthritis knees". YOu need to know what sort and what medication will work best for it. And that is no a GP task - it is a rheumy task.

Hi Suziemo

Eileen who is more the expert I'm sure will comment. I just want to say that the likely hood of the return of your pains is due to the drastic reduction in prednisone not controlling your PMR. I've had PMR for 14 mos and only dropped 5mg.

As for how you feel it i totally undetstand. The first few months on prednisone i was so depressed i was suicidal from both the desease and the drug. I had this beautiful slim face and now i don't recognize myself. I'm the same weight but it has shifted. I don't let my husband take pictures of me on trips I'm so embarrassed.

This is my new reality and i have to get on with it and still enjoy life. It is the drug or do i want to be in excruciating pain. I choose the drug and for me not everyone i happen to have many of the nasty side effects. I too was iny 50's when diagnosed.

Reading and getting educated on the disease and drug helps you cope and be ready.

This forum is a wealth of knowledge, information and support. Read up on tappering off prednisone and the drop dead slow method and you will understand how your tapper wad way to fast.

I hope i have helped you.

Mariane

I have put on the pounds too (I weigh as much as a man).  Hate tucking things in and even my lovely hairdresser said put your hair behind your ears so your face looks longer.  I also have the thrill of hippo throat plus I seem to find more facial hair and that is the limit.  I really am the woman with everything.  I work in two high schools and I just wonder what these students must think (but I dont care). 

​Sounds to me (no expert) that your knees are arthritic but maybe you reduced too quickly.  With this condition you have to go with the flow.  Take a nap when you need it but keep moving but give yourself a break.  I am late 50s too and all my friends are younger - they have no idea. 

Good luck and be kind to yourself.

Way before I got PMR I injured my back (10 years ago). Over the years my back has deteriorated so bad I can'tt even walk very far. And I went into a deep depression. My body suffered because of it.You sound a lot like me back then. I put on a lot of weight and nothing I did changed that. (I also had thyroid issues at the time that I didn't know about).You need to come to terms with this disease. I think a few visists with a therapist might help you.

I'm 53 - diagnosed just after my 51st birthday. I have bad hips (from running!) which I was confusing with PMR pain - got cortisone shots in each hip last week and seen a massive improvement in how well I can move about - I can even walk upright again without the penguin waddle! lol

I've put on a heap of weight, my face is like a walrus and I'm sooo fat around my middle. I absolutely hate it. My liver function is also terrible. I have fatty liver, and pre-diabetic, early stage cateracts and high Blood pressure. Thanks pred.

If you haven't had a return of the other symptoms of PMR you may well be right - is the pain only in your knees now?

 

Just want to say hang in there this illness is an on going fight to get a balance of meds ,rest and exercise to not get mentally worn down is hard I found it hard to accept that i just can't do things I did before it made me sad and depressed I had to give in a little and work with it not against it . I to had anxiety when above 10mg of pred and you feel pretty wired and cant sleep well . I have tightness and pain in my knees too my pelvis is tight and some times i get where I wonder if I can take enough steps to get where I need to go I have a certain amount of energy and when I use it up its totally gone and i have to rest much to my frustration. I have waves of heat and pain that travel overy body but do pass I just weight it out . I have lost my buffalo hump and some roundness from my face since I have gone down to 7.5 mg pred taking 5 in morn and 2.5 eve so as not to be so wired near bedtime . I also take 50 mg tramadol at bedtime this has helped with pain at night when I turn over on bed I find if i get some good rest I Can cope with the other stuff better . I think it is a bit different for everyone and it also has similar symptoms for us all were all traveling the same road trying to figure it out , I'm in my 50 ts too I'm thankful for the good days when I have them and hope the bad ones don't last too long . Hope you're having a good day today and you find help with your pain .