I have recently been diagnosed with PsA. However, it seems that another doctor is saying that it polymyalgia rheumatica (PMR) which, is more to do with muscles.
Having checked reliable research l see that all my symptoms match PsA and NOT PMR.
I am being told to grieve and accept my diagnosis. I am 58 and up until a couple of months ago was extremely active, going to the gym etc. Now l can barely walk. How can l grieve and accept when even the doctors appear to be in cahoots of what it is.
I have been put on methotrexate, sulfazaladine, prednisolone (short term) and plaquenil, which l stopped as it is causing my psoriasis to come back (which was all cleared up) again.
I hope l am allowed to ask this here. I am new on this site and am desperately seeking advice.
Thank you
Written by
Ralo123
To view profiles and participate in discussions please or .
From my personal experience you should not bother at this time what your autoimmune disease is called, you must be again able to move without pain,so ask your doctor to prescribe you with other drugs which will fit your situation with the least adverse effects on you(classic or new drugs).After some time with your personal help you and your doctor will probably agree in a disease that you are in to.
Also have in mind that a certain drug might help someone and other not.
As for my self, I probably have PSA,
(Enthesitis in most joints and very little psoriasis)
for the last 3-4 years and I am on Otezla-Apremilast feeling 95% fine,with till now no adverse effects and I hope it will work for me for a long time.I hope this will give you some help.
Arthritis etc are often extremely difficult to diagnose. What diagnosis means to a doctor is the best choice of medication and not much more. From their perspective you have it for life.
From my perspective you can fight these conditions, and with determination and total focus, seriously improve your health, even removing symptoms and even possibly meds. Fighting is all about diet. If your doctor says diet has no effect then get another doctor!
Are you sure about your symptoms since this seemed to come on rather quickly for you? Please go to the Health Unlocked PMR group and read through people's experiences and symptoms to see what seems to fit you...the PMR group is full of highly educated clinicians and wonderful helpful people! See a Rheumatologist to get your best diagnosis, although even specialists are not infallible and sometimes it requires getting second opinions and finding the right physician for you. You really do need the right diagnosis as the physiology of PMR and PsA are different and the treatments are different, and left untreated, they each have their own set of risks. I've had PMR and got through it , but now am waiting to see if I ALSO have PsA.
First, there are blood tests for PMR and generally they test for inflated C-Reactive Protein levels and sedimentation rates. But, the tricky thing is that some people don't test positive for these things and they still have PMR. My rheumatologist and dermatologist both told me that are no blood tests for PsA...rather your physician may test you (blood tests, xrays, etc.) for other forms of arthritis to rule them out... then if you have psoriasis AND symptoms of arthritis and they can't find anything else, you get the PsA diagnosis.
For most of us with PMR, it comes on quickly...sometimes you simply wake up with it one day. It tends to effect both sides of your body equally...all of the sudden you feel incredibly stiff...it is really tough to get out of bed in the morning. Your back feels like it has no strength and most of us have to sort of rock side to side to sit up...or pull ourselves up with our arms. Many people can't raise their arms up past chest or shoulder level. I went from being a fairly healthy fit person to feeling like I aged 30 or 40 years in a week. For me it started with my legs but for many it starts with their arms and shoulders. My primary care physician was afraid to diagnose me because I was only 52 years old, which is a bit on the young side for PMR. Within a month I could barely walk and I couldn't stand up straight...I had to walk bent over. Unlike PsA, the treatment is prednisone...did you find any relief while you were on it? It's one of those medications you love and hate at the same time. It reduces the inflammation (PMR actually involves inflammation of your blood vessels although it feels like it is stiff and sore muscles with a tendency for joint injury) and one of the sure signs of PMR is how quickly the prednisone gives you relief and for most its within 1 -3 days! Within 4 hours of my first dose I could walk up the stairs without dragging myself up with my arms. But...PMR patients need to be on prednisone for the long term and it can cause osteoporosis and other side effects if you are not taking the right supplements. PMR patients need to start on it for several weeks, typically at does between 15-20 mg, and then slowly, slowly wean themselves self off from it over a period of years...typically 2 to 6 years. The prednisone relieves the inflammation, but it doesn't actually treat the underlying autoimmune disease...you just have to wait it out and live as healthy as possible. If you try and wean off the prednisone too quickly, you'll just cause your PMR to flare up again and you'll be back at square one or maybe worse. One good thing about Prednisone though it that is not an expensive drug...unlike the biologics that one might take for PsA.
Anyway, it took me 2 years to get through the PMR and wean myself off the prednisone. Then I went through another 3 years of knee and lower back pain with good days and bad days but nothing nearly so extreme as with the PMR. As I mentioned, my physician thinks I also have PsA but before I go on yet another long term medication and one that's expensive, I'm going to take some DNA tests and see if there are any genetic markers.
Good luck to you in finding your right diagnosis. Even if your physician has given you the right diagnosis, if you don't feel like you can trust him or her, or if they are impatient with you, it's time to change!
thanks so much for your reply. I have decided that I will get a second opinion because it seems my rheumatologist keeps chopping and changing her mind. She has now sent me to see a neurologist because L have severe lower back pain which is also in my buttocks and which penetrates down my upper legs (alternatively).
One thing I know is due to her keep choipping and changing her opinion of what it is, its getting me reallt down. I personally think its PsA and after having asked her numerous times when she thought it might be other things as well she clearly stated 'no, you definitely have PsA but we are checking to see if there is anything else'. It was actually when she brought a collegaue in who asked me about the leg pain that she started chopping and changing because he said I wouldnt get leg pain with PsA.
She also lowered my methotrexate from 10 tablets a week to 6 and the pain has become much worse b ut she doent think that it has anything to do with it. It is njust so frustrating and yet sje wlso spoke about giving me biologigs but said they are expensive (even though I am insured and my heath Insurance will probably pay for it - I live in Holland so its different where you guys are).
I will definitely look at Health Unlocked PMR group and see if l can become any the wiser.
I forgot to say that she did give me Prednisone and absolutely it i a love hate drug but it was a miracle drug for me. She strated me off on 15mg daily but said she didnt want to keep me on it long and reduced it to 10mg after the first week. Then she reduced it to 5mg and stopped it. I dont really have anything at the moment that is helping my pain :0(
Very, very good that you are getting a 2nd opinion! I'm not a clinician soooo I absolutely do not qualify to give you a diagnosis, BUT, it really sounds like it's quite possible your Rheumatologist has not read the latest literature/medical evidence on treating PMR. That's because if the prednisone was a miracle drug for you, it's a strong signal you have PMR, and matters just as much to the diagnosis than the results of the blood tests! Also, she reduced the dosage far, far, far too quickly. She was not using a dosage protocol for PMR, which causes long term inflammation. While PMR is not what you think you have, in a way it could be good news if that's what is troubling you. PMR usually goes away after 2-5 years and, while it will effect your energy and mobility, it can usually be well managed with simple prednisone (and they are finding that one you get down below 7mg the long term side effects of prednisone are far less than once feared.) Whereas PsA is a disease that is more degenerative over time and requires expensive therapies. BTW, a lack of understanding is not uncommon for family physicians, but it is a bit surprising for a Rheumatologist. But it's possible she only sees that disease in people over 75 as it is not all that common in people in their 50s. If you go to the PMR support group on HealthUnlocked, you find lots of clinical research papers...or ask someone there for a link if you can't find it. Anyway, you are absolutely taking the right step in getting a second opinion and when you call around, make sure you ask if they are experienced with diagnosing and treating PMR. Best wishes!
Yes, it's PMRGCAuk (GCA is a related disease that some people with PMR get...it's quite serious as it can cause blindness.) I thought the research would be pinned but I don't see it. If you post and ask for it, PMRPro (a moderator) or one of the others will post a link for you.
Once again thanks so much Rosedail for your support. I have no faith anymore in my current Rheumatologist. The problem is that not everyone fits neatly into their little medical text book. I have had tests before i.e. for blood clots (D-Dimer blood test) which came back -‘tive and yet a scan showed not 1 but 2 huge clots at the same time. Other times l have had -‘tive test when l clearly (and the doctor cud see for himself) had the illness/disease - little bit of a medical mystery has been mentioned before.
I did try and look for the group but cud only find individual comments made by people - is that what you meant? I cudnt seem to find a chunk of info or clinical papers so maybe l am not using the website right - this is new to me. I will take another look. Thanks again
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Pitted nails
Need advice on treating psoriatic arthritis 
Sore
Honest opinion
