Please advice and help required . From April after being diagnosed with PMR , the steroids at40mg were not working . Making me so poorly and not relieving the pain . The rheumatologist put me onto an anti inflammatory drug 90 mg . These make me have sickness and diarrhoea, along with dizzy spells . In which I had a fall and ended up with a black eye . The medication was stopped as requested by the doctor . The pain and depression are so bad . I can’t sleep , I can barely dress myself . I feel that there is no light at the end of the tunnel . From been a healthy energetic 58 year old , I now feel like I will never be able to do anything again .
my next visit to the rheumatologist is 15th sept . Advice please 😢😢
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Juapce63
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Hi - gosh so sorry to hear that. Firstly everyone on here will totally empathise with how desparate you feel. I was the same and found this forum and was so grateful for the experts in our midst. I found out things that my ‘ medical team’ ie my GP and specialist didn’t tell me about. Hang in there, there will be light at the end of the tunnel and I’m sure you’ll start getting lots of helpful advice. I’m not going to attempt to offer anything in that department except 40mg prednisolone for PMR alone seems very high and it’s unusual to be having anti-inflammatories in parallel. But as I say you will hear from the experts I’m sure. With this forum you are never alone. All best wishes and keep up your hope- there will be relief around the corner.
I'm so sorry! I'm also 58 and used to walk for miles, scorning public transport, until I suddenly found myself in that condition (almost unable to get out of bed, struggling to stand up from the toilet and fighting to put my socks on.) I have only been diagnosed since June so won't try offering advice. Someone experienced will be along soon to support you.
When I was diagnosed with PMR by a Rheumatologist and only given 10 mg. Prednisone, the wonderful Administrator on this site informed me that I needed at least 15 mg. to determine if I, in fact, had PMR or not. I was given links to the American Rheumatological Assn. and an International Rheumatological Group. Their literature confirmed that the pain would go away on 15 mg. IF it was PMR. It was both diagnostic and pain-reducing.
Thanks to this sage advice and professional information, I visited another Rheumy who immediately prescribed 15 mg. Prednisone. When, after two weeks, this awful stuff had NO effect on the excruciating pains in my shoulders, hips and low back, I was informed I did NOT have PMR!
Thus, it appears that 1) 40 mg. Steroids is much too high; 2) If you have had no pain relief, you do not have PMR, and 3) 90 mg. Of most anti-inflammatory medications is not tolerable, as you, sadly found out.
I would find another Rheumy or GP who can determine what is wrong. There are over 100 different forms of Arthritis but it doesn’t appear to be PMR.
My Primary Care physician prescribes Ambien for me to sleep and I’ve also begun taking 10 mg. (Up to 20 mg.) Time-released Melatonin. I HAVE to have sleep to deal with life and the pain. If you can’t sleep…of course, you will become depressed!
I hope your appointment on 9/15 is with a new physician. If not, I would seek alternative care, as some physicians just don’t understand how to treat such maladies.
Blessings for recovery. It will be a long road getting off steroids but I reduced 1 mg. Every two weeks and it was challenging but turned out fine.
I’m not on here much b/c I am now only dealing with osteoarthritis of the SI Joint. Not much they can do for that. I hope you find a solution…soon!
15mg is only the startand you almost always need that much - but if it doesn't work it is fine to try 20 and 25mg if necessary. If that doesn't work THEN it probably isn't PMR. But only probably if they can't identify anything else.
Thank you so much . I’m off all tablets now until I see her again soon . She’s the second specialist I’ve seen . Both took all the relevant tests both came back with PMR . Neck should back , swelling and numbness in my hands . The worst is my hips as I’m unable to sit or raise from toilet . Not a good look 😢
Is this same Rheumy that you saw initially? …if so I would be trying for a second opinion.
Looking a previous post, most of us suggest that your starting dose was not given chance to work……but if an increase to 40mg didn’t work either, then it sounds as if it’s not PMR.
This is the second one . The first was Colin Pease . This one is from chapel allerton rheumatologist dept Leeds . She’s good and has been calling me to check on me . I’ve decided to keep a diary until I see her on the 15
Hi- I am new to the group and can totally empathise with how you feel. I am unable to give you any advice, but all I can say is that I do get good days which give me the strength to cope. I just wanted to say you are not alone. All I want is to get to a stage where I can return to work and feel part of society again. Like you, I am 58 years old.
You certainly sound as if you are going through the mill & thank goodness you have an appointment with the Rheumatologist on 15th.
I would write everything down so you don’t miss anything out but it certainly seems as if this is not just ‘straightforward’ PMR & they will/should start looking at a differential diagnosis.
As DorsetLady asked what was the Medication that made you so sick?
Please let us know how you get on.
Kind Regards
MrsN
Actually, l think it might be wise to ring your Consultants Secretary on Monday to update your Consu, explaining what’s going on & he may ring you in the interim or possibly bring your appointment forward.
I am relieved that medication was stopped, for your sake. I didn't know it was still on the market anywhere in the world. I'm sorry you had to suffer additional problems first. You say you've seen two of the top people in Leeds who confirm PMR, but did they run all the tests needed to eliminate other possibilities? I think with covid there have sometimes been problems getting ideal levels of lab work done. I do hope you can have a proper doctor consultation sooner rather than later.
If the dose of 40mg is not controlling what is claimed to be PMR pain - it almost certainly ISN'T PMR. 15mg is really the starting dose and for many of us that is plenty - but the 2015 international guidelines say "the lowest effective dose in the range 12.5 to 25mg", exceptionally it may take 30mg.
The symptoms we call PMR are not the disease itself, they are the product of an underlying condition. In our case it is probably an unidentified autoimmune disorder that causes a problem with the small blood vessels supplying the muscles and soft tissues around the joints. The symptoms we call PMR can be caused by a range of other illnesses and it is important they are ruled out first before plumping for PMR - it is to a great extent a diagnosis of exclusion. If it IS PMR, then it will not respond to antiinflammatory medications except pred - even if the literature used to suggest them. The 2015 Recommendations say they should NOT be used.
OTOH, if they didn't help it may show it isn't one or two of the other options.
It does not sound like PMR if 40mg of steroids does not work. There are other things that are similar such as fibromyalgia and even vitamin D deficiency.
Have you got any GCA symptoms? I would have thought 40mg would help a little for GCA. You need to tell your rheumatologist how much pain you are in before your appointment in my oppinion.
When the diagnosis of GCA and PMR and aortitis eventually happened after 6 years I was told that I had been ill for a long time. I couldn't get dressed, wash my hair or get out of bed and it got to the stage that I was crawling the 14 steps from the bed to the loo. I don't know if it was GCA or PMR that had the worst effect but I know that ghe GCA rendered me useless, whereas PMR was pain.
I had the same problem with getting out of bed and getting dressed, I didn’t bother! I had PMR not GCA though. I found it was even painful to raise a fork to my mouth. I still lie in bed thinking about how awful it was. Steroids were a godsend..
So Sorry to hear that you are so unwell.My PMR did not respond to, 15mgs or 25mgs but it responded immediately to 40 mgs plus Methotrexate and after ruling out all other possibilities. My then Rheumatologist described me as ‘steroid resistant’
I feel happier reading this . My specialist is amazing and is really trying to make my life better . It’s definitely PMR I have I’ve seen two of the top people in Leeds . I know when I go back she’ll try to sort it out , just in the meantime I’m struggling so much with the pain . I really feel I want to go to sleep and not wake up . I’m usually a fun happy person 😢😢😢
I felt just like you. I didn't want to be here any more with so much pain and being unable to do even the simplest things. You will get sorted and you will be that fun, happy person again. Thinking of you.
Hi there. I have read all the previous posts and agree with all the comments and advice.I would add that if you feel that bad and the pain is unbearable why wait till the 15th September to get medical help ? Phone your GP tomorrow and insist on a face to face appointment and get a through review of your case. Have you got a partner or family support ? I wish you well and hope you have found all the responses on this site helpful .
Hi Juapce, this really doesn't sound like PMR to me. Having experienced a flare-up recently with PMR, I remembered that painkillers do nothing for it but steroids, within a day or two, kill the pain dead. I know we're all different but this really doesn't seem like PMR. Second opinion might be very useful. wishing you well. x
I'm so sorry you are having such a tough time. I can't answer re PMR as I don't have it but do remember the total shock of starting high dose pred to the point of writing several letters to my gp about my side effects and going to the hospital on top. I was all over the place, but it did, eventually get better, or maybe I understood what was happening more, I'm not sure. Do you mean that now you aren't on any medication at all? I hope I have that wrong, as it would be no surprise you are feeling so down.
I would try and get hold of your consultant and explain how you are feeling before the 15th. It's a long time to wait feeling the way you are.
Hello Juapce...I have a similar story which might shed some light for you.
I also was given 40mgs after 15 failed to work. Had raised liver function blood test and inflammatory markers but all Antibody tests for R Arthritis etc negative . I was Diagnosed with PMR. eventually after 18 months was discharged and told I was better as ESR & CRP normal. I knew I wasnt as still in pain but thinking the steroids were not really helping weaned off them fairly fast. Eventually paid to see a different consultant who took one look at the minor swelling below thumbs and commented he thought this could be Rheumatoid Arthritis. I was started on Methotrexate (I wonder if your consultant might swap you to this...ask). I am now on Biologics too
Important to note:
20% of people with RA have -ve blood tests
Needing 40mgs steroids implies you dont just have pmr
I was diagnosed with an MRI of my hands using FLUROSCOPY
I had niggling hand pain left side only at first, consultant dismissed as not relevant even when mentioned at very first appt
I understand my Inflammatory sero negative RA started with pmr too
Remember, this is a difficult thing to diagnose and we are all different. We can all respond differently to different meds. I dont go for Dr bashing but some are more experienced than others, they are doing their best. I paid to see a private Consultant latterly before going back on the NHS. Now 3 years since I am still trying different meds to get control. Unfortunately I do have some joint damage on top of arthritis I already had.
Keep a careful record of change in symptoms & meds, make lists of Q's for your Dr and try to be patient. The NRAS web site is a great resource.
I hope you can manage to keep positive ...there will be a lot of folk here wishing you well...we have all been there too!
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