PMR or ARTHRITIS: I am a 53-year-old female. I... - PMRGCAuk

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PMR or ARTHRITIS

CanadianJo
CanadianJo

I am a 53-year-old female. I started with stiffness in the hips and shoulders/upper arms in October 2017.

With an ESR of 36 and CRP of 23.8 the doctor thought it could be PMR and started me on 20 mg of prednisone. It did not provide immediate relief but after about a week it helped. I was referred to a rheumatologist.

I saw the rheumatologist in January 2018 who did further testing and wanted me to reduce the prednisone. He was not convinced that it is PMR.

I have had x-rays of the chest, lumbar spine, S I joint and hips, ultrasounds of the abdomen and pelvis and an MRI of the spine and hips. I reduced the prednisone from 20 to 0 over a five month period because he did not want me on the prednisone when I was having the MRI. The stiffness came back. My bloodwork has shown negative results for rheumatoid arthritis, the MRI did not show any signs of ankylosing spondylitis and I have an appointment in February with a dermatologist to check an itchy spot on my scalp for psoriasis which could lead to a diagnosis of psoriatic arthritis. I have a family history of rheumatoid arthritis and spondyloarthropathy and have the gene HLA-B27.

The rheumatologist keeps prescribing anti-inflammatories not thinking that it is PMR but some form of arthritis. I am now on Indomethacin and have tried Celebrex, Arthrotec and Meloxicam over the past four months. They take the edge off but do not get rid of the aches and stiffness in the upper arms hips and thighs. I have tried physiotherapy on the upper arms but found it very painful with no results.

I have had cortisone shots in both hips and shoulders. These helped for about 3 to 4 weeks. Very strange that when I got the shot in my shoulder, the following day my hips felt better too! I have told the rheumatologist that the prednisone is the only thing that has worked but he does not want me on it when I see the dermatologist in three months.

In my four appointments with the rheumatologist, he has said he does not think it is PMR because I am in my early 50s, the prednisone should’ve worked immediately and not taken 1 to 2 weeks and my inflammation markers are lower than typical PMR. (My ESR has been 36, 47 and 48 and my CRP was 23.8 and 17.6)

I am curious as to how high inflammation markers of other PMR suffers have been and also how quickly the prednisone has worked. If it is arthritis shouldn’t the anti-inflammatories help? The pain and stiffness is not in the joints but feels like it is in the muscles.

My biggest challenges now are getting out of bed, seizing up after being in the car or sitting for a while and getting dressed (especially putting on socks and putting my arm through a sleeve).

My next appointment with rheumatologist is in December. Any advice on convincing him to try prednisone again?

32 Replies

Hi CanadianJo, I am so sorry that you are having such pain. While we are all different, if this is any help to you, my timeline is the same as yours: discomfort began in Oct '17 and dxd wi PMR in Jan '18.

My blood tests in Jan '18 were: CRP 38, ESR 53.

Rheumie put me on 15 mgs Pred and I felt better that day. Gave up sugar, white flour, processed foods in an effort to help reduce inflammation. Added supplements. I am tapering on DorsetLady's dead slow method and am at 6.5 mgs. In Sept '18: CRP .2 ESR 5.

You will find discussions on this site from people younger than 60 who have PMR.

Hugs, Diane

CanadianJo
CanadianJo in reply to DianeA1

Thanks Diane.

There have been known cases of people as young as 27 and 33 who have been diagnosed with this "Old peoples'" illness so I don't think age can be considered a main aid to diagnosis any more. I have fibromyalgia as well as PMR, which, when they both decides to flare together, makes it difficult to work out what is causing what. However one of the many things I have learnt from these good people on here is to take things very easy on the good days so you don't cause a flare the following day and take things even easier on the bad days. We have all been there when we have felt "today is a good day. I shall do some deep cleaning." The following day we hurt so much we can't even get out of bed. Do not let him make you think it is all in the mind. I've been there and had to fight every inch of the way for a correct diagnosis. My last PMR flare took 9 days to respond fully to pred. I was told afterwards that had I taken a larger dose initially for a few days it would have worked quicker. I'm of the opinion that half the time they make it up as they go along. Nobody knows for certain how PMR is going to present in any given person. They don't have anything they can point to where they can say this test shows you definitely have PMR. All they can do is rule out what you don't have and what is left is PMR.

Stella3
Stella3 in reply to DianeA1

Hi Diane, I have read your answer to Canadianjo and am interested in your anti inflammatory diet. Did you follow a specific AI diet? Could you tell me what it is? I have PMR/GCA and am gradually lowering my prednisone, now hovering between 5mg/4mg but I feel the pain and stiffness coming back and am not sure if that is how I was before or I am getting the symptoms again. I did start on 60mg last summer. Many thanks

DianeA1
DianeA1 in reply to Stella3

Hi Stella3,

My sis researched PMR when I was dxd and said 'no sugar, no flour, no gluten, no processed foods, no dairy '. (She actually said that in ALL CAPS!!) She consulted a nutritionist for me and showed up at my door with her arms full of bottles of supplements. Even Anti-Inflammation lip gloss!!! And I googled the AI diet and added or cut out foods according to that. In the last 10 months, I have added back good quality butter, cheese, cheese and special occasion cake.

I keep fruit and nuts out on the counter & hard boiled eggs in the fridge so I don't go digging for something bad between meals since I am a grazer. I am thrilled that my joints don't have to carry all the extra weight I used to have!

Per HeronNZ's osteoperosis thread, I have added walking and supplements to help counter Prednisone's hit to my bones. So far, it is working.

I don't know what affect this diet has but I never ever want to feel that amount of pain again and am 'scared straight' so to say!

I look forward to being at 5/4mg like you! Did you really go from 60 to 5 in a few months?

Hugs, Diane

Stella3
Stella3 in reply to DianeA1

Thanks so much for your response. I am definitely going to try it. It sounds like you have a strong willpower but I agree that pain was so horrible. I was diagnosed summer of 2017 not 2018 as it sounded. It has taken me that time to decrease but I am nervous as I had inflammation in my last blood test so have gone from 4mg to 5mg I am having some joint and muscle pain again so will probably increase. Good luck to you. I am impressed by your stamina at sticking to your diet.

PMRpro
PMRproAmbassador

"he has said he does not think it is PMR because I am in my early 50s, the prednisone should’ve worked immediately and not taken 1 to 2 weeks and my inflammation markers are lower than typical PMR. (My ESR has been 36, 47 and 48 and my CRP was 23.8 and 17.6)"

He's talking b********* - there are a lot of us where it started in our early 50s, up to a fifth of PMR patients have an ESR in normal range (which means under 20 these days so yours are well raised), and if you needed a bit more (and 1mg can be the difference) it would take longer to get a result for any synovitis or bursitis. One by one: I was 51, my ESR was in single figures much of the time and even with a really severe flare while i was in hospital it hovered at 16-18 and while the stiffness improved dramatically in a few hours a lot of the pain took a few months to go away fully. Some people need a bit more time - doesn't make it not PMR though. The current recommendations say "the lowest effective dose in the range 12.5-25 mg should be used to start". And that PMR/GCA occur in over 50s.

PMR is a diagnosis of exclusion - he's excluded some other things, he needs to look at the others. And then accept that pred is your answer - for the moment at least. It isn't unusual for patients to have a shoulder shot and find their general pain improves and it leads to a diagnosis of PMR. I do see why he wants you to not be on pred when you see the dermy - but I thought PsA does tend to respond to NSAIDs. Physio often makes PMR worse so that would fit. The side effects of pred are minimal compared with those of some of those painkillers - I know which I'd rather take! Particularly since it works and they don't!

No chance of another doctor I suppose? Where are you? There are several Canadians on the forum.

CanadianJo
CanadianJo in reply to PMRpro

Thank you very much for your reply and information. I am in the Ottawa area and have have considered another opinion.

I am in the Toronto area and have had none of the problems with the professionals as is so often described on this Forum. So keep looking. I think, wherever we are in the world there is the right fit for us somewhere. Good luck !

Mikb
Mikb in reply to CanadianJo

Like Readingbooks, I am also in Toronto and have had no problems with professionals. Spent the weekend in Ottawa at my nephews wedding and after an almost 6 hour drive home (401 was a nightmare) I can hardly move today. Here is a site that you may find useful for choosing another doctor.

ratemds.com/best-doctors/on...

Hope you find a doctor that can help you.

From your description of problems sic : "My biggest challenges now are getting out of bed, seizing up after being in the car or sitting for a while and getting dressed (especially putting on socks and putting my arm through a sleeve)."

This sounds very like to a spondy Dx, plus, add in your information : "I have a family history of rheumatoid arthritis and spondyloarthropathy and have the gene HLA-B27" and, sound even more 'spondy'. But, agree with the points raised by PMRpro, including "Physio often makes PMR worse so that would fit", Physio for AS needs to undertaken by a physiotherapist well versed in treating AS as it is a whole different ball game.

I agree with the advice to take a second opinion, but, should be a rheumy who specialises in diagnosing and treating AS ! 'Could' be AS but on the other hand 'could' be PMR ! You need a really good rheumatologist. To this end, here is a link to the CA AS Association. They should be able to point you in the right direction :-

Canadian Spondylitis Association | Support & Advocacy | In Your ...

spondylitis.ca/support-comm...

Connecting is simple. Just select your province or territory for more information.

Hope all the problems can be sorted soon. Take care and go well - from a 'spondy' -

HeronNS
HeronNS in reply to Ruadh

I don't know. Those symptoms sound exactly like what I experienced before treatment for PMR. Never any suggestion it could be something else - not after the magic response to pred and negative results for a bunch of other tests run before treatment.

Jane185
Jane185 in reply to HeronNS

Yep exactly! I had trouble getting out of a car - the longer I'd been sitting there the worse it was. I remember using my hands/arms to pull my legs out of the car to go to the doctors. And also trouble getting cardigans/coats on etc. The pain in my pelvic area and shoulders had also travelled down to almost my knees and elbows. I was finding difficult to walk any distance because I felt so weak. This all happened over the space of 3 weeks, whereas I doubt that arthritis would happen in that kind of time-frame. My doctor put me on 40 mg of pred. and I felt better that very night. My CRP was 105, ESR 55.

I cannot believe what rubbish some doctors talk and let their patients suffer in awful pain. Amazingly enough people in their 50s do get PMR and he should be aware of that. You have high inflammation markers against the norm he should also be able to see that unless he is innumerate. The only thing that really helps PMR is pred any other painkillers are pretty well a waste of time. I do hope you can find someone with a bit more sense. I was told I had a virus!

Hello Canadianjo,l am sorry you are in so much pain,l know how difficult dressing oneself was when l first had PMR, in fact it was hard to cope with everyday things untill l was given prednisolone,and within forty eight hours l was free of all the pain and stiffness.lf the Pred.,does not make you feel better,it is most likely not PMR.l hope that you will be helped and that they find out what is causing your pain very soon.xx

My ESR was 34, CRP 17.5. I was 61. 10 mg prednisone got rid of most maybe 70% of my pains in about 12 hours, but 20 mg made me even better. After 7 months and 3 successful trials of 10 mg prednisone, fortunately I was diagnosed with PMR. But I knew I had it at the beginning. They put me through 7 months of hell, and now I’m still having trouble continuing treatment. These doctors in my area just hate using prednisone, even at as low a dose as 6 mg. It’s a constant struggle to keep them from forcing a taper while I still need prednisone. Like you, I did not feel joint pain, mine was more in the muscles and tendons. Also, can’t they see if you have arthritis on x-ray?

Good luck getting treated! Maybe switch doctors if you are convinced you have PMR .

CanadianJo
CanadianJo in reply to Ciar

I think arthritis would have shown up on the X-ray. I will see how my next appointment goes in December. I am hoping for another trial with prednisone.

Odosmum
Odosmum in reply to CanadianJo

Arthritis does not always show on xrays - just the damage it causes. I have had some form of inflammatory arthritis for 25 years and as it does not attack my joints, on an x-ray they are better than most women my age.

Jane185
Jane185 in reply to Odosmum

My daughter has been diagnosed with psoriatic arthritis and they can see it on an MRI (so they know exactly where to put the cortisone injection)

Don't know if this will help at all. But two superb Canadian rheumatologists with international recognition are : Dr Robert Inman and Dr Dafna Gladman. Both are first class spondy consultants and also general rheumatologists, both are also very approachable. Singular reputations.

They might be outside your area, but check em out. Even a phone call, say, to Inman, might unearth the best consultant to see in your area. Frustrating position to be in. Take care.

CanadianJo
CanadianJo in reply to Ruadh

Thank you.

PMRCanada
PMRCanada in reply to Ruadh

Thank you for the names of the rheummys, I am in Southern, Ontario and appreciate having them as I am currently without a Rheumy but may need one in the future (my GP is currently overseeing my PMR after a bad experience with first Rheumy).

My Rhuemy told me I would feel better almost immediately after taking prednisolone, he was right, felt great the very next day but the day after and subsequent days I felt terrible, upset tummy, headache, aches and pains back. Rhuemy began to doubt I had PMR, but after tinkering with the times I took the tablets and split the dosage I gradually began to feel better but it's taken 6 months. It sounds to me that your Rhuemy didn't give you enough time on pred. x

Hi i was just about 60 when i woke up one am and could barely walk or bend my knees. my right side ankle was 2x size, my knee and my hand/wrist all on right side. i was showing houses to a girl (im a realtor) and she said oh boy hope you dont have what i have.. i was like ok what is that.. PMR anyway went to Drs 2days later and he suspected same thing did blood work for RA, PMR and rocky mountain spotted fever (tick) all came back negative but CRP was 58 and sed i forget but he said at 58 no wonder i couldnt walk..

put me on 20mg pred and the next day was like heaven. anyway after being weaned off for 11mo my aches are back but not like they were but no swelling and my blood is good but yet my HIPS and lower back ache everyday.. and my hands and wrist and my upper arms very weak. i have had back issues for years but always my rightside now its mostly my left. i got 2x a week to be stretched and he focuses on quads, hip flexor etc. my Dr took alot of xrays all good but he is now sending me to a rheuy he is perplexed. my left side SI joint flares up and i ive been to a chiro he says it kinda gets a little out of place. but my personal trainer friend said makes sense if you have a inflamation disease that the area /joint get inflamed and causes you the pain.. and one day it just goes away. but i have to sit down to put on my pants or shoes, couldnt lift that leg when it was flared up, hard to turn in bed and every day i wake up with pain... for years i thought it was my bed but now im not so sure it isnt something elese.. ive been thru 3 beds temperpdic back to coil.. ugg all i know is when i was on pred it all went away and i felt like i was whole... best of luck to you.. and ill pray for the good days for you i have them once in awhile..

Welcome fellow Canadian!! Lots of great advice already shared. I can add to the mix that I was 55 when PMR symptoms emerged (Dec, 2017), and remained undiagnosed for 5 months. I had many of the same symptoms you experienced, and when I started 20mg of pred (May 1) the relief came about 36 hours later. My CRP was 27 and ESR slightly elevated prior to starting pred.

When I went to Rheumy for 3 appointments from June - Oct, she constantly questioned my PMR diagnosis due to my young age, and non-robust initial response to pred. She also put me on a textbook taper which was too fast and resulted in a flare. She also threatened Methotrexate at ALL of the appointments, yet refused to take fluid from my knee to rule out other autoimmune conditions she suspected.

I can’t speak to your possible spondy or dermatological conditions, but I will say having a Rheumy that listens and works with you is invaluable. Currently my GP is overseeing my PMR until such time I develop GCA symptoms or if I really have difficulty lowering pred on my own tapering schedule. Perhaps you could get a second opinion from another Rheumy?? Hoping you get the pred you need to deal with your symptoms, and that they are able to sort out your other health woes, We are here for you, so do keep us in the loop and feel free to post as need be. All the best.

When I was diagnosed initially (4yrs ago), my esr was only 18 and I was in agony. Now it hovers around 10 and I take enough pred for no pain. Currently 3.5 mg. I’ve never needed high doses of pred and my pain has never been bilateral. Bottom line, we are all different! And all have PMR!

Hi:

I was 52 when I was diagnosed with PMR and had very, very similar symptoms as you have. Do you find that you are especially bad in the morning and that you have to do a bit of rocking to get out of bed? There have been quite a few people in their 50s on this forum. However, unlike yourself, the 15mg of prednisone made a huge difference for me in a matter of hours...tha

My PMR subsided or went into remission after two years, but left me with various forms of bursitis in various joints and that is not uncommon for those with PMR. I am "waiting to see" over several years if the bursitis gets worse or goes away. My rheumatologist is concerned that the bursitis is actually not bursitis but rather the onset of psoriatic arthritis which is also difficult to diagnose. While I do have psoriasis, I am not yet convinced that I have psoriatic arthritis for various reasons and thus the wait. My point though, is that sadly its possible to have both PMR and psoriatic arthritis.

My concern for your situation is that your rheumatologist seems to be prescribing a lot of different meds AND playing around with your prednisone tapering in a way that is a bit concerning. I'd be tempted to bring my records to a second rheumatologist (preferably one who comes highly recommended) and get a second opinion. Also, others here have written about the importance for the long term of getting on an anti-inflammatory diet and I fully agree with them!

Best to you! Jenn

CanadianJo
CanadianJo in reply to Rosedail

Thanks Jenn. I am worse in the mornings and do a bit of “rocking” or gripping the side of the mattress to get out of bed. Then it’s baby steps to get moving with a bit of a waddle. It is great to hear from others in their 50’s, realizing I’m not alone. The support and knowledge on this forum is wonderful.

Rosedail
Rosedail in reply to CanadianJo

Sounds very familiar! I called the waddle my “cowboy” walk which wasn’t fair to cowboys as mine was so greatly exaggerated...especially upon getting out of bed or out of the car🙂. It took me over 3 months to get a physician to give me the right diagnosis and during that last month I had to hang on to the car and slowly shuffle sideways to get to the gas (petrol) tank...I could not walk standing straight up even after getting warmed up.

I just realized that tomorrow will be the 4th anniversary of getting my prednisone script as it was Election Day here in the states. I was then on prednisone for 2 years and probably should have taken a bit longer and been a bit more patient. While I’m not entirely “back to normal” things are a TON better! So just this morning I realized now is the time to up my aerobic exercise level...if I’ve healed enough to hike with friends for 6 miles in the Rocky Mountains for several days in a row on several occasions then I really can’t use my PMR/bursitis any more as an excuse not to up my efforts in the gym a bit on a regular basis.

But for you at the earlier stages, Please know that patience with your body will be critical to managing this disease ( or probably any autoimmune disease). My best advice is to work with a physician you feel is an excellent professional partner and have the patience and drive to find one. Slowly adapt to an anti inflammatory diet and supplements until you find what works best for you....but accept that there are ups and downs even when you think you re doing everything right! Think through your life and cut back where you can on “obligations” especially the most stressful. Explain to friends and family that you have a rare disease they have probably never heard of and that is invisible, but that is there none the less and that you will need to make changes in your life for several years and possibly longer. Get rest and once you feel better get gentle exercise and pace yourself...don’t try to “push through the pain” as you’ll just end up hurting your joints which are susceptible right now, or sending yourself into a flare up. Gradually add little rituals into your daily life that support you such as meditation, baths (although getting in and out is tough), sauna, light massage (touch or pressure can be difficult for a while) or, as Mark Benjamin did, antique shopping😊 On a practical level, adapt your clothes to those that best serve you...I am much pickier about comfort now even though I am much better. Find humor in the changes you will be making to your life but allow yourself to grieve once in a while. Consider getting a “high profile” toilet🤣 That sits up higher than the older model toilets. I did that by chance and it made my life significantly easier. And of course, get and give support in this group! Hang in there! Jenn

CanadianJo It took 6 months to get a referral to a rheumy, by which time ESR Was 120! I was started on 20mg pred, but after a month this was increased to 40 as the effect at lower dose was not very effective. This worked a treat! And then I had slowly to reduce the dose, which took five years altogether. There is a big problem with medics not looking holistically at what is going on. I chose to go gluten free, and later changed my diet completely to anti inflammatory. Be warned: AI conditions rarely come singly, I had a string of inflammatory conditions, ending up with atrial fibrillation. Diet I am sure is a significant issue. Good luck.

I also have arthritis and am not sure when it is PMR or arthritis causing my discomfort. I am down to 3mg pred. Some of my "tricks" when I am hurting are; I put on compression thigh highs, take arthritis strength Tylanol, ice my lower back, I have some elbow compression sleeves which I pull on to my thighs, heating pad on my thighs, and last but not least, lie on the couch and watch TV......

I'm 54...I've had PMR for two years.

At first, the prednisone didn't help right away either. Stopped taking it after a few weeks but then I couldn't raise my arms or roll out of bed. When I began it the second time, it worked immediately. I'm down to 2.5mg. I am a little achy but can live with it.

I've had rheumies that don't believe I have pmr either, but to hell with them. I don't like taking prednisone, but it's the only thing that works.

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