PMR symptoms 95% reduced 21 months later - no pred

Bones, joints and muscles
1

I am posting this just to provide an update something hopeful for those suffering.  If you search my limited previous posts you can get some more background.

I developed PMR about 21 months ago at the age of 48.  I am a male living in Canada.  My GP suggested I might have PMR, but referred  rheumatologist refused to diagnose me with PMR due to my age, despite all other potential causes of my pain and stiffness being discounted through extensive testing.  He would not prescribe pred without that diagnosis - he did at one time prescribe a drug commonly use for nerve pain - even though I did not have fibro symptoms. 

Pain and stiffness was the worst for the first 8 months or so (could barely lift my legs off the floor when sitting, could not lay on my side, and could not get on the floor to play with my child).

Prior to PMR I was in excellent physical condition, and a regular attendee at a crossfit gym.  I will also add that I had experienced inflammation of the carotid artery that went away on its own over a week or so, a while prior to PMR symptoms. I can't help but think there is a link. My PMR first showed up as extremely stiff hamstrings, followed by stiffness and pain in the neck and shoulders.  It tended to change in severity over these locations over time.

I treated myself with 800mg of ibuprofen daily, which I would normally take at about 2:00 in the morning.  Many say ibuprofen has no effect, but I could not have gotten through those days as I did without it.  When I did not take ibuprofen, the stiffness was much worse, I would then take some and it would improve, so I know it worked for me.  On the other hand, acetominophen had no effect.  I was very mindful during this time of any potential stomach issues, and was extremely sensitive to any pain I thought could be related to GCA.

I began to improve slowly but steadily after about eight months and reduced ibuprofen gradually to 200mg per day.  About 4 or 5 mojths ago I switched to naproxen (220mg/day), and this worked quite well, maybe better than ibuprofen. 

I will add that in my own desperate search for natural cures I used mangosteen juice and pills, and pycnogenol, but I stopped taking those a month or so ago and don't feel any different, so I can't confirm thye an had any effect on symptoms. I also took about 1800mg high quality fishoil daily (only over the last 6 lmonths or so). 

My blood tests showed consistently lower levels of CRP as my pain and stiffness lessened.  If I recall, it was about 12-14 when I first felt symptoms, and was around 4 or so when I began to feel significantly better.

My last rheumy appt was about two months ago.  I told him I was feeling significantly better.  He basically stated that whatever the mysterious illness was, it solved itself, no more appts needed unless symptoms recurr.

I now have some pain and stiffness in upper hamstrings and occasonally in my shoulders, but shoulder flexifbility is no longer a problem - I can lift my arms over my head no problem, whereas in the beginning, not even close.  I do not normally take any ibuprofen or naproxen now. 

I am very hopeful my symptoms will go away completely as time goes on, and not return or get worse. I also wish everyone with this condition a speedy recovery. 

Thanks also to everyone who contributes to this blog.

B 

 

2

Glad to hear you're feeling much better.

Pre diagnosis of PMR my doctor prescribed Naproxen 500mg which I took regularly with no effect at all.   My CPR  and SED rates rose to their nineties I could hardly move, after months of this and sitting in A and E for a morning I was given Prednisone after only hours of taking it I could have swung from the chandelier.   I never want to go back to those days before ped.

 

3

congrats! nice to hear good news .

4

Well done!  It's great when we receive good news.

Of course, you were young for PMR, and MALE.  (Evidentally, being male makes a difference with PMR).

I have a friend who was 52 when her symptoms started, and almost to the day, 2 years later, she woke up pain free.  That was 10 years ago, and PMR has never returned.

Good luck for the future, but keep an eye on those symptoms.

 

5

Great to hear you are 'free' - well done.  You were on the young side which may have helped.  Nothing touched the PMR symptoms until the preds kicked in but I'm 74..

6

Great news for you.  Well done, life must be so much better for you.    

7

Thanks for the encouraging news.  It's always good to hear of people that have a PMR for a short time before going into remission.

I have a friend that was diagnosed with PMR in her 40's and started with 10 mg of pred and was off of it altogether in 12 months.  It has never returned, much of which she attributes to change in lifestyle and yoga.

I do think age has a lot to do with the recovery time.

hope you get back to cross fit soon😊

Diana🌸

 

8

I had PMR symptoms for about 6 years just using rub on anti-inflammator gels and I found them very efective, needing the tiniest amount to achieve a good relief without visiting my GP. It was only when I experienced temporal arteritis that I knew I needed prednisolone and asprin for that. I am experimenting with some supplements (of which there are two which have good reports online) and take glucosomine and chrondroitin and the fish oil. Even spiritual healing helps me perhaps through the destress route but when I am desperate, clutching at straws is the equivalent of what the doctor prescribes!

9

Hi B,My name is Pam I live in Edmonton AB Where are you? I started being stiff about 2 years ago - especially getting out of a car after an hour or so - then after only 20 minutes. I'm 63. In Dec, 2014 I realized my upper arms were sore and painful and I couldnit get out of bed, roll over , or comb my hair in AM. Hot shower and gel relived it...for awhile. Stiff hips came next, and pretty soon I realized - i can't bend down, put socks on do yoga. What the ???? Googled sore upper arms and stiff hips and up pops this PMR.... the symproms sure sounded like me. Like you and so many others, I have been healthy and actiive (played senior slow pitch until 2 years ago). I hated the idea of Prednisone, and explored alternatives - lots of supplements (fish oil, turmeric, acupunture) I could still walk thank goodness. NO IMPROVEMENT  for 3 months. Finally went to Dr. tests were all normal - she said you should be healthy! Duh!! I felt terrible - aches, pain, stiffness.. I had read about depression but so far felt emotionally OK - just soooo tired of feeling awful - and now a general malais settling over my body. Like so many on this post - this is a long letter to say LIFE WAS HARD I hadn't slep for more than an hour or 2 at night (before waking and needin a warm beanbag or more gel to relieve pain) - for 3 months. Unlike others, I am retired (although my 91 year old mom, who is a dear and is in relatively good shape - although she moves slow and needs her walker) lives with my husband and I. my husband has been most kind - and now, he has come down with the shingles!!

so - I told the Dr. I was redy to try Pred. She wanted to start me on 40mg?? I suggested 15. She agreed. Within 6 hours - I felt sooooo much better. It's 1 week in and I feel pretty normal....

Of course I worry about the tapering....

I am happy for you tho' 

May your good health continue.

 

10

Hi PAm,

I'm in Saskatoon. Thanks for the well wishes - I'm not 100% yet, but I get around without pain now for the most part.  It sounds like your symptoms showed up ver similarly to mine.  I remember prior to full on PMR that I would get a painful knot-like feeeling in my hamstrings when I was driving for mor than 45 minutes or so.

I'm glad the pred seems to be working.  I did not have the choice to go on pred, but if my pain would have lasted much longer I likley would have insisted my faily doc prescribe it since the Rheumatolofist wouldn't.  The doctors and rheumatologist around here seem pretty sure it lasts couple of years then goes away.  My family doctor told me he treats a number of people for it and that it generally is treated very successfuly with pred and goes away in a year or two.  That does not seem to be the case for may on this lboard, though we don't hear much for success stories, which is why I posted my update (fingers crossed it continues ot be a success story).

Best of Luck.

B

11

Hi mis,

I had some luck with myoflex and other creams as well.  Like the ibuprofen/naproxen, they allowed me to get through the day easier than without. 

12

German rheumatology textbooks say the average length of illness in PMR is about 5 years. US review articles I found in the early days of my research but which now seem to have disappeared behind paywalls said that about a quarter of patients are able to get off pred within 2 years but were at a higher risk of relapse. About half take up to 4 to 6 years to finish with pred and the remaining quarter are on low doses of pred for longer, some for life.

In the last 5 years of being involved with the 3 forums I would say that relflects what I see - and on one of the forums there are several people who are involved in the UK support charities who have recovered and are still present on the forum providing support and advice. Here there are so many new people that old-timers tend to disappear having reported they are off pred or on a very low dose. This forum was also re-vamped 3 years ago and was impossible to use for some time and people just faded away when they couldn't get onto the site easily. I'm in contact with them on the other site though.

For my part - I had had PMR mildly for 5 years before it became impossible to function almost overnight. I'm now into my 11th year, down to 4mg but the PMR is still there. And even if a given episode goes away in a couple of years, the illness does not. Once you have an autoimmune disorder it is very unusual for it to be "cured" - it goes into remission and can wake up again at any time. 

I suspect that the doctors who claim this 2 years figure are like a few I have met who have claimed if it lasts more than 2 years it isn't PMR "by definition". And patients who meet with that will go and look for a more sympathetic and caring doctor who doesn't stick everyone into the same class and that doctor is confirmed in their belief.

Added to that is the fact that having PMR and getting off pred in a couple of years probably means you had few problems - and by definition, the forums tend to be for people seeking answers to problems. 

Just one other comment - PMR is not "treated" with pred, it is "managed" with pred. The pred does nothing for the actual illness, the autoimmune part, it merely manages the symptoms. As long as the autoimmune disorder is active you will need some pred or you will have some pain and stiffness. That is the nature of the beast.

13

My own opinon is that he rheumatologists and cosc here are fo the most part out to lunch on PMR. Besides being off-base on the two year duration, he would not even consider a diagnosis for anyone younger than 50.  I argued that discussion boards revealed many outside his parameters, to no avail. 

With regard to treatment vs. management. Believe me, I've sought out enough info on PMR to understand there is no cure. 

14

Hello B

Thanks so much for your post and all the useful discussion it's prompted. At last after 18 months on the forum I've heard a pmr journey which actually mirrors my own almost exactly! It seemed my approach in using ibuprofen and aspirin in fact to manage the pain, stiffness and soreness was not possible for pmr but it worked for me. I too was diagnosed by my gp with pmr and had all the 'right' blood markers etc but the rheumy said 'no too young' (I was 51 at the time, and am female just for the record). So no pred and I didn't want it either. Great to hear you are so close to full recovery ... I've another 3 months to go before 21 months and am so much better than I was 6-8 months after the initial flare. Hope you keep really well

All the best to everyone too - thanks for all the info and advice - amazing given all the issues the rheumys seem to have with recognising that pmr symptoms are similar but different for everyone.

15

Perhaps more importantly, rheumatologists are cashing in on patients with Giant Cell Arteritis which is definitely not their speciality and their derogatory attitude towards it is responsible for the appallingly inaccurate information which abounds about GCA. Vasculitis sites are far more informative and competent than those where rheumatism and arthritis are the main topics and GCA is regarded as something that they are unsure about and are not interested in. Patients with GCA should definitely be seen by Vasculitis specialists because GCA is the most common form of vasculitie ie inflammation of the medium and large arteries in the body.