I was diagnosed a few weeks ago with PMR after being first told I had gout and then it was emotional. Pain in my neck and shoulders and exhaustion had been going on for about 9 months but I kept thinking I was sitting the wrong way at my computer or sleeping the wrong way so would take an over-the-counter sleeping aid at night along with some ibuprofen.
In late December I got on my knees to pick up something from under the couch and felt as though someone had stuck hot pokers behind my knees and the back of my thighs. I decided it was old age - I’m 70 - and would have to live with it by not kneeling. Then I woke up in agony one morning. I couldn’t lift my arms above my head to get dressed and the pain in my neck, shoulders, upper arms and behind my thighs was debilitating so I tried to make an appointment to see a doctor but because of the Christmas and New Year holidays couldn’t get an appointment until the first week in January. It was a rough Christmas and Bew Year.
The first doctor listened to me for 5 minutes, asks me if I drank red wine - which I did - and told me it was gout despite ordering no blood work or any other kind of test. I gave up wine but wasn’t feeling any better at almost 3 weeks later. That’s when I went to another doctor who told me it was emotional because of the death of my Mum who had lived with me for 34 years. He told me to start grief therapy. This is when I started thinking perhaps it was in my head and i was a hypochondriac. Had it not been for a friend telling me it sounded exactly like what he’d had 5 years ago, I would have continued to think it was my emotions causing my pain.
I finally found a great doctor who actually listened to me and told me the pain. was not in my head, said it sounded like PMR or another autoimmune disease and send me for blood work. He also sent me to a rheumatologist. The blood work came back showing high levels of inflammation and the rheumatologist put me on 10 mg of prednisone while she waited for the results of other tests she ordered to come through. Last week it was confirmed I don’t have lupus and it is PMR.
At that meeting she prescribed leflunomide. When I got home I googled it and made the decision I don’t want to take it. I know the risks of prednisone especially as I already have osteoporosis but I’m hoping I can mitigate those. When I started the prednisone I started a calcium supplement with vitamin D. I’ll also add vitamin K. I have given up alcohol completely as I’ve found that for me it doesn’t react well with prednisone. I’ve always been a relatively healthy eater - if I don’t see chocolate or sweets - but I’ve starting cooking with fresh ginger, curcumin and curry which I love anyway but never cooked with. I will also start Pilates using the reformer machine to strengthen my bones. I’ve read all of this can stop continued bone loss and, for some people, even reverse it. I don’t know how true that is but I’m certainly going to give it a try. I also walk between 2 or 3 miles every day with my little dog.
I planned on moving back to Scotland this year but my family in Glasgow have warned me to try to get my PMR under control first because of the problems with the NHS. So, I have decided to stay another year in Puerto Vallarta and fly back to Houston, where I lived for 30+ years, where I can see a doctor quickly. I had to be one an American citizen to allow my Mum to live with me full-time in Houston so I’m now entitled to Medicare which is almost free.
I am so grateful I found this group and to know I’m not alone. I have learned so much from all of your comments and thank you so much
One thing I hadn’t realized until I found this group is there is no cure for PMR. I thought it was just about using the prednisone for sometime, tapering off and it was gone. That has come as a bit of a shock.
Do any of you disagree with me about the leflunomide? Is there anything else I should/could be doing?
Thank you.
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emsscot
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Where in Scotland were you intending heading? I live in northern Italy and after my husband's death 16 months ago I have decided to remain here for the forseeable future. One daughter lives in Fife, the other in Yorkshire and frankly, neither can offer me the care I get here. Both of them work in the NHS and say I don't want to go back! I certainly won't get the Actemra I get here - after 13 years of high dose pred I am finally down to 7mg.
Is the 10mg working adequately? It is a low dose to start on but if it is enough - great, saves some of the tapering!
I’m sorry to hear about your husband It’s not easy being on your own no matter how many friends you have. It’s also not easy getting older when your friends are the same age and have their own physical problems
Actually, taking the 10 mg was like a miracle happening. I couldn't believe the pain disappeared in less than 5 days. Unfortunately, today it’s back in my neck and shoulders in probably pain level 5. I’m hoping it was caused by hunching for hours over my laptop yesterday whilst googling PMR to learn as much as I could about it.
I was born, raised and educated in Glasgow although I’ve been gone for about 46 years. I want to go back as I never had children and cannot think of anything worse than going into a care home in the US or Mexico. I understand, the UK is just as bad these days but I am very close to my cousin’s family. I don’t expect - or want, having been a caregiver to my Mum - them to look after me in any way but I know for sure with 4 of them there will always someone coming to visit at least once a week who’ll make sure I’m not been abused or ignored and left to vegetate. I must say I never gave it a thought until my mother died and I realized I didn’t have a “me”.
My cousin had been urging me to come back to family for years but since my diagnosis and the state of the NHS now, he thinks I should try to get my PMR under control, if possible, before I move back. Also, I believe I need to prove residence in the UK for 6 months before I’m eligible to use the NHS
No personal experience of leflunomide, but it does have its own issues -so probably best if you can manage without it. Maybe have a read through this for a bit more info -not as bad as it seems on first read
Thanks for replying. I read your post about PMR and thank you even more for writing. Being written from a patient’s perspective, it helped me realize how much I didn’t understand about PMR. My fault for sure as I’m pretty sure it was so overwhelming for me that I only listened to some of what the rheumatologist told me.
As I wrote to someone else today, today is the first day the pain has come back and it’s about a pain level in my neck and shoulders. I’m hoping it’s because I was hunched over my computer for hours yesterday trying to find out everything about PMR which is how I found this group. Reading many of the posts made me realize that while I like my rheumatologist and believe she’s good, there’s no one-size fits all treatment or dosage for PMR. It’s up to me to be proactive, change my lifestyle as much as possible (but only enough so that I can livd with it and keep it up) and try out various food, spices and supplements to help in any way possible.
This group had been a godsend to me and I thank everyone who participates in it for their help in my journey
Not your fault at all, like many [myself included] it is extremely overwhelming at the beginning especially if you’ve never come across the conditions before.
But you soon learn how to manage it - so long as you accept it is what it is and don’t pretend it won’t make any difference to your life at all. That’s when some struggle. It does change your life [temporarily] but doesn’t mean you can’t still enjoy life.
I refused to take leflunomide. It has its own side effects and you would still need to take the prednisone with it. . Its taken me 3 years but im down to 2,5 mg prednisone from 20mg at start.
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