Hi all! I am not new to PMR and had it for 5 years already. My doctor said in the beginning it would be 2 years max! I am now on 4 mg of pred and it feels like I am having a flare again.
During all these years I tried to lower prednisone and my lowest point is 3. Never could get below this magic number. I tried methotrexate and meloxicam, but nothing works. And all these years I live with bearable pain constantly, unless on high doses.
Now in addition to PMR I developed carpal syndrome on both hands as well as tendonitis. My doctors (both reumi and orthopedic surgeon) think that all this stuff is a side effect for long exposure to prednisone. So now I live in tolerable pain from PMR + constant pain from carpal and tendonitis in both hands. Forget about quality of life!!! Every morning after a night of torture I get up with only desire not to get up at all
I am 59 now. When I had PMR at 54 I was slim and physically active and enjoyed my life. I had 14 year old then twins. And all these 5 years had a great toll an my relationship with my daughters. To have a mother who is in constant pain for 5 years is no fun. And now I feel as a total wreck most of the time.
They say that PMR is self-limiting disease with 4-6 years of lifespan. Has anyone got out of pred and is pain free?
Just wondering if there is a light at the end of the tunnel?
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Inika
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Oh Inika, I really do feel for you, this whole journey is a rough one, and you are so young. I have had PMR/LVV for just short of 4 years now and the ups and downs are challenging. I'm no expert but I think the ones who know will tell you that it's important to get the PMR under control through the correct dose of pred. It sounds as though you are not having sufficient to get things back on track. With doctors blaming pred for the carpel, they probably wouldn't be on board with that. I think the experts here will come along and help you with your dilemma soon. I really hope that your doctors see sense. Sending hugs.
Thank you for your support! Yes, I think I should stay much longer on my least comfortable dosage after this flare for much longer time . Wish you feel better too!
Halfway through 4.5 years of PMR, I too developed hand tendonitis. Six months after PMR ceased, my tendonitis symptoms are easing. This worked for me: ergonomictrends.com/thumb-p...
Yes you are correct about PMR, it is self limiting, and there are plenty who do get through it and out the other end, a few are still on here and hopefully will reading this and reply…but as you can imagine, many leave once disease goes into remission.
For some it does last longer, and they will respond as well, and as LemonZest11 says you do need to be right level to give you a pain free life, certainly on the PMR front.
Carpal tunnel is often mentioned so you may be able to find more posts if you use search facility.
Sorry you had had/are having such a rough time, but there are things that can be done to help…just hang in there, and you will get more advice
There are a lot of people who get out of the grip of PMR and are pred-free - but not many of them are here, they have headed into the sunset to get on with life. Something like 95% of patients who develop PMR do get off pred - but 2 years is cloud cuckoo land for most. I do know people who were off pred in 2 years but they are very few and far between, I am also on another very small forum, one that used to be active before this one was formed, and we continue to "meet" as a group of friends. There about 3/4 are off pred and have been for years. The other 5% may have PMR for much longer - especially we think if there was a delay in their diagnosis or they were badly managed, having frequent flares as a result. In terms of PMR, I have had it a very long time but have been pretty much pain-free with regard to PMR pain although I do have problems with myofascial pain syndrome and greater trochanteric pain syndrome - both of which can be associated with PMR although they can also occur in their own right.
I don't agree with your doctors- the carpal tunnel problem is almost certainly part of your PMR - which i would say is slightly under-treated hence your pain and inflammation developing to cause the carpal tunnel symptoms. Pred doesn't cause CT, it helps relieve the swelling that causes it. It isn't uncommon for it to appear as patients reduce the dose.
Thank you, PMRpro, I will definitely talk to my reumi soon and in the meantime will increase pred to 4 mg. But I try to stay below 5. I remember that one time you posted best way to stop flare, but could not find it. Is it 5 days on 10 mg and then back to your lowest comfortable dose? Or longer than 5 days?
Just replying as a daughter who’s mum developed PMR when I was the same age. Yes it did feel unfair. I had to get up and get myself off to school as my mums morning stiffness was bad (she wasn’t diagnosed until I had left home as she was “too young” for PMR being in her early 40s). Her mood was understandably low too. I didn’t understand how hard it was for her until I, now with a 14 year old have pretty much the same symptoms but am séropositive for RA. Like you I was healthy and active until it hit very suddenly. Your daughters will have had a more difficult time with a chronically ill mother, but it’s not the worst. I am sure that they know you do your best and love them, as they mature, I’m sure they will understand things more from your perspective.
Thank you for your support and understanding ! My girls are 20 now and in college. Of course, they understand and they are supportive most of the time 🙂. But during these years there were many moments when they were so angry and upset with me because of my limitations. Now they explain that they were angry because they felt desperate and unable to help me. And not getting any better now upsets me the most.
I can really relate to the emotions that your daughters have been through. It's like you get cross with yourself for not being able to fix it and cross with the ill person for causing you the pain of just having to watch helplessly (even though you know that they are not responsible). You get particularly upset when you feel that the person is doing anything that has the potential to make them more ill. My mum has always tended to try and do as much as she can, and more than an able bodied woman of her age would do, when she is well and not pace herself. I ended up resenting her for (as I saw it) not caring about the fact that she was making me and my siblings worried. Even now I still get those feelings - but it's all because I care about her. As I've got older I've realised that I'm not responsible for either her illness or what she does and it makes life a lot easier!
I think it's always very difficult for children to see their parents struggling with an illness, any illness, and no matter the age of the child.
Growing up they see their parents as always being there, always the same, and in some instances as invincible!
When a parent isn't the same person, then the child perhaps begin to question their own invincibility - although that may depend on age...or understandably feel resentful that the nurturing role has been reversed.
... and it's not always the child who you think will not be so affected by a parent's change or indeed loss, that it seems to hit hardest.
It sooooo true!!! I had the same with my mother! She was a wonderful woman! She always wanted to help and I often was very upset at her because her helping only made her feel worse later. And I was unable to help her. So, yes, I understand my daughters' feelings, but it saddens me anyway. Hope I can feel better to be a more fun mother as I used to be....
While I'm writing about my feelings around my mums illness due to the topic, if someone were to ask me about my childhood, that would only be a small factor. I'd talk about the adventures that we had (we were a crazy family), the care, the laughter, the good times. I expect that most children have to cope with something that impacts their childhood... at least our children are growing up with mothers that love them and do the best they can.
Oh dear. I am so sorry to hear about your pain-filled nights. I had bi-lateral carpel tunnel syndrome and can sympathise. It was like fire running up and down my arms. Ask your doctor for a nerve test. That will give a measurement that can't be disputed. I had lost sensation completely in my right hand before the release operation. There was no electrical response at all .My right hand was classed as " very severe" while my left was " moderately severe". I was given splints to wear at night. The operation was a terrific relief. Both hands done within 5 weeks, though six is more normal. This was back in 2011. No recurrence since. As for tendonitis, I have had various steroid injections over the years prior to PMR onset...shoulder, elbow, finger, which have all done the trick. I find now that I pay for exercise the next day with groaning muscles and weakness. It's a fine balance between exercising and overdoing it. I hope you get the help you need urgently and that this poorly phase becomes an almost forgotten blur..
Thank you for your support!!! I am so sorry that you have such pain too! As for your advice, I had already done nerve test for both hands. It showed wery little nerve damage. My orthopedic doctor said that surgery will not do a lot because the pain is most from tendonitis. I sleep in splints and wear different splints during the day. Will probably consider cortisone shots. But with tendonitis they work only for some time and then pain comes back. So I am still not sure what to do .
In my experience, as a younger woman, the cortisone shots fixed it and the pain did not come back. Once the initial inflammation has died down you may be able to use the muscles normally, gain strength gradually and have no more pain. Now however, as an older woman recovering from PMR I am living with sore tendons all the time. Its a generalised thing, not one specific area. I hope you are offered the best treatment for your case.
Our stories are similar. I have had pmr for 6 years now. I had a few big flares in the first 2 years going up and down on prednisolone between 30mg and down to 15mg. Then I started to see a Rheumatologist.
He listened to me and we began to work out what was pmr pain and what was other things. Took xrays and mri scans to do so. I had arthritis in both knees and shoulders and degenerative disc disease in my spine affecting some nerves.
So my Rhemy prescribed pain killers, lidocaine patches and prednisolone. I finally got down to 5mg of pred which he has kept me on for 18 months as a maintenance dose.
I have put on weight, had a few pred side effects but I haven't had another flare. I am staying on this dose for now as I have a lot of stuff going on. I look back with awe at the woman who could run her own business, manage the house, cook for dinner parties and occasionally go dancing. She is a distant memory.
I am glad if I can manage a walk around the supermarket these days. I had to give up my job (exercise therapist for older adults) and there's no way I could work now.
What I have managed to do is accept the various illnesses and learnt to manage them from day to day. I know I won't be the Superwoman that I was but I am still pretty awesome.
Accept the things you cannot change. Wise words from HH the Dalai Lama. Certainly in the face of pmr it rings true to me xxx
Thank you for your support! So, you stayed on 5 mg for 18 months to avoid flares? I should definitely be more insistent on the same with my doctor. I stayed on 4 for 3 months and he insisted on tapering to 3. Tried to be on 3.5 and then 3 for 3 months and have a flare again. Probably need to be on 4 mg for a much longer period to sustain without flare.
Hello. Yes I can resonate with you on many things. I have been on Pred 4.5 years. My GP thinks I no longer have PMR but I beg to differ. It is the only thing that takes the pain away and gives quality of life. She is in a rush to get me off. I have got as low as 1.5 in recent months but just that .5 from 2 gives me a flare. I am trying to calm down a flare at the moment on3mg, but like you the nights and mornings are painful. This am wasn’t too bad so 3 seems to be working. Will taper again using DL taper.
Yes again, relationships with family are sometimes difficult because it has been long term and they forget I am limited now and older, 73.
Feel abandoned by the doctors and don’t like bothering them.
The best thing I have found is this form and all the help and support it gives.
Hope you start feeling better soon and don’t give up😊
My GP doesn't care if I still have PMR or not BUT he issues repeat prescriptions with gay abandon and I am grateful for that. Always a bright side ...........
Thank you for your support! Sorry to say, but your GP sucks! How can she decide if your PMR is gone if you still feel it?! I agree with you that doctors ofter try to rush us to lower the dose and that resulted in a flare. I had it so many times! I guess I should be more insistent when I feel that I need more time! Wish you get better too!
Sorry to hear your 'journey' (hate that word) has been so awful. PMR arrived in 2015 but diagnosed in 2016. I think my PMR is gone but I am on 1/2 mg Pred still. Of course, as I have aged other things have joined me - osteo arthristis in my feet and hands and an acoustic neuroma. My family is used to my complaints 'my feet hurt' but luckily I can still work and get on with it. This forum really helps for moaning, sympathy and treatment. I tune in daily. I hope things ease off. x
Thank you for your understanding! My family is used to my complains too (unfortunately) . And I try to maintain positive outlook when I can. But lately I really do not feel ok. I will certainly cope with this flare as well. Just got tired of this ups and downs on pred. Still try to believe I will get better🙂
Managing this condition (or these 2 conditions) is incredibly difficult whilst bringing up a family, running a home, working, etc, etc… Well, it is incredibly difficult, full stop!! My daughters veer from understanding and sympathetic to thoughtless and bemused, and even angry and resentful on some occasions. But that’s teenage girls for you! Trying to explain how you feel, your symptoms or the disease(s) itself is not easy to intelligent, supposedly informed adults - even those who are medically trained and are meant to be supporting you - so I gave up trying to do that to my teenage girls and keep it short and (not so) sweet. “I’m having a bad day, but let’s just crack on…” is a stock answer to them on many days. Your “tolerable pain” sounds intolerable. Could you consider raising your dose a little to make life more bearable? As you are under the magical 5mg dose that some experts now see as a possible maintenance dose that could be settled indefinitely if necessary, is there a possibility of sitting at 5mg for a good while? I am sure those more knowledgeable and experienced on this forum will help and guide you with their wonderful and kind expertise.
Thankfully my incredible Rheumy is adamant that it “only lasts 2-3 years” is a total myth. She, along with PMRGCAuk, is trying to get that message across nationally to her medical colleagues as well as her patients and their families. The sooner that myth is banished to the history books the better, along with the classic “nobody gets PMR under 60yrs old” and “it is only PMR if you have shoulder/arm AND hip problems”… etc etc
Oh! Totally what I had with my daughters! They understand and they felt compassion and help me, but ii is not fun to have a mother who is in pain most of the time ... As for reumi- you are so lucky to have a good one!! As for mine, he is very eager to lower pred and because of his rush I had many flares. So I guess after I get over this one, I will stay on comfortable does much longer! Wish you get better too!
Hi InikaSorry to hear about your struggles. I too have had PMR for 6 years and GP told me I’ll probably be on pred for about 18 months 😂. If only I knew then what I know now. !!
I was 64 years then.
I luckily found this site not long after diagnosis and I am so grateful. Mr GP now let’s me decide what dose of pred. as she is aware I know my own body now, but I had to push for this at first.
I’ve had a few flares over the years and at one point I couldn’t even go to my yoga class for six months, as I couldn’t get up off the floor as the pain was so bad.
But that’s all in the past now. I’ve never stopped working, I run a boarding Cattery, so quite physical work but I have helpers.
I am currently on 1mg of pred and have been on that since January, I’m just starting to reduce to 1/2 pred. But going really slow.
I could not of done it without this site as I gave me the confidence to question the reduction with my GP. Who has in fact been very supportive of me.I do have some issues with osteoarthritis now but my GP says it’s wear and tear. !
I would add that in my experience it’s best to listen to your body and take sufficient pred. To relieve the pain rather than trying to push through it.
Hi I am pretty much the same-as you I have had PNR for 4 years at age 55 so am 59 now lots of episodes of pain all different bursitis in hips , had both shoulders injected for acute soreness , have knee effusion at monent MRI didn’t show much cartilage damage so about to have steroid / hyaluronic acid injection am on 4 mg
Keep onwards and upwards hopefully it will burn itself out !!
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