I have had PMR for 10 years. I am on 5 mg of Prednisone. I haven't ever gone into complete remission. My symptoms now are classic- hip and shoulder pain with fatigue. I am taking low dose hydrocodone. I am depressed and frustrated because I never feel better. I have also just been diagnosed with colitis - with no treatment as of yet. Will see gastro this week.
What works to keep you moving and keep your spirits up? I am a doer -not a sitter - and so I probably over do things and make the soreness worse.
Is anyone on anything other than steroids? Has it been helpfu?
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Judyroo
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I’m certainly not surprised that you’re fed up and frustrated after 10 years of PMR! There are some people on here in a similar position to you who will, I am sure, be able to offer you good advice 😊
I am a comparative newcomer myself, having been diagnosed in March this year. The first thing that strikes me about your post is that you are on 5mg prednisone, but it’s not controlling your pain. So…..maybe you need a higher dose? Or you are doing too much, more than your underlying conditions will allow? You say you are a doer not a sitter, so maybe it’s partly that? We all have to find the balance of what we can and can’t do, which varies over time.
Also, I wonder how recently your PMR was medically reviewed? If prednisone doesn’t control the pain, maybe the possibility of other conditions could be investigated (such as, maybe, a form of arthritis….just an idea). Even if it definitely does turn out to be PMR, a medical review might come up with another medication that may help, or a different dosage of prednisone.
Really there are loads of things for you to consider. Have you seen our FAQs page? See to the right of this page. There’s a whole wealth of ideas there. I see you’re in the US so you might have time to take a look before we sleepy UK, European and worldwide posters wake up in a few hours….😊
You’ll get more replies soon, I’m sure. In the meantime, welcome again and take care 😊 You’re in the right place for people who understand and can help.
Nextoneplease x
Morning from England. sorry to read that you're suffering. In the 10 yrs you've had PMR what has been your tapering regime ? I've had PMR/GCA since 2019. I'm using the 'Dead Slow and nearly Stop Method...so far it seems to be working. If you're trying to come off too quickly you will run into problems. I was a little impatient myself and the pain returned slightly, but not as bad as yours seems. No legs or hip pain for me, but arms and shoulders, and slight tender head due to GCA.....that is what I fear most !! Try and pace yourself.
I have had PMR symptoms for some 16 years now - it took some months to go from stiff shoulders to full-on PMR and t has improved a couple of times but I have had proper relapses 2 or 3 times over that period - by that I mean a return of symptoms that was due to increased disease activity rather than over-shooting the dose I need. I refuse to compromise on dose and take what I need to be pretty much pain-free and not disabled - and luckily I have doctrors who also consider QOL is the primary consideration. I'm lucky in that I don't really have severe pred effects, I need to lose weight but I am not Cushingoid and lost a lot of weight by cutting carbs, That also keeps steroid induced diabetes at bay and seems to help the PMR too,
You need to consider a bit more pred - and discuss it with your doctors. Even 1mg may be the difference between a low level of misery and feeling pretty good and less risky than other pain killers in the longrun - which don't usually help anyway. There are things I can't manage anymore but I probably wouldn't be doing them at my age anyway - but i don;t fight pain constantly
I'm due to try Methotrexate injections one a week , not just as a steriod spairer but to treat an arthritic condition i have, got a cortisol test tomorrow to find out if my adrenal glands are up to stopping pred, i so hope my adrenal function is normal 6.5 years on pred never managed to stay at 2.5mg or below. think i am coming to a turning point in this immune disease minefield. i just hope it's for the better, staying positive hope you get a good result with the gastro.
What works to keep you moving and keep your spirits up? I am a doer -not a sitter - and so I probably over do things and make the soreness worse.Well, I'm not sure you can keep moving in the way you would like if the disease - and treatment - dictate otherwise. If you find the secret, let me know!
It seems to me form reading a good few posts that most of the people on this forum were doers. Maybe that's why they are here, because it is so difficult to come to terms with. There are, however, things you can do while sitting that can take your mind off it and make you feel more positive. Also, communicating with other people, and this site is great for that, because you know everyone understands. Probably the most important thing is not to give up hope.
As to the other medications, I have been on MTS for 4 months along with pred, but I can't say I have noticed any great benefit!
So sorry for your pain and depression. I have had my ups and downs over the last 6 years. I agree with others that perhaps you need to increase your prednisone dosage. Be careful with even a low dosage hydrocodone as opioids may cause depression. I’m awaiting hip replacement surgery and was on low dose for pain control and had to get off of them due to the depression it caused. This PMR is quite the humbling journey! All the best in yours.
Hi Judyroo. I've been at this for over 7 years and have never been below 10 mg. Like PMRpro I decided a few years ago to take what I need to keep things under control to ensure the best quality of life (QOL) possible. A flare caused by a mild case of covid last February required that I boost preds back to 15 mg in mid-March. I'm now crawling back down again from 15 mg at .5 mg at a time. Yesterday, was the first day at 12.5 on the DSNS reduction plan.
I do have plenty of aches and pains, mainly caused by osteoarthritis in shoulders, knees, and back. I do water exercises 2 or three times a week and walk for 30 minutes on occasion. Every so often I do too much and end up with delayed onset muscle pain, which causes me to stop exercise until things settle down. If things don't settle down and get worse I accept it might be a flare and up the preds for a few days. I also get hip bursitis once in a while and have been successful in dealing with that with rest, icing and one or two hits of high dose ibuprofen.
About 3 years ago I was diagnosed with celiac disease and a month ago with microscopic colitis. I reluctantly started on budesonide (another type of steroid) for the colitis and have seen a reduction of the colitis symptoms. Hopefully, my relationship with budesonide will be short and it will lead to a remission of the colitis.
In your shoes, I would up the prednisone to the extent needed to find relief.
If I ever successfully reach 5 mg I may just pop a bottle of bubbly and stay there for some time!
Judy, opiates like hydrocodone do not normally help PMR pain. They also influence the bowel by causing constipation. So maybe your colitis is really a bound up gut from hydrocodone. Has the cause of your pain then fully evaluated?
Hi Judyroo, I've had PMR for eight years and have suffered from depression during this time too. I do believe that the beginning of my troubles was perhaps caused by driving myself too hard and ignoring the warning signs that something had to give. Once diagnosed with PMR i refused to believe that such a thing could happen to me! I had by that point enjoyed extremely good health. I just took the drugs and carried on regardless. For me this has led to more pain and relapses than perhaps were necessary! I learnt to listen to my body and realise you can't fight PMR you have to manage it and with a lot of advice from here i am finally down to 1.5mg pred per day. I am also on antidepressants which, although prescribed for other reasons, are actually helping with the mental health issues I was suffering from everytime I tapered down. Also, like many other people had to keep myself occupied while having to rest, so my other hobbies like reading, crosswords, embroidery, knitting etc etc which I never found time for when I was rushing around have become very important to me. I hope some of this helps,Good luck
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