How does it feel when PMR goes into remission?

I am currently taking 16 mgs of Prednisolone and some Tramadol each day depending on the pain and flu type symptoms. I usually wake up feeling awful but improve as I get moving. My sleep is very disturbed and I have to get up to go to the loo a lot. I often need to nap in the day. However and amazingly just lately I have experienced pockets of time when I feel great. Pain free, energetic, happy, well etc. I trawl back over the day to try to find out the formula for feeling so good. There doesn't really seem to be a formula that I can replicate. Is it possible that the sun is coming out from behind the clouds? These lovely little respites don't last very long but they give me hope. I guess I've had this condition, undiagnosed for a few years. I've been treated since March and have responded well to Prednisolone. I would like to hear about other people's experience of remission. I have also found that walking on the flat can change the pain into heat.

18 Replies

  • At this stage it is still drug-induced remission - just because the symptoms are being managed better or your blood tests are "normal" doesn't mean the PMR has gone away. It means the pred is managing the inflammation well enough to let you feel more like yourself.

    Careful though - you say the respites don't last long: it may be because when you are feeling good you do more, too much, and that upsets your muscles again. They remain intolerant of acute exercise which is why pacing is so important - you have to know your limits and stick to them. With time you will be able to do more, much more probably, but it tends not to happen quickly. Most people feel it takes a year to get to feel really "sorted out" - and if you overdo it, you will set yourself back. It really is worth playing "Precious Princess" as one of my friends with PMR says!

  • Hi Jane, I think a lot of us have good days and bad days, the good days are wonderful. Why are you taking Tramadol? It does not help the PMR, but you may have it for something else. Also did your doctor give you vit D and calcium, plus organise a Dexascan for you?

    Remember you have an illness and things have changed so take it easy and relax.

  • Is a Dexascan a bone scan? I bought my own calcium and vit. D. I must go back to it. I blamed it for a very painful upset stomach in the early days and it was probably Pred. Side effects.

  • Yes a Dexascan is a bone density scan, it is a good idea to have one when starting on pred as one of the side effects of pred can be osteoporosis. I used to buy my vit D and calcium but was tested and found to be vit D deficient. I was then given a prescription by my doctor for a higher dose than was available over the counter. I have not had any side effects, the stomach problems sound more like pred. I have coated tablets which help.

  • Yes in that case I have had a bone scan and was found to have an above average bone density for my age. I therefore refused the osteoporosis medication the GP wanted to prescribe, because I was already confused and overwhelmed by side effects and a complicated symptom picture. Thanks for taking the trouble to advise me. This website is a lifeline, thanks for being part of it.

  • I had a contra temp with my GP over bone density drugs and I thought I had won. The next time I spoke to him he brought it up again. My Dexascan had said I had a 0.2% of getting a hip fracture in ten years. That did not seem to deter him though. I notice on my notes he has put REFUSED bisphophonates!

  • i was lucky there - one GP handed it out as automatic, I took 4 but did my research and decided I didn't want to take it any more, especially since my dexascan was fine. The GP I saw agreed with my assessment of the situation - saying it was beginning to be realised that perhaps it wasn't the wonder-drug that it had been claimed, and that was 7 years ago. It may well say "refused" but I don't really care. I didn't take them, after about 4 years my bone density was near enough the same (can't compare, different machines) - and no-one here mentions them.

  • I too take Tramadol for my PMR along with the Pred. My DR has no problem with me taking the Tramadol. I have been told many times that Tramadol doesn't help the PMR. That may be true but I have found that it lessens the pain from the degenerative discs in my back. In that sense it does help me because I don't get the pains confused (if that makes sense). I can tell if the Pred is working better if I don't have to worry about the other pains I have in my body. I think that the people with PMR that take Tramadol would agree with me about this. I also have RLS and take Gabapentin for that and that helps separate the PMR from the RLS. Just my 2 cents. If the Tramadol is offered by your DR you might try it and see if it helps at all. If not all you have to do is stop taking it. Thanks, jctx06hd in Texas (USA).

  • Thanks for your responses. I was prescribed Tramodol for the joint pain which seems to "pop" from knees to neck to legs to shoulders to lower back. There are also headaches. I feel as if Tramodol helps these symptoms. Am I deluding myself?

    Thanks for the common sense about remission too. That little high was followed by 2 hours sleep, on several mattresses on top of a pea, (the princess and the pea ).

  • Ahhh - Precious Princess is a far better look...

  • Hi Sheffieldjane,

    It sounds like the knees neck legs to shoulders etc is PMR. I went one year with no diagnosis and it was all of the above.

    My concern on you using Tramodol is the headaches might be related to Giant Cell Arteritis GCA which I developed months after starting the Prednisone.

    Big worry re: GCA is the blindness.

    I never found any pain meds to help relieve any of the pains an found out they are not a good idea. So if you can not do the Tramodol for time and see if the headache gets better or worse. It could simply be a sinus headache.

    GCA will have other symptoms you won't be able to deny like jaw pain and scalp tenderness.

    Good luck and remember I am new here and simply sharing what I know from personal experience.

    This forum has truly changed my outlook at all of this. It might not be fun but it is a peaceful feeling to know others know what you are talking about.

  • Just a note - GCA doesn't always come accompanied by all of the so-called "typical" symptoms. All of them are mentioned as the presenting symptoms in about a quarter or less of patients - though they tend to be present in more like 40%, still well under half. Many never have jaw problems or scalp tenderness, perhaps unfortunately.

  • I'd second that, I have GCA, since 2013 and my symptoms where simply endless head-aches, which started as minor and then progressively became quite debilitating (something I never used to have), no scalp tenderness, no jaw problems and even the stand-in rheumatologist sent me away dismisssing it. I hadn't even heard of GCA then, but on his advice stopped taking paracetamol (which over long term use can induce head=aches, this I do know) - Iasted just over 24hrs, back to GP, who then was so concerned she called the hospital and I was urgently put on 40mg of pred, and then emergency appointment with them again. If I have a flare i do get ear ache, which can be confusing as I never quite know if it is ear ache because of the GCA or an infection. PS I was already on pred as I have PMR since 2010. The pred dose of 40mg quickly kicked in, no more head aches, which was a blessing. Thankfully my eye sight is fine.

  • This didn't register with me the first time I read it - is it "just" joint pain or are they swollen and hot too? Not that that is so important - but joint pain that flits around from joint to joint and doesn't necessarily last long can be a sign of migratory arthritis which accompanies a few autoimmune diseases. It is something to mention to a rheumatologist - if you ever manage to get to see one! And actually - a reason to give to your GP for being referred...

  • Yes GCA is my big fear, the sudden blindness. My Grandma went blind with Multiple Sclerosis and I've feared it since then, even though she was amazing, never complained and gossiped merrily until the day she died. When I asked my GP about GCA he said the treatment is the same as you're on now ( Pred) but I know the doses are much higher.the only diagnostic is the biopsy he said. I do have a tender scalp. I pay extra to have a conditioning treatment at the hairdressers just so that she'll massage my head. I put my headaches down to moderate Cervical Spodylosis and intensive computer work in the past.

    I also experienced jaw pain last year and was tested for heart related conditions. I pour all this out to the GP to no avail. I hope he knows what he's doing! Whatever I tell him doesn't seem to add up to GCA in his mind. Thanks for taking the trouble to write. Tramadol doesn't kill all the pain but it kind of let's you float above it. I expect this is slippery slope territory and I'd better desist. I did ask the same G P about addiction and he said " not the way you take it". Hmmm!

  • If it is any consolation, GCA does offer a few warnings in the vast majority of cases (although there is a condition called occult GCA which has NO such forerunners). If you have any visual symptoms at all then don't waste time with the GP who is obviously not particularly interested - go straight to A&E (preferably one in a bigger hospital) and explain your history. The visual symptoms are very varied - from dark patches through feeling as if a curtain is across your eye to effects a bit like interference on the TV. There is nothing "typical". However, for the vast majority of patients there is about a week's warning with GCA so don't hang around, day or night, weekends as well, A&E is there. Take someone with you and don't let a triage nurse or junior doctor put you off being seen by an A&E consultant. GCA is rare and many have never seen it.

    Your GP isn't entirely accurate about biopsy being the only diagnostic - clinical diagnosis is VERY important (that's symptoms and history), more so than the biopsy as it is only positive in less than half of cases, but there is also a form of ultrasound that is just as good. They can do it in Leeds, not sure if anyone at Sheffield can, but it isn't available everywhere as someone has to have been trained to do it and most of them participated in the TABUL study that showed it is acceptable as a substitute.

  • That's all really helpful thanks! Ultra sound certainly appeals more as a test. I expect if it was positive the upshot would be high dose Prednisolone?

    We really shouldn't have to fight like this. It's like pushing an elephant up a steep hill sigh!

  • If it were positive, almost certainly - but it would be necessary. But good rheumies will also make a diagnosis on the basis of other things. GPs are not experts and have rarely cared for patients with GCA because it is so rare.

    But yes, you're right - especially when that elephant has his toes dug in...

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