I was diagnosed with GCA in August of 2014 and I feel that I'm now coming to the end of that particular journey. My prednisolone is down to 1mg which I can hopefully reduce to 0mg by May. It hasn't been a smooth journey and my body (and mind) feels near destroyed!
I've had pains in my knees/thighs and upper arms for the past year or so but not unbearable. during my last visit with the rheumatologist he seemed to think this was fibromyalgia and both he and I didn't want to increase my predinisolone. However over the past couple of months the pain, especially in my upper arms has increased to be nearly unbearable and no type of pain relief so far seems to help. (Ibuprofen gel, codeine, amitriptyline, nortriptyline). I haven't had my CRP/ESR levels checked but I'm aware that these may not be elevated with PMR anyway. I really, really don't want to increase the pred. I guess I hoping some one has had similar experience and is managing the pain without prednisolone.
What do you think?
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AndyTheMac
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Oh AndyTheMac! How absolutely gutting for you to reach the finish line and feel utterly destroyed in both body and mind. This sounds horribly like PMR and as you know, the only drug that gives blessed relief is Prednisalone. Fibromyalgia Pah!
I guarantee that if you took 15 mgs of Pred your pain would settle within days. I would want to do that both as an experiment and to prevent myself from becoming more disabled. There is such a thing as quality of life too you know. It doesn’t sound like you are enjoying much of that at present.
Fibromyalgia will not respond to Prednisalone. It’s best to know.
Welcome, commiserations, hugs and tell us what happens. 🙁
If it is PMR surfacing now you have reduced the pred to too low a dose to manage the inflammation - and that tends to happen in up to probably half of patients who had an original diagnosis of GCA - then you almost certainly will need more pred. The dose of pred used for GCA will hide PMR until you get to a low dose and then the inflammation will build up until you have symptoms. Keep reducing pred - and nothing will remove the inflammation until the cause of the PMR symptoms goes into remission.
You can try managing it without trying increasing the pred - but if it IS PMR then you face the prospect of increasing pain, stiffness and disability. Your choice I suppose - but it would not be my choice. I had 5 years of PMR with no pred - not out of choice but it is no fun I assure you!
make you any less against pred for a bit longer? You may be fine on 5mg or less - well under the amount your body makes in the form of cortisol daily anyway.
But what beats me is: why do doctors jump for the the far less likely option of fibromyalgia in cases like this? Trying a few days of higher dose pred, which you can immediately stop again if you want, would probably tell you if it is PMR - it responds to pred. Fibro does not. Ever.
Andy, if it were me with those symptoms, I would be increasing that steroid dose back up to 5mg to see if it gives you relief. If it does, you will have your answer. At the same time, if you are someone who had raised markers of inflammation at the outset, then perhaps get those ESR/CRP tests done as well. I know how disappointing it is to have to do this when you have reached 1mg but, if that is what is needed, then 5mg now may save you from having to go to a much higher dose to get control if the inflammation runs away with itself. That's what happened with me at the 3mg dose when I refused to pay attention to the returning niggles at 5mg. I had to go to 10mg and once back at 5mg my rheumy kept me there for many months. Any inflammation left untreated can do far more harm than any small dose around 5mg will do, plus you will have relief from your pain.
Celtic if you have read my posts you know I was at 6.5 and my cortisol level at one. The pain in my body is horrendous Along with the extreme muscle weakness. In 2014 PMR became GCA.I’m not sure exactly what it is but I did go yesterday from 6.5 mg to 8 mg thinking this may be the adrenals. This pain could be several things the results of steroid use for seven years, adrenal insufficiency, my arthritis which I inherited and probably masked by the steroids. The Actemra Has kept my blood numbers very low. The big issue is the muscle pain and fatigue. I am going for physical therapy and using the tens machine a lot. I just grew a bone spur between two toes and that has done a number on my walking. ( have lots of bone spurs on my feet )I had been using a walker anyway but this is murder. Added to my bad knees and shoulder the toe is really the biggest problem. How can one get strong if standing up is a big issue. I have to get to an orthopedic surgeon. It’s already been injected and I have some thingamajigs on my toes and under my foot. What are your thoughts about the adrenals and 8 mg of prednisone from 6.5. And the pain? Thank you Marilyn
Marilyn, it does sound as though you have a lot going on at the moment, not least that horrid foot problem. Anything wrong in the feet can be so debilitating - I get callouses on the soles of my feet and inflammation on the pads of the toes probably due to thinning skin and not enough flesh - a problem that I feel sure is a left-over from my PMR/GCA/steroid days. Once your bone spurs have been treated, you will at least hopefully be able to tick one of your problems off the list.
I haven’t got any experience with Actemra so am unable to offer any advice except to ask whether your fatigue worsened after starting this medication? It is known that both the inflammation of PMR and Pred can cause fatigue - it’s most likely that Actemra could do the same in some patients.
Did you have great difficulty in reducing Pred, hence being put on Actemra? At which previous steroid dose did you feel at your best? If you are in so much pain, then obviously your medication is at too low a dose, and, if it were me, I would be upping the Pred to 10mgs for a few days to see if both the pain and the fatigue improved. If it does, then it does point to your adrenals not being ready and able to cope at the lower doses.
At the same time, try sticking to a diet of anti-inflammatory foods and avoiding those known to be pro-inflammatory.
I assume you are taking a Vit D3 supplement - any deficiency can lead to body pain not dissimilar to that of PMR, as can a deficiency of B12, so a test to have if you haven’t already done so.
My vitamin B 12 is good so is D3. I did have difficulty producing hence the Actemra. It works really well and I did feel very good. Getting down to the lower numbers in steroids is where the problems got worse. Always had muscle issues and fatigue. It sounds like I should be going up to 10. Just to see if things get better.
As I said, Marilyn, if it were me I would start my search for an answer by increasing the steroid dose up to 10mg for a few days. If that doesn’t work, your doctors need to go back to the drawing board. I really feel for you and I do hope the trial at 10mg will work so that you can get back to a better quality of life.
I did go to 10 with my New Jersey rheumatologist OK. I am praying that this is the answer because the alternative is not good I did go to 10 with my New Jersey rheumatologist OK. I am praying that this is the answer because the alternative it’s not good. How many days do you think I should know if this is an adrenal problems. I know everyone is different but Just an educated guess please.
I’m hoping for your sake that you may be lucky enough to have an almost immediate improvement in your worse pain but you should definitely know within a few days to a week. Good luck!
Been tested for everything. Always have muscle issues and fatigue. But also always have arthritis pain and joint pain. This is special I am losing the use Of many parts of my body and it’s scary
Hi Andy, listen to the others and up your dose a little, you may need to do this for just a short time you could find. There are lots of things I really don’t want to do but some of them pay off in the end!
Compared to the dosage you probably took for GCA taking 5mg is nothing and is under the amount you naturally produce. There is no way I would keep reducing if still getting symptoms like you describe. Get it under control now and you may save yourself from having to do full PMR dose and having to reduce again from 15mg plus. You have tried all the meds that would help fibro pain so that's clear and if pred does that totally confirms your current position. Good luck!
I was down to 6.5 and also feeling I was near the end but got the same pains and discovered through a cortisol Test that my level was at one. This to me means the pain is because the adrenal insufficiency. However it could also be iamb very arthritic and the prednisones has kept it at bay. It could be the prednisones created the pain by destroying muscle tissue and bones. I am also on Actemra which has kept my numbers very low And very normal. Before this Actemra I had a hard time controlling the blood numbers. So it really could be anyone of those things. I think you should have your adrenals checked first off. See if that’s the answer you might have to go up on the steroid temporarily. I don’t know. I do know the muscle pain is seriously horrendous. Good luck to you try one thing at a time.
If you look at my case you will see that I was originally diagnosed with Fybromyalgia, then it was changed by the Rheumatologist at the start in 2012 to PMR. Even my doctor originally said Fybromyalgia. Mine started with bad pains in my legs and seamed to travel up my body over the next couple of weeks to my lower back, shoulders and arms. Very strong debilitating pains meaning I could hardly get out of bed, climb stairs, get up from the settee, or get out of the bath.
I responded immediately to 15 mgs of Prednisolone, so that confirmed that it was PMR. I still feel it very confusing to really know what the difference is between Fybro & PMR (other than the steroids just act on PMR) when I had pains just about everywhere with it.
There are some very knowledgeable people on the site (much more knowledgeable than me) who can give you some good advice.
We sound similar bribaz except I've had fibro for 21 years and now I've added PMR to it last fall. It sounds like we are experiencing the same upper and lower body which is not as common. Lots of very helpful people on this form.
PMR is an inflammatory disorder - which is why pred works by combatting the inflammation Fibro is a problem with pain perception - no inflammation at all.
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