Aching painful joints

[Emmylou3]

Hello, I managed to wean myself off prednisolone at Easter, after a year on steroids. I still have to take Methotrexate. However, I have stiff and really painful joints, something I never suffered from prior to myositis diagnosis. My rheumatologist says I am getting older and the prednisone probably masked some osteoarthritis. I don't really buy this as, as I say, I was very fit and active and pain free prior to the illness. My inflammation markers have been normal for months. Any thoughts, please?? PS I have also developed tarsal tunnel syndrome. Coincidence or what? Longing to move around freely again. Best wishes to all. Sarah

[SheffieldJane]

Oh dear! It would be extremely unusual to be PMR free after one year. Methotrexate is an arthritis drug that has had a limited positive effect on PMR, in some people. Normal inflammatory markers do not necessarily mean that PMR is in remission.My osteoarthritis has worsened over the 5 years I have had PMR. It is especially noticeable in damp weather. I find that the pain feels quite different and is not necessarily bi-lateral. It is sometimes accompanied by a swollen knee for instance.

I realise that I am assuming that you have PMR. The only way to find out is to take say 5 mgs of Pred and see, if your Rheumatologist will agree. A certain amount of masking probably does go on, it is a tough call. Sorry, not much help I know. Does your pain feel like the beginning of PMR? Mine felt like a sick sort of pain that made reaching for things, getting in and out of a bath or chair difficult. I walked like a penguin.

Wrong track apparently. There is a Myositis Association. I found it by googling. They are having a Myositis awareness month currently. You may find more detailed and relevant help on their website, if you are sure of your diagnosis. Like our diseases it is difficult to diagnose but there is a specific blood test.

[PMRpro Ambassador]

From what you say, you were diagnosed with myositis rather than PMR? What were the symptoms and tests that made them say it was that rather than PMR? Did they do a CK (creatine kinase) level in blood? How old are you? Some information about you, age and medical history for example as well as country of residence, on your profile means we can provide more relevant answers.

Either way - myositis is an ongoing disorder, it usually requires management for life. If you did mean PMR - it lasts a lot longer than a year for most patients and I don't care what your rheumy thinks - methotrexate doesn't replace pred for PMR. It may get you to a somewhat lower dose of pred than without but that isn't guaranteed and almost everyone still needs some pred - sometimes only 1 or 2mg but no pred just doesn't work and within a few months the symptoms return.

[Emmylou3 in reply to PMRpro]

I was diagnosed with polymyositis following the discovery of a fairly large benign tumour (a thymoma) in A and E. They commented that it was possibly tumour driven polymyositis. The tumour was successfully removed 6 mths later, after the life threatening polymyositis was brought under control. I know I am lucky, the scans show no recurrence of the tumour. However, I now have this pretty constant joint pain, which is not attributed to polymyositis due to no evidence of the creatine kinase levels rising. They were extremely high in March 20 when it all started.

[Emmylou3 in reply to PMRpro]

Oh, I am 70, white Brit, and have always been really healthy until this last year

[Emmylou3 in reply to Emmylou3]

And thank you both for your responses. Much appreciated.

[PMRpro Ambassador in reply to Emmylou3]

It's why we're here - everyone gets a reponse of some sort, no-one is ignored.

[PMRpro Ambassador in reply to Emmylou3]

What an interesting journey. And no doubt whatever you went to A&E for, they were as surprised as anyone else at the tumour! Happens a lot in A&E - and I don't think they sign up for that sort of event.

After all that, I would think that PMR might well be something for them to think of - carpal tunnel syndrome isn't uncommon as part of PMR and PMR has a habit of being triggered by that sort of event. Though PMR doesn't really go for joints as such but does make them quite stiff because it does affect the soft tissues around the joints. I don't give much credence to the "must be OA" school of though - a senior rheumy tried to tell me I had OA causing the pain in hands and knee - no sign of it on imaging 13 years later so obviously she was wrong. But once they get it in their heads ...

[ChrisinNam in reply to PMRpro]

Senior Rheumy or not, they're all just human beings, aren't they? They're not above saying the wrong things at times, although probably some think they are.

[Pixix]

I’ve developed carpal tunnel syndrome and was told it was due to PMR. I ache a lot now I’m trying to reduce from 5mg but I’m not truly sure it’s because of that it could be the cold weather we are having or my fibromyalgia! Definitely struggling at lower levels and having to taper more slowly now. Hope this helps but don’t think it does, really!

[Emmylou3]

Thank you. I don't know why but the joint pains are better today. Perhaps the weather does contribute, it now being dry windy and sunny here. But when I was tapering I did have to pull back and do it in small reductions with a fortnight for each. Plus there were definite withdrawal symptoms when I finally stopped. But they didn't last more than a few days, unless my current pain is still part of that!

[ayoung]

My pain and stiffness seems very good as long as I stay on 5 Pred daiky and 100 mgs. of methotrexate per week. My balance when standing and walking is not steady at all. Have fallen several times. Right now am suffering from a concussion on my head due to falling on large rocks whil the wind blew me down. I often feel like I could fall forward on my face while trying to do things.

[PMRpro Ambassador in reply to ayoung]

I do hope you mean 10mg of methotrexate and not 100mg - the maximum weekly dose for rheumatology use is 20mg. More is very dangerous.

[composition]

I have been on this journey 2 1/2 years now and am down to 5 mg. prednisone. While I tried to do 4 then 5 then 4 for a month, I felt like everything hurt and was falling apart. Now I am on 5 mg again, and my markers were good throughout this trial period. My personal opinion is that darned prednisone does mask other issues, making you feel good especially when you get down to a lower amt and the puffiness and weight begin to disappear. I just turned 79and am very very active, but doggone! I am beginning to think I aged during the 2 1/2 years and now it is evident as I try to back down. I've even wondered if I've developed a psychological dependence on the prednisone. Does this make any sense at all? It's like sleeping beauty wakes up to find 2 1/2 years flew by, the natural aging process continued and now there you are!

[PMRpro Ambassador in reply to composition]

Do you not think that the pain is PMR symptoms surfacing as you get to too low a dose? Half of patients need pred for over 6 years - PMR isn't necessarily a short journey at all. You aren't reducing relentlessly to zero - you are tapering to find the lowest dose that gives the same result as the startigng dose did. Half of patients take 18 months to get to 5mg that can be sustained for 6 months.

[Liby57]

That is what my doctor said too. I have been taking Pred for almost a year now and am currently tapering from 1 mg to 0 fingers crossed 🤞I get there. . Prior to my PMR journey I was fit, exercised a lot, swimming, running, walking, Pilates and pain free. When the PMR monster invaded my body I suddenly couldn’t do anything and was in excruciating pain and cocktail of meds started. . The side affects of Pred were horrific. I tapered from 20mg to 9mg and that’s when a whole load of other symptoms hit,, hair loss, carpel tunnel, trapped Ulnar nerve symptoms, swollen hands, pins and needles and stiffness. I couldn’t grip a pen or hold a cup without pain. I had a steroid injection for carpel tunnel (big mistake), tendon and muscle pain in my arms and hands. I had to increase and reduce my Pred a couple of times then my doctor decided i had osteoarthritis, Ok I accept a degree of osteoarthritis at my age but I certainly it certainly didn’t cause me any pain and had never troubled me pre PMR onset. One of the side affects of Pred is possible osteoarthritis onset.. I was also taking lansaprozole which can also contribute to osteoarthritis. Despite this I am not convinced that the pains in my arms is osteoarthritis. I believe the pains in my arms and hands are the side affects of taking steroids and rather than it being osteoarthritis it is actually Tendonitis which can also result from taking Pred and is very painful at times. I don’t think it is PMR symptoms because it is only in my arms and 15mg of codeine or a paracetamol does give some relief. The pains are getting less and less as I reduce the Pred 🙏 it will continue to decrease. Tendonitis however can take months to heal.

cortisone-info.com/en/side-...

[PMRpro Ambassador in reply to Liby57]

It is steroid injections into joints that are associated with developing osteoarthritis - there is some thought that oral steroids may contribute to cartilage breakdown but is a slow process.

[Liby57 in reply to PMRpro]

I am taking Prednisolone, Common side effects of prednisone include:Bone thinning (osteoporosis)

Eye problems like glaucoma and cataracts.

High blood pressure.

Worsening diabetes.

Higher risk of infection.

Increased appetite and weight gain.

Mood swings.

Nervousness, restlessness

[Bcol in reply to Liby57]

I don't think there is any evidence that would show taking Pred causes OA. Osteoporosis yes. It may help mask some of the pain of OA, certainly does/did with mine.

[PMRpro Ambassador in reply to Liby57]

I don't understand why you think you need to list the side effects of pred - I have been taking it for 12 years too. And nothing you list there has anything to do with osteoarthritis which is what I was talking about. Osteoporosis is a totally different thing and pred can cause that - but not necessarily. Many of us have no deterioration in bone density due to pred.

[Liby57 in reply to PMRpro]

I don’t understand your reaction to me listing side affects, those listed are only a few of them. Yes osteoporosis is listed but it is also stated that Prednisone is a steroid used to treat inflammatory types of arthritis, such as rheumatoid and psoriatic arthritis, lupus and polymyalgia rheumatic.Prednisone is not recommended in the management of osteoarthritis hence my reason for believing that Pred has contributed to any issues of osteoarthritis I might have.

[Bcol in reply to Liby57]

I'm sorry but I don't the understand the logic in that. Pred and Lansoprazole do/can have many side effects and both can contribute to Osteoporosis but Osteoarthritis is not something that we can blame them for. OA is not an autoimmune disease it is a degenerative, wear and tear disorder so it doesn't just happen/appear over night or even a short period of time. Pred is not going to be prescribed for OA because it's not an Autoimmune disease and not because a side effect might cause or make your OA worse.

[PMRpro Ambassador in reply to Liby57]

Correlation is not causation. Pred isn't recommended for OA because it isn't the same sort of disease - arthritis just means a joint disorder but the causes are totally different. Pred MAY make cartilage more delicate as the wear and tear advances but it doesn't cause it - many people develop OA without ever taking pred.