what are symptons of pmr still being active

[arvine]

I am still confused about this question, from what I have read it seems any sympton ie from aching knees, to ankles , neck, elbow joints, a long list while tapering pred, even in the dead slow method, can result in so many different symptons as mentioned above is result of flare and pmr active, while my rheumy suggests with all my symptons not pmr rather osteoarthritis , fibro, aging etc, for example when shoulder hurting few years ago, ultrasound showed calcification, somevMRI s have shown tears, spinal stenosis, trapped nerves etc, and exrays show osteoarthritis to confirm theumy s theory, so the pains we experience then could have been masked by prednisone dose over the years, what are thoughts on this idea

[piglette]

You are right, prednisone does mask other symptoms when we start on steroids. When we then reduce they can slowly raise their heads again which can be confusing as they may have nothing to do with the PMR, although the symptoms may be similar. The trouble is there is no definitive way of diagnosing PMR and the symptoms are similar to other problems. I read somewhere that only 60% of those diagnosed with PMR actually have it. It seems a low number to me and could be fake news, but I am sure there are a few mis-diagnoses.

[arvine in reply to piglette]

Oh wow! So been on pred over 8 years for pmr, and my dr s feel it has contributed to other health issues I have, maybe even caused, trouble being once on for so long and health issues hard to get off,

[Twopies in reply to arvine]

What other health issues does he attribute to prednisone? Thanks.

[arvine in reply to Twopies]

Osteoporosis, liverbdisease, weakens muscles tendons , making prone to tears, , which I have had

[PMRpro Ambassador]

Most rheumatological disorders cause similar symptoms - some cause more, some cause less. The skill on the part of the doctor is identifying which is due to what.

[arvine in reply to PMRpro]

Which seems to be a difficult task for my drs and many others

[arvine in reply to PMRpro]

And trying to get the correct diagnosis is stressful as well

[Pixix]

Yes. I was told by a consultant that my pred had been masking the way my arthritis was getting so bad. They could tell by the disfigurement of my fingers that it was getting worse. But now I have tapered to 1mg, the pain of the arthritis is appalling, I have virtually lost the use of right hand due to thumb & wrist arthritis, & am limping badly as my feet hurt so much! . As I have 12 diagnosed ‘diseases’ it is often hard to tell where the pain comes from. Sadly the pain patches I was using have ceased to work (I think it’s the cheap version the surgery started to prescribe). I’m not increasing my pred, despite the agony, because I don’t think it’s a PMR flare, & it doesn’t resemble the adrenal problems I had, previously. I don’t want pred to mask it, I want ‘it’ treated! Hoping to get a steroid injection before Christmas,but have been let down by my Dr & all I can get, after waiting 4 months, is a ten minute phone appointment!! I think you have to work it out for yourself, tbh. You are the only person who knows how you feel, & where the pain sources are. That leads to knowing whether it’s PMR related, or fibro, or arthritis, or, in my case, one if the others! I think about the original symptoms I had, for example, the worst pain for fibro was actually in the hollows of the shoulder bones, at the front of the body. My worst pain forPMR was back of shoulders& hips. I can recognise my hip bursitis easily!! I’m aiming to be off pred by mid January, but my PMR may say otherwise..but I will look for my original issues! Oh, & dreadful body sweats, especially my head…that was only PMR, never had it before. Make notes, look & see if cold or damp weather affects your problems, or if some of it is affected by stress, for example…just a suggestion!

[PMRpro Ambassador in reply to Pixix]

"pred had been masking the way my arthritis was getting so bad" ... "I don’t want pred to mask it, I want ‘it’ treated!"

Is this inflammatory arthritis or OA? Is the pain amenable to a joint replacement? If not - there is no cure for either, just pain management. Which may be with medication. If pred works as pain relief, I fail to understand what the difference is using pred, naproxen or any other painkillers.

[Pixix in reply to PMRpro]

Both, it would appear. Definitely OA in thumbs,wrists, toes, probably ankle (but that could be tendon tear), oh & some in hip, but not bad enough to need a new one…yet. Dr thinks I have zero negative RA, or inflammatory arthritis, as well, as the morning swelling takes so long to go down, there are nodules on joints, can’t remember what else. The referral has been 18 months now, & no appointment. Pain patches seemed to stop working when they started using a different make, but the painkiller element has to be the same in each. But at the same time it got damp, & the temperature dropped. Dr is happy for me to stay on2mg for life, but that’s not enough to help the arthritis.

[PMRpro Ambassador in reply to Pixix]

I just can't understand why if 2mg plus "other stuff" for pain relief is acceptable, say 5mg of pred alone isn't??? It is pure prejudice if you ask me. I;m so glad my docs here see it the same as me!!!!

[Pixix in reply to PMRpro]

I don’t know the answer, but, if you remember, the last rheumy I saw lost the plot & said I must come off them by end August (2023), & if I felt sick again (adrenal insufficiency) I just had to plough through it & continue to taper. Now it’s a year later, not two months!! It’s not acceptable to the consultants for me to continue to be on steroids at any level. His letter was very straightforward indeed. But the arthritis reared its head when I was on 10mg, not 5mg, sorry if I put that somewhere. I didn’t think I had. I still suffered a bit in the winter from arthritis,despite the 10mg pred. When I was on 17mg, down to 10mg I noticed a difference, & was surprised when the rheumy pointed out the nodules on my finger joints.

[PMRpro Ambassador in reply to Pixix]

No, just picked a number out of the air - they have a fit about 5mg too.

[Pixix in reply to PMRpro]

Oh, OK!! My Dr has been very helpful in navigating around the consultants wishes!

[Rynn33]

It can be confusing alright- for me I tend to take it as inflammatory arthritis/PMR if it’s affecting both sides ( even if one side is worse than other which is the case always in my shoulders). Plus that the pain is getting worse without upping the Pred. I think wear and tear OA would plateau pain wise and respond to naproxen or similar which my PMR has never done ( only takes the edge off it). But it is very confusing some weeks! The other aspect is the fatigue getting worse for me is a PMR symptom.

[PMRpro Ambassador in reply to Rynn33]

But my point is - if you take pred that is dealing with your PMR symptoms AND your arthritis symptoms AND any adrenal insufficiency problems - where is the problem if you are round about a physiological dose and it means you don't need naproxen or the like? The anaesthetist who runs the pain clinic here is horrified at the long term use of NSAIDs but doesn't get in a knot about a mg or 2 more pred.

[arvine in reply to PMRpro]

Well I am still on 4 mgs of pred, drs tell me I can only take extra strength tylenol, no naproxen or anti iflammatorys and as I have said have started on methotrexate injections first one 15 mgs last Friday, , told toget bloodwork done after 2 weeks of being on metho and a hepatitis test, for liver I understand, , methotrexate is suppose to help me taper pred more, and have been told cab take 3-6 mos possibly to see affects if helps with all over joint and muscle pain, last couple days excruciating pain all over, wishing I had ignored rheumy and done the 5!mg increase for 2 weeks as suggested on this site, to see if relieved pain, but was afraid to , in case more problems tapering after that, I think I have been patient and now starting this metho know I have to continue patience, but many days am in tears with pain, especially first half of day and evenings, he s given me 6 weeks of metho,, having said ruled out RA mos ago, but said could have fibromyalgia as well, also said to stop metho 2 weeks before hip surgery adding prednisine is more likely to cause infection than metho undergoing surgery, said prednisone is worst med ,

[Nextoneplease in reply to PMRpro]

I agree with this PMRpro - but unfortunately my GP doesn’t 🤷‍♀️She says it would be ´inappropriate ´ to treat OA with pred and is therefore still encouraging me to reduce my dose. Says to take codeine and paracetamol, and ibuprofen gel, for OA.

7mg pred daily has coped with much of my pain for the last year. Now that I’m tapering towards 6mg, my pain is not so well managed AND I’m taking extra painkillers. Makes no sense….

Having said that, I’ve promised myself to give it a good shot, then book a double appointment for after Christmas to review. Fingers crossed (well I would if I physically could !!)

😊

[Hirwaen in reply to PMRpro]

Totally agree PMRPro, but what I would like know is what is considered a physiological dose of pred? I am taking 3 mgs at the moment which is not really enough and every week or so I give in and take 10mgs, feel better and arthritic pain improves to a degree but when I go back to original 3 everything goes back to usually pain. I had a THR a year ago and have recently started to have some quite bad pain in that hip too. This make it difficult to decide what is PMR and what is arthritis!!!!!😵‍💫

[PMRpro Ambassador in reply to Hirwaen]

All my life we were told that 7.5mg pred was about the physiological dose. And that is the sort of range loads of people start to have problems. Then Imperial London endos did a study and announced that in fact 2mg was enough to provide the body with enough steroid to function. I think they ignored a lot of other factors. but if a patient can do really well with 5mg pred a doctor is crackers to say no.

Look at Nextoneplease's reply above - if everything is sorted with a single dose of pred, how can ANYONE tell me it is better to force a patient to use codeine and paracetamol, and ibuprofen gel, for OA - which doesn't work as well. Cocodamol causes constipation and large amounts of ibuprofen gel can cause gut problems over time. Codeine is addictive - don't get the pleasureable concept personally, just made me feel ill.

Using steroids, orally and intermittent targeted injections, I currently need a whole 500mg paracetamol a day, which even I am prepared to take. Pretty much pain-free after 20 years of PMR - I'll take that!! But 16 years of pred does mean I need a decent dose to manage adrenal issues so i do have another argument up my sleeve ...

[Nextoneplease in reply to PMRpro]

Definitely think I need to get my ducks in a row and make this sort of argument next time I talk to GP!

Of course she’s also asking endo’s advice about ‘steroid dependency’/ adrenal insufficiency before that… hence I think I’ll need a double appointment…. 🤔

[PMRpro Ambassador in reply to Nextoneplease]

FFS - bit early for that!!!!!

[Nextoneplease in reply to PMRpro]

I know, I know…..but it seems we’ll have to at least mention it before moving on to the issue of pain 🤷‍♀️