Arthritis

[Caulkhead63]

Does everyone who has this condition end up getting arthritis or some form of it?

[DorsetLady PMRGCAuk volunteer]

Some of us had osteoarthritis before GCA or PMR... and OA is a familial trait on maternal side... GCA certainly isn't. .. only me [as far as I know]

A doctor [many moons ago] told me the majority of people over the age of 50 years have some arthritis [osteoarthritis being the most common] in theIr body - for some it cause issues, for others it's never a problem... so don't blame PMR..😏

[Charlie1boy]

I had arthritis long before I developed pmr!

[PMRpro Ambassador]

What condition and what sort of arthritis?

PMR and GCA aren't joint-related, which is what arthritis is. They are due to vasculitis, inflamed blood vessels, which impairs the blood supply to various tissues.

Then arthritis has many different versions. There are autoimmune inflammatory arthritides such as rheumatoid arthritis and osteoarthritis which has always been classed as a wear and tear inflammation of joints but it is being realised there is also and autoinflammatory factor involved. Sometimes they can present looking just like PMR and some can even imitate GCA symptoms by impairing blood supply to the head.

But it is unlikely that PMR/GCA cause any of them and nor do they "turn into" any, they might have been misdiagnosed though.

[Caulkhead63 in reply to PMRpro]

I've got PMA. I've heard a lot of people talking about rheumatoid arthritis and having to see a rheumatology doctor. So wondering if it's all linked

[PMRpro Ambassador in reply to Caulkhead63]

PMR you mean? They have a similar background in that they are all autoimmune disorders but they are no more related than rheumatoid arthritis and lupus for example. And rheumatologists are the speciality we are referred to if the GP isn't able to deal with it for whatever reason. Rheumatologists treat all sorts of autoimmune things, it is the history of who dealt with these typical symptoms for long before it was established there were differences in the causes.

[Caulkhead63 in reply to PMRpro]

Yes PMR and thanks for explaining.

[PMRpro Ambassador in reply to Caulkhead63]

Why we are here!

[Caulkhead63 in reply to PMRpro]

Xx

[Bcol]

Hi, I've had OA for many decades before PMR showed up and in real terms my OA has, and will I suspect, continue to cause me more pain and many more problems than my PMR ever has.

[Caulkhead63 in reply to Bcol]

Sorry to hear that x

[Bcol in reply to Caulkhead63]

Thank you, sorry re-reading that I have probably made that sound worse than it really is. It's well under control, well, most of the time but when it's been or gets grumpy it is "interesting".

[PMRpro Ambassador in reply to Bcol]

Especially in the UK climate!!!!

[Countrykitten in reply to Bcol]

Same here. You have my sympathy.

[paintpots]

I was told I had Arthritis in my hips 5 years ago when first diagnosed with pmr. I think the pred has been masking it because now I an nearly off the pred (0.5mg) my hips are starting to hurt a little. That's a small price to pay for being off pred and pmr free!

[Mfaepink1973 in reply to paintpots]

I’m the same, X-rays showed arthritis in both big toes, hips and back but never a problem until I tapered to 7mg and I presume the pred was masking the symptoms up until then. Now I’m down to 6mg the arthritis has decided to let me know it’s there. In fact I had an operation on my left foot yesterday ouch!!!

[DorsetLady PMRGCAuk volunteer in reply to Mfaepink1973]

Hope you soon improve …

[Caulkhead63 in reply to DorsetLady]

Problem is I've slowly reduced to 9 but I'm getting aches and pains back in my shoulders my hips and places where I never had it before. My wrists and fingers. My doctor not very sympathetic seems to think I should just put up with it! Can't stay on pred forever bad for your bones etc!

[DorsetLady PMRGCAuk volunteer in reply to Caulkhead63]

Actually my reply was to Mfaepink1973 re her recent operation..

Do you means the aches and pains are where PMR never was before, or OA never was?

And no, you shouldn't have to 'put up with it' whatever is causing it - not sure doctor would!

All of the symptoms you describe could be PMR or OA or a combination of both.

Have you tried

a. ordinary painkillers for a few days to see if they make a difference , or

b. the flare protocol as described in this link [assuming you have enough Pred] -

healthunlocked.com/pmrgcauk...

But obviously don't do both together.. try painkillers first.

[Caulkhead63 in reply to DorsetLady]

Yes as cutting down pred I'm getting pain I shoulders and hips again which I had before but also in hands and fingers which I didn't have before. Pain killers help with finger and hand pain but not with rest

[DorsetLady PMRGCAuk volunteer in reply to Caulkhead63]

In that case, I would say 9mg is too low... so maybe try the flare approach and see if it helps - then back to 10mg..

[Caulkhead63 in reply to DorsetLady]

Thank you x

[PMRpro Ambassador in reply to Caulkhead63]

"Can't stay on pred forever bad for your bones etc!"

So is immobility! I've been on pred for heading for 15 years now and it hasn't killed me! On the contrary, it has allowed me a life pretty much free from pain and disability. If your bones suffer, there are ways of dealing with that but loss of bone density is not inevitable, mine has been fine so far. There are ways of avoiding or minimising pretty much all the adverse effects of pred when you know how.

Hope your doctor develops PMR at some point - and that HE is told to just "put up with it".

[Caulkhead63 in reply to PMRpro]

It's not even 2 years till August! When I was first diagnosed all I got was a few sheets of paper explaining about poly and steroids and that it should be gone in 2 years! Since then I've had one face to face in October that year and very few check ups. I've learnt more from you guys than I have my doctor!

[PMRpro Ambassador in reply to Caulkhead63]

That's very common! I think a lot of doctors dismiss PMR patients because they believe that rubbish in the handout. Only about a third get off pred in 2 years so that leaves a majority who are on it longer and need more care. After a hiatus during Covid, I am now back to 3-monthly appointments with my lovely rheumy here in northern Italy, plus extras when my back pain has got out of hand. And that despite more regular Pain Clinic appointments which really achieved almost nothing - her main function recently has been to say no to the various ways I had found that just about made life worth living! The rehab guy was better but you wait for ages for an appointment and then he only seems to hear one thing at a time, moving on to the next after that so it takes even longer.

[PMRCanada in reply to paintpots]

I’m the same as well. OA noted in both knees 5.5 years ago. Had a few injections, lost 35 pounds and put on pred for PMR and all the knee pain went away. With my last taper down to 5.5mg pred the knee pain is returning. An X-ray of my knees last fall revealed the OA in knees is now stage 3 (moderate), so I’m thinking I may need intervention (replacement) down the road.

It also complicates my goal of doing more weight bearing exercises to address the noted decline in my last bone scan. If I continue to lower my pred dose and walk regularly the hope is that my next bone scan will reveal better results, but as I lower I’m guessing the knee pain will increase, making walking more difficult. And therein lies my conundrum!

[Pixix]

I had it for years before I had PMR, too. Hereditary through my father,mi think. Worst parts are thumbs, wrists, toes, & to a much lesser degree, hips! High levels of pred masked the condition getting worse, so when I tapered lower I was surprised how bad it had become! I think this is normal, & would be why OA is a subject of quite a lot of posts!!

[Lochy]

I was absolutely fine until I suddenly developed symptoms and was diagnosed with PMR 8 years ago (I shock myself typing 8 years) After about a year or so of trying to taper not very well and developing swollen knees I tried Hydroxchloroquine which didn’t appear to have any affect. Then tried sulfasalazine which also had no real affect. I measure the success of these drugs by how I felt and how successfully I was able to taper. My knees were probably the most annoying symptom as they really restricted my life. My rheumatologist believed I had polymyalgic onset sero negative RA. I then had two years of Etanercept weekly injections and that allowed me to reduce to 1.5mg. Still a few niggles breaking through. Currently trying Filgotinib an oral RA drug. Seems ok, having a follow up appointment in two weeks where they’ll ultrasound my joints and compare. Don’t know what happen if they see no progress. These drugs are expensive!! I’ve no real idea if I’ve been misdiagnosed or whether my condition has morphed into an inflammatory arthritis. I’m still tapering religiously and my goal is to be off steroids by the end of this year. Currently on 2mg. 🤞🤞

[Wizards]

Once off prednisone I developed what I thought was sciatica. On holidays and could barely walk. Months later after message and chiropractic my rhumitologist thinks it's bursitis. It's been on and off severe pain. Well do an injection in February before holidays. Along with all of this my hands at lower doses developed trigger fingers in both hands but mainly in my dominant hand. I was getting cortisone injections to the point it wasn't working so once off prednisone they needed surgery however more is going on. Rhumitologist and I agree arthritis and possibly something else.

We tried hydroxychloroquine but I was deadly sick, throwing up all night and day. I refuse methotrexate because I know I'll be sick. I had every side effect with prednisone.

We agreed to operate on 2 of my fingers and go from there. During the operation the surgeon and I agreed to go further down my palm and see about a lump that was causing extreme pain. Ended up I have dupuytren's disease but mine causes pain. The surgeon also agrees more is going on, arthritis.

Interesting though my hand during the healing process was still in pain from October to December and then pneumonia. The antibiotics took away the pain but still problems with swelling and dexterity.

Jan 10th I hand gallbladder and hernia surgery and the day I took a different pain killer, Tramadol, that night I woke up and that hand, fingers had no pain or swelling and I could make a fist. Only lasted 2 days. Tramadol also works on my hip.

So long and short, yes I have arthritis either OA or inflammatory maybe RA but I'm not showing those markers which means nothing.

I need to find a drug that will work. Any suggestions are appreciated.

[humlies in reply to Wizards]

I have suddenly developed stiff clicking fingers; I had synovitis last year and went back to 20 mg pred, which cleared it up. I was interested to hear that you suffered from trigger finger, and was wondering if that is what I have - I'm sure this is not PMR. I'm now on 3 mg. pred. I do hope you manage to find the right medication. I'm told that ibruprofen is the only thing?

[Wizards in reply to humlies]

Clicking fingers are trigger fingers and can eventually lock in position and sometimes permanently. My trigger fingers actually triggered my arthritis and then they would swell and get painful.

Getting shots of cortisone helps release them but you can only get so many shots then like me they operate and release the tendon.

With me since they discovered during the operation that I have dupuytren's disease, it can cause trigger fingers and so can arthritis.

This is why with 3 problems in my hands let's fix 1 at a time a continue on.

I find getting the shot early better. It works faster.

[DrRon]

PMR for 5 yrs, and yr 3 my hands became swollen and had terrible pain, was diagnosed as rheumatoid arthritis ... methotrexate was added to my Pred, and that took care of my hands, and am gradually reducing Pred, now down to mostly 3mg daily, alternating

[Cemi]

Sorry for delay response, just seen this query about arthritis.... I came off prednisolone for GCA last august and was signed off by rheumatologist in november followup.. When mentioning that minor aches and pains had returned post pred., he said that is probably your osteoarthritis you have... first time I had a formal diagnosis so that was handy. He also advised trying a course of GoPo (essentially rose hip extract +) because there have apparently been some high quality clinical trials of its efficacy, in case that helped. I have done so, and the minor aches and pains have reduced a little and stayed very minor... so worth a try for anyone with osteoarthritis.

Just as a final note on the journey for the GCA, I just stuck rigidly to the taper regime I was given, starting from 60 for a week, then some 5mg step downs, then 1mg per month step down at the 20mg level... this last phase was very frustrating because it takes so long, 2yrs altogether... but stayed disciplined.... so far it seems to have worked, crossed fingers... occasionally a whisper of a headache that last maybe 15mins only.

I am also keeping a GoPo maintenance dose going... hopefully can't do any harm

[Maisiek]

Go Pro helpful- as my PMR fades ( 3 years . Tapering at 1.5 mg) my Osteo arthritis kicks in: I’ve found Turmeric helpful - especially the Turmeric honey much advertised on social media .