Hi All , I wrote on here a while back that I was down to 2.5mg , I stopped taking ranitidine for my stomach and that’s was fine on such a low dose of pred. Gradually I have noticed my pain is slowly getting worse , started in my shoulder , then into my sternum , ribs and neck, last 2 weeks my knees, wrist and elbow have flared up, still can’t get an appointment to see the Rhuemy , should I increase to say 5 , but will that mean I need stomach protection drug , I just had a private MRI on my shoulder and sternum as was in so much pain , get the results Friday be interesting to see if it shows wear and tear or inflammation . Any advice , should I hold out till Friday and see if the MRI shows inflammation that could prove it’s PMR flaring I have never been one that has a high CRP or ESR , I take the occasional Arcoxia 60mg tablet arthritis drug to get me through the worst days . Your thoughts
2.5mg joint pain getting worse : Hi All , I wrote... - PMRGCAuk
2.5mg joint pain getting worse
It is perfectly possible that 3mg was enough, 2.5mg is not and the inflammation is mounting up again. It isn't uncommon. If it were me I would try a day or two of more (7 or 8mg should be enough) and and see if that helps - before the appointment on Friday so you have that evidence to add to the MRI results.
But you say joints? I don't get joint pain with PMR, it is all around the joint, but not in it.
Hi PMRpro , I had both my shoulders repaired a few years ago they never said if it was due to the Pmr just wear and tear, neck chest and shoulder pain could be muscular but my knee’s and elbows are definitely joint pain . I read that a percentage of Pmr patients are eventually diagnosed with Rheumatoid Arthritis , I definitely have Osteoarthritis problems which is probably why the Arcoxia calms things down albeit temporarily. I take on board what you say about the increase just before I read it I had taken an Arcoxia , so will wait a day as that’s how long relief I get from them , when the pain comes. Ack increase the pred till I see the consultant 👍
Totally agree with Pro , wait until Friday and try and ease it with rest , heat and Paracetamol until then when they can discuss your MRI and give you a full examination on the lower dose.
Have you had your RF blood test recently ?
Are you given the Arcoxia on prescription for OA ?
Are you only meant to take it occasionally or can / should it be taken daily?
Just wondering wether you can use the Arcoxia in the meantime , and if it works , the pain may mainly be OA / Joint associated . You may be able to take it daily if approved by the specialist and not need an increase in Steroids .
Good luck with the MRI
I was given the Arcoxia to ease the pain when reducing by the rhuemy , I haven’t seen him in 10 months keep telling me no appointments and I am on the waiting list. To PMR , how long would it take for example if the dose of pred was just very slightly to low for the pain to come back , from others experiences would it come back gradual almost like every few days something else starts to hurt . My sternum pain is chronic now can’t put pressure on my chest and that’s when I took an Arcoxia . Is that a specific test RF don’t think I’ve had one of them , always ESR and CRP but they where perfect a few weeks a go . Infact the GP said they where better then his . I did have a lot of our blood tests . But don’t recall an RF , hopefully will have some answers Friday
Whether the figures are better or worse than his is immaterial - you can have symptoms of PMR and GCA without the blood markers for inflammation being raised. RF is rheumatoid factor, which is often raised in rheumatoc disease but not necessarily. You can have rheumatoid arthritis with a low RF, when it is called seronegative, and you can have a raised RF and be perfectly healthy although it is thought it may be predictive of future developents.
How long it takes for symptoms to return on a slightly too low dose of pred varies - how active the underlying autoimmune disorder is becomes significant, more active needs more pred, as well as other factors.
Thanks for the info , its a mine field , nothing seems black or white with this condition . We just put our selves in the hands of the “experts”, and hope they get it right . In 5 years of ups and downs my GP or the Rhuemy I was seeing will not say I have PMR just possibly due to my age 55 when pain started , they said I was to young for the condition which we all know by the people on this forum is not to young. Just hope MRI scan results on Friday are Favourable.
RF is rheumatoid factor blood test , they may have taken it in the past but you need to check if they have ruled out Rheumatoid Arthritis as well , and when . If you haven't been checked since your PMR started it may be well checking it again so other things can be ruled out.
Have you had a Dexascan in the last year?
If it's been more than twelve months it is worth doing to see if your Bone Density is adding to your OA problems and therefore adding to OA Pain . If the OA has got worse this Pain can be confused with PMR , or it could have caused a return of active PMR Pain and you will need advice and treatment for both.
If you were given the Arcoxia to help ease other Pain while tapering , and it has been working , maybe taking it until Friday when you get your MRI results would be a good temporary option. They may tell you to keep taking it.
At your appointment , when you know more about what is going on , you could then see if that is a drug that you should use regularly , and see if you should have a temporary increase in Pred for a few weeks then do a quick drop back down again.
If they are convinced it is OA and other wear and tear at present you may need other medication to help with the pain associated with these and possibly a referral to Physio to help with advice about OA exercise .
Let us know how you get on.
Had a Dexascan about 3 years ago that was fine at that time , think I will see what happens Friday and will take it from there., thanks for the interest I will let you know how it goes on Friday . 👍
They do recommend that you should have a Dexascan each 1-2 years while having these Pain and joint issues and taking steroids and if you have already been diagnosed with OA so you should ask for an appointment for another one.
The Arcoxia was presumably given to you to cope with OA pain. It is an NSAID so you do need to be careful and get advice on that.
Basically , if it's been three years since most of your other blood tests and scans it's definitely time to have a full MOT.
I get the feeling my GP thinks I’m hypochondriac, I don’t wish Ill health to anyone but I would like him to feel the pain just for a day to see if his attitude changed towards me and no doubt other with this condition he treats.
Yes , we all feel like that , and some of us have had doctor's whom ended up getting these conditions and changed their tune.
You only appear to be a hypochondriac if they haven't actually sorted out your problems properly and your symptoms get worse. It's a failure on their part not a failing on yours.
Is there another GP at your practise that you could choose to see instead if you don't feel you get anywhere with the one you are seeing , it's really important to get a good Primary Care Provider if you can't get to see a Specialist easily.
I go in now with a list of questions and requests to tick off and politely but firmly tell them what I need and don't hold back from questioning something they have said if it doesn't seem to fit in with my own research or symptoms. I don't let them rush me , and just apologise that I am going to need to sort more than one thing out but I don't leave until I am confident that I have got a bit further with everything on my list. Doctors do need a little personal training and reminding that getting their Patients better is a Partnership not a Dictatorship.
Let us know what happens on Friday , after the results I'm sure many people will have more suggestions for you about how to move forward.
Well said , I’ll let you know on Friday
The shorthand in the UK for the fitness for purpose test every car over a certain age must pass annually - set by the Ministry
"This Ministry of Transport test is commonly known as an 'MOT'. ... An MOT involves dozens of checks on your car, ranging from the brakes and fuel system to lights, mirrors, seatbelts, windscreen wipers and exhaust system. It doesn't cover the condition of the engine, clutch and gearbox."
So it can pass the test and not be fit for purpose in fact ...
Er, no! If it doesn't pass you get to take it for the relevant repairs/adjustments to be done - if you decide it is cost-effective although you can't drive it in the meantime if certain things failed. It is a requirement in every European country as far as I know though each country sets its own detailed rules. Here in Italy they are every 2 years - I take mine to my garage who take it to the official testing station. In the UK many garages are approved to do it on site. If you maintain and service your car properly there is very little to fear - and a lot of things are for the safety of you and others, such as emissions and tyre tread depths ...
Yep , don't worry if your GP gives you a full Human MOT and you don't pass they aren't allowed to put you in a crusher 😋😂😂😂
At least not yet , who knows what budget cutting experiments that may choose one day soon.....
I know following all their instructions and the endless adjustments can get really annoying and tiring , but it's still worth giving it a go , and taking some helpful pointers from your head to toe Human MOT 😋
Lots of locals say something similar. OTOH, a human MOT can be a lifesaver when it finds something threatening.
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