Hi everyone and thank you for the invaluable advice you have given over my journey of PMR
After two years on pred I have only just managed to get down to 6.5mg continually using the DSNS method
I saw my rheumy last week who believes I may not actually have PMR but psoriatic arthritis due to the fact that my brother suffers from psoriasis and that I’m taking so long to reduce the pred. I feel my symptoms are classic PMR. He has prescribed Plaquenil and then in a month start to slowly reduce the pred.
Can I ask what are your thoughts are and experience with this?
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Storm-boy
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I saw my rheumy last week who believes I may not actually have PMR but psoriatic arthritis due to the fact that my brother suffers from psoriasis and that I’m taking so long to reduce the pred.
?? Autoimmune illnesses do often have a familial link - but that's a bit of a presumption without more proof - and he's obviously another believer in the "PMR only lasts 2 years" theory... Wrong - for some, yes, but for a lot more, no, it lasts a lot longer!
Hi Dorset Lady, your Rheumey too, tomorrow I'm having ultrasounds of hips thighs shoulders neck rotary cuff etc. My rhuemy thinks I could have that too. My son has psoriasis, and my Uncle had it, but I never have. Time will tell. Mine wants me to try methotrexate depending on my results. He wants me to keep tapering even though I've got sore legs shoulders and neck and hands. It's hard to know what to do for the best. Good luck to you, let us know how you get on. Janis
I really don’t understand why some rheumies insist you reduce when you are obviously in pain…and in your circumstances it’s obvious (well to us anyway) why you might be struggling…
I'd have to report myself if I said what I really think - but I think he is being totally OTT complaining at 2 years to get to 6,5mg. A study from the Mayo Rochester found that half of patients take 18 months to get to 5mg pred - which means half take longer.
I had a rheumy who didn't think I had PMR despite textbook symptoms and amazing response to pred in 6 hours. An aunt had had psoriasis, so that was what he latched on to, only person the family and I have never had anything remotely resembling it. After 18 years of PMR symptoms and only just at 6mg by taking Actemra for over a year, my rheumy, probably the leading light in the world PMR field, doesn't suspect anything else but PMR. It has responded well to Actemra, wouldn't have if it was PsA.
If you were to try Plaquenil, it will take more than a month to work - so why is he in such a hurry to reduce the pred that is working well for you. Apart from anything else, the return of adrenal function will be the limiting factor even if the Plaquenil works for your other symptoms. If you DO try Plaquenil please make sure you get a good eye check and tell them why. You need at least annual eye checks when on Plaquenil as its worst adverse effect affects the eyes, you need a baseline.
There are one or two people on Plaquenil for PMR and it works for them - was it PMR, was it something else?
Has he done any further blood tests to confirm that psoriasis is active in you?I think I would be requesting the appropriate tests to confirm it , you can't just assume someone has something because a family member has it just because they " seem" to be taking longer to recover from PMR than they expect.
Have you got any of the other common symptoms of psoriasis recurring that could lead to a doctor thinking you have it?
As I've said many times on this forum , doctors might have their guidelines but PMR can't read timetables , and wouldn't take any notice of the rules even if it could. Each patient is very different , and if you have other health issues going on at the same time the length of disease activity or severity of the symptoms that you have with PMR or GCA can be much longer than the doctors have written on their little pamphlet. If either condition you have is not being well managed or is flaring up , or you suffer from an injury or another illness during the time you have PMR or GCA, this is also likely to cause the time your illness is active to be longer too.
Apparently this sort of whole body , joined up thinking seems to be as hard for most Doctors and Specialists to grasp as Rocket Science to a cage of monkeys. Logical thinking doesn't seem to be part of the course in medical schools these days.
There is , of course , the option that your doctor doesn't seem to be considering , and surprisingly many don't, you can have more than one condition at the same time.
So , it entirely possible that you could have Psoriasis and PMR, in which case trialling the Plaquenil could be worthwhile for the treatment of the psoriasis but it wouldn't necessarily mean that the time it takes for you to reduce the Pred will be any quicker , in fact it could be slower , until you have both conditions under control.
Personally, I'd be asking for thorough tests to confirm psoriasis and reminding this doctor that you can have both conditions at once which makes it understandable that the time that your PMR is active and time to come off Pred may well be longer than the guidelines in the textbook. Good luck with it all , Bee
Yes , especially the more obvious signs of psoriasis specifically, which it is why it is important to have it tested properly with the blood tests to rule out other options and x-rays and an MRI or ultrasound to spot the tell tale PsA signs.I have PsA but it has only caused me psoriasis of the nails and intermittent flare ups of a hard lump rash on the scalp . You can get it without any of the more obvious tell tale signs of psoriasis occurring first which means it can be misdiagnosed as Inflammatory or Oestoarthritis in some people. Others can only have the skin and nail problems but don't develop arthritis like or joint symptoms for some time , or at all.
My Uncle had severe psoriasis of the skin since his teens but didn't have any arthritis inflammation or joints issues until his sixties, not that the skin problem didn't cause pain and problems enough. Of course , in those days , he was stuck with twice weekly tar baths , which meant my poor aunt a lot of cleaning and they had to replace their bath at least once a year.
Thank you, I sometimes wonder how I got through it too, but great friends and three amazing kids, all very supportive, and you know you just seem to find an inner strength when you have to. I took my little puppy for her first walk out in public this afternoon, she's a little cavoodle, she's great company I'm so pleased I got her. She had her last vaccination last week and microchip. So good I can get walking again, lots of paths around where I now live, better than in the country where the roads are very busy and no footpaths.All the best to you. Let me know how you get on.
I'm just home from my ultrasounds and xrays and the lady who did my ultrasounds said the tendons around my rota cuff and shoulders are very inflamed, so am I right in thinking this indicates PMR? Perhaps Dorset Lady and PMR PRO will have insights into this, and others.
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