Hi once again pmr (or is it ?) Colleagues. Well the journey continues, but after seeing my second rheumy, I'm not sure in which direction.
After the first rheumy telling me I can't have pmr, because the symptoms lasted a year... " it would of abated after one year", the second rheumy said it can't be pmr because I'm too young!! The onset of symptoms started when I was 59.
He thinks its psoriatic spondyloarthropathy, " because I had one small patch of psoriasis" which appeared 10 years ago.... and never appeared again. He wants me to go the metho route, which from reading others dealings with this drug...I don't want to try it.
He also believes it can't be pmr, because I've only just managed to get down to 10mg of pred, from the initial dose of 15mg, after 15 months.
Now I've followed many of your pmr journeys, and it strikes us all at varying ages, and the reduction is easy for some and difficult for others.
I'm happily chugging along on 10mg pred, and trying to reduce each month by .5 mg. I'm able to work full time , regularly mountain biking, swimming etc, so don't want to upset the apple cart.
Any advice on others dealings with the spondy and still on 10mg after 15 months would be much appreciated
Cheers
Richie
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Cromboy
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I suppose your only other option is another opinion. It does seem that your rheumies have a very strange understanding of the symptoms of PMR. Do you think the steroids are helping?
This reinforces my lack of confidence in rheumys. or shall I say the medicine of rheumatology. I had my 1st PMR episode at age of mid 50s ( hip girdle) 2nd ,20 yrs later ( and current) shoulder girdle). I was lucky the 1st time. It lasted appr 2 years. I am now in my 2nd year, and had a major flare due to stress, still working on it. My advise to you is that if you think their opinions or advice are wrong, stick to yr guns. Do a lot of research and make informed decisions, and the best advice, run things by the folks on this site. They have helped me more than any rheumy. I keep him so he can write my pred. scripts. I wish you smoother sailing.
Over 50 according to all guidelines - and last time I looked, that was younger than 59.
It took me over four years to get below 10mg. The median time to get to 5mg is 15 months - half of patients therefore, by definition, take more than 15 months to get to 5mg. Some of them a LOT more.
Every patient is different - and the mistake made by too many rheumatologists, who all too often think PMR isn't a "real" rheumatological condition and therefore beneath them, is to force everyone into a "one size fits all" management. They're right - it isn't a real rheumatological disorder, it is a vasculitis and so I suspect they are out of their depth!
It could be a spondyloarthropathy, they can present looking like PMR, but I would want a lot more justification than he has offered before trialing MTX. Though to be fair, it works brilliantly for a small number of PMR patients and you only find out by trying ...
Hi PMRpro, I did tell him about this forum,; that many sufferers are in their 50s, that 10mg seems to be a sticking point for many, and that mtx only works for a few. He informed me, that only 1% have negative reactions to mtx, and that my chances of getting down to 7.5mg of pred ( a point where it would be easier to tell if it is pmr) was 1 in a million. From what I've read on this forum both assumptions are incorrect
I don't know why, but it seems rheumys are adverse to pmr, as if they are intimidated by it .
Even getting to 7.5mg wouldn't make it easier to "tell if it is PMR" - some patients need as little as 2mg to manage the inflammation, so are symptom-free. What a load of "lets bamboozle the patient with my superior knowledge".
After the first rheumy telling me I can't have pmr, because the symptoms lasted a year... " it would of abated after one year", the second rheumy said it can't be pmr because I'm too young!! The onset of symptoms started when I was 59.
What a load of horlicks!
As PMRpro says MTX may help whatever it is…. but it sounds that Pred at 10mg is keeping things in good order at that moment [albeit slightly higher than many would be a 15 months in - but that doesn’t mean it isn’t PMR].. so can understand your reticence to rock the boat.
Like Pro says , you need to request other tests if they haven't arranged them to prove whether the diagnosis of PSa is correct before you make any big decisions about your treatment.Request these tests and evidence to be done by your current Rheumy or your GP.
Of course , many people respond well to MTX as a steroid sparer and do find it helps them to taper steroids and keep their symptoms under control with PMR as well as with other illnesses.
But you need to know definitively which condition they are treating you for , because the conditions have different requirements in self care as well as medications and the duration of the illnesses is not the same either.
You need to know where you stand so you can make the right choices as well as knowing how to help yourself.
There could also be other treatment options available for PSa that may be more appropriate or that you would prefer to try if you know that's actually what you've got.
If you get more resistance from them , complain and ask for another opinion from a Rheumy with experience of treating both conditions , rather than Specialists whom seem to have little proper knowledge of PMR and seem to be just winging it if they haven't tested you.
Hi Bee, thanks for your reply. He has asked for full bloods and a full body scan to see if anything else is going on, so I'm happy with that. It just seems as though rheumys don't like pmr, because they can't do much to ' cure' it ,
He wants to see me in 8 weeks, so hopefully I'll have reduced the pred a little and priced him wrong cheers
They can't "cure" ANY autoimmune disease ... They should be used to it by now! I think that is their problem - they leave med school convinced they will save the world ...
Hi PMRpro, quick question regarding pred and side effects. I know you have been on pred for some years, and struggled to get below 10mg. Have you experienced any negative effects from long term use, as the 2 rheumys I've seen, drove home how terribly dangerous pred is, if used long term. ... hence their push for me to use mtx.
I'm only 15 months into the journey, and currently reducing to 9.5, but feel pretty good, with no outward signs of harm from the pred. Should I be concerned ??
I'm only 15 months into the journey, and currently reducing to 9.5, but feel pretty good, with no outward signs of harm from the pred. Should I be concerned ??
From my view point, no.... I was on Pred for 4 and half years... starting at 80mg - and much higher doses than 15mg for the first year... and way above the "perceived" dangerous cumulative dose .. been off it for 7 years now, and no long term affects whatsoever.
I realise I may be one of the fortunately ones, but there is a lot of scaremongering from some doctors about Pred... when uncontrolled inflammation from your PMR or in my case GCA is what can do much more damage - as I can testify.
No doctor ever told me how dangerous Pred was - and that's because they knew how dangerous it was not to take it.
I don't think so - I can't identify any serious problems after 14+ years on pred - it was that or persistent symptoms and inflammation. I could accept their push for MTX if it worked for PMR but it very often doesn't even result in a lower dose of pred but you have the load of 2 strong immunosuppresives. If it worked so well, they would use it from the outset. They don't.
How frustrating, stick to your guns and do not reduce too quickly, 15 months is nothing. I am coming up to 5 years and I would say I was was still on 10mg for a long time and had many excursions below 10mg only to increase due to a flare. Be patient and try and find a consultant who understands. Good luck.
Hi Sueloucam, thanks for your input. I've now had in depth bloods taken, X-rays of everything ct scans and bone density scans, so I'll see what they show up. I'm not going to take the metho, as I've read (on here) some people's reaction to it, and I don't see the point... I've no obvious negative affects from the pred and live a very full and active life.
I am however starting the wim hof regime, of cold therapy, as many people with auto immune problems get great results... I feel better after only 1 week of cold showers, so watch this space once I start the ice baths.
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