Can I just start by saying to everyone on the forum....thank you so much for your help, advice and support over the last month....it's pretty much kept me going....
Back to the update....so, I got all my screening results back and the only raised issues were my CRP and ESR at 23 & 24 respectively.
Based on those results and my presenting symptoms the Rheumatologist stated that he felt PMR was likely, despite my age and despite those numbers not being massively high in his opinion.
He prescribed Prednisolone over a 5 week period tapering from 30mg down to zero over that period.
He said that this can work for up to 30% of patients but if unsuccessful I would need to be reviewed and put on a longer term pathway.
He didn't really mention any side effects etc but I've read the leaflet......is there anything I should really be aware of outside this leaflet info or is it just a case of being vigilant to possible side effects.
From my perspective.....if these steroids do work then it's something I suppose I'm pleased about.....The Rheumatologist felt it was the best worst case scenario for me and with the support of this group I'm hopeful that I will get through this....
Many thanks again to everyone, I'll keep posting as I go along this unwanted journey!
Onwards and hopefully, upwards!
Paul x
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Paulx222
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Not sure what he's expecting tbh....he seemed pretty vague but said he was 99% sure it was PMR....I mean obviously I couldn't say if he's right or wrong but he didn't seem overly keen on diagnosing that in appt 1, or at least he was not committed to it.
I did ask 'What if they don't work?'......he replied 'They will.' 😂
He just said then re. The 5 week course....try them and we meet again in 5 weeks and if you're still struggling we will write to your GP with a longer term plan.
Thanks for the Prednisolone advice, I'll start a diary x
Hi Paul...that is similar to my rheumatologist's approach...he said...
"Given you have responded so well to anti-inflammatories I thought it was worth trying you just with a one off intramuscular Depo-Medrone and avoid long term steroids. I will follow-up with a telephone call. At that point, if things are good I will give the appropriate advice. If however you relapse, we may need to talk about some oral steroids longer term."
I hope he is right...and I hope your guy is right too...it is worth trying...nothing lost. I keep a diary and record the size of my "indicator finger" which tells me how much inflammation I have! It swelled up like a fat sausage when the PMR was active but the swelling disappeared completely the day after the jab. It is swelling up rapidly again now. Good luck!
That 30% is probably based on the fact that it is thought that about that many patients are misdiagnosed as having PMR!! I would imagine you will discover before the point you get to zero that it isn't gone - the symptoms will reappear to some extent once you get below the dose you need at present. But you DO have a rheumy-backed diagnosis and a promise he will reassess if the short course doesn't work. Which is what you need.
Don't go mad catching up if it works and if you are concerned about weight gain and the possibility of developing diabetes, cut your carb intake NOW. In particular, stop eating processed foods and added sugar and limit most fruits except berries. No potatoes of any sort, most root veg, rice, pasta and the like. Learn to love above ground veg and salads. Fat is fine - helps fill you up.
is my favourite website to learn about low carb - clear and with pictures that stick in the mind. You don't need to join anything or pay - all that does is allow access to more recipes and plans. There are low carb recipes all over the internet. But DD is European and realistic!
wishing you a miracle Paulx222. Please prepare yourself for you PMR to last much longer than the 5 weeks. If you feel your symptoms returning with a vengeance, please report it to your doctor immediately. Even if you are well above zero. I believe that his approach is unusual and may cause you unnecessary suffering. It is more usual to start at 15mgs-20 mgs and once symptoms are controlled a gentle taper of no more than 10% of your dose at a time. The aim always being to find the lowest possible dose that relieves your symptoms. Familiarise yourself with the tapering section of FAQs. X
Yeah, I suppose you're right.....it's a long shot....I realise he's probably wrong but at this point, to get some kind of actual treatment......it's at least something to pin my hopes on.
I hope that I don't suffer more than I am currently as nd yes, I'll follow your advice and make sure that I contact the GP as soon as I feel any issues xx
I would expect that 30mg will (if it is PMR) take the symptoms away and make you think that you are 'cured'. And if you are anything like me (I was diagnosed at age 59), 15mg will be enough to control the inflammation.
But, from 15mg to zero took me nearly 3 years using a very slow tapering plan and waiting a month between each reduction. So monitor your symptoms very carefully. As has been said many times before, the Pred 'takes away' the inflammation but it doesn't 'cure' the condition; the PMR carries on until it decides to leave your body.
You may well find that you get to around 10-12mg and your symptoms begin to return. If that happens, I would contact your rheumy at once and insist that you go back up to the last dose that you were comfortable with and re-visit your reduction plan.
Hi..I've been on pred for 6wks now at 15mg and due to see dr on 22 dec when I'm assuming he'll suggest a slow reduction. Interesting that your consultant says you can reduce fairly quickly. I think whatever my dr says I'm going to take it ultra slow as I really dont want a return to how i was b4 the steroids. I'll be looking with interest at your progress...good luck and hopefully we'll both be pain free soon.
I think this fast taper is based on an assumption that about a third of patients with PMR symptoms don't have the chronic form of PMR we talk about here and that once the inflammation is dealt with, there is nothing ongoing creating more inflammation. I am far from sure there is much basis to that assumption. And in our experience deliberately allowing the chronic form to flare up compromises later efforts to get the inflammation under control.
How do you know which you have then? Or is it just trial and error? Ive not been referred to a consultant and my inflammation levels came down from 104 to 19 at last bloods. So confusing!
If pred works well does it really matter? If you have the short-lived version you will get off pred relatively easily as your taper won't meet hurdles over and over again. You might take 6 months to get off pred but you will get to much lower doses easily and quickly. If it is the longer version - you will take as long as it needs but the key is to taper slowly in small steps to avoid the problems that arise going too fast and which really mess things up and confuse the issue so you end up on pred even longer than you need have been.
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