back on forum to give progress
Posted , 7 users are following.
well to be honest not much..................I live in the UK. Since January/Feb have had increasing pain in muscles and hands. Treat ment ...painkillers, and anti inflammatory. Red platelet count was 30 now around 42 ish.
One doctor recommended steroids but said I should see specialist. Urget on the list was a six month wait. I have paid to see Haemotogist twice and have had more blood tests (now I have gone private nothing will be paid by NHS) rheumatolgist saw me and requested more bloods and a chest scan...my GP will only pay for chest xray so paying for my own scan.
They know what it is not....Lupus, different cancers...Rheumy thinks possibly PMR. Haemotogist says not to take steroisds as this will burn out...Rheumy says steroids needed....so what do I do??
The pain can be terrible and I feel infirm. Have not driven since January. My left hand has now straightened and not clawed but both vey painful and hard o grip, pick things up. Rheumatogist told me to stop taking diclefenic because of my blood results. I have dolpadol...hardly cuts the pain.
I feel that I am many months along the line and still have no relief...the haemotogist says that i would need a high dose and that in his opinion the side effects are such that he would not prescribe them. Have changed diet, lost 11kg and still gently losing........does this eventually go away???????
so to sum up....my skin, eyes and scalp are still dry and flakey. My hands are rarely clawed but painful, I am still bruising but not as much...the stiffness and pain seems to move about a bit...at the moment shoulders and upper arms...and the pain level...well it cuts across my sleep..but recently had a tooth abcess and that was 9 out of 10 this condition is a different pain...7 out of 10 but it seems to go on for ever...
ideas please...I go to my GP tomorrow morning.
0 likes, 17 replies
Anhaga mary94751
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I've been following your story with sympathy for your predicament. Certainly some of your symptoms seem unlike PMR, but could they be side effects of the drugs that have been prescribed? To my mind the sensible thing to do would be to prescribe the moderate dose (15-20 mg) of pred which is used as one of the diagnostic tools. Rapid positive results from this dose, within a very few days, would point to PMR as a likely diagnosis. Your haematologist is wrong about how dangerous steroids are likely to be if you need to be treated for PMR. Unless GCA is involved the dosage should never be very high and one can reduce to a reasonably low level, with care, within a few months. And as the experts on here will point out, untreated inflammation comes with dangers of its own. PMR is supposed to burn out within a few years, but there's no guarantee that it will and in the meantime you should not be left to suffer.
Hugs. <3
mary94751 Anhaga
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EileenH mary94751
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Anhaga mary94751
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Mary, I'm days behind in reading the posts, but I'm pleased to see that you've had great support on this thread. As I was once told when a counter installer made a mess of my brand new kitchen faucet, don't get a counter installer to do the plumbing, even if they say and believe they can!
macas02 mary94751
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Maryx
EileenH mary94751
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"now I have gone private nothing will be paid by NHS"
Who told you that? It isn't true. A good specialist who does private work will offer to add you to their NHS list if it is appropriate.
Google "If I pay for private treatment, how will my NHS care be affected?" for more details.
The haematologist who "says not to take steroids as this will burn out" - is talking rubbish and obviously hasn't a clue. PMR DOES burn out in 75% of patients - but it takes anything from 2 to 6 years, for the rest of us it is even longer. I've had it 13 years, Nefret 16 years.
1mg per kilo is also absolute rubbish and ridiculously high for PMR - the starting dose for PMR should be the lowest effective dose in the range 12.5-25mg, never more than 30mg. 95mg is the sort of dose that might sometimes be used for a patient with visual symptoms in GCA, it is at the top end of the range there too, 60mg is the usual GCA starting dose unless there are visual symptoms.
If you go to this thread
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find a link under the heading "Bristol paper" which is a paper written by top experts in the field to help non-experts manage PMR without recourse to a rheumatologist. They start at 15mg. It is easy to read and is aimed at GPs.
You will find another link to the 2015 Recommendations for the Management of Polymyalgia Rheumatica - a EULAR/ACR collaboration which has a load of recommendations, starting dose is discussed under Recommendations 2 and 3.
What should you do? Show the links I have given you to your GP, they are professional articles/guidelines, tell them the rheumy says you have PMR and need steroids and get a trial of 15-20mg - if that works it is a fair bet the rheumy is correct.
daniel08939 mary94751
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I am amazed at how uniformed many Doctors are on Polymyalgsia Rheumatica and prednisone. In my case for six months they prescribed pain killers that did nothing. They kept telling my that my blood tests were normal and therefore I could not have pmr. Meanwhile I was becoming a crippled, shut in that could barely survive each day.
I finally found a Doctor that said 'Let's see if prednisone helps." It was a miracle. All symptoms vanished the first day. It burned out in three years. Now six years later it is back and the Doctors went through the same "no nothing" we have no idea what it is and once again prednisone made all the symptoms disappea.
muddyooch daniel08939
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daniel08939 mary94751
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Take the prednisone and get on with your life. The pmr symptoms are way worse than the prednisone side affects.
EileenH daniel08939
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mary94751 EileenH
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EileenH mary94751
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Why are you in a quandry? Your GP agrees with my analysis above so it isn't just me saying it. And believe me - that haematologist is talking utter rubbish. He obviously isn't good at rheumatology and was too lazy to even look it up.
Take the 20mg - if it works you are on to a winner. If it doesn't the rheumy may have to think again. But it may take a bit more than 24/48 hours to get a good result - it isn't miraculous for everyone, sometimes it is slower. If there is a lot of bursitis and tendonitis it is far less dramatic - and your clawed hands suggest there may well be a problem there. But other stuff is enough to see if pred makes a difference.
I often suggest taking someone with you when doctors are being apathetic - it is totally wrong that having someone there makes such a difference but hey ho, if that is the way it has to be, so be it.
You are ill and you have been messed about. Five years ago I didn't exactly cut a dashing figure when a sh*%%y little madam made a mess of my discharge and then next day when I went to sort it out was rude enough to tell me I was stopping her having her coffee break. Had the coffee been to hand she'd have had it poured over her but as it was I just stood in the ward corridor and cried. No-one, no-one, asked what was wrong. By the following week I had got my head together - and told the doctor at clinic what had happened. She was disgusted and said she'd deal with it - especially when she discovered the things that hadn't been done that should have been!
mary94751 EileenH
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EileenH mary94751
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mary94751 EileenH
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EileenH mary94751
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Swansea and The Mumbles were a popular day trip when I was a child growing up in Herefordshire! I have a lupus "friend" who lives in Pembrokeshire - even worse there! A GP "with a special interest" is deemed adequate to care for her!
My daughter lives in a flat in Whitby we bought for her to use when she went there as a paramedic. It is ground floor, parking in front of the door, perfect as a retirement place - most of the residents in the building come under that heading - but she has forbidden us to return to the UK and live there, preferably not even for holidays! Yesterday she went from Whitby to Nawton (31 miles) to an elderly patient who had fallen and had a ? head injury, delivered them to Scarborough hospital (30+ miles) and then drove back to base (21 miles). Over 80 miles - just as well it wasn't something serious as the patient had to wait 3/4 hour for her to arrive and another 3/4 hour to get to hospital. And she was over an hour late finishing. We like our current home - 5 mins walk to all the shops you need and 10 min drive to the hospital. Or 5 min walk and train actually into the hospital...
mary94751 EileenH
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