I only ask because we seem to have different treatments here and it would be good to compare notes.
Yes I am in Shropshire.
Hi. Yes I live on South Coast. Diagnosed PMR Sept 2016.
Yes. North West England. Diagnosed with PMR about 8 weeks ago. Started on15mg prednisone for 4 weeks then put down to 10mg by GP, stuck it for 3 weeks with worsening symptoms so went up to 12.5. Been on that for a week - seems to be doing the job. Have my first appointment with rheumatologist towards end of July.
North Wales - husband is the one with PMR (but not much use with a keyboard). He was discharged from Medical Assessment unit on 15th June after 2 days of being assessed and seen by number of people and has now been on 40mg prednisolone daily.
Seen OP rheumatology after a week and then temporal artery biopsy 6 days ago, waiing for results and further decision re meds.
Bear in mind that the various NHS trusts could well have different policies I'm aware that with a different medical condition that there's a superior test which is free in England but has to be paid for in Wales.
Different Rheumatologists may well have their own preferred regime.
This is a UK forum so yes, plenty of Brits around! There are far more on the HealthUnlocked forum - run on behalf of PMRGCAuk, the main charitable body for the illnesses. They also have a list of local support groups all over the UK:
http://www.pmrgca.co.uk/groups/
But as Jones says - there are people in the US who use similar approaches to doctors in the UK and mainland Europe - the guidelines are published jointly by ACR and EULAR, the American and European associations of rheumatologists. And two different rhuemies on one hospital will have totally different ideas. About the only constant is that prednisolone is the only real option!
Jones - what superior test? The only thing I know of would possibly be the ultrasound temporal artery scan (other arteries can be looked at too) but that isn't a payment problem really, it is availability of someone trained to do it and it is universally available even in England. It was done in a comparative study against TAB (the biopsy) but it takes several months to learn u/s techniques and that costs money - the NHS doesn't have any... It is done in some places where someone involved in the original study can do it but using a senior consultant to do u/s when they are desperately short of rheumatologists anyway isn't going to happen. Training courses are being done but not enough to roll it out everywhere.
Hi Floramac
I am sorry this is rather a long reply but I can’t really explain my concern regarding Omeprazole with less words!
I also have a condition known as Failed Back Surgery Syndrome and was being treated for a flare up of this earlier this year. As the medication caused a lot of stomach acid I was also prescribed Omeprazole. Within 2 weeks I had all the symptoms of PMR and although I knew the shoulder and arm pain were nothing to do with my back problem, the doctor did not take me seriously until my hands seized up. He then did a blood test, found inflammation , said he would refer me to a rheumatologist and prescribed a short course of Prednisolone. He told me to take 6 a day for 7 days and then stop. They worked like magic and for the first night in 8 weeks I woke up with no pain anywhere! But when I stopped after the 7 days the pain returned as bad as ever. He then prescribed 6 tablets for 5 days, reducing by one tablet every 5 days which would take me up to my appointment at the rheumatology clinic. They gave me an injection and an appointment to return in 9 weeks. Unfortunately the injection is now wearing off and the pain returning. I telephoned the number they have given me and was told the doctor would put a prescription for Prednisolone in the post. She also said that as I needed such a lot of steroid she would write to my GP and ask him to prescribe Omeprazole!! I am convinced Omeprazole was the start of my PMR but the nurse said this was coincidental. A paper in the British Medical Journal would seem to contradict this. Are you taking Omeprazole? Do you have any problems with it?
Kate
Hi Christine
I am sorry this is rather a long reply but I can’t really explain my concern regarding Omeprazole with less words!
I also have a condition known as Failed Back Surgery Syndrome and was being treated for a flare up of this earlier this year. As the medication caused a lot of stomach acid I was also prescribed Omeprazole. Within 2 weeks I had all the symptoms of PMR and although I knew the shoulder and arm pain were nothing to do with my back problem, the doctor did not take me seriously until my hands seized up. He then did a blood test, found inflammation , said he would refer me to a rheumatologist and prescribed a short course of Prednisolone. He told me to take 6 a day for 7 days and then stop. They worked like magic and for the first night in 8 weeks I woke up with no pain anywhere! But when I stopped after the 7 days the pain returned as bad as ever. He then prescribed 6 tablets for 5 days, reducing by one tablet every 5 days which would take me up to my appointment at the rheumatology clinic. They gave me an injection and an appointment to return in 9 weeks. Unfortunately the injection is now wearing off and the pain returning. I telephoned the number they have given me and was told the doctor would put a prescription for Prednisolone in the post. She also said that as I needed such a lot of steroid she would write to my GP and ask him to prescribe Omeprazole!! I am convinced Omeprazole was the start of my PMR but the nurse said this was coincidental. A paper in the British Medical Journal would seem to contradict this. Are you taking Omeprazole? Do you have any problems with it?
Kate
Thanks for your response Ibh. Please see my response to Christine and Floramac. I am unfamiliar with this sort of site and thought I needed to respond to each person individually. That's why I cut and pasted the second reply! I am also recently diagnosed and had my first appointment at the Rheumatolgy clinic at the end of May. Hope yours goes well.
Kate
Hi Jones10939, I often feel sorry for my partner. I know being a carer for a loved one is very difficult.Wish your husband all the best from me.
Kate
Hi Jones 10939, I am quite new to this so I hope that at least it will be an interesting journey!
Kate
Hi EileenH, Thank you for the information. I will certainly follow the link.
Kate
Hi Kate. Oh dear you do have a story. I was lucky that I had a GP who recognised my symptoms, arranged blood tests and started me on Prenisilone. Tapering at my pace with follow ups with him. I started at 15mg had one flare at 7.5 around a year on and went back to 10. I am now on 6mg and tapering at .5mg every 6weeks. So far so good. I was already taking omeprazole for a hiatus hernia and have been taking it for quite a few years.Whether that had any bearing on the PMR I suppose i'll never know. I also take Simvastatin which some say could cause PMR. I personally wonder if it was the flu jab I started having around the time i got all my symptoms. Its a confusing journey. I have only just joined this site and hopefully people will come along with more advice.
Best wishes
Eileen - "different medical condition" was the phrase I used - to illustrate that within the UK there are different policies, whatever the initial problem.
Sorry for any confusion.
Try using ranitidine instead of omeprazole. It has different side effects.
However - how much pred are you on? If the diagnosis is PMR you shouldn't start at more than about 20mg/day, often 15mg is enough. However messign about with the dose as your doctor has done may mean you need a bit more to control the symptoms again. Why on earth is it beyond the wit of some doctors to google the dose for PMR!!!! And then manage it properly...
And sorry Nurse - in my book, if something starts soon after taing a new medication, it gets the blame until proven otherwise. The symptoms of muscle and joint pain are listed (though not as PMR).
Can you give me more details of the BMJ article? Just the title will do - you won't be able to post the link.
My fault - didn't read the whole sentence in one, if you see what I mean!!!!
I have been taking omeprazole for 17 years. My PMR started June 2018. Diagnosed in the September, my blood tests were all clear but my lovely GP listened when I brought up pmr and agreed that blood tests don't always show it. He put me straight on 15 mg pred and told me to ring him within a day or two. It worked in hours so I rang him and we worked out a regime. I have never seen a rhematologist, and not really had a problem with dosage (mainly down to this forum). Had a problem when i happened to see another doc for something else, she insisted I drop from 8 to 5 and within 2 days back to square one. ( I ensure I never see her for anything ). After slow tapering, I am now on 3mg. Just started 2.5 three weeks when I got labyrinthitis so I have stayed on 3. I have had two bone density checks in the last 6 years and all is good. My biggest problem was fatigue, this has slightly eased. If I were you, I would find a doctor who understands PMR! There are so many of us and so much info out there, you would think they would get to grips with it. Sorry you are having such a bad time.
Sorry, that should say
PMR started June 2015!
Statins have been implicated in causing PMR symptoms in some people. Can you stop taking it for a while and see what happens, if you experience improvement?