Anyone living in Britain?

Posted , 8 users are following.

I only ask because we seem to have different treatments here and it would be good to compare notes.

0 likes, 28 replies

Report Reply

28 Replies

Next
  • Posted

    Yes I am in Shropshire.
    Report Reply
    • Posted

      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

       

      Report Reply
    • Posted

      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. 

      Report Reply
    • Posted

      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.

      Report Reply
    • Posted

      I haven't started the Omeprazole  yet.  I have to see my GP a week tomorrow by which time he should have received a letter from the rheumatology clinic, which will suggest he prescribe me with something to protect my stomach and a calcium medication to protect my bones. I am taking a calcium supplement but seemingly this is not enough.  I will ask my GP about Ranitidine.

      The article that convinced me Omeprazole was causing my problems was called Drug Points: Arthralgias and omeprazole  I expected my symptoms to pass after a couple of weeks but they didn't. I still wonder if the omeprazol could have triggered the PMR but I guess I'll never know.

      The steroid injection wore off after 4 weeks and I am back in pain and feeling unwell.

      The rheumatolgy clinic are sending me a prescription for Prednisolone in the post which I should receive tomorrow. That will be for 10mg a day.

      Moderator comment: I have removed the link(s) directing to site(s) as they are broken. If users want this information please use the Private Message service to request the details.

      Report Reply
    • Posted

      I haven’t started the omeprazole yet.  I have to see my GP a week tomorrow by which time he should have received a letter from the rheumatology clinic.  This will suggest he prescribe me with something to protect my stomach and a calcium medication to protect my bones. I am taking a calcium supplement but seemingly this is not enough.  I will ask my GP about Ranitidine.

      The article that convinced me my problem was caused by Omeprazole is called Drug Points: Arthralgias and omeprazole. I expected my symptoms to pass after a couple of weeks but they didn’t. I still wonder if the Omeprazole triggered the PMR. Guess I’ll never know!

      The steroid injection wore off after 4 weeks and I am back in pain and feeing unwell. The rheumatology clinic are sending me a prescription for Prednisolone in the post which I should receive tomorrow.  That will be for 10mg a day.

      Report Reply
    • Posted

      Thanks. It just shows the difference having a GP who is prepared to listen and believe that after all these years we do know something about our own bodies!!

      I am now gathering lots of information to take with me to my next appointment a week tomorrow. 

      I am glad to hear that you have improved - do you take medication for your bones? 

      Report Reply
    • Posted

      I hope 10mg is enough - but that is not a very high dose, a usual starting dose would be 15 or 20mg. At that sort of dose you may find that just taking it with a meal or even yoghurt has been enough for many people! 

      Are they going to say you need a bisphosphonate? Before starting that say you wish to have a dexascan to see if it is needed. Many of us have only ever taken calcium and vit D (you also need your vit D level checked) - I had been at above 10mg for well over 7 years and there had been almost no change in my bone density. The latest guidelines are that bisphosphonates should not be used for more than a few years (longer term use can lead to cracks forming in the bones and a risk of different types of fracture) - and many of us believe they should only be used when needed, not "just in case".

      Anhaga on this forum is the go-to for advice on how to increase bone density without using bisphosphonates - by using diet, supplements and exercise.

      Report Reply
    • Posted

      Thanks for this. I will check it out.  I am reluctant to take anything more than I have to.

      Because of my existing back problem I can't do the sort of exercise needed to keep bones strong but I will ask for a scan to be sure they are OK..

      Fingers crossed that 10mg  will be enough. My prescription didn't arrive this morning but I have a few left from before I saw the rheumatologist so I took 10mg yesterday and today. I already feel a lot better!

      Report Reply
  • Posted

    Hi. Yes I live on South Coast. Diagnosed PMR Sept 2016.
    Report Reply
    • Posted

      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

       

      Report Reply
    • Posted

      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

      Report Reply
    • Posted

      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?  
      Report Reply
    • Posted

      I think you can also experience some rebound if you stop taking omeprazole all at once.  Have any other medications worked for your pre-existing condition, ranitidine, for example?  Omeprazole also, unfortunately, contributes to bone thinning, so not a good combination with pred.  

       

      Report Reply
    • Posted

      Hi Christine, I understand it is recommended not to take Simvastatin with steroids. I believe Pfizer even put it on their website somewhere. I was talking to a guy who worked for them and he said the same thing. This could be anecdotal of course.
      Report Reply

Join this discussion or start a new one?

New Discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.