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pmr and diclofenac

Posted , 9 users are following.

daisylazy
daisylazy

A question for Eileen H .I have been taking diclofenac 100ml daily plus 5ml of steroids and this has been keeping me fairly ok since i last posted . What do you think of this as a long term solution .I'm not saying i am perfect but a lot better than i was .Thanks and looking forward to your reply .

0 likes, 10 replies

10 Replies

  • tavidu
    tavidu daisylazy

    Posted

    Hi daisy

    10 years ago I was on Dicloflex and then Diclofenac for shoulder pain. Both are anti-inflamatory and helped but what my doctor did not advise was that they should only be taken for a month not long term. As he saw me as a bit of a pain to him (being new to the practice and unemployed at the time) he kept prescribing them for 5 months and in the end I was rushed to hospital with accute liver and kidney failure which I put down to excessive use of Diclofenac. They did not confirm this as the cause but they did not say that it wasn't either. Eileen can probably advise you but I certainly would not recommend them long term. Good luck.

  • EileenH
    EileenH daisylazy

    Posted

    You may be looking forward to my replay - but I suspect this isn't what you want me to say.  I can't add a lot to what tavidu has said and it certainly isn't a solution I would adopt if there was an alternative - and that alternative includes taking more pred.

    I can only refer you back to the discussion we had on this thread

    [url=patient.info/forums/discuss/polymyalgia-rheumatica-forum-374749?page=0#1822948]patient.info/forums/discuss/polymyalgia-rheumatica-forum-374749?page=0#1822948[/url]

    You are simply NOT on a high enough dose of pred, it is NOT recommended to take pred and NSAIDs at the same time and diclofenac has its own unpleasant range of potential side effects as tavidu points out. If this were to be for a short time maybe it wouldn't be so bad but with PMR we are talking the proverbial piece of string. I have had PMR for nearly 11 years now - fair enough, most people are looking at 4 to 6 years probably, whatever the doctors try to tell you about 2 years or less. That simply isn't true.

    Do you really want keep taking diclofenac for the foreseeable future and risk the other side effects - which increase the longer you take any drug?

    "The most commonly reported side effects of diclofenac (Cataflam, Voltaren-XR) are dyspepsia, nausea, abdominal pain, constipation, headache, dizziness, rash, and drowsiness. More serious (and rarer) reactions include stroke, high blood pressure, GI bleed, and heart attack."

    In the meantime, it is being identified that NSAIDs are being associated with more organ damage than it was originally thought.

    To show I am not being over-careful, this is from a professional reference:

    "NSAIDs may cause an increased risk of serious cardiovascular thrombotic events, myocardial infarction and stroke, which can be fatal. This risk may increase with duration of use. Patients with cardiovascular disease or risk factors for cardiovascular disease may be at greater risk 

    ... NSAIDs cause an increased risk of serious gastrointestinal adverse events including inflammation, bleeding, ulceration, and perforation of the stomach or intestines, which can be fatal. These events can occur at any time during use and without warning symptoms. Elderly patients are at greater risk for serious gastrointestinal events"

    If you have PMR you are already at an increased risk of cardiovascular disease because of the unmanaged inflammation - which remains unmanaged if you are not taking enough pred. And I'm sorry to have to point it out - we do come into the "elderly patient" classification because we are (I assume) mostly over 60 and are suffering from a disease whose incidence is age-related. 

    • IssyR
      IssyR EileenH

      Posted

      Hi Eileen,

      Hope you are good. Eileen i've been wanting to ask you for ages but didn't want to be impertinent. Do you have a medical background?

    • EileenH
      EileenH IssyR

      Posted

      I worked in the NHS (the UK healthcare system) in hospital laboratories for some years where I had to study medical sciences and then I also did a physiology degree at Uni later. I also worked as a research technologist in the NHS in a couple of different research projects. For over 30 years I worked as a German to English medical translator in medical science and medical market research. My husband was a clinical medical scientist running a diagnostic department in a hospital and also did research which I helped with. So yes - for the last 40 years or so I've been immersed in the medical world! One daughter is a qualified nurse and the other a paramedic. Conversations in our family are rather unusual... ;-)
    • daisylazy
      daisylazy EileenH

      Posted

      Thanks Eileen/ Tavidu/  Buffy/ Karen.As of last night no more diclofenac .Am off to GP for an increase in pred .Was totally amazed to hear that you have had PMR for eleven years Eileen .Just wondered if you ever got off pred completely or has it been an up and down journey .Delighted you answered issyR about your background as i was also dying to ask .
    • IssyR
      IssyR EileenH

      Posted

      What a clever lady you are. I was sooo glad to read that as i'm always interested in what you have to say...but also always chastising myself for having more faith in you than my doctor. If you know what i mean...more power to your elbow and thankyou xxxxxx
    • EileenH
      EileenH IssyR

      Posted

      I, together with all the others who are active with the support groups, "specialise" in PMR/GCA - and know a lot about the things that interfere/confuse/mess things up in PMR/GCA from personal experience and the many hours we have spent doing the reading and talking to and working with the doctors who are part of the charities and doing research.

      I - or any of the rest of us - are never a substitute for a good relationship with your family doctor and - hopefully - a rheumatologist.  Our real role is to explain what is going on - and suggest when what is being done isn't either good practice or is not going to work out well. We can't diagnose but we can make suggestions for you to take to a doctor (or other appropriate healthcare professional) that may result in better management and relief of pain.

      All of us have been there ourselves - and that is the big difference. To date I have only met one or two doctors on the forums who have PMR. In one case she was very diasapproving of the role we play, particularly in suggesting complementary therapies which often do result in a lower level of pain. I don't care HOW the pain level is reduced, achieving that is the aim. If conventional medicine can't do it, often complementary therapy can achieve muscle relaxation and a feeling of wellbeing - if I experienced something good and so did others, maybe you will too. It is worth a try though not wasting vast amounts of money you can't afford. I see women spending £25 to have their nails done. I wouldn't - but I am perfectly happy to spend £30 on an hour's session of Bowen therapy which I - and a lot of other PMR/GCA patients - have found relieves certain aspects of our pain very successfully as well as leaving us feeling as uplifted as we might have done after a spa session.

      Another, rather more realistic, former GP admitted that now she has PMR she understands that 1 or 2mg more or less of pred is not the be-all and end all - the dose that is needed is what manages YOUR pain and 1 or 2mg less that doesn't is pointless.

      No, daisylazy - I originally had 5 years of PMR without any pred, it wasn't diagnosed. I was "too young" and my blood markers have never been raised - my ESR has never been above 7 even when I couldn't move without difficulty or get our of bed alone. I "managed" it with visits to an osteopath and a Bowen therapist (wonderful for the "add-ons") plus I went to the gym every morning for aqauaerobics in a warm pool, then I could move but it didn't help the pain. I was freelance so I could choose my own hours - you couldn't do it if you have to work fixed hours - and gym memberships doesn't come cheap either!

      Then I had a major flare and eventually was tried on pred - miracle result in 6 hours!  I've been on pred for 6 years or so but originally I couldn't get below 9mg/day without a return of symptoms. Then I was put on a form of corticosteroid that simply didn't work for me and I had a mega flare. With yet another form of steroid I was able to reduce steadily from 15mg to 5mg over a period of a couple of years. I can manage on 4mg but I don't feel as well, 3.5mg is simply too low and I really struggle - a bit of stiffness that would be bearable but the fatigue is not. I suspect that my adrenal glands aren't waking up - I can't reduce any slower than I do - and maybe I'll be on this sort of dose for a very long time, maybe life. Another lady on here is in the same boat - she's on 5mg for life. It doesn't bother either of us - without it our quality of life would be far worse.

  • Buffy61
    Buffy61 daisylazy

    Posted

    Long term use of NSAIDs is not good. I have chronic renal failure and I would not ever take them. Even a few tablets could be enough to really stuff my kidneys for good! I would increase the prednisone rather than take NSAIDs.
  • karenjaninaz
    karenjaninaz daisylazy

    Posted

    My rheumatologist forbade me to take any NSAIDs like Naprosyn, Advil etc. while taking steroids. Diclofenac is in that same category. There is danger of stomach damage. I am allowed Tylenol though.

    Does your doctor approve?

  • Kdemers
    Kdemers daisylazy

    Posted

    I think Eileen gives excellent advice.  It has been 4 years of both PMR and GCA or cranial arteritis for me--cannot take NSAIDs at all.  Up and down with Prednisone with flairs--Methotrexate was a nightmare.  Now I am on an antiviral and 2 mg of Prednisone hoping to go to none.. and doing well. BUT this inflammation lurks there, or as some researchers say, it is a "smouldering disease".  One is caught between a rock and a hard place:  Prednisone is great but one must always work at tapering slowly and reducing with constanta goal of getting off it.  If I eat excessive  inflammatory foods I have some pain.  The bigest indicator that I am in trouble is scalp tenderness, jaw pain, shoulder pain.  I know exactly when it wants to flair. As stated before, I must worry about another stroke--it was a slight one but a warning that I don't want inflammation of those cranial arteries. We are all different but I agree with Eileen H. for some of us it just doesn't go away in 2 or 3 years.   
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