Possible polymyalgia - steroids prescribed - abdo pain - worried

Posted , 14 users are following.

Hello - new here.  Today the consultant told me that we may be looking at polymyalgia when I described the pain I was in.  I'd originally been seen for anaemia symptoms but scopes & a CT scan haven't revealed anything very much.  However, the level of muscle pain I'm experiencing led the doctor to suggest this possibility.  Went off for more bloods - inflammatory markers and told to come back in 2 weeks.  In the meantime, to take 20 mg of prednisolene a day.

This seems to me to be pretty high when the consultant isn't sure until the blood results are back.  And, as I explained to him, I have quite severe pain in my abdo upper right and occasionally generalised pain in that area. He said that the tummy was another issue and didn't investigate.

I'm thinking of reducing the amount to 15 mg as I am worried about possible side effects when I don't know for certain if it is polymyalgia that I have and, especially, becuase I am worried about the abdo pain. Perhaps I should go to my GP to discuss these worries before making a unilateral decision?  Consultant won't be easy to contact before the 2 weeks is up - and, in fact, he did seem rather dismissive so would rather go down the GP route.

Any thoughts would be much appreciated.

0 likes, 13 replies

13 Replies

  • Posted

    Until PMR was confirmed I wouldnt take any pred.  there are many side effects that can confuse the pains of PMR.  Also pred is a serious steroid and shouldnt be taken unless absolutely necessary.  Assuming that you have PMR, 20mg is not a high dose to start.  I've seen many starting at 40 and even 60mg.  To reduce by 5 mg from 20 probably wont do you any good.  Look into the slow method of reduction.  I am reducing by 1mg a month and, so far, over the last 7 months, no backlash.  I had tried reducing by a greater amount and found the PMR pains back in full force and had to start over.  Good luck
  • Posted

    Oh dear Cerys, poor you.  I think you will get some conflicting opinions here unless Eileen is able to reply.  I was prescribed 15mg as a starting/diagnostic dose and that worked miracles - felt a bit like Lazarus.  20mg is not unusual I believe but more than that as a starting dose would be high and 60mg is the level of dose used for GCA.  I don't think a short course of prednisolone will be a problem to come down from fairly quickly and if the muscle pain subsides considerably that may at least help to solve one of your problems.
  • Posted

    Hi, Cerys, to make decisions by yourself to solve the kind of problem you describe, it seems to me you better avoid to do.

    If you can look for a second opinion from another doctor instead.

    Wishing you well, that you make the best choice which will lead you to the wellbeing you want and deserve.

    Take care.

  • Posted

    It would help if you would describe the kind of muscle pain you have.

     

    The pain of PMR has characteristic qualities and occurs in typical places.  Though the "typical" pattern does not occur in everyone, if you have that type of pain it would support the suggestion of PMR. Actually, PMR affects connective tissue and joints rather than muscles but, boy, does it feel like the muscles are screaming at you.

    Is the "abdominal" pain a whole separate issue?  Why is the doctor ignoring that?

    Did the pain decrease rapidly after going on the prednisone?  That typically occurs in

    PMR (but not always).  

    It should not take 2 weeks to get the results of the blood tests.  Perhaps you could call for the results and discuss the prednisone dose with your GP.  Though (you may have noticed that every statement about PMR includes the phrase "but not in  everyone) the blood tests for inflammatory markers are not high in everyone, so they are not diagnostic, they only support PMR if they are high.  

    • Posted

      To clarify- most people experience a great redcution of pain in response to 15 mg of pred.  In others it takes a higer dose.  But at some dose under 30 mg, the pain should be gone. It took 25 mg in may case.  So if your pain went away with 20mg, that would support a diagnosis of PMR, if not you'd want to try more before excluding PMR.
  • Posted

    Hi there,

    I disagree with Tony about taking Prednisone until PMR is confirmed. Taking 20mgs of pred is a normal way to find out if a person has PMR. By taking Prednisone you will know in a very few days if you have PMR. Taking Prednisone for a short period of time you will not do you any harm. 

    I was given the same advice in the beginning from misinformed doctors and others and suffered unnecesarily. Within two days of taking Pred my pain had subsided and my internist determined that I likely had PMR....he was right.

    If you do not have PMR, then the Prednisone will not make any difference and you can immediately stop taking the Prednisone.

    Good luck in determining what you have and whatever it is, may it be short lived.

    Merry Christmas,

    Shawn

    I have an aggresive type of PMR, having it for three years now and finally made it to 10mgs. 

     

  • Posted

    20 mg isn't that much and in any case you will be tapering down to a less frightening level very soon. If you do have PMR you will feel the benefits in a very short space of time, in my case (I could barely get the tablets out from the packet to my mouth, the pain was that bad, on a scale of 1 to 10 I'd say about 11) within 8 hours I could have climbed trees (I didn't though).

    If you don't have PMR you will taper off even quicker.

    As to the side effects, after the initial hyperactivity which lasted a couple of days I haven't realy suffered anything worse than slightly hairier arms (being a man it's no issue).

    2 weeks seems an awful long wait for blood results, I went to Bournemouth Royal General in the morning and my doctor phoned me in the evening with the results.

    Who says the NHS is slow?

  • Posted

    Shawn and Steve are quite correct - and you are actually quite lucky that you have a doctor who is prepared to make a clinical diagnosis, i.e. on the basis of the symptoms. The blood tests for inflammatory markers are only part of the picture and 1 in 5 patients with PMR never have raised levels and that was the reason I had the pain you have for 5 years because my GP didn't know that.  By giving you pred now he obviously is fairly happy with his suspicion but is checking other things - and giving you the possibility of a relatively pain-free holiday period that includes 2 lots of 3-day weekends. It may not work but it will almost certainly help a lot. I was given 6 weeks of pred to try by my consultant.

    15-20mg is not a high dose, it is moderate, and one of the typical things about PMR is that it ususally responds quite markedly to such a dose, often within hours. On that basis the consultant has possibly used this opportunity to try a recognised way of ruling out some other things and 2 weeks of this sort of dose is often used in inflammatory illnesses. You can take it for 2 weeks and stop almost immediately if the tests show something else and the side effects in this time are not too bad - you may find it difficult to sleep but the rest usually takes longer than that to appear.

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    If you follow this link you will find a load of links to sources of info which will tell you more about PMR. One of them is headed the "Bristol paper" and in it on about the 3rd or 4th page you will see a graph - showing how other sorts of arthritis don't respond in the same way as PMR usually does to this dose of pred where they will often improve a little bit. 

    Your consultant has told you to try it - if you don't you have already criticised his clinical judgement about the diagnosis and also put things back by 2 weeks if he is using your response to pred as a factor in confirming the diagnosis. 

    Don't worry. Take your pred - as a single dose early in the morning is best but I took mine the first day at about 10.15am, others have done it even later. At 4pm I was able to walk down the stairs normally - not one step at a time - and back up the same - not on hands and knees. If your doctor is right it could be the best Christmas present you ever get! It may not work immediately, we are all different, but by New Year you should have about a 70% improvement - that is what the consultant will be looking out for.  

  • Posted

    Hi Cerys, so sorry to hear you might have PMR. Did you get a pretty impressive result fairly soon after taking the pred? In my case it was miraculous. If the steroids make no difference it is possibly not PMR, and you can stop taking them after a week with no problem. A lot of doctors try out a few days of pred to see if they have a miraculous result. 
  • Posted

    Hi Cerys I would not do anything by myself regarding the medication and this is the only thing I know for sure.

    Hope you will be able to set up an appointment to see a doctor

    assim as you can.

    Take care.

  • Posted

    My uncle was diagnosed PMR, but only short time, then they discovered his gallbladder was causing him issues.  He had pain in upper right side of stomach.  They told me to get mine checked, but I only have typical PMR pains. 

    He had surgery and is so much better now.  

  • Posted

    Dear Cerys. Happy Christmas.

    Count yourself lucky that your doctor is trying you on on Pred. 

    If it gives you relief then well done him. If not then you know it Is something else. I am in a small (very small) battle with my Doctor who doesn't believe it is PMR but I am 100% that it is. Have been on Pred for just over a week and the difference is amazing. Just got to get my level of medication right and I'll be sorted. Tale the meds and see how it goes, it will tell you one way or another. Don't worry or have a "downer" with the steroids as they will work, if not, then you will know that it is not PMR. 

    Have a good outlook and I'm sure it will sort itself out.

    Ron

  • Posted

    Hello Cerys,

    In relation to your R sided abdo pain. I have had a couple of experiences with Consultants who are not interested in dealing with anything that does not fit into their area of expertise and they can be quite dismissive. That said I would go back to your GP for further investigations. I concur with all others re the Pred dose. it is not high, Give it a go, see if your pain decreases and if so then your PMR diagnosis sounds correct. Read more posts from this site and you will gain that knowledge and understanding re PMR, Pred and other drugs and make informed decisions re your treatments.

    Thanks

    Kathy

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