finally saw rheumy; felt snarky, then puzzled

Posted , 7 users are following.

HI you all, I finally saw a rheumy and wondered if I should have warned her that I have a very good memory and am quite good with numbers before we talked.  More details below. But then I became puzzled, so I am glad I didn't challenge her but merely listened.

      She had an extremely narrow definition of what a PMR diagnosis needed.  I remembered how often you guys complain about your rheumies, and wondered why they dislike that diagnosis so much. 

         She mentioned a study done there where people were asked to choose between living 10 years longer in pain, or just 1 year longer without pain.  She said 80% of the subjects in the study chose the 10 years in pain.  I immediately chose the 1 year! Then she talked about "the awful side effects" of  prednisone.  Could that be why rheumies don't like the diagnosis?  The thought that most people, apparently, would rather live longer with pain?

       Many so called "side effects" of pharmaceuticals are really due to the disease or other confounding factors, not the medicine.   For example, cataract occurrence is largely age related, so to say that prednisone causes cataracts may be the result of a very poor study that did not adjust for age. As any epidemiologist will tell you, there are lots of crummy studies out there!

         In my case prednisone had absolutely nothing to do with my cataracts, they developed long before.   And it has nothing to do with my bruising as she thought: I have had blue spots caused by enthusiastic dog toenails for 20 years, long before any other problems. 

     In her narrow definition of PMR, she seemed to think one needs a sed rate in the 80s at least (mine was 37).  So my statistical mind asks whether that too is a false correlation. Surely, since there is no definitive test, it is just a matter of opinion. She also noted that I described pain and tenderness rather than stiffness, and thought I should have described stiffness.  There's a difference?? And I had butt pain rather than the hip pain she thought I would need.  So she was not convinced of the diagnosis despite my "dramatic response" to prednisone.  She said nothing about what else it might be.  So maybe that is the big question we have to ask: if it's not PMR, what could it be.  Fortunately she was not opposed to my continuing on prednisone, though she wants to get me off it in the long run.  That is a reasonable.  

         Then I remember she said PMR occurs equally in men and women, but of course it doesn't.  Women get it twice or 3 times as often.   Also the rate of PMR is increasing in Britain.  So my hypothesis is that they have stopped giving women HRT and that is causing the increase.  Both sexes lose hormones with age, but women lose hormones earlier.  So this might well account for gender differences as well as the late age of onset of PMR.   

     Rheumies have a lot more training in the subject that I do, at least I hope they do, and I would really like to understand their opinions more than I do.  Too often interesting scientific papers are not available without an expensive subscription to the specific journal, or a trip to the nearest medical library.

5 likes, 23 replies

23 Replies

Prev
  • Posted

    I guess I'm fortunate. I don't have a rheumy, plus I have a doctor who has said "its your disease not mine" and behaves that way. I respect her opinion and advice, she respects my behaviour and decisions.

    The question "10 years of pain" or "1 year without pain" is for me a purely intellectual persuit that keeps a researcher researching. For me its a silly question not worthy of an answer. It attempts to force "black and white" out of "grey". In reality there are all sorts of shades in between. But ideally "20 years without pain" please.

    I'm not a statistic. I'm an individual. And I know sufficient about statistics and studies and trials to ask "5% of who" and "15% of what". On close examination a headline 90% may be 90% of not a lot, which is even less. I'm cynical and apply critical thinking.

    When I see blood and other quantitative tests I ask for a printout. Then I plot a chart. For my chronic conditions I find it more useful to know if measurements are stable or trending up/down. For many measurements single spot samples for one individual are just a useful indicator not an absolute definitive statistical truth. My statistical understanding comes from industrial quality control. Medicine seems to have some catching up to do.

    • Posted

      Part of the trouble when medics do research is they meet with a statistician who asks "what do you want to show" and they tell them what sample size to recruit and what tests are best. The statistician doesn't know enough biology to get that human beings are a bit wobbly and don't behave like machines. The medics don't understand the stats. 

      One generation of medics was brought up on the new wonder of laboratories and biochemical blood tests in the days when a lot of people were trying to tell you it was "absolute". No it wasn't, it never was and it never can be. Things can still go wrong, even on an automated analyser. We knew 40 years ago that even with the modern magic, trends were all important - but the medics want a one stop answer. Mostly, you can't develop a device to be used by medics that is complex. But they get one result and it is gospel, whether it is abnormal or normal. And all too often they don't know. Junior doctors looked at blood gas results and said they were OK - my granddaughter was circling the drain because of them because they were grossly abnormal. Excuse me - but the lab report SAYS when things are outwith the acceptable.

      Of course its a daft question, 10 years of constant mild pain is one thing, intractable pain another. But we really shouldn't have to know as much as we sometimes do to achieve decent care should we.

  • Posted

    Statisticians often fight over sample size for drugs.  I have. Study design is a compromise with what you would like and what you can afford.  Clinical trials are very expensive, so pharmaceutical companies always want smaller samples.  

           However,  one of the biggest problems is that once a treatment is established and accepted, you can't find good controls.  It becomes unethical to not treat.  For example, if a certain kind of heart surgery is the standard, you cannot withhold that treatment just to do a study.  There is only a narrow window of time when you can do a decent study, if you are lucky enough to have the resources to do so.  So, in the case of prednisone, which is primarily given to PMR and RA patients, there is no comparison group that is of any use.  Consequently there is no way of knowing which adverse events are due to the medication and which are due to the underlying disease.

           But I also know that there is really not a huge effort to analyse adverse events.  These tables are merely counts and comparisons with controls, and the controls may or may not provide a good comparison.  I say that as one who used to put together those tables for the FDA, following their guidelines.  Sometimes the control groups are reasonable, as when you compare the effectiveness of one antibiotic to another.  But, even then, you will read lists of things like "headache", "diarrhea" which are given as side effects for every medication out there! 

         So I definitely sympathize with Julian's comments that she is an individual, not a statistic. Her innate skepticism is wise.

    • Posted

      Exactly. 

      I wouldn't say pred was "primarily" given to PMR and RA patients - there's asthma, adrenal dysplasia, many other inflammatory illnesses of all sorts amongst others. You can try other things with PMR and RA, neither usually kill, but GCA is a different matter as the patient will possibly go blind without pred - and so they must look for things that potentiate the pred action until the cause is identified.

      But there are a couple of very interesting studies in the pipeline.

  • Posted

    I should add that "adverse events" are what lay people call side effects.  Any bad happening during a study is counted as an adverse event.  The cause is not clear and may well be the disease rather than the medication. 
  • Posted

    And another thought.  I just read a paper claiming there is a dose response, that the higher dose of prednisone caused a larger amount of side effects.  However the larger dose of prednisone could be the result of a worsening of the underlying disease, so it is a not a good argument at all. 
  • Posted

    Hello noninoni and fellow sufferers,

    I went to my American rheumy today and said to him that he so far has not acknowledged that I have PMR.  My GP diagnosed it, and I had to show some documentations of prescriptions pointing out that I have PMR.  He was not too happy about me being so outspoken.

    He said, I have RA which I have had for a number of years, but the PMR as of recent is much more painful.....almost screaming pain when a flare hits.

    He did finally agree that ONLY Prednisone helps PMR, and he wanted to know how much I take.  I said 15 mg and showed him the tapering schedule of the Bristol plan.  He hesitantly agreed to the slower tapering schedule. but he would have preferred to.reduce by 5 mg within a week.  NOT GOOD!  Luckily he did not argue with me and prescribed more Prednisone and ordered blood tests. 

    I asked him about the danger of GCA, and he did say if there are vision problems and headaches at the temples to head out to the Emergency room or call 911 right away.

    This was my rheumy experience for today.  My GP is much easier to deal with.

    All the best to everybody and GOOD LUCK with your rheumy.

    Erika

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.