Frustrated at rheumatologist

I say a thank you to my guardian angel that sent me to a GP tht seemed to be able to look at more than one problem at a time.

I had PMR for eight years altogether and must have imbibed a fair bit of Prednisolone in that time and never once did he suggest that I must " get off steroids  ASAP."  He asked me how I felt, made suggestions which I always followed. Sometimes they worked, sometimes not but between us we got there. 

I'm average bright ( retired primary school one time head ). Med. School is far more dificult to get into than teacher training but I sometimes despair of the apparent inability of some clinicians to assess their patients' ability to communicate and, therefor,  of their ability to  give appropriate advice.

just different mental models and different paradigms. Happens in all human endeavours. We have an enormous capacity to pass over info that doesn't match our own paradigm and absorb supporting info.

Its more usual than not that different people with the same evidence arrive at different conclusions and have different models.

Its fairly difficult to change someone's paradigm once cemented in place.

I'm thinking that this doctor is at this point giving consideration to the diagnosis of pre-diabetic.  It makes sense to me that unless the pre-diabetic condition is also addressed, that more pred will be needed than it otherwise would. 

Doctors today are monitored by their empoyers, who compare their patients statistics with norms to judge their performance. Somewhere in the statistical models I think that reducing pred dosage is judged as a better-performing doctor.  When I last visited my rheumi, despite my not having taken his prescribed Plaquenil, he seemed very positive that I had managed to reduce my pred dosage and made no further mention of the plaquenil.

The statistics gathered by these medical groups likely suggest that the effects of higher pred usage is on balance a negative outcome. This might for instance relate to the longer-term effects of the weight gain that patients undergo, that this might not simply go away when the patient no longer needs pred, but then perhaps would need bypass surgery or diabetes care in the years that follow.

I'm not aware of any specific data having to do with dangerous immuno-supressant effects of "moderate" prednisone dosage, but their statistics might show this to also impose at least significant additional risk as pred dosages run higher.

So I'm guessing that it's the sum total of pred's broader (statistical) "side-effects" that implores doctors to force pred dosage reductions, even as many doctors obviously have rather little knowledge of the pmr condition and it's management.

Hopefully we can eventually home in on best ways to address that lack of knowledge in communicating with our doctors, respecting their authority and sensitivity to a degree that doesn't cause un-needed friction between they and their patients.

If this patient for example could perhaps improve their blood numbers pertaining to the pre-diabetic diagnosis, then perhaps also their doctor, like mine, would be more amenable to prescribing a sufficient dosage of pred. Perhaps that might even result from an actual reduced need for the pred. as cytokine activity improved.

Why on earth do you need more pred if someone is pre diabetic? Also who are these "medical groups" who state that higher pred dosages have a negative outcome? You do not stop prescribing often dangerous drugs because of their side effects, you weigh up the pros and cons.

I think most doctors will tell you that the weight gain from steroids will go away when you stop taking them. I know all my doctor friends said that when I was told I needed to take pred and I panicked about weight gain.

If someone is diabetic, the management of steroids is important and the patient should be informed how to help themselves. This should also be true if someone is pre diabetic. I am not sure what improved "blood numbers" you are talking about that would make a doctor more amenable to prescribing more pred. It does not make sense. OK it may be a balancing act, but a doctor should not say because you have not got your blood results correct you cannot have the pred that you need to keep the inflammation at bay, that would be ludicrous.

 

Having a pre-diabetic condition would make a patient's inflammatory response greater in all likelihood, it goes with the territory of elevated insulin levels where the body's liver, muscle and fat cells are said to be "resistant" to insulin, thus requiring higher insulin levels in order to reduce blood sugar. The pre-diabetic condition usually results from the fat cells having reached a point closer to their storage capacity, which is much greater than the storage capacity of the combned liver and muscle tissues (which are the other, more "transient", storage locations for excess blood sugar).

So I would expect that with improvement/reversal of a patient's pre-diabetic condition, that other blood markers such as cytokine activity (in addition to blood sugar and insulin levels) would improve as well, leading to a lower systemic inflammatory response.

I couldn't say how much of an imprvement in PMR activity (and resultant pred dosage requirement) would result from any level of improvement in blood markers for a pre-diabetic condition, but I would add this to the more common reasons for doing all that one can to address a diagnosis of pre-diabetes, and hope for the best.

I have been having particularly low levels of pmr symptoms these last few weeks, in spite of frequent very cold and/or wet weather, but have been doing well even on the days that I don't ride the bike in the morning by simply eating much less in the way of carbohydrates in the morning. I actually don't get very hungry as a result of this much-reduced caloric intake, and the expected (for the days that I don't get out and ride) pmr discomforts have not made their presence known. By thus leaving my liver and muscle cells at a lower carb-saturation level, my pancreas is spared from having to produce as much insulin, and somehow this appears to be having a blunting effect on my pmr activity despite my reduction in exercise activity. I still exercise when I can, but I am definitely getting by with less, which leaves me with a bit more and energy time for work and other activities.

As for the "blood numbers" that a doctor would monitor for a pre-diabetic condition, blood sugar would be number one since insulin levels are not easily tested for. If the patient has been able to make some improvement in this area though, a doctor might then be less fearful of pred's known effect on blood sugar when it comes time for him or her to prescribe more pred versus any additional medication such as mtx, plaquenil or sulfasalazine.

I thought of that I even called another rheumatologists office and was asking questions so she patched me through to someone else who supposedly would know the answers to my questions. I asked her if any of the doctors in the practice new much about PMR well actually I said the full name of the disease and she didn't know what it was. So that told me right away that none of the doctors were specialist at the disease. Otherwise she would have known at least what the disease was or she would have at least heard of it. I just am afraid I'm going to jump from the frying pan Into the Fire. And in looking at the list of rheumatologist we have in this city there is not a lot of choices. I think if I recall that there were only three practices in the city. Each practice having several doctors in them.

Oh my gosh that's worse than my rheumatologist. Mine started me out at 20 mg and then had me drop to 15 mg and then have me drop to 12.5 mg after that it was 10 mg. And surprise of all surprises I had a PMR flare. So I had to go back up to 15 mg. So we started again. And that's where I'm at now and she wants me to do the same thing over again. I really don't think that they realize what they're doing wrong.

I'm not totally against rapid initial reductions in pred dosage, because they can quickly establish what dosage level that the particular patient requires.

I think that the problem is that these doctors (including my rheumi) do not bother to discus with the patient how a recurrance of symptoms (i.e. a flare) should be dealt with (by quickly returning to the last dosage level that managed pmr symptoms).

My rheumi prescribed a straight 15-month reduction to zero mg, which was of course not likely to go smoothly all the way to zero mg!

The Rheumi should have discussed how my recurrance of symptoms (which began at 9mg in my case) should be dealt with, but did not, instead waiting for the patient to schedule another appointment when things "got ugly".  So I suffered many months of lost productivity before finally settling at 5mg, by my own judgement, for a full year.

The only side-benefit of my extended under-medication was that it allowed me to better experience and monitor the cause and effect of my exercise and diet regimens, but that was a long time to suffer and in a word it was costly.

The other failing of this doctor was suggesting that ~2 years was the expected normal recovery period, since this only made me further believe that the 15-month taper was do-able.  ...It wasn't.

I dropped from 20 to 17.5 inicially ( 1mg pills aren't available in Spain) and I had a terrible flare so I went back up to 18.25 and feel fine. Its obvious this rheumi has no idea what he's doing nor any interest in learning.

I am so surprised that these things happen in the UK and the US. In the case of PMR at least, it's all so straight forward as far as the tapering goes.

Another thing I don't understand is why some rheumis push metotrexate right from the beginning with such enthusiasm. I took a one week dose and had sores all the my tongue. It was so uncomfortable that I would have a better quality of life not taking predisone at all .

And of course wouldn't you know my rheumatologist did prescribe Methotrexate when I couldn't get down to 10 mg the first time I tried. And like you I keep getting sores on my tongue. However the last two weeks I did not get sores on my tongue but my tongue is exceptionally sensitive to Flavors. I have to eat the most Bland foods and I have to have all the sauces on the side when I go out to eat in case something is too strong for me. So I told her this so she upped my folic acid saying that would help. But what else does she do? She also upped the dosage of my methotrexate. (Eye roll) I really wish I could find a better rheumatologist one that was very familiar with PMR and not one who's only goal is to get me off of prednisone. I do have someone on my side who has offered to refer me to another rheumatologist butt like I told her I'm just afraid of going from the frying pan Into the Fire. In other words I don't want to go from this rheumatologist and then get to a worst rheumatologist.

I have had a second opinion....but obviously have had to do what he says.....I have felt so ill with different symptoms.....haven`t known if it was pred./flare or something else going on....so he shocked me by saying just before Christmas, I want you t drastically reduce your pred by 1mg each week!... (not normally recommended!).he must have seen the look on my face (I was at 10.5) so I said I suppose like the other rheumie you want me to take MTX to help me along......he said no, that`s the worst thing you could do!.....he did say, it will be unpleasent and painful......so with him saying that, I knew it would be.....the worst has been upset stomach......fatigue......and today lots of low back pain.....I went down to 6mg yesterday.....I`m surprised I`m still on my feet really!

What has always annoyed me the most is.....no two rheumies follow the same path with us PMR patients.....so we get confused what is the right thing to do....

​While I was with the rheumie he asked if I would take part in research to help them make correct diagnosis in future and treat accordingly...to which I readily agreed .....it isn`t easy for them either I suppose, because so many symptoms are the same for all different illnesses.....my sister has RA, and has lots of pain/stiffness/fatigue very much like me.....so lets hope in the future things get clearer for us and them, and we are told correctly when to take/reduce our medication........

Good luck

This is true that there's a few illnesses that can look like PMR but RA is not one of them. With Ra you have joint swelling and PMR does not have that. And then there's fibromyalgia. Fibromyalgia will not respond to prednisone and of course PMR does. Also with fibromyalgia you will have the tender spots that they look for in diagnosis where you won't have that with PMR. My rheumatologist is constantly looking for those pain spots on me. She doesn't find them and she doesn't tell me she's looking for them but I know where they are and I know that's what she's doing. I am still having quite a bit of pain even on the higher dose of prednisone but it's a different kind of pain and it's in specific joints that it makes me think I might have some OA going on in those joints.

Yes  agree on some points....my sister dosn`t have any swelling with RA, she is on a DMARD which thankfully has prevented that....

?I have had fibromyalgia since 1989....so yes the pain is different I knew straight away the PMR pain was something new........and pred does nothing for that.....but I am in no more pain at 6mg this week than I was at 10.5...which is confusing.  I have Osteo in my hips, which gives me the low back pain....it`s a minefield really trying to distinguish what is what.....

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?With having fibro, I cannot tolerate medication...I can just about take 1 parecetamol without dealing with the side effects.....so hope the rheumie I see in 3 weeks will have some suggestions from my blood tests!  He has ordered an MRI scan as well for me.....which I`m glad....so think by having this second opinion he`s trying to rule things out then in!

 

I have an appointment with a new rheumi in Feb. I plan to take him or her a print out of the Bristol study. We really just need a normal doctor who listens and doesn't have a huge ego that renders him incapable of learning anything new.

They have protocols for almost everything, why they can't all follow one for PMR is being me.

RA can present in the early stages appearing just like PMR and it isn't uncommon for a PMR dx to be revised at some later stage - often to late onset RA. And at least 6 of the tender spots in fibro are the same as the ones for myofascial pain syndrome.

And why don't they follow protocols for PMR? To have protocols they need to do studies comparing different ways of using pred - and they haven't been done. So they mostly make it up as they go along...

But does RA pain respond to prednisone in the same way PMR pain does? Because when I had my last flare I jumped from the 10 mg to the 15 mg and within hours my pain was so much better. All but the few areas on my body that are still in pain. Or is it that I might have both.

What's hurting on me is my thumbs mostly and my fingers and my wrists. I also am having a problem with my right foot which has been sn off again on again problem for the last 2 years. But it has been on now for 4 weeks which is been the longest it's hurt ever. She did x-ray and said there was nothing remarkable about it and I quoted that. Although I did have a bone spur but that was on the bottom of the foot. And she said that would not cause the top of my foot to hurt. And interestingly enough my pain is less severe when I have my shoe on.

I have to wonder if having pmr can cause actual RA activity of the sort that gives us sore thumb joints and sore feet?

W/ith autoimmune activity wouldn't it seem likely that what affects one defined condition might also have at least some effect on the other?

Increasing pred dosage slightly was effective for me with both the thumb joint and foot issues, which I had not suffered before pmr. I had actual redness and swelling in my thumb joints at several points during my first year with pmr.

It depends - some of it will improve quickly with pred and it is used in a flare. Often at 15mg the patient who doesn't have PMR will only improve slightly or very slowly - part of the reason for not using high doses to start with as RA does tend to respond to high dose pred. But some people with PMR need higher doses and some with RA manage with lower doses. There are also other forms of inflammatory arthritis. 

I had tendonitis/synovitis in my feet with PMR - but it was there all the time, getting from sitting to standing was awful, they didn't hurt until I put weight on them. If I wore my walking shoes - heavy duty leather Meindls - they hurt a lot less. None of that would show on an x-ray - that would only show joint degradation due to RA and in late onset RA that can be missing or not start for a long time.

The effect in the joints is different on RA and PMR - that is a defining difference I think. And no - there are many different pro-inflammatory cytokines and there are probably several versions of RA which would account for why some people respond to one drug and others don't.

Was the joint problem ever checked for gout? Joint pain in PMR rarely involves heat and redness...

Right Eileen that's why I think it's PMR and not RAI have no swelling no heat nothing to indicate RA.

I might have never even brought it up (my swollen thumb joint) with my rheumi, since it was so directly correlated to my activity level (working with my hands such as trying to twist off a jar lid) and to my pred dosage level.  I did not even see my rheumi for nearly two years after he sent me on my way with my first bottle of pills, since I am permitted to simply order pred refills online from my insurer's own pharmacy.

The redness was the peak of symptoms over a months-long period as I continued reducing 1mg/month down to 5mg, after which I found this site and finally took dosage matters into my own hands and stayed at approximately 5mg for about a full year.