Had a six month check up scheduled for later this August but I've been told it's cancelled. Finally got a call-back: one appointment available in 45 minutes (too far away - not enough time to make it), another available in October, when we'll be in the UK, and then nothing until January, when we'll be in Florida for the winter. At this rate, it looks like I may be able to see her in April of 2024, exactly a year after my last visit. Definitely first-world problems, I realize, but I'm flummoxed by the attitude. She's the one who cancelled the appointment - I have no idea why - but now I'm out any oversight until next April? What on earth is wrong with our (USA) medical system? She and I do have a little history - she feels that two years is the maximum time to have PMR (that was last September)- and that my numbers are good so I don't have it any more and I'm just being a weenie about tapering:("You know you're going to be in pain and you'll just have to live with it" kind of attitude. She's also interested in finding out what's "really wrong" since she knows it can't be PMR- sigh.) My GP recognizes that "of course my numbers are good - I'm on prednisone." Time to simply find another rheumy? What say you all?
Abandoned?: Had a six month check up scheduled for... - PMRGCAuk
Abandoned?
Why are some of our doctors so wrong?
I believe it's called standard of care - and woe betide those docs who don't go along with it.
Isn’t that supposed to read ‘lack of standard of care’?
Agree that the appointment on same day as phone call was impossible to make, but you were offered 2 other dates. The fact you cannot make was your choice, not the fault of the system nor your doctor.
In some situations in the UK, if you decline more than one specialist’s appointment you go to the bottom of the list. Fact of overwhelmed health system.
As she’s one of the “PMR only lasts 2 year brigade” you’d probably be better off finding another Rheumy.
No, I was only offered one other date - in October. No other available. That said, I do agree with your assessment that I should find another rheumy.
And January you said.
She was booking in January but again, we're not going to be here.
So you WERE offered 2 dates - it isn't her fault if you are travelling is it?
Been seeing her for two years and for the last 15 years we've spent the three winter months in warm weather. She canceled the appointment - not me - and she was the one who insisted she see me in August. I assume she'll see me in April if I haven't just given up on her. I do think my husband's health is important - not that it's her problem ; he's the reason we go south for those three months. The one thing she is good for (so far) is renewing my prednisone prescription without a visit. All done through MyChart and always done promptly. But I think you all are right - no need to see her if my GP will take it on.
"another available in October, when we'll be in the UK, and then nothing until January when we'll be in Florida for the winter*Have to agree with DL on this one. Do you need a Rheumy if your own GP is good. If you do then definitely time for a new one who understands PMR.
In the UK you'd be fine - you have a sensible GP who understands and you wouldn't NEED a rheumy. In fact, with her beliefs, you are probably better off NOT seeing her.
There is a world shortage of rheumatologists - and to be fair, although the same day appointment was pushing it a bit you were offered alternatives. Here in northern Italy my rheumy says 6 months to next appointment and they are stuggling to find one - he does see patients who really must be seen by fitting them in after hours. Unlike the US system, he doesn't get paid for that though, he has a salary that covers it.
I would wager a months pay, little as that is, that currently it would be easier to get an audience with King Charles that get a rheumy appointment and, in some cases, a GP appointment.
Well that reply cracked me right up . . . not that I'm really interested in talking to Charles.
Thanks for the laugh!
So far GP appts. in the US - or at least in our area - aren't that hard to come by. Rheumy is another story though.
I am in the UK and have not seen my Rheumatologist in well over a year also. No appointments and clinics rushed off their feet. When l did get to the clinic it was running 90 minutes late and l saw the Rheumatologist for all of ten minutes.
A few months ago l received a letter via the MyChart system from a consultant l had never seen before asking me to write a letter outlining my current status, ie what meds l was taking, how was l feeling, any side effects etc, the request also stated that if l declined to carry out this task or missed the stated deadline, l would risk being taken off my consultants list.
It would seem this new rheumatologist has been brought in to try and clear the backlog.
When he wrote back, he recommended blood tests, a face to face appointment and a Dexta scan.
That was months ago and thus far l have had only the scan.
I see no one, am monitored by no one, get no bloods done or adrenal function checked. l just keep on taking the Prednisone and basically self medicate. I have all sorts of side effects now and would like to stop taking it, but you can’t just stop. I want to explore alternatives but,
My GP will not intervene, as l am under the care of a consultant? it doesn’t seem to matter that l never see him. I too feel abandoned..
The GP is out of order - they are your first point of contact even while under the rheumy. However, they can't help with regard to alternatives, they are specialist's realm.
However - tell us a bit more, what dose are you on, what side effects are bothering you and maybe we can help with suggestions. There is a mountain of experience and informed help here.
Unless you are down to 3mg or so there is little or no point in checking adrenal function because the pred dose interferes. If you feel OK, there isn't anything to be done anyway, only low pred dose will allow adrenal function to return and it is a stage to get through while being aware of the risks of adrenal insufficiency. If you are down to adrenal territory, then there is not a lot of point in seeking alternatives, there is no alternative to prednisolone and the only option is adding a DMARD such as methotrexate or leflunomide, both of which have potential adverse effects of their own and which are not guaranteed to work to allow you to reduce the pred any further. If they work they may be very good but they work only for a small proportion of patients.
I am currently taking 9mg of Pred, the max dose l have ever taken was 15mg. I don’t seem able to get much past 10mg before the symptoms start to creep back.
I think my maintenance dose is 12mg, but l do try to taper off at 1mg per month. I do sometimes need to raise the dose back up, if the pains etc become too much.
As for side effects, moonface, excess facial hair growth, spotty skin, weight gain, bruising and very slow to heal, sudden bouts of IBS like tummy troubles, tinnitus, agitation and feeling angry.
My Dexa scan results were not great either. I also have strong painkillers to take as and when.
Do the painkillers do anything positive at all? In PMR they almost never do.
At 9mg there is no adrenal function in terms of cortisol at least to monitor. There is some way to go before you need to worry about that.
It would probably be worth considering staying at 10mg for a while - getting into a yoyo pattern often makes subsequent reductions harder. It took me over 4 years to get below 10mg, though - when you said "several years" how long did you mean?
Have the headaches you complained of a few months ago improved?
The primary advice we given everyone is cut your carbs - it may be drastically, but above all processed carbs, added sugar and limit fruit. That really helps the weight gain - and moderating the weight gain also helps the moonface becoming too bad for most. Sugar is also very pro-inflammatory and cutting it can improve many symptoms.
'roid rage is common - but believe me when I say that PMR itself can cause agitation and anger! I could fly off the handle for minor upsets in the 5 years I had PMR without pred. I also gained a lot of weight - and lost it while on 10-15mg pred.
What other medication are you on? It isn't always pred to blame.
Facial hair - oh yes!!! I was on methyl pred for about 6 months - it was awful. I gain a load more weight and developed a wonderful black beard! It disappeared when I was switched back to prednisone but during its peak I discover using my epilator was far and away the best solution once I got used to stinging at the start.
But do put up a new post and ask how others have dealt with the adverse effects - even knowing you aren't the only one with a problem really can make it feel less major ...
In your previous post on this forum, you said you'd been up to 20mg... and had been on Pred a long time... do wonder if you have something else going on and it's not just PMR, unfortunately there isn't much on your profile to give a clue.
. As PMRpro says if you raise a new post - and give more details, you'll get more answers...
Yes you are correct that l did say 20mg but l only took that for 5 days then down to 15mg.
The reason was that my Rheumatologist wanted to see if the Pred did anything to help.
I don’t think he has ever been convinced that l have PMR due to the fact that my blood tests don’t show the markers he expects. But l think l have seen posts from others with PMR who say that their blood markers don’t show up the way they should, but their symptoms tally?
Yes the painkillers do help, but as you suspected l have other stuff going on as well.
I think it’s a combination of issues, including RLS, degenerative disks in beck and lower spine, l also have nerve damage as the result of surgery linked to breast cancer. The latter has left me with both Horners and Harlequin syndrome. I guess when you write it down, it isn’t that surprising that l don’t feel so great 😂
Sorry - not quite right. I've never been on 20 mg and in my only post I said I'd had peripheral neuropathy for several years - not PMR. That lovely addition started in September of 2020 and I think was exacerbated by a case of systemic poison ivy, for which I was put on steroids - the ten day course. Cured the PI but played hell with what turned out to be PMR - not the shoulder problem I thought I had. I was started on 15 mgs of prednisone - 10 in the morning, 5 at night - and pretty much left alone for the next couple of years (Covid years). In the meantime, my long-term GP retired; it was his nurse who diagnosed and treated the PMR via a tele-interview - she ordered bloodwork, listened to my problems, and said that's what I had. Given the blood work, I feel quite certain she was absolutely right. The relief from the prednisone was immediate; prior to taking it, I'd been sleeping sitting up at night because lying in bed for longer than five minutes made my shoulder girdle ache so badly, I couldn't sleep at all. Perhaps I should add this info to my bio?
Actually my reply was to Legsandmore - you can see that just above the reply... not to you... and it does get a bit confusing, because as the original poster you are obviously notified of every reply...
.. and yes please add the above info to your bio, we can then refer to it any any time and you don't need to repeat it ... win/win situation.
Thanks.
Thanks for replying - never noticed that "in reply to" before although to be fair, I did get an email saying that you'd replied to my post and the only thing in the email was your reply to Legsandmore (without any notification that that's who the reply was to), so I simply assumed - since the header in my email said DorsetLady replied to you in Abandoned? - that you had replied to me. Will be more careful in the future. and I will add the info to my bio . . . so that I can remember the history. Sigh.
No need to apologise, as I said it is a bit confusing at times until you get used to the format…
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