I grumbled a couple of months ago about my doctor who told me to finish up my pred pills then stop and see what happened. I did in fact have enough pills to almost exactly be able to taper using four day start of DSNS. So I thought i'd try. After all, maybe I am in remission and only feeling withdrawal symptoms when I taper? Well, that attempt didn't go well. Got halfway through before giving up. Back to 2 mg for a couple of days, then a return to 1.5. After a little while I tried again, using 6 day start. Same problem, only faster this time. I've been back at 1.5 for a couple of weeks now and feeling better. But, of course, the pills were running out so I needed a prescription renewal.
But my doctor is away for the month and there is a locum. I saw this lovely person today. She asked me questions, gave me a prescription and a refill for enough pills to last for maybe a year if I need them, and suggested that I have the CRP checked instead of ESR (they won't do both here at the same time if it's just followup). She then suggested that I go back and see her before her term is up (end of August) and she will discuss the CRP with me. It was in fact done last time, again by a substitute doctor, and somewhat elevated, but as it was so much lower than at initial diagnosis my GP seemed to think nothing of it. This locum has multiple sclerosis so, as I remarked to her, has a very good understanding of auto immune diseases. She agreed, although wished it wasn't because of her MS! I came away feeling how very nice it was to spend time with someone who seemed interested, took time to look through back test results and see the changes, and ask me questions.
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HeronNS
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Sorry to hear about your setback, but I guess you knew it might happen that way - but nevertheless very disappointing.
Pleased to hear about how different your locum was - and yes the fact that she has MS herself probably does make her a better doctor- listening to patients more and seeing beyond face value. She sounds very sensible - pity she's only a locum.
Take care, and do things in your own time now...and good luck.
Locums really can be gems - and very useful to boot! And yes - having an autoimmune disorder does show them a side of their patients most doctors don't get. Met a lovely rheumy at the OMERACT meeting who has psoriatric arthritis - she said it has totally changed how she sees her patients.
I think for my second, and unfortunately last, appointment I'll make a short list of the things regular gp dismissed without discussion, especially the irregular heartbeat, and see if she has some suggestions how to proceed. I think an irregular heartbeat can put one at higher risk for stroke, can't it? I'm sure my "cure" of consuming more salt is probably not a great idea!
Depends on the cause of the arrythmia - but it needs proper investigation and, if required, management. You can't just blame pred or say it doesn't matter...
Hope you feel well enough to get back onto tapering prednisolone soon.
Pleased to hear a positive story of a locum. I saw my great GP today and she said I would be seeing a locum for 6 months as she is taking a job change 'break'. I really get on well with the GP, knowledgeable, efficient, common sense and a sense of humour. She also treats symptoms not just bloods and has fixed all my 'side issues'.
So this locum tells me CRP is 19 (up slightly from last time) and I should take 5 mg for two weeks and have the test run again. Then I will be seeing my regular GP, although what she'll do with the info I don't know. She never even used that test. But locum said number should be, I forget exactly, down at least to about nine, I think she said. Or maybe it was four. She also looked at me with a bit of a twinkle and said she wondered if I would take 5 mg! Kind of wondering that myself. Maybe 3 would be enough. That's double current dose. What do y'all think?
Had the appointment somewhat unexpectedly as I went in for something completely different, and wasn't prepared with my questions, nor, obviously, did I wield my pencil to record instructions, expecting to see her next week, but that appointment is now cancelled. So I didn't get to ask about my other concerns. Sigh.
Oh, my Vitamin D level is now normal, 102, down from spring 2016, and up from spring this year, so looks like 1000 IU is the right dose for me.
Hi PMRpro. Thanks for suggestion. I was thinking that myself. Actually had to go back to 3 the other day because those two attempts to get to 1 really had been hard on me. I took 3/2.5/2 then back to 1.5 where I've been for several days. Also started getting light therapy again after tapering off that for about two months. It took a couple of sessions but the last two days I've felt better than I have for a while! Apparently increase in CRP was predictable result of attempt to reduce before I was ready. Finally have decided that this is where I stay for a while, and at least I can tell GP whenever I see her again that I did try and actually have blood results to prove what happened.
Just a quick update. My GP is back and in a sympathetic frame of mind. It might have helped that this time I wasn't already seated in the examination room, and she saw me stand up and walk after being seated in the waiting room for half an hour 😩 . Anyway, CRP is better, but still too high, and she actually asked me how I had been feeling, emphasizing that symptoms trump numbers. She suggested I go up to 4mg, definitely not try to reduce right now, and see her in a month! ☺
She's always said that, to the point of dismissing the numbers and not actually asking about my symptoms as I reduced. I do function very well, but seldom completely painfree. But I do feel more supported today than I have for a while.
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