A disappointing visit to my GP

[Louisepenygraig]

After I saw the rheumatologist earlier this month I had some blood tests done. When I rang the surgery for the results I was told one of the results was a bit high and I needed to make a routine appointment with the doctor. I'd really hoped to make a double appointment but he's a very popular doctor who now only works part time and it was a question of ringing at 8 30 to make an appointment for that day or waiting a couple of weeks. By the time I got through, at about 8.50 the only appointment left was a single one at 5 00 pm!

I went well prepared with questions to ask, on the assumption that he would have had a letter from the rheumy by now. Somehow he caught me on the hop though when he called me into his office - instead of having my list of questions up on my phone I was in the middle of sending an email! To add to that he hadn't heard from the rheumy and was really surprised I'd seen one so soon as just a couple of months ago the waiting list was so long it had been closed for a while. I told him what I could remember from the visit but of course he needs the letter. He was surprised the consultant had suggested methotrexate and said that would be done under the supervision of a specialist but said he could prescribe pregabalin for the fibro - I want to discuss the pros and cons of that more before I agree though and there wasn't really time for that. He was concerned though that my white blood cell count is raised as well as my platelets. Also although my ESR has dropped again now (It was rising in spite of increased steroids) it isn't down to the level it was after I was first on steroids. He asked a lot of questions about my general health so I think is trying to work out if there is anything else going on. I have to have another blood test and see him again in 6 weeks. In the meantime he suggested I check with the surgery from time to time to see if they've had the letter and have a phone consultation in the interim.

The good news is I've been tapering from 15 to 14 and will start going down to 13 next week and that seems to be going smoothly so far. When I'm tapering it does at least feel like progress!

The picture above is of a small garden I'm making outside the cabin my husband and I use as a living room for 8 months of the year. I'm trying to make it quite slowly and carefully and keep it as something I can keep on top of. I was feeling quite pleased with myself as I'd managed to start marking the edge with stones. The brown in the picture is grass cuttings that had been put down as mulch and should all be the garden side of the stones but the chickens don't understand such little niceties! I try now to concentrate on the achievement of moving a few stones instead of thinking how little I can do before I've overdone things!

[SheffieldJane]

I love your pretty little garden. I am sorry that you geared up for a GP’s appointment and it felt like a let down. It seems to me that you achieved as much as anyone could, given the time restraint and the lack of Rheumatologist letter. 2 months is ridiculous, I would be chasing it up. Your taper is going well. All manner of things can impact on your blood tests, let’s hope it resolves itself. How you feel is key. I would think long and hard about the two drugs you’ve been offered. You seem to be doing so well.

[PMRpro Ambassador in reply to SheffieldJane]

It's August - the staff in the NHS are young-ish and have school-age children. They get holidays too - well, clerical staff do. Paramedics don't so much - they still pick up holidaymakers who drank too much or fell off a cliff.

[PMRpro Ambassador]

Your white cell count is probably raised because you are on pred - it is a well known side effect (and frankly, he should know that). Your neutrophil level will also be raised - and that raises the total count.

And if you had a flare - the ESR may take a long while to fall unless you are on enough pred. And you probably aren't (sorry) AND you are reducing at the same time.

[Louisepenygraig in reply to PMRpro]

I was on 20mg for a couple of weeks then down to 15 initially - in April 2017 and my ESR fell dramatically then. I can't remember the figures but it went from something like sixty something down into the teens. I then reduced too quickly (I hadn't found this forum then) and went down to 10 then back up to 12.5 I was fine on 12.5 and, probably 12 but not able to get any lower. I think this is why the consultant has suggested methotrexate. He said to come down 1 at a time until 12 and then 1/2 mg a time after that. He didn't suggest a time schedule but I'm using Dorset Lady's one for now. I might use dead slow nearly stop when it comes to the 1/2 mg reduction as he suggested taking a 1mg different dose each day, i.e 11 one day 10 the next, to manage the halves.

I may be wrong but I'd got the impression from somewhere that the possible long term effects of the steroids are much reduced below 10mg so i have that in my mind as the magic figure I'd like to get down to, or below!

[PMRpro Ambassador in reply to Louisepenygraig]

I don't think anywhere fixes on a dose that is the point side effects become less - the research published recently says "PMR doses"

medpagetoday.com/rheumatolo...

but it will vary from person to person because we don't all absorb the same amount and also react differently to steroids in general as well as specific steroids. I had no problems with prednisolone, methyl prednisolone was awful and prednisone is again no problem. I recently took methotrexate (mtx) for 4 weeks in addition to the prednisone I already take. While I was on mtx I noticed worse so-called steroid side effects - hunger, the sweats were worse, my hair fell out, I bruised more, the fatigue was awful. I gained weight - I didn't have the usual mtx nausea - and the rheumy was surprised, other than the hair loss these are not said to be mtx side-effects. But the mtx seemed to intensify pred side effects - whatever.

Yes, I understand why your rheumy wants you to try mtx because to be stuck at 12.5mg for 15 months is probably unusual. It took me 4 years to get reliably below 10mg but they do panic less about 10mg. But your reductions have probably added to your problems - you got into a yoyo pattern and that is known to cause problems.

Do your problems with a reduction start as soon as you reduce or do they take a few days to appear? And when you reduce do you take notice of how much you do until you have settled at a new dose?

[Louisepenygraig in reply to PMRpro]

Started a reply and lost it so I'll come back to it tomorrow!

[mega in reply to Louisepenygraig]

I sympathise. Me too, as they say. Mine was on another subject and pretty long, as well. No heart to repeat it all at 9.0'clock on a Sunday evening.

[Louisepenygraig in reply to PMRpro]

Thank you. I have mixed feelings about the methotrexate but I know that some people don't have problems with it so I'm willing to give it a go. Thanks for sharing that study again, I've read it before so not too worried myself about the steroids, especially as I don't seem to have too much in the way of side effects. I am developing a cataract but I expected that to happen eventually anyway. I think I'll print the article out to show to my GP.

With regard to your questions about my symptoms I'm not sure. I usually get some withdrawal symptoms as soon as I drop the dose but I'm not sure really of the pattern. I'll try to monitor myself more carefully from now. The questions got me thinking and I've decided to stay on 14mg for a week now instead. Had a busy weekend including a 2 hour journey plus overnight stay to celebrate a cousins 70th birthday. It was all good fun and I took it all as easily as I could but still ended up spending all day in bed yesterday! It would have been stupid to have carried on with the reduction anyway. I just have to decide now if I'm having a fibro flare or a PMR flare (or both) and does it matter anyway! It's encouraging, for me, that it took you so long to get below 10. Did you have CGA?

A recent twist to my story is that I had a phone call from the surgery yesterday to say that my GP has prescribed amitriptyline for my fibromyalgia. Again I'm not altogether sure whether I want to add yet another medication but am willing to give it a try because if it reduces the fibro symptoms it might make it easier to tell what's happening with the PMR.

[PMRpro Ambassador in reply to Louisepenygraig]

I didn't officially have GCA no, just PMR symptoms and a magic response to 15mg pred but I did briefly have jaw claudication and scalp pain as well as thigh claudication if I did too much leg work in the gym. In retrospect a couple of rheumatologists agree I almost certainly had at least large vessel vasculitis and possibly GCA affecting some cranial arteries - they do overlap quite a bit:

academic.oup.com/rheumatolo...

Yes - I have said for some time that IF you can take methotrexate without problems it is worth trying. So I did - never again!! There is a study done by the PMR King in Italy which found that while using mtx may allow patients to take a bit less pred, it takes a year to show an effect and when they followed it up 5 years later, all patients had similar pred side effects (so-called) whether they had taken mtx or not. So in my book - why bother?

[Louisepenygraig in reply to PMRpro]

I wasn't sure if you had GCA or not. I possibly get you and DorsetLady confused sometimes! I've wondered if my problem is may be large vessel vaculitis, more than PMR and may bring this up next time I see the rheumy. Still no letter from the rheumy so any further medication is on hold until then

[PMRpro Ambassador in reply to Louisepenygraig]

They are all much the same - just different points on a spectrum. The name alters just according to the size of artery and where it is.

[Rugger]

Hi Louise, in spite of your frustration, I feel you covered a lot in the standard 10 minute appointment. I'm seeing my GP on Tuesday and am gearing myself up for a whistle stop tour of my issues! I take my notes on paper, not electronically. The moral of your tale is "Don't send emails from the doctor's waiting room"!

You could ring the Rheumatologist's secretary and ask for a copy of the letter to be sent direct to you. My Rheumatologist copies me in when she writes to my GP.

Lovely borage - I'm sure the bees have appreciated it. I'm collecting my seeds now the flowers are fading.

[Louisepenygraig in reply to Rugger]

I don't usually, I just got distracted this time - I'll know better next time! My hand writing is really bad (and always has been) and I can never find pen and paper when I want them so I do nearly everything on my phone these days.

I haven't looked for bees on the borage but I will next time I go out there.