Just an update on my post just over a week ago about not sure if I am having a flare, pain moving to my arms and my holiday.
A week on 10 mg and it has been very up and down.
I managed the 300 mile drive up here without too much difficulty and luckily I was given some help at getting my stuff up the stairs to the flat . I don't think I would have managed to get packed and the car loaded up without increasing the dose.
The holiday has been a bit disappointing at times, as I have only been managing to get out for 2 or 3 hours max each day. Though I have had some nice moments and it has been nice to be by the sea. I think that I will find that it has boosted my morale a bit when I get back, even though I have felt quite limited.
My legs haven't been too bad on the higher dose, although thy still feel pretty wobbly and my arms did respond to the increased dose, but they are still causing me problems. They hurt if I try to lift anything and they feel very weak. On top of that my muscles are getting very tired very easily, and I am sleeping a lot. I am devoid of energy. That means that I have struggled to get out of the flat on some days and there have been 2 or 3 days where I have felt like I haven't taken any pred, at all. But I had taken it when I checked the dosette box. Overall, I would say that I am feeling pretty unwell and still in quite a lot of pain at times, even on 10 mg.
So, it's a good thing that I have an appointment with my GP on Monday. The receptionist was very apologetic that I had to wait, but I was happy with that as I was going on holiday. Though I am not sure how I am going to make the journey back. I have to hope that tomorrow will be a good day.
I think that I am going to have to tell the GP that I don't think that even 10 mg is enough, but I dread the thought of being on a higher dose and having to try to taper down. Really, I'm not sure if I am in a flare, or just not responding to the pred. If it is the latter, then does that mean that there is something else going on?
My GP is very nice and I trust his clinical judgement more than anyone else that I have seen, but still wary that this might take me off on some other track that I'm not comfortable with. Though I can't think what he will make of this. Is there anything that I ought to gen up on before the appointment, do you think? For example, is he likely to suggest trying methotrexate? My gut feeling is that he will probably want to keep me on a higher dose for a bit longer and maybe refer me to a rheumatologist. And my concern there is that I am going to have to go through the whole diagnostic malarkey again and that I will be put on some daft taper again that I'm not going to be able to manage. Anyway, if there is a referral, I plan to ask to be sent to prof Quick's team at L&D.
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Gimme
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The first thing you need to know is that a GP cannot initiate MTX - that is only possible by a specialist. So stop worrying about that for the moment. It sounds as if that is what you need though - referral I mean.
The weather - lower temps and wind - that the NE "enjoys" may well also not have helped. The stress of the journey - which was a major feature for you I suspect? - won't have helped. We do say, holidays are very stressful, even when they are nice and warm and perfect in every way,
Is it possible you have a viral infection? That could fit too.
Thank you for your reply, Pro. Back home now and went to the doc this morning.
Thank you for reassurance re MTX. Makes sense, I hadn't thought of that aspect.
I don't think it was the journey that triggered it, as this has been rumbling along since I went to Mexico in November, and I wasn't feeling well enough to manage another trip away really. Though, I was concerned about the weather forecast of snow on the day that I was meant to be travelling up, and that turned out to be a false alarm, so that shows the pointlessness of worrying. :). I think you are also right to flag about the cold. I think I might need to keep myself a bit warmer at home. The temperature up there was actually a couple of degrees warmer than it was down here last week, funnily enough. I'm actually more in favour of it being virally related, as I have suspected a link for me, for some time, but perhaps post viral, instead of a current infection. I had a nasty cough and cold that went on for weeks, just before I went to Mexico and that was when it all kicked off. And then I have had colds twice since I got back, which took weeks to clear and it seems it might have set it off on the rampage again.
Anyway, went to see my lovely GP this morning. I told him what had been happening and he said that it is so difficult to tell the difference between the PMR and any other inflammatory causes without investigation, but I am the one that knows what PMR feels like and does the issue with my arms feel like it is PMR, because if so, he would go with that initially. I said no doubt, the arms and shoulders feel like the hips and legs did before I went on pred. He seemed more worried about the arms stopping me from swimming and said that we definitely need to get it back under control again. Anyway, upshot is that I am to bump up to 15 mg for a week and then back to 10 mg for a week and he will see me in 2 weeks time to see how I respond and to decide where to go next. I hate the idea of increasing the dose again, but I am satisfied with his advice.
I feel a lot more cheerful, having spoken to the GP. He's the only doc that I have seen that actually seems to understand what is going on with the PMR. A review was long overdue anyway. I forgot to mention to him about the connection with viral infections, but I will mention it when I go again in 2 weeks time.
That summarises what I have thought - the Mexico trip and all around it has had it all bubbling just below the surface and little drips have been adding to it until the bucket overflowed. That is also what we'd say - have a springclean and start dusting but a bit more effectively!! It is also probably what Prof Quick would do for a flare due to overshooting.
Hi Gimme, I leave it to the more experienced on here to advise but am wondering about your future request to be referred to Prof Quick at Luton. Are you a Luton/Dunstable gal? I have been thinking the same but am in Hemel and would normally be referred to Watford GH.
Good luck in any case with your GP appointment , hope you feel better soon. x
I live in Hemel too, but I have been referred to L&D for other things when I asked. Luton is actually closer to where I live than Watford. I've even been referred to Stoke Mandeville for the eye clinic in the past, and I have always thought that you can be referred to the best place for your condition, or depending on waiting lists.
Sorry to hear it’s not been as good an experience as you hoped… good luck for journey home.. and then plenty of TLC… as PMRpro says might well be virus or something…
Thank you, DL. I haven't been ignoring you, I drove home on Saturday, and the rest of the weekend has been taken up with sleep and stuff at home. I've been to see my lovely GP this morning, so I will add a more detailed reply to Pro's message, save writing it twice.
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Holiday update
New to PMR and wondering about prednisone dosage 
could I have your opinion on this 
