Advice before telephone appointment

[tempusfugi]

Hello everyone,

I'd appreciate some thoughts on my present situation before I speak to my Medical Centre - no not a real live Dr, that dream happened BC (before Covid) - it will be a Physician's Assistant, who I have not spoken to before, apparently. The appointment is next Tuesday at 0930 hrs.

I am now taking 8 mg of Pred daily, after a V long taper from 8.5. Last time I did this, the Medical Centre suggested I went up to 10 mg because I had been getting pins and needles and pain in my hands and particularly in my right wrist (I am right handed). And last time I saw my rheumie (February this year), he suggested, in his report, that I might have a case of mild Carpal Tunnel Syndrome). Since then I have been tapering slowly, as I say. I think I was on 9 mg in February when I spoke to rheumie. He wants me to get off steroids more quickly and has suggested Methotrexate, but that's another story!

So, to get to the point, the pins and needles/pain has now extended up both arms towards the shoulders. Since I've been on 8 mg full time, the pain in the arms has become severe specifically at night in bed, such that I've been getting up, making tea, filling a hot water bottle and taking a paracetamol in the middle of the night. A sort of comfort but not really helping, to be honest.

This week my brother has come to stay and, to be frank, I've overdone things, I know. After ALL I've read on this (amazing) forum about not doing so, I've still done too much! Today, I'm all in. Feeling low and tearful. Legs all wobbly, appetite zilch, and arms still v painful when I lie down. I've found it sooo difficult to admit that I need to increase my dose, at least I think I do. I thought I'd assimilated all advice on not racing to get to zero - I have, I'm sure, but it still feels disappointing!

What should I tell the Physician's Assistant on Tuesday next? I want to get some points to make down on paper and forceful ones at that. Also would you lovely peeps advise me to go back up to 8.5 mg? This isn't a flare, I feel, and nothing like the original grinding PMR pain but I simply have to do something soon about the pain in my arms.

I can't believe I've written that essay. Obviously no good at precis! Any thoughts gratefully received...❤️

[DorsetLady PMRGCAuk volunteer]

Could try 8.5mg - and hope it’s enough…not sure it will be though…but you won’t know until you try…And there is nothing wrong it admitting you may need a little extra - well not to us… we fully understand.

Would say feeling low, tearful, loss of appetite- and maybe wobbly legs could be adrenals struggling to cope last few days of overactivity….

Just make a few bullet points on what you’ve told us re aches/pains etc and what helps and what doesn’t.

[tempusfugi in reply to DorsetLady]

Thank you, DorsetLady, for your advice. Will do as you say re telephone call. Will stay on 8 mg for the moment.

Just as an addendum to this, my poor friend who was diagnosed a couuple of months after me last year and was doing well in tapering, (she was about to stop taking Pred altogether) told me yesterday that she has what she supposes is a flare up. Both arms and hip girdle are painful, suddenly. I had a feeling this was going to happen, as she had a painful upper arm t'other week but she has been so determined to come off steroids, that I felt I had to let her go her own way, as twere. I felt it was too quick though.

[PMRpro Ambassador in reply to tempusfugi]

The speed of the taper is fine as long as there is enough time to see you are still OK - and she;s actually really lucky in that she obviously needs only a VERY low dose, well under 5mg and probably only 1 or 2mg - BUT she needs it for longer. She has found her "lowest effective dose" - and you find it by overshooting and then going back. It's easy for those of us who did chemistry at school to understand - even if it wasn't yesterday - but not quite so obvious if you didn't.

Just hope her GP doesn't panic and send her too high to sort it out.

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

Hope you advised her what to do re flare -politely of course😊- and good luck with phone call

[PMRpro Ambassador]

I'd be inclined to wonder about nerve entrapment and higher than the carpal tunnel - which fingers is it?

[tempusfugi in reply to PMRpro]

Thank you PMRpro. I am thinking (and kinda hoping) that you might be right about nerve entrapment. All fingers in both hands appear to be affected, not just the usual carpal tunnel ones. Even when they stop tingling the fingers feel odd and painful. Many years ago, I had a nerve problem in my left arm that went on for weeks. The consultant at the time said I had a typical example of muscle wastage in the arm. It righted itself over time but took a long time to do so.

It's fairly ok during the day, though does occur from time to time, but it's at night when I really feel it. I am looking to get an appointment with a neurologist to discuss phenytoin/steroids/methotrexate soon, so I will also ask about the arm problem.

[PMRpro Ambassador in reply to tempusfugi]

Something to do with the brachial plexus perhaps - the neuro should know!

[Bcol]

Hi, I had CTS problems when I got to 5mg and thru disappeared when I went back up to 10mg (docs full agreement). They started to return when I got down to 3.5/4.0mg and although I have docs agreement to back to 10mg if I want to I'm trying to ride this one out, just made it to 2.0mg. I will go back up if neccessary, not worried about it, just being stubborn! However agree with PMRpro that if the effects/tingling are going right up your arm it may well be something else.

[tempusfugi in reply to Bcol]

Thanks for your thought, Bcol. I remember being in contact with you a couple of months ago about this subject. Unfortunately, things have deteriorated for me as you will have read. Sorry to hear that your CTS has returned again though you're quite relaxed about it. I guess the plus is that it started at lower than 5 mg this time! Will be interested to hear how you fare generally. Your Dr sounds like a good'un😀

[Bcol in reply to tempusfugi]

Hi T, yey we did converse a little while ago and really sorry to hear of your present problem. Mine is copeable with at the moment, although I do have other ongoing stuff to deal with. Dr is a good'un as you say and it does make life so much easier, particularly when you read some of the horror stories we get on the forum.

[Grammy80]

I think it was a great essay~!!

You really make your own case...using the same point you made to us. I do think I would press that you would like an answer regardng the tingling. Also, it really is more important that you have good quality of life. I know you aren't 'zero-presser'! I know I got to ten once and had to go back up to forty...so I'm in single digits for the first time....you sound confident! Your call will go well....💞

[tempusfugi in reply to Grammy80]

Hello Grammy80, thanks so much for your encouragement, which I value greatly. You are a v positive 'gal' so I will think of you when I have my telephone appointment! Agree that a good quality of life is most important.😃

[Grammy80 in reply to tempusfugi]

That is really kind~I'm actually getting paperwork ready for a new doctor, my primary care physician. I've printed out all my meds and am going to put the name of the specialist that prescribed them and when. I've gathered a host of meds over the years and I'm not sure I need them all....plus I take a mouthful in the morn and a mouthful at night and four at noon. I'm not so sure they should all just be swallowed together either; 26 a day. Sometimes I'm amazed that I can still add 2+2 and get 4. That right isn't it?

The true test of my stamina is coming up with a planned trip...I'm going for it! My best to you...just remember..it is your body, and you know!!! You'll be great!💞

[Ridge]

Oh I’m so sorry. I really feel for you. What about trying +5 for three days. This time last year before joining this site I was confused. Both sorts of symptoms. On Rheumy advice I went to 10mg so so reluctantly. I had got to 3mg and was ‘racing for the bottom’. I remember pain fizzling away after half an hour. I then tried to drop to 5mg. Had to go to 6mg. Now very slow taper on everyone’s advice. I reckon I had both adrenals and a flare?!! Is that possible?

[PMRpro Ambassador in reply to Ridge]

Perfectly - that is the problem when you get to this level: the adrenal function has to wake up and get established which takes time and the PMR is almost certainly still ongoing and youa re still looking for the right dose. By definition of titration of dosage you must be getting closer as you get lower and there is less leeway.

[tempusfugi in reply to Ridge]

Many thanks, Ridge, for your kind thoughts. It can be v confusing - this PMR! Have decided to stick at 8 mg till I speak to medical centre. I realise that yoyoing, in small mgs, isn't particularly advised on the whole so if necessary will go for the +5 and then revert to 8.5/9 where it was less of a problem. As I said to PMRpro above, I hope to speak to a neurologist soon too so will see how that goes.