Flare!: In September of last year I tried to reduce... - PMRGCAuk

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Flare!

Deemar
Deemar

In September of last year I tried to reduce from 2/1/2 mg to 2 mg without success. Back to 21/2 and stability returned. As we were gong to NZ for the winter I decided not to rock the boat and stay on 21/2 until we returned and settled in.

Best laid plans! We returned home on 1st April and on the 3rd of April I went down with acute bronchitis most probably caught on the plane home. I’m not one to complain but I was really ill and although the antibiotics did their job I haven’t really been well since.

I didn’t have any real pmg symptoms initially. A blood test on the 3rd May, prior to visit to rheumatologist showed increased inflammation. As I wasn’t really aching at this point he still said to try and reduce to 2 mg. I ignored him! Still not well and now starting to ache I saw my GP and had a blood test last Monday. Inflammation increased. Now beginning to feel very tired and irascible (!). Saw my GP yesterday and yes we reckon that I am having a flare. He said stupid of rheumatologist to have told me to reduce. I said, perhaps I shouldn’t have said, that I got the impression that the rheumatologist was sitting in his office waiting for retirement! He smiled. GP much better than rheumy.

So he has advised me to go back to 5 mg, which I have done this morning, a blood test in 2 weeks and another in 4 weeks then another rdv with him.

So my question is should the 5 mg be enough? If my levels and symptoms go down can I go back to 21/2 or do I reduce slowly again.

19 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hopefully the 5mg should be enough, but no one can say for certain. You’ll find out though within a few days. Did he say how long to stay at 5mg? Hopefully the next blood test will give an indication of how things are going.

As for dropping back down, really depends on how quickly you can get things back on an even keel, but as bronchitis will have knocked you about a bit I personally wouldn’t be in too much of a rush. My aim would be a few weeks at 5mg, then a few at 4mg, and if you get to 3mg without a problem I’d stay there for longer - just to make sure. But that just my opinion, others may differ.

Good luck though?

Deemar
Deemar in reply to DorsetLady

Many thanks for your reply. Yes, it’s a bit of wait and see situation isn’t it. I don’t see any point, like you, in rushing to get down again.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Deemar

Yes it is, and below 5mg there is very little in the side effects line, so I don’t know why doctors get hung up about how fast or slow we taper at those levels.

I know no-one wants to be on Pred longer than necessary, but it’s much more difficult to taper at very low levels than it it is at high doses - they don’t always get that!

I agree with Lady Dorset, except the I wouldn't drop more then 0.5mg at a time.

I'd sit at each level fro at least 2-3 weeks before dropping again.

And i wouldn't budge from where you ware now until I felt a whole lot better.

Hidden
Hidden

At my dose 6mg...if I had a flare I would do an extra 5mg for a couple of days then drop back. Perhaps considering Dr ok, you could 7.5mg for a couple of days then do 5mg. Hopefully it would give you extra short term help then you can consider doing the taper once EVERYTHING settled.. symptoms and markers. 🌻

PMRpro
PMRproAmbassador

Wait and see. Though maybe a few days of 7.5mg might be a good basis before returning to the 5mg.

And I wouldn't go to the effort of visiting that rheumy again if it were me ...

Yes, I will try a couple of days on 7.5mg to see if it helps. Well it is an effort to visit that rheumy as he’s an hours drive away and it’s a waste of time. Not many of them around in rural SW France. Problem is, I believe, that under the regime here I have to see a consultant to obtain certain benefits. I’ve already changed once but may think about trying another one now. Will chat to my GP about it, he’s much better than the rheumy anyway.

One more thing. Over the last week, maybe longer, I have noticed that after I take my meds I start feeling, difficult to explain, sort of dithery, strange, just not quite right. I have taken them together, same meds, for years.

Along with the cortisone I take 50mg Levothyrox for hypothyroidism and 15mg Candesteran for hypertension. Should I perhaps take the cortisone separately?

PMRpro
PMRproAmbassador in reply to Deemar

I think the majority opinion is that thyroid medication and pred should be taken separately although I don't know how much that is because thyroid stuff is supposed to be taken on an empty stomach and that means waiting for the pred dose for a while. Why not start another thread with this post and get the advice of the others in the same boat. Thyroid medication can also be taken at night and may work better for some people taken that way.

jamanetwork.com/journals/ja...

You were down at a low dose - maybe adrenal function (or lack thereof) is catching up?

Deemar
Deemar in reply to PMRpro

Yes, that could be a possibility. I’ll see how I go and maybe ask the doc for an adrenal gland test when I see him on 1st July.

Hidden
Hidden

I take my levothyroxine as soon as I open my eyes and leave an hour before I eat, drink or take any other meds or supplements. If I don't I get the tremblies and feel yuk. I tried on a night but I could fit it round night time drugs easily. This is a bit of a fluff piece from endocrine site but it does seem to condense key issues.

endocrineweb.com/conditions...

Interesting! Don’t think I’ve ever been told any of that and up to now have had no problems but will definitely start taking the Levothyrox as soon as I wake up.

Or maybe at night. Better start reading.

Whereabouts are you in Sw France?

Are you anywhere near Lectoure?

Deemar
Deemar in reply to Jankie

My iPad tells me that we are 95kms away. We are in Castandet 18kms east of Mont de Marsan.

France is so huge but not many people know this area. Very beautiful especially with views of the Pyrénées

A special part of this huge country. How have you found treatment of polymyalgia here? It does seem as if knowledge about the condition is not as widespread as it is in the UK. This site has been of immeasurable help to me since I was diagnosed.

So, I did 3 days on 7.5 mg and since then have been on 5 mg over the last two weeks. Pain has certainly diminished by now but moved around quite a bit. I’m much better in myself not as tired and have much more energy. Now, 2 hours after taking my Pred I have no real aches. A bit of a stiff neck and very slight ache in thighs and shoulder. All barely noticeable. I woke about 3am to go to the loo and had stiff fingers (something I have noticed for a while now during the night) a pain in my left ankle and a pain in my right thigh both of which had disappeared by the time I woke again at 8am.

I had a blood test on Friday and my sedimentation rate is 77mm the same as it was two weeks previously. CRP is slightly higher at 39 as opposed to 30 previously. High readings I know but ever since I started on this journey my results have always been on the high side but never this high. I have another blood test in 2 weeks then see my GP again.

PMRpro
PMRproAmbassador in reply to Deemar

If they continue on the rising trend it suggests you need a bit more time at a higher dose to clear out the existing inflammation and that you also need more than 5mg to manage.

However - do/did you have much pain earlier in the night than 4am?

Deemar
Deemar in reply to PMRpro

No pain earlier as far as I am aware. I was sleeping soundly till bladder/pain woke me. I was then able to go straight back to sleep again.

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