Sideswiped .... again!

[fren]

Early April found me discussing raised CRP, mild Anaemia and newly discovered degenerated lumbar disks with my GP. He expressed his concern that in the light of my raised CRP my rheumatologist's emphasis (in her letters) on getting me off pred quickly was totally unrealistic. He gave me a letter of intro so that I could research a rhumy who has an interest in PMR and organize an appointment, (in france the patient makes their own appointment). I was definitely impressed with my French freedom of choice .....until I got home.

'Cos - I rather like my dour, grey and serious Rheumy who has always listens, gives me straight answers and just occasionally sneaks a half hidden grin when I confess to having ignored her instructions who saw me within 3 days to fix my housemaid's knee, and anyway she wrote that letter before my CRP shot up.

So there I was, just after midday today in my dour Rheumy's consulting room, explaining tentatively having upped my pred to 10mg and made a progressive reduction to current dose of 5 1/2mg in 4 weeks, (CRP now 3), put myself on Iron for the anaemia and bought a very firm pantie girdle to support my back. No attempt to hide the grin today. She prescribed for me the Iron tablets I have been taking, a back support ~ effect to be reviewed in 3 months with a view to injections. We discussed the discomfort of reductions and joked about my dreadful mood swings the 2nd & 3rd days after the dose drop. Then -- I was stunned......' get to 5mg then you can reduce or not as you wish, it is not a problem if you stay on a dose of 5mg or under for life.' 'Don't reduce in the 2 weeks before your holiday or the week after, - don't go below 3mg this year'.

Has my Rheumy become a secret member of PMRGCAuk?

She has prescribed hydrocortisone 10mg daily to assist my adrenal function and help with reductions if I wish to do so.

Please can you give me the lowdown on this drug and it's effectiveness on our PMR problems.

[SheffieldJane]

Sounds like you’ve trained your Rheumie well. I have only heard heresay about Hydrocortisone, from someone preferring Pred. For Adrenal Function. Was it Kajools?

[fren in reply to SheffieldJane]

'morning Sheffieldjane,

Must have been the lady before me. She does find my daughter and I amusing as we are both her patients and we both go to each other's appointments to provide a second pair of ears as the conversation is completely in French.

Yes I've been looking at some back posts including Kajools, but so far I have only found people being changed to it not taking it in addition to pred. I am having no problems on 5 1/2mg. and happy to reduce again from Sunday. Why do I need this?

[Mrs-CJ in reply to fren]

I’ve been doing some reading about adrenal insufficiency....currently on wait list to see specialist to get synacthen test. I did read that sometimes hydrocortisone “encourages” sluggish adrenals to get started. But there isn’t much online about switching to HC if you have PMR.....so I suspect that wouldn’t apply to us as we don’t want to trigger a big flare.

I have not read about taking both at once but that would be interesting if it worked. 😊

[fren in reply to Mrs-CJ]

That is the reason she gave me, to stimulate the adrenals.

My pred dose has been under 8mg since last June (despite a flare at 2mg in Dec), appart from 2 days last month at 10mg to reduce post surgical inflamation and bring raised CRP back to normal range. I am currently at 5 1/2mg and comfortable to go to 5mg on sunday. You would think that my adrenals have already been contributing for some time.

I am very reluctant to effectively up the dose of steroid by taking this.

I thought I might reduce pred by 1mg on Sunday and introduce 5mg (1/2 tablet i.e. 1 1/4 mg equivalent) making a total dose of 5 1/4mg. a gradual substitution could be interesting.

On second thoughts I might put the HC away until after my trip to Marrakech in early June.

[Mrs-CJ in reply to fren]

I too think that my adrenals have been reluctantly contributing all along at my lower doses, but when I reduced below 4 mgs my fatigue really increased. I got really ill when I tried to go to 2 1/2.....fatigue that I hadn’t experienced before. So I have put myself back on 4 and will stay there until I get the synacthen test.

I think it is Mrs Nails who recently saw an endocrinologist who is having her alternate 7 1/2 and 7 for her adrenal issues. I’ve read that that is a possible treatment....that alternating a high and low dose sometimes encourages the adrenals to get moving.

I would have to review her posts about this, but I think she was down around 5 mgs and now she is in the 7’s......and I don’t know if the endo wanted her to start there or if she had a flare. I’ve also read that sometimes the doctor puts you up a bit and then has you come down again, hoping to stimulate the adrenals.

As the hydrocortisone hasn’t agreed with some of the forum members I agree with you that it wouldn’t hurt to wait until after your trip. After all, the PMR isn’t going anywhere before then!

[HeronNS]

Little bit concerned that you are using a back brace. This is not going to stop you from doing some things to strengthen your back muscles, is it? arthritisandinjurycare.com/...

I've had intermittent back trouble for many years, since I was quite young, actually, and have osteoarthritis in both lumbar and cervical spine. I faithfully do back exercises which have helped. When I went to see a physiotherapist early on in the PMR jounrey she told me the muscles in my back were "like bricks". Spasmed muscles can even lead to fractures in vulnerable people. However she did "dry needling" several times over a few weeks and this reset the electrical signals in those muscles. Today, about 2.5 years since the dry needling, I asked her to check my back, and she says the tone is very good, no tight, damaging spasms. And when I have episodes of back trouble the exercise program usually sorts it very quickly.

[fren in reply to HeronNS]

Hello HeronNS,

The back brace is only to use when walking outdoors, as my inability to walk any useful distance is depressingly restrictive. I now need to contact my GP for a Physio prescription.

From what you say Physio is likely to be the most effective treatment and I look forward to getting started.

Thank you for the encouragement, I just want to be able to walk my dog.

[HeronNS in reply to fren]

Sounds good! All the best....

I should add that my physiotherapist is very well informed about PMR and the limitations it causes so I wasn't given a lot of repetitive exercises, or anything too demanding. She was very careful to make sure I wouldn't hurt myself.

[karools16]

Do they do Synacthen tests in France? I am surprised you would go onto Hydrocortisone without knowing what your adrenal function is? If you have read my previous posts, you'll know that I will not touch HC! I don't know of anybody who would be on HC and Pred, nor why. It's marvellous that you have such a good Rheumy! Wishing you well.

[fren in reply to karools16]

I don't actually know, Karools 16, but I am pretty sure we do. I certainly have not had a Synthathen test. I was so delighted when she was so relaxed about reducing pred, but now I am just so confused again. Sideswiped.

I haven't yet found any info about using hydrocortisone alongside prednisone. It seems like putting the dose up when I am quite comfortable reducing a little more. The dose makes no sense, 10mg once daily when 3-4x this would be given in two or three doses a day it being a short acting drug.

I have not been at a pred dose above 8mg since June last year appart from 2 days at 10 mg last month to deal with post surgical inflamation and bringing my CRP back into normal range, so you would think that my adrenals have been contributing for some time.

I am very reluctant to start this until I understand why she feels I need it.

Ideas welcome.

[PMRpro Ambassador]

Hallelujah!

However - I don't QUITE get her use of hydrocortisone to "aid" adrenal function and "assist" with reductions. All it is is another corticosteroid like pred but its effect only lasts a few hours. Normally a patient who still needs pred for PMR would just be left on enough pred to do that and it does the adrenal function bit. Both together is MORE corticosteroid so would actually suppress the adrenal function more rather than less. When HC is used it tends to be INSTEAD of pred - as it is out of the body in a short time it does encourage the adrenal function but it DOESN'T manage the PMR symptoms as well.

Karools was switched to HC because she has next to no adrenal function - and you can only know by testing (synacthen test) to see if they work. She had an awful experience with HC on its own and asked to be put back to pred - which she was and all settled down again.

If you are good on pred I would stick with it - and I would also want a synacthen test once you are at/below 5mg. Just to see if your adrenal glands CAN work.

[fren in reply to PMRpro]

Although delighted with her realistic attitude to pred reduction, she has once again left me mystified. I cannot find any logic in adding HC to the pred, why would I want to add 2 1/2mg to my dose when I will be comfortably down to 5mg on Sunday.

I have decided to discuss it with GP, - (who is sure to ask why no new Rheumy?) she may have explained her reasoning in her letter to him, also I could ask for a Synacthen test.

Meanwhile I will stick to my pred and rethink after my short visit to Marrakech early next month.

Can you see any benefit in splitting the dose gradually between the 2 drugs without upping the dose by more than 1/4 mg? It could be done but at what time would you take the HC if the pred is taken in the early hours?

Hmm interesting. Any new French research published recently?

[PMRpro Ambassador in reply to fren]

Honestly no - you need the longer acting pred to manage the PMR, more HC will just let in the risk of the PMR flaring as the antiinflammatory effect wears off after a few hours. I see the point of switching to HC in patients who don't still need the pred for its antiinflammatory action. But otherwise?

I don't know of ANY French work - and even so, it would be written in English or no-one would read it.