Referral to St George's Hospital
Posted , 6 users are following.
When I saw my rheumy last month, he told me that he would see if I could be referred to St George's Hospital in south London. The reason being that I have been unable to get below 20mg Pred without having a flare. I can't take methotrexate due to liver function. I've now been on between 40 and 20mg Pred since last December (having been at 40 three times during that time due to flares).
Apparently, St George's has much better funding than my local hospital and therefore access to more expensive drugs that may help me reduce the Preds. I've no idea what they may be, as I didn't ask the right questions at the time due to my surprise at the referral and feeling a bit unwell.
Anyway, I have an appointment on 18 November, so we'll see what happens.
I'm currently feeling quite unwell/having a flare perhaps. My daughter got married last Saturday and I also had my mother staying with us. She came over from Denmark. The wedding was wonderful, but the stress of the time leading up to it and then having my quite cranky mother here obviously took its toll. So, now I'm trying to relax and am back to sleeping for a couple of hours every afternoon.
0 likes, 32 replies
EileenH Susanne_M_UK
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Nevertheless, good luck on Nov 18th - and enjoy a good rest until then!
terrence93439 Susanne_M_UK
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EileenH terrence93439
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You have been very fortunate to be able to reduce from 20mg to 3mg in 9 months - but we do see that men often do have a totally different experience of PMR and response to pred. We ladies are very envious of you I can tell you!
All the very best for a continuing reduction!
Susanne_M_UK EileenH
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Susanne_M_UK terrence93439
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ptolemy Susanne_M_UK
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Susanne_M_UK ptolemy
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My rheumy was always keen to get me down as quickly as possible. I knew it was wrong and had to pretend to follow his reduction plan. Of course, I flared several times when I thought I had to follow his plan, apart from one time when I was in hospital with a bad lung infection.
He has been pestering me to get down as quickly as possible. If I'd had the rheumy I had when I had PMR, who was fantastic, but who retired, it might have been a different story.
Strangely enough, when I called his secretary today to tell her I had finally been referred to St George's, she told me he was leaving as he was now training to be a Barrister! Beggars belief!
EileenH Susanne_M_UK
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ptolemy Susanne_M_UK
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Do you think doing the reduction how you want rather than how he wants you could reduce below 20mg? Say even a half mg at a time?
EileenH ptolemy
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Yes Susanne - while waiting for this referral and since you don't have to deal with the eejit again, what about trying the "Dead slow and nearly stop" approach?
Susanne_M_UK EileenH
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Susanne_M_UK ptolemy
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ptolemy Susanne_M_UK
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EileenH Susanne_M_UK
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You could start with 1mg and at one day new, 4 days old and see how it goes. It is open to a bit of tinkering about with to slow it down or speed it up a bit depending on the individual.
Good luck!
Susanne_M_UK EileenH
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Susanne_M_UK ptolemy
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Mrs_CJ EileenH
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i found it very interesting that you say you repeat some of the steps 2 or 3 times. I'm using your Slow method but have been having problems reducing below 4 1/2 (regular white pills). So like you I ended up repeating many of the steps on the way down and then stayed on alternating days for about 2 weeks. After that I was able to finish the reducing without repeating hardly any of the steps.
For me when I am reducing the issue isn't the aches but rather the fatigue......so tired. I've assumed my adrenal system is sluggish and takes a lot of prodding to get in gear!
I have had PMR for 3 years this month. Not an anniversary I want to celebrate but so glad we have a drug at works for this ailment.
lucy82013 Mrs_CJ
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Dear Mrs CJ et al
Has anyone been tested for adrenal fatigue? If so how is the test perormed\/ Can the test be done at home or does one have to attend hospital?
Thanks
EileenH Mrs_CJ
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I find the first few times I take the new dose I feel really yuk - and not always the 24 hours after taking it but the NEXT day! And yes - I think the second half of the reduction is easier than the first half.
EileenH lucy82013
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It is recommended that when we get to lower does of pred, below about 7mg/day, that we should be sent for what is called a synacthen or ACTH test which can tell you if the adrenal glands are still able to function properly. This is because long term treatment with pred can result in the adrenals not wanting to get going again plus loss of function in them is also common as we age so there is a double whammy.
For most people, reducing the dose below 10mg very slowly is enough for them to slowly wake up and do their job adequately. Sometimes people get off pred and then ask us about whether they are working - if you get to low doses of pred without becoming ill they are working and you don't need to worry! If they don't work then you can become very ill, very very fatigued and a lot of other symptoms which are unlikely to be missed. In the meantime, at lower doses of pred you may find you feel more tired than at higher doses - that is a sign to slow down the reduction to let the body catch up. One top doctor likes to keep his patients on 5mg for anything up to 9 months for just that reason.
The synacthen test is quite simple but it is usually done in a hospital day clinic so several people can be done at once and the samples are close to the laboratory for testing. You do not take any pred for the 24 hours before the test is timetabled - that shouldn't be a problem as it is always done at 9am and most people take their pred in a single dose in the morning when they get up so you will just take that day's dose late. They take a sample of blood at 9am to get what is called a baseline level of cortisol in the blood. Then they give you an injection of a substance that stimulates the adrenal glands to produce cortisol and they take another sample of blood some time later to see whther they have made as much as they should do. Sometimes they take a third bllood sample a bit later again. Then you can take your usual pred dose. It isn't dangerous to have to wait, one day without a dose won't make you ill - it might leave you a bit stiff though! They also like to have you at the hospital because some people don't react well to the injection and if you are in hospital there are plenty of people around to look after you - it is very rare but rare doesn't mean never. It's also a lot more comfortable in a hospital day clinic than at the GP surgery - almost always comfortable reclining chairs for you to sit in. Lodger on this forum says she went to sleep - they woke her up when they'd taken the last sample - they usually put a butterfly in so they only have to stick a needle in you once.
ptolemy lucy82013
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lucy82013 EileenH
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LUCY
ptolemy lucy82013
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EileenH ptolemy
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As you know - PMR without pred isn't the easiest of management scenarios! There are plenty of people on pred and warfarin - some were on warfarin first, a lot of us went onto warfarin after being on pred for some time but they are not mutually exclusive.
ptolemy EileenH
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