Referral to St George's Hospital

I think - judging by the dose she was on at least - that Susanne has GCA rather than "just" PMR and that is a whole different ball game. 

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!

Yes, as you know Eileen, I have GCA, following 5 years of PMR.

Terrence, good to hear that St George's is a good place to be. It is of course a major teaching hospital, so hopefully I will get that extra help. At least I know they have access to drugs not usually available.

Do you know Ptolemy, I've had to make it up as I go along!

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!

Can probably do less harm there! Obviously realised medicine was possibly not his calling!

The mind boggles, he will probably then become a legal medical specialist. I suppose the world is saved having him as a rheumy on the other hand.

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? 

I wondered that - less work than doing forensics where you need dentistry as well...

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?

Eileen, yes I'll do that. I'm currently on 20mg, so should I drop by 1mg?

Ptolemy, I'm going to give the Dead Slow method a go.

Good luck, I am sure that will work for you.

I suppose it depends on how much difficulty you had any other way. I would always do 1mg at a time but I am very sensitive to drops - hence the dead slow approach. For me it is getting increasingly difficult since I can't cut my tablets and it stays at 1mg even though I'm now down to 4mg/day so I've slowed it down quite a bit doing 2 or even 3 times at each step..

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!

Thanks Eileen. I'll give it a go, starting at 1mg/4 days old, as you suggest. :-)

Thanks Ptolemy. :-)

Hi Eileen,

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.

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

 

I think you are probably right about the fatigue - I did discuss it with one of the top PMR specialists a year or so ago and she agreed any increasing fatigue below 7mg probably is due to that.

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.

"Adrenal fatigue" is really a term used by people who want to sell you a supplement or propagate or health fad ideas. Medically the term is adrenal insufficiency and it isn't due to the adrenal glands being "tired" it is due to the entire feedback system that governs them being upset in some way or to damage to the adrenal glands themselves. In our case, while we are taking pred the feedback system signals that no more of the natural corticosteroid they make, cortisol, is required and they are seemingly "not working" or "fatigued". It isn't the case though - it is the same as your heating boiler not producing more heat when the thermostat tells it is it already warm enough in the room. The boiler iss till capable of producing heat, it just isn't. There was some thought at one time that maybe adrenal insufficiency was something to do with the cause of PMR - now we know it is an autoimmune disorder causing inflamed arteries. However, some autoimmune disorders can attack the adrenal glands themselves which is a factor that must be borne in mind.

 

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.

For fun I did Dr Wilsons questionnaire on adrenal fatigue. You can Google it.  I have mild adrenal fatigue according to it. Based on the questions I would have thought it virtually impossible not have adrenal fatigue unless you lay in bed all day with servants looking after you. I think he coined the phrase adrenal fatigue in the first place. I am not actually sure what he is trying to sell, but I think it is supplements. He says eighty per cent suffer from adrenal fatigue so he is obviously on to a money winner. 

Thanks for your response. I am very impressed with your detailed knowledge. I AM going to go back to my dr and ask for the prednisolone. I cannot contitnue to suffer needlessly. I am on Warfarin.

LUCY

Lucy, why do you think you need prednisolone? It is quite a powerful drug and not something that a doctor would hand out lightly, just because you asked for it. You need to have a diagnosis of symptoms that require steroids, have you had that? 

On another thread Lucy commented she couldn't have pred for her PMR diagnosis because she is on Warfarin. Many doctors think you can't mix them because there is an interaction - what it really means is that you have to check the INR more closely because pred potentiates the warfarin (I think it's that way off the top of my head), whichever it is you just have to readjust the dose.

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. 

Ah that will explain it, thanks Eileen. I thought it was for the adrenal fatigue!