Going on prednisone! I was placed on 15mg of prednisone and within days felt wonderful!

My GP put me on a quick reduction of dosage. However, within a week or two, my own ability to make cortisone was reduced, so I did not have this as extra. I started to have my symptoms back but my GP was adamant that, because I had said I was so much better, she could not imagine that the dosage was not sufficient. So beware. You might feel wonderful for a couple of weeks, but when your cortisol is not being produced, you might need a higher dosage.

[PMRpro]

It is nothing to do with your adrenal glands not producing cortisol (it takes more than a couple of weeks anyway) - it is because PMR is a chronic illness that requires long term pred, usually over a period of up to 2 years, very often longer. The symptoms are caused by an underlying autoimmune disorder which will eventually burn out but it can take years - not weeks. The typical response of PMR is a 70% global improvement in symptoms within 48 hours to a dose of 15mg, it is one of the criteria. You then reduce the dose SLOWLY to find the lowest dose that manages the symptoms for the longer term. A fast taper will NEVER work in PMR, the symptoms will return. As you have found.

Take this paper to your GP and ask her to reconsider how she is treating you. It is aimed at GPs to show them best practice in diagnosing and managing patients with PMR. If she won't help - find another GP.

rcpe.ac.uk/sites/default/fi...

[Hidden in reply to PMRpro]

I was told on very good authority that when the drug is first prescribed, the body is receiving its own cortisone levels in addition to the drug, hence a possible good response. Within weeks, the body ceases to make it own, relying solely on the drug. Therefore levels are naturally reduced without a drop in dosage of medication.

Unfortunately in GCA, doctors are very keen to remove a one inch section of the temporal artery, stretch the two ends together and sew them up and this procedure is for diagnosis alone, which can be made just as effectively in other ways. Very high doses of prednisone are required following this procedure that could be avoided. I was glad to see that the researchers provide an end note about the necessity of avoiding this highly questionable procedure that is not without short or long term risks.

[PMRpro in reply to Hidden]

The amount of cortisol your body produces is regulated by need - if you subject the body to stress, it produces more. If there is already corticosteroid circulating in the blood, a very complex feedback system acts like a thermostat and prevents as much being produced by the adrenal glands. The normal "physiological" amount is equivalent to about 7 or 8mg/day but as soon as you take much above that the requirement for the body to produce some is no longer there. Take the pred away in a taper and the body starts to produce more cortisol itself. A taper of moderate to low dose pred over 6 weeks will rarely lead to adrenal suppression and even when a patient takes pred over much longer periods, there are generally few problems if the taper is done slowly enough - as described in the paper. There will be patients for whom this doesn't apply, but they are a small minority.

I don't know where you got your information that "diagnosis ... can be made just as effectively in other ways". Ultrasound of the temporal artery is suitable - but not widely available in every hospital. Even biopsy is not 100% accurate for diagnosis for various reasons. PET/CT also would provide the evidence but is a major proposition and very costly. The search is constantly there to find a better and more reliable way to say "this patient has GCA".

The very high doses (60-80mg/day) of pred given initially for GCA have nothing to do with the biopsy procedure which in itself has few risks (if that is what you are implying). The high doses of pred given in GCA are given to avoid the possibility of the patient going blind and currently is the only option to achieve this end. As yet, no other reliable treatments have been identified. Once the blood supply to the optic nerve has been interrupted long enough to lead to damage of the nerve, blindness frequently ensues. If the sight is lost in one eye it is common for the vision in the other eye to go within a few weeks. There is no way of reversing this blindness since it is due to damage to the nerve that causes the cells to die. Patients can have GCA that does not affect the blood supply to the optic nerve, they are at a lower risk of blindness and a response will be obtained with 40mg/day. PMR is a completely different situation, at that stage there is no great risk of such life-changing events and a moderate dose of 15mg is usually adequate. However, 1 in 6 patients with PMR go on to develop full blown GCA and will require high dose pred.

[Hidden in reply to Hidden]

The temporal artery has lots of branches off it so surgeons don't make an anastomosis, they tie both ends off. After a TAB the pulse on that side is absent, the artery is so small it would be a much more complex procedure to " stretch " and sew the ends together.

The high doses of prednisolone are to treat the GCA, not a consequence of the TAB, perhaps I have misunderstood the point you are making?

Unfortunately no surgical procedure comes without short or long term risks, every medical procedure/ treatment carries a risk/ benefit analysis unique to each individual patient.

It's disingenuous to suggest that the body stops producing cortisone within weeks of commencing prednisolone. What is your definition of " weeks ". My asthmatic children children regülarly have courses of prednisolone for wheeze without having to taper the dose.

I had to giggle at your use of the term grandiose, of course I may have my own views on who best deserves that epithet.

[PMRpro in reply to Hidden]

Well, thee and me have been told to go to the naughty step haven't we!!!!! Shall we consider ourselves rebuked? All those years at Uni and training and we learnt no physiology or anatomy - what a waste

[Hidden in reply to PMRpro]

In this instance I can't think of anyone else I would rather share the naughty step with PMRpro!

I know, and I felt we did our degrees and training in the days before they were dumbed down.... Duh!!!!

[Hidden]

PMRPro, your chosen designatory name could imply you are a health professional, in fact, a polymyalgia rheumatica professional. If this is so, either way, it should be explicit if not to be worryingly misleading.

As your reply suggests, when the body is no longer making its own cortisol, a drop in levels occurs. This can co-incide with a reduction in the dosage of prednisone, as happened in my case, firstly feeling immediate relief, followed by a reduction in medication which launched a complete relapse of symptoms. Hence the forthcoming information from the expert that this was very a very common response and the explanation as to why it occurs.

Eye sight loss with GCA can, in some cases, be reversible. Loss of sight can occur for other reasons, such as a stroke caused by GCA. There appears to be no studies that I can find on whether patients who have temporal artery biopsies are left with long term impairment of these arteries. I have spoken to professionals who think that cutting the cranial artery is so hit and miss they would definitely not have this done to themselves or their loved ones (increased risk of stroke/dementia, etc), insisting that signs and symptoms, blood tests, scans and other means are just as effective.

[PMRpro in reply to Hidden]

Once there has been total loss of vision due to GCA it is generally regarded as irreversible. There is one publication report of a patient gaining some vision back after institution of high dose steroids but they had still had perception of light at that point.

What I said was that in PMR, if you reduce the pred dose on a short taper it is almost certain that the symptoms will return - that is the nature of the PMR beast.

I doubt I would agree to have a temporal artery biopsy either - because it is only positive in about half of cases. OTOH, if I thought I had GCA and a doctor refused to use steroids without doing a biopsy - I would be left with little alternative.

However, the original discussion was about PMR.

Maybe you would like to read my profile. At no time do I claim to have a medical degree - I do however have a biomedical background and education.

[Hidden]

PMRpro I think you need to be aware that assuming a superior knowledge and delivering it in a grandiose style does not make you correct. You are not a health professional or a professional in the speciality of PMR as your chosen name implies.

"Antecedent episodes of amaurosis fugax can cause transient visual loss which typically begin about 8.5 days prior to permanent loss" "The visual loss can initially be transient", there are plenty of references for those who want to research it.

I raised the issue of GCA because I have both GCA and PMR and I can raise whatever matter I wish to, whenever I like. If you are adamant that someone is making misleading posts or claims on this site, I have no doubt the moderator would like to hear from you.

If you continue to take this aggressive and superior attitude, I will have no option but to report you. Your opinion is in no way more important than anyone else's on this site.

[Hidden in reply to Hidden]

I am not giving the impression that I have qualifications that I do not have.

However, I have GCA so I, at least, can speak from my own experience and what I have been advised by professionals in the real world.

Not all sight loss in GCA patients is permanent. Amaruosis fugax is temporary sight loss.

Wikipedia describes amaurosis fugax as 'commonly caused by Gaint Cell Arteritis'.

If you put 'amaurosis fugax + giant cell arteritis' into the google search engine, there are 16,100 results.

For instance:

ncbi.nlm.nih.gov/pubmed/953...

Ask your experts and they will confirm this. Please get your facts right before you contradict posts placed on this forum.

I re-iterate. I am told on good authority that patients started on 15mg of Prednisone are often relieved of symptoms. Due to the introduction of artificial steroid, within weeks, the body decreases its own production of cortisol. This often occurs around the time when the patient is placed on a decrease in medication and can cause a flare up of symptoms.

A temporal artery biopsy (an inch cut from the cranial artery for assessment) is only 50% accurate. Cutting weakens an inflamed artery. This can have serious complications, including infection. This is what I have been told by a professional who would never subject a family member of theirs to such a heedless trauma. Non invasive diagnosis can be made by the patient describing their symptoms, by blood tests and scans, these are just as reliable, even more so than artery cutting.

There are plenty of differing views about the treatment of GCA and PMR even amongst qualified professionals.

I no longer am interested in receiving replies to my posts from PMRpro or Keyes.

[piglette in reply to Hidden]

WMTuk are you saying that you have GCA as well as PMR and you have only been given 15mg of pred? Also are you saying you took 15mg for two weeks and things were great and then you started having problems without reducing or had you reduced to cause the problems?

[Hidden]

WMTuk.

Amaurosis fugax is a painless transient monocular visual loss, that is a., LOSS OF VISION IN ONE EYE THAT IS NOT PERMANENT).

Partial or Total Loss of Vision with GCA is PERMANENT and is irreversible.

There was a reported case in China where the claim was made that a lady who had lost vision due to GCA, and her vision loss had been reversed. On further investigation it was found that the lady had Amaurosis fugax and did not have GCA the most commonest member of the Vascultitis family).

PMRPro uses neither _ in your words - a 'grandiose style' or 'assumes superior knowledge'. PMRPro has never ever adopted a 'superior attitide either. The latter is exactly what you are doing.

Knowledge has been gained over 10 years and my knowledge has been gained over 8 years.

At no time has anyone on this site, to date, accused either of us of being 'aggressive'.

You also state " I have spoken to professionals who think that cutting the cranial artery is so hit and miss they would definitely not have this done to themselves or their loved ones (increased risk of stroke/dementia, etc), insisting that signs and symptoms, blood tests, scans and other means are just as effective". Currently the TAB is the only means, apart from medical symptoms of confirming GCA is present. There is a Trial, the TABUL study in progress to see if the Ultrasound method could possible replace the TAB. You can look this up of course.

I would love the professionals you have spoken to, to speak to the EULAR/ARC committee on PMR and GCA and see what they have to say. I would also love to know 'what other means'. Particularly to pass on to those people who are engaged in extensive research into cause, cure and friendlier medication.

Whilst you are entitled to your opinion there is a line that should not be crossed.

Finally this site is moderated extremely well and neither myself or anyone else would be allowed to get away with anything untoward.

Feel free to take this post up with the moderator.

[AndrewT]

Dear WMTuk,

I have been on Prednisolone for, getting on for, twenty years now. My 'maintenance' dose is 6mg, my consultant DID want to carry out a test to establish 'by how much' my ability to make my own steroid had been affected. That was some time ago...I'll keep you posted! I am regularly checked for 'bone density' and am due again soon, I believe. I can't say that I'm too bothered mind-after the 'clout' that I gave my foot before Christmas-and only got severe bruising! Even my own consultant was surprised that I 'got away with it so little damage', so to speak.

As regards 'visual' problems I honestly don't know-I had cataracts removed, about seven years ago-that were caused by the medication(s)-and my eyes are regularly checked. However this is mainly due to the fact that the vasculitis first 'showed' in my left eye and it is therefore, very necessary, to ensure that my eye(s) are 'un-inflamed'. Any 'disturbances' or redness, which can also show externally, could indicate a 'relapse' occurring.

Sorry if this hasn't been much help, to you, WMTuk (great 'name' by the way).

Anyway I send you my best wishes and hope that you feel better soon.

AndrewT

[Hidden]

Hello AndrewT, thank you for your response. Unfortunately, I was deprived of the level of prednisolone that was required to protect my arteries. Even though my ESR and CRP levels are normal now (not originally), I still have pain in my temporal artery areas so I think I have sustained some artery damage. I think I might also need prednisolone long term because reducing to less than 7mg brings a return of the symptoms and I feel very stuck with a GP who insists on reduction despite the pain.

Many people who visit this forum, come from all over the world. There issues are different to what is going on in the UK in the NHS. We do not have any equality in the UK. Doctors can give their favourites endless perks, including counselling support, help with weight reduction, regular tests and scans, visits to consultants, etc., and some people cannot even get a proper diagnosis and sufficient cheap medication to protect them from years of major disability, through heart attack, stroke or dementia (together or separately). I think this is scandalous but so many people jump to defend doctors rather than condemn lack of ethics and abuse of power.

[AndrewT in reply to Hidden]

Dear WMTuk,

Thank you for your reply, to my reply-if this goes on much longer we will need a page each-just for the thanks!

My doctors/consultants also wanted to get me 'down', to 5mg Prednisolone, however I proved to be 'unstable' below 6mg. This fact was finally recognised, some years ago, by my then consultant, Professor Neald- of UCH- who mad a note in my 'papers'. If you can have your 'base line' level recognised, in this way, then you should not-hopefully!-have any further trouble. I confess that, I too, defend the NHS very actively....However I do accept that some problems will, almost inevitably, occur in an organisation of such complexity and size. I also accept that not all doctors/consultants are as good as others but isn't this equally true of teachers, tax inspectors even bar men? This is NOT to belittle, in any way-at all, any problems that you may have encountered, please don't think that. I am just trying to give a 'balanced' view and, I certainly don't, mean any offence to you.

Once again I hope everything 'turns out' well, for you.

Very best wishes AndrewT

[Hidden]

Hi AndrewT, our body produces cortisol at about 5-7mg which we need to avoid adrenal suppression so when we get down to these figures, our body needs to start manufacturing its own, which it is reluctant to do. Twice I have been reeduced beyond this fugure. I was started, with typical GCA symptoms on 15mg which was reduced by 2.5mg every 2 weeks. When I made a complaint that I had not sufficient prednisone to protect my arteries from damage (I lost some of my eyesight in a suspected stroke). Then I went up to 10mg at my suggestion and this was reduced by 1mg every 2 weeks. When I got down to 4mg, I had to go up again to 7mg and have been on 7mg for the past 5 months because I have refused a reduction due to typical symptoms of GCA. You can be balanced about your treatment but I am entitled to my opinion based on my experience. I agree that incompetent people exist in all types of places, but, under UK law, ignorance is no excuse. Doctors are legally responsible for delivering safe health care, hence the recent disturbing news reports about Whipps Cross Hospital, for example which is now justifiably in 'special measures'.

[jsc50]

Thank you.