My GCA is an atypical variety that is hard to control..HELP

Hello Christina,

I haven't been on the Methotrexate all the time, I think it was started as a way of getting the Prednisolone dose down. The pred is a fast worker and the Methotrexate slow - as far as I understand!! In the beginning after the initial high dose (50mg) of pred. everytime we tried to get the dose down below 20mg my infection flared up again. So I assume that is the answer - but I feel the on-set of total ignorance on my part - donøt know much about this illness - even less about the drugs - all I know is that a couple of years ago I was energetic and healthy as a horse - now???????????????

Thanks for getting back to me.

Janet

Top experts in GCA and PMR would probably have accepted the dose you got to without mtx as acceptable. Fairly recent research has shown that even after 6 months at doses above 20mg there is still evidence of the GCA being active so that it would reappear if the dose were reduced any further. This is even though the patient has no symptoms and even the blood tests are normal. If you keep trying to force a reduction, then the GCA can become active again and you are starting from scratch each time. If you never get it properly under control then it will keep coming back - it isn't exactly rocket science though it seems to pose even greater problems!

Lots of people find the same as you but eventually get below 20mg after a few years. I feel rheumatologists are often too hasty in trying to get us off pred. I'm not alone in that  - they see pred as something awful but don't stop to consider that the other drugs are not exactly jelly babies either and in combo they may cause even more trouble. The other problem that appears to not help at all is that they are determined to reduce in steps that are simply too big - smaller steps often achieves a fster reduction in the end.

Hi Eileen, you keep going on about mtx having no place in the treatment of PMR. Yesterday I read a paper written for the British medical journal that backs up your argument. Bmj.com clinical review on PMR. I think it's one page 4 or5 but whatever page it's on I have to ask myself why are consultants still prescribing it in contradiction to accepted clinical standards? All I know is I don't want it and whilst I have a question mark over my liver function (different problem altogether) I will argue that I can't have it. Christina.

Hello Eileen,

Wow you sound as if you have lots of interesting information on tap.

I live in Denmark.

Am recieving treatment from the Rheumatologists in Slagelse hospital.

I was admitted to hospital in the beginning - before the diagnosis, they suspected cancer and I had all sorts of tests - when they took a PET scan I apparently lit up like a Christmas tree. After that they gave me prednisolone and the day after I was already feeling more like myself again...that has passed since taking it for a couple of years the side effects have taken hold ... anyway...

I am also sceptical about this new drug, I haven't started it yet as I was only at the hospital yesterday. After I got home and read the paper that the doctor had given to me - my initial response was not positive.

Have spoken to him this morning and he tells me that there is only one alternative that he has tested me for and I wouldn't be able to stand it. Also he says that if this doesn't work I will be referred to a different specialist hospital. Feeling ever so slightly at a disadvantage - that sort of feeling when you just hope that they know what they are talking about 'cos they could more or less tell me anything - I can't argue with something I know nothing about.

Frustrating...

thankyou

Janet

Lucky you having a PET scan - at least they saw where your large vessel vasculitis is! More than we get offered in the UK!

But - since I didn't ask before when I had my mini rant about consultants who all want to hares when tortoises get there first - what sort of reduction plan have you been put on?

If you follow this link:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

you will find more links to another site from the northeast of England support group. This is full of info that will help you understand more about your illness. There is also another forum that works more like a virtual support group - we don't quite manage having coffee together online but otherwise it is a place to learn, rant, get advice in a more relaxed atmosphere than this forum (brilliant though it is). Speaking to others and hearing their experiences is very important in learning about what has happened to us as Christina says.

And the final link is to a paper about managing GCA and PMR from top UK experts. They quote a reduction scheme that achieves a flare rate of 1 in 5 rather than 3 in 5 as found with other reduction plans. Further down the thread are a couple of posts with the very slow way of reducing many of us have used to get to far lower doses than ever before. Even consultant rheumatologists are coming round to our way of thinking - that going apparently VERY slowly gets the patient there just as well as adding in other potentially nasty drugs. 

Softly, softly, catchee monkey...

Eileen - thankyou so much for your help - just finding somewhere that I can "talk" to people with the same problem is wonderful and a huge relief. I was lucky with the PET scan - it was a last resort as they couldn't find out what was wrong...wish there was a great forum like this one though.

As for my reduction plan - it was very slow - non existent for a while after the initial drop from the first large dose the first week. I think though that the last hurdle from 15 to 5 has been too fast I was dropping 1,5 mg every couple of weeks - unfortunately as I mentioned earlier - I am at the mercy of those I count on to know what they are doing, and I am sure that they do for the most part - you have to believe don't you..  it is a beggar though as I partly feel so much "clearer" or different somehow as the pred dose has come down - unfortunately I can also feel the original symptoms creeping back.... what a pain!!!!!

Thanks anyway - I will check out the links you posted.

Janet

There is no wonder at all you have problems dropping like that. No reduction should be more than 10% of the current dose - and oncve you get below 15mg even that is likely to be too much for many patients with PMR or GCA. It is a very different matter from other illnesses where they are using pred for inflammation, most of them it kills off the inflammation and then you just reduce fairly gradually to allow the adrenal glands to pick up their job again. In PMR/GCA the inflammation is chronic, the underlying autoimmune disorder may still be active and you have to find the lowest dose that manages the symptoms until the underlying disorder burns out - which it does in most people sooner or later. 

You need at least a month at each new dose, preferably longer to make sure it is still enough to control the symptoms. Some doctors keep patients at 10mg and 5 mg for months, it allows the body to catch up. 

To some extent the doctors know what they are doing - but it is something of a fight to get them to slow down with the reduction, they are so desperate to get the patient off pred altogether. But it is the only thing that manages the symptoms successfully and reliably. I am very lucky, my GP is the one wanting me to go even more slowly! I'm not in the UK either - I live in northern Italy.

Yes, pred causes "brain fog" for many and it does go at lower doses. However, with a more sensible reduction plan you will get back to a lower dose.

I absolutely agree, I had the feeling that it was just going to fast...it has after all taken this long to get under 20 -

and finding this forum and "having a chat" with you made me realise that I must "make a stand" so I phoned the hospital and asked them to get the doctor to give me a ring when he had a spare 5 minutes - the end result being that I am not starting this ghastly new drug until we at least see if it looks better when I have had a couple of weeks with the prednisolone back up to 10.  Thankyou for helping me find my backbone.

 

Tried to access the review on BMJ.com but got no further than summary without subscription.

Hi all,

I never looked at BMJ so didn't realise it was subscription only. However if you go to http://www.pmrandgca.org.uk/research-and-clinical-guidelines-0 there is a link from that page to the full article if it is the correct one. I don't know if this is a "known link" to users or mentioned elsewhere in here but I can add this and any other direct links to the pinned discussion if users would like to let me know of any. It is probably better to do this via PM rather than in this discussion.

Regards,

Alan

Hi, yes this is the paper I mentioned. Sorry i don't know what PM stands for or how I would access or use it?

christina

Thanks for the link. It answers my questions about the role of PET scans and MRI as well which get a minimal mention elsewhere, except on his forum.

Sorry  it means Private Message.

See http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Simplest way is click the envelope under the Apple avatar to the left.

PM means Private Message - for the recipient's eyes only.

If you click on the name of the person above their post it will bring up "their" homepage. Immediately under their name is an envelope with Messages next to it. If you click on that you get a box to write a post in exactly the same way as any other post but only the person you send it to will see it so it is a good way of sending links which aren't approved for public display.

Hi Eileen, I'm such a dumbo! The moderator has just advised me of what it means to, so I looked on the left hand side under all replies avatars and they've all got the envelopes, only mine hasn't? I've just double checked my profile settings and I've definitely added that facility to my list of requirements, I clicked on the save button, hopefully that should do the trick.

thank you, christina 

Because they don't read the updated clinical guidelines - and/or think they know better. Also, what doctors learn at a certain point of their education remains fixed in their minds and it is VERY difficult to get them to change their minds. They give a patient mtx, they manage to reduce their pred, it must have been the mtx. Not the fact that they may well have reduced the pred given that extra time anyway. 

I know several who have reduced initially but then it all went pear-shaped and they were back to the higher doses again. Then there are the 1 in 6 patients who are given a diagnosis of PMR inititally - except it wasn't, it was the precursor to LORA (late onset RA) which can also be negative for rheumatoid factor - something a lot of doctors don't appear to know - or another vasculitis/arthritis. MTX is the first line drug for RA, it is very likely to work for people who have LORA, but not for PMR. The Kirwan paper points out the difference in their use of the "pred sandwich" - if there isn't a rapid, dramatic improvement in response to 15 to 20mg/day pred then there must be a question about using pred. Not only may there be another inflammatory arthritis to consider but there are thoughts that there is probably also a form of PMR that is not pred-responsive. It's quite right and fair enough that if the patient isn't getting a good result with pred at under 15mg then try something else - but the automatic use of it because someone can't cope with too big a reduction step is daft. First of all, try creeping down the dose. That works for many patients and may avoid the use of pred. 

I couldn't agree more. Christina

Yes, please add it Alan. Sarah Mackie's summary is easy enough for anyone to read I think. Of course, I'm biased - I'm involved with her work! ;-)

It is so annoying that BMJ thinks they are exclusive enough to be behind a paywall, especially since some of the research stuff is meant to be freely available. This is a classic example...

You might be interested in this paper I have just found:

"MRI of Giant Cell (Temporal) Arteritis, GCA

by Thorsten Alexander Bley, Julia Geiger, Oliver Wieben, Michael Markl"

It comes under Clinical Cardiovascular Imaging on the Siemens healthcare website. I googled GCA MRI and the reference came up.

Thank you Eileen. Interesting to read that the technique has apparently been use in GCA for at least 10 years but is not generally used for initial diagnosis. I suppose the research to define specificities and sensitivities has not been quoted even by Siemens so there may be a block there on general use of MRI rather than getting an unreliable biopsy. 

As far as one of the top GCA/PMR people in the UK knows it isn't available anywhere in the UK. 

Equally, as far as I know that is, a couple of UK centres DO use enhanced imaging when they are faced with a "what the heck is this" patient. On a few occasions I happen to know that a young patient (under 50) who has categorically been told it "can't be" GCA or PMR has ended up with a diagnosis of one or the other on the basis of the shining results of such a scan! Much as Janet describes. The techniques are there - just not available for day to day use.

The thing I liked best was their "all in one" scan option which would indicate whether there is LVV in particular places - like aorta and branching arteries so that monitoring can be provided for the patients at greatest risk. Dream on...