My GCA is an atypical variety that is hard to control..HELP
Posted , 6 users are following.
After nearly 2 years with Prednisolone and Methotrexate I was finally getting the Prednislone down to the maintenance dose of 5 mg daily - the light at the end of the tunnel was getting closer... unfortunately my blood tests showed that this wasn't the case. Prednisolone dose is now set to 10 mg daily and the Methotrexate that apparently doesn't work for me is now to be dropped and I have to start with Mycphenolatmofetil - seems to e to be a pretty serious drug - with some possible drastic side effects - I already have various side effects from the 2 former mentioned drugs. Am just feeling a bit fed up with the whole process right now.
Anybody out there have any experience that they can share?
By the way - I don't have GCA in my head - it only presents itself in my body - I have no pain - a blessing for which I am very grateful and also I haven't turned 60 yet, so as I understand it I am younger than most who have this ailment?
Any input would be very welcome - especially if anyone is being treated with Mycophenolatmofetil.
Thankyou.
3 likes, 32 replies
tina-uk_cwall janet08828
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janet08828 tina-uk_cwall
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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
EileenH janet08828
Posted
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.
EileenH janet08828
Posted
All the reading I have done suggests that methotrexate is of little value in either GCA or PMR, except if it does change the way the patient metabolises pred. The overall results suggest it doesn't make any difference to longterm flare and/or relapses though when used for well over a year it may reduce the amount of pred slightly. It has no effect on the side effect profile.
I too probably have large vessel vasculitis in my upper body - judging by the original symptoms at least although noone ever did any appropriate imaging to find out. I know quite a few people on the forums whose PMR or GCA occurred when they were in their 50s - I was 51 when the symptoms started. Often what happens is that the doctors are so fixated on the old age guidelines of "over 55" that they fail to understand that while it is unusual in younger patient it DOES happen so fail to diagnose it until much later. The current guidelines say "over 50" - still doesn't mean it doesn't happen younger! The rheumatologists also seem not to know that there is an almost identical disorder which occurs in much younger patients - so if young and old can have it you would imagine there is no real reason why the middle-aged can't have something similar too!
You are by no means the first person to have been put on mtx and then a flare of symptoms has occurred at the lower doses necessitating a return to higher doses. I am extremely sceptical about the role of mtx - would it maybe NOT have flared had you been on a slightly higher but adequate dose of pred?
tina-uk_cwall EileenH
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janet08828 EileenH
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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
EileenH janet08828
Posted
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...
janet08828 EileenH
Posted
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
EileenH janet08828
Posted
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.
janet08828 EileenH
Posted
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.
gpgp tina-uk_cwall
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Emis_Moderator gpgp
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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
tina-uk_cwall Emis_Moderator
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christina
gpgp Emis_Moderator
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Emis_Moderator tina-uk_cwall
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See http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Simplest way is click the envelope under the Apple avatar to the left.
EileenH tina-uk_cwall
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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.
tina-uk_cwall EileenH
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thank you, christina
EileenH tina-uk_cwall
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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.
tina-uk_cwall EileenH
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EileenH Emis_Moderator
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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...
EileenH gpgp
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"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.
gpgp EileenH
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EileenH gpgp
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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...