Reduction of prednisone

[Rrnijmv]

I was digonosed in January with GCA I have had a couple of flares I'm now at 60mg . Spoke to rumatoligest today he has told me my inflamation is ok and to reduce 10mg ever 3 day untill I get to 10mg then 1mg a month he is also going to send me for an MRI and to a nurolgest and a chest xray if all ok he is going to put me on somthing to help me get off prednisone. I do think this is going to be very quick and by the time I have done this I bet I won't even had the tests. Has anyone else done this?🤔

[DorsetLady PMRGCAuk volunteer]

Wow....has he decided that now you don’t have GCA......hope he’s not just based that on inflammation markers......of course they are “okay”. But that just proves the steroids are working on inflammation part of GCA, not that you don’t have GCA.

Good luck and please monitor your reactions to the fast taper, and seek advice if it all goes to rats....

[Rrnijmv in reply to DorsetLady]

He seems to think the gca is under control but like you I think it does seem to be about the inflammation markers which he said are ok. I'm just going to have to be very careful and keep a eye out for changes . It's a bit scary but I suppose I need to try😥

[DorsetLady PMRGCAuk volunteer in reply to Rrnijmv]

Yes you do, but as I said please monitor carefully and seek immediate advice if necessary. It’s not going to be easy nor very pleasant.

[PMRpro Ambassador]

OMG - someone who thinks that GCA is an acute disorder that needs a short burst of high dose pred and get off it.. What hospital is this?

This is a more recognisable sort of reduction scheme for GCA:

rcpe.ac.uk/journal/issue/jo...

Their taper is on p6/346.

It is in line with ALL the internationally recognised tapers suggested for GCA so I have no idea where they get the idea from that that is even worth risking, especially since I understand you to mean you have already flared a couple of times in less than 3 months. Your inflammation markers are OK because you are currently on enough pred to manage the inflammation

Someone may be able to give the link and taper suggested by NICE for GCA. I can't as the site just tells me I'm foreign and can't look at their site

I really don't know what to suggest except speak to your GP and see if they are more au fait with the management of GCA in the first year or so. The best alternative might be to see a recommended specialist privately - but that isn't cheap.

The rate of reduction quoted in the new BSR guidelines is 10mg every 2 WEEKS down to 20mg. See Table 2 here:

academic.oup.com/rheumatolo...

From 20mg the reduction rate to 10mg is 2.5mg every 2-4 weeks.

I would take these to your GP and get him to compare them with your rheumy's concept.

[Rrnijmv in reply to PMRpro]

I'm seeing the gp on the 25th March I'll talk to her then. Thanks for the information ill give it a good look through. He seem to think the gca is ok and it might be somthing else now but he doesn't know what hence all the tests also he is linked to the prh/rsh in telford. He is suggesting a medication to help with getting off steroids I think it began with a L it difficult to remember it all on the phone it a lot to take in. Thanks again for the information I really appreciate it.

[PMRpro Ambassador in reply to Rrnijmv]

Leflunomide probably - but it hasn't been investigated in GCA and doesn't always work in PMR where a few studies have been done which looked good. But even it won't get you off pred at that speed if you DO have GCA, or even if you don't.

GCA is a chronic condition - the only justification for reducing at that speed would be if it definitely weren't GCA and he had proof of that or was looking for proof of that and even then, I would think reducing at that speed will be pretty uncomfortable.

WHY does he now think it might not be GCA?

[Rrnijmv in reply to PMRpro]

He is a bit difficult to understand but he thinks the pain I have got now is not typical gca pain if I understood him correctly that's why he want the MRI and to see neurologist. But if I he said I had gca in the beginning can things really change that quick.

[Rrnijmv in reply to Rrnijmv]

Sorry I forgot to say yes I think it wasLefluomide I'll try and Google it.

[DorsetLady PMRGCAuk volunteer in reply to Rrnijmv]

have sent one link to versus arthritis site

[DorsetLady PMRGCAuk volunteer in reply to Rrnijmv]

Well he either misdiagnosed you, or doesn’t know much about GCA. Bit worrying on both counts!

[Rrnijmv in reply to DorsetLady]

It certainly is . Scary times🤣

[PMRpro Ambassador in reply to Rrnijmv]

No - GCA lasts at least a couple of years, it's an ongoing autoimmune condition. But at 60mg he can't tell ANYTHING and the symptoms now could be the pred or leftovers from the GCA flare. MrsNails has a very good specialist she sees at Gobowen I think.

Personally I would want to see a specialist who I could understand - I don't care what nationality you are, you need to speak so all patients understand. Applies to someone from Glasgow as much as from Newcastle, Prague or Delhi or anywhere else.

[Rrnijmv in reply to PMRpro]

I'll try and get some Dr names I'm in Telford Shropshire if you might have some suggestions . And I'll try Mrs Nails thank you.

[PMRpro Ambassador in reply to Rrnijmv]

So is she - and it is always worth going a journey if the specialist is good. Not sure why she ended up at Gobowen - noone at Telford at the time I suspect.

[MrsNails in reply to PMRpro]

Spot On Pro - they were waiting to appoint someone....

So l went privately for an opinion & he just happened to be from RJAH so he put me on the list to be seen there.

[piglette]

Wow, 60mg to 10mg in just over a fortnight, that is good going. I assume the rheumatologist is planning to give you a steroid sparing product such as methotrexate. Is he assuming you will have problems getting off steroids in the future if all goes OK?

[Rrnijmv in reply to piglette]

Hi yes I think he is but it was somthing beginning with l I'm not sure he was saying so much I can't remember all of it.

[DorsetLady PMRGCAuk volunteer]

Leflunomide -

versusarthritis.org/about-a...

[Rrnijmv in reply to DorsetLady]

Yes I think that's it I'll Google it thank you

[jinasc]

Put this into your search engine, which I just did

"taper suggested by NICE for GCA"

There are numerous links to all the papers issued by NICE on GCA.

nice.org.uk/guidance/ta518/... I think this one might be the one that PMRpro refers to.

However you can take the time to read them all.

[Rrnijmv in reply to jinasc]

Thank you I will. I need all the help I can get.