Leflunomide and tapering prednisolone for GCA, advice please

[Raga72]

I was diagnosed with GCA in September this year and started on 30mg of prednisolone based on half a mg per kg of body weight. This seemed to be lower than some of the recommended starting doses such as that used by Dr Mukhtyar in Norwich but rheumy not too pleased when I said this! I was asked to reduce by 5 mg each month until I reached 15 mg in January. The main symptom has been a fairly persistent but not severe pain in the right temple. The are which showed GCA in the ultrasound scan. This certainly lessened both in intensity and in frequency with 30 mg but started to return as I tapered the dose to 25 mg, until at 20 mg it returned to the level it was at before I started treatment.

I had a telephone appointment with the rheumy earlier this week and he said that since I could not reduce the steroids without the symptoms reappearing I should start to take Leflunomide as well and this acts in a similar way to the steroids and would let me continue to reduce them. I am not keen to take the Leflunomide because it means taking another powerful drug with worrying side effects and asked to continue with a higher dose of prednisolone. He would not agree with this and has sent me a prescription for Leflunomide. Should I try this or just hold out for continuing with prednisolone at 30mg or higher? I have requested an appointment with Dr Rod Hughes for a second opinion so hope to get one soon but would very much welcome the views of members of the group.

[DorsetLady PMRGCAuk volunteer]

30mg is lower than the BSR guidelines as well - they state between 40-60mg depending on whether there are sight disturbances or not….and you shouldn’t be reducing whilst you still have GCA symptoms.

Also in the guidelines, the treatment for a relapse is to return to the dose where your symptoms were controlled - but not sure you ever achieved that.

I think you need a new Rheumy - certainly one who understand the illness - which I must say I don’t think your current one does…and to be frank his approach is leaving you open to continued relapses….and maybe even sight loss.

[Raga72 in reply to DorsetLady]

Thanks for your comments. I am worried that my symptoms are not being controlled and, as you say, never have been completely. I think I will try to find a new Rheumy. I have been disconcerted by some of the things the current one has said and he is not open to discussion of any kind. I hope that if I see Rod Hughes soon he will recommend that I start at a higher dose of steroids and give them a chance to take effect.

[DorsetLady PMRGCAuk volunteer in reply to Raga72]

“Not open to discussion”..another good reason to leave him….

[PMRpro Ambassador]

I would say that the reason you can't reduce is because the starting dose of 30mg was far too low - the minimum recommended starting dose for GCA is 40mg and frankly I'd say your doctor doesn't really have enough experience to try things like that, The BSR guidelines are determined by top experts from all over the world and who is he to dispute that? There is also little evidence that leflunomide works well in GCA. He should not be initiating leflunomide without appropriate blood tests beforehand.

Are you aiming to see Rod Hughes privately? Usually there are appointments within a very short time - but you need an urgent consultation with someone who knows what they are doing. Because I don't think he does.

[Raga72 in reply to PMRpro]

Thanks PMRpro. That is very helpful and is very much what I think. I am aiming to see Rod Hughes privately and have asked for an appointment with him through Top Doctors. I had a call on Friday to offer me an appointment with him on 20th December. I think it may only be a 15 minute appointment. I live quite near Chertsey so perhaps I could transfer to him. The person who rang said they would send me a letter of confirmation. I have not received this yet but I hope it will come in the next day or so and I will feel reassured when I do. I am new to your wonderful support group but I find the advice and sharing of experience quite amazing. It seems from it that there are rheumatologists whose prime motive is to phase out steroids as quickly as possible and I think the one that I have been seeing belongs to that school.

[PMRpro Ambassador in reply to Raga72]

Sounds like it. But if you have GCA you need enough pred for long enough - or you risk visual loss. That isn't to be messed with.

[jinasc]

See Rod Hughes first on 20th and you might find that he transfers you to NHS. He often does this with his patients.

[nallufl24]

I started with 40mg when no one was sure what was wrong with me. After my positive biopsy they immediately upped it to 60 mg.

[Zebedee44]

Hello Raga72, you haven’t mentioned your GP’s input in this. Did you go directly to a Rheumatologist after an A and E admission? To be reducing the pred already and considering leflunomide after such a short time is very strange and in any case you will need your surgery to do the blood tests before you start leflunomide and after a month to monitor the effect. Personally I would hold out on taking the leflunomide and carry on at the higher dose of prednisolone if you have enough to last you or can request more from your surgery. And Rod Hughes will soon sort you out, you can be sure of that.

[Raga72 in reply to Zebedee44]

Hello Zebedee44, the pain in my right temple that I experienced last autumn along with symptoms of PMR and which then seemed to disappear until August this year, returned with the the GCA symptoms more intense and persistent, especially the pain in my right temple. I contacted the rheumatologist I had last seen in November 2021 directly. He did some blood tests which came back normal so he thought it ‘highly unlikely’ that I had GCA but he did organise an ultrasound scan which confirmed GCA and because I had experienced a temporary loss of sight in my right eye in the summer of 2021 he decided this time to start treatment with prednisolone but only 30mg a day. I queried whether this was enough and he was adamant that it was. I started this in mid-September and was told to reduce by 5mg a month until I reached 10mg in January. The pain lessened but did not disappear on 30mg but started to increase when I tapered. I did then contact my GP at the beginning of this month and he recommended going back to 30mg. I have just had confirmation of an appointment to see Rod Hughes on 19th December. I am wondering whether to increase to 35mg a day until I see him. I could ask GP about this on Monday.

[PMRpro Ambassador in reply to Raga72]

If at any time you have any visual symptoms - THAT is a red flag to start on 60mg! I would love to know where that rheumy was getting his info - it wasn't from any guidelines I have seen.

They may mess about with doses for PMR if they like but in GCA it is your vision they are putting at risk. You would have thought he would have learned when the u/s confirmed GCA despite normal range markers.

You could email Rod Hughes secretary Jody, tell the story you have told us and ask advice what to do until the 19th (thought it was the 20th?)

finder.bupa.co.uk/consultan...

his contact details are at the bottom of the page.

[Raga72 in reply to PMRpro]

This morning I decided to telephone a number I had for Rod Hughes’s private clinic and it turned out to be Jody’s number. I left a message saying that I had received no confirmation of the appointment offered on 20 Dec. She rang back to say that she had no record of this and blamed a third party website who were supposed to arrange this (maybe I should not name it). However she said she could arrange an appointment and the first available was on 19 Dec so I was very pleased to accept that.

The consultant radiographer who carried out the u/scan agreed when I said that I was sure that I had seen of research which indicated that a not insignificant number of people have PMR and GCA with raised markers. And he added the rheumatologist knows that! However he did not seem to know it or otherwise he was not admitting it! His explanation in my case was that the arteritis is very localized.

[PMRpro Ambassador in reply to Raga72]

B*££*^%s - excuse my French! That rheumatologist appears to not know much about vagaries of GCA. Oh I don't know - mention the site - as a warning it is unreliable. Jody is a force to be reckoned with. ANd now you have made the contact - you're on to a good thing.

[Raga72 in reply to Raga72]

I meant a not insignificant number of people do have PMR and GCA without raised inflammation markers!

[PMRpro Ambassador in reply to Raga72]

I assumed you did! SO easy to lose the "out", I do it all the time.

[Zebedee44]

What good fortune that you contacted Rod Hughes office today if the appointment was not even in his diary. You definitely need the right treatment and sooner rather than later. The additional stress you are dealing with will probably demand more pred and you should take what you need to keep the pain under control.

[Raga72 in reply to Zebedee44]

Thanks, Z. His secretary said the same because if I hadn’t I would still be waiting for a nonexistent letter to arrive. I will see how things go today and whether to up the press at all. Oddly PMR symptoms have returned such as aching upper arms and shoulders despite 39 mg of prednisolone.

[PMRpro Ambassador in reply to Raga72]

What have you been in the last few days?But PMR symptoms at a higher dose than you might expect can be a sign of GCA being the cause as it often needs quite a bit more.

[Raga72 in reply to PMRpro]

I have not been too bad really. The pain in the right temple is fairly mild but more persistent than it has been, prob the result of tapering to 20mg in mid November. I am back on 30mg now. The aching in shoulders and arms, and to a lesser extent legs seems like the PMR I had last year. Perhaps I will up the pred to 35 and then talk to my GP on Monday, or call Jody as you suggested. Thanks for your response and support. Much appreciated.

[DorsetLady PMRGCAuk volunteer in reply to Raga72]

"The pain in the right temple is fairly mild but more persistent than it has been.."

Think that probably justifies an increase in dose to be honest.

[PMRpro Ambassador in reply to Raga72]

For the record - I agree with DL. You need more ...

[Raga72]

Thanks to both of you. I did take an extra 5mg today - 35mg in total.

[PMRpro Ambassador in reply to Raga72]

Has it helped?

[Raga72 in reply to PMRpro]

Yes I think maybe it has. Pain seems less overall.

[DorsetLady PMRGCAuk volunteer in reply to Raga72]

Good…