GCA and prednisolone reduction while taking Leflunomide

[DogAgilityObsessed]

Hi everyone, I thought I'd give you an update (while apologising for not being around recently).

GCA diagnosed last December (PMR previously diagnosed 2020). 60mg pred for a few days then reduced to 40mg and then reductions down to 25mg by the end of January when I started 10mg Leflunomide. After a month LEF increased to 20mg. I continued to reduce pred at the rate of 2.5mg every two weeks until I reached 10mg. Admittedly I was worried at the speed my Rheumy wanted me to reduce but I went along and all worked well.

I'm feeing good. I have more energy than I've had for a while and generally all is positive (just some muscle soreness and aches when I overdo things). And this while I am having stress of my 89 year old mother having to move to a care home against her wishes and blaming me!

I've now had a further Rheumy consult and he has proposed reducing pred by 1mg a month until I reach 5mg. I asked about tapering but he said to simply reduce each month. It seems scary but I'm going with his instructions while I feel good. He has said to get in touch if I experience any symptoms/problems.

In terms of LEF side effects, at this stage the only thing I notice is some urgent need to poo. But it's manageable. My weight has remained constant (I eat masses but have reduced alcohol because of the LEF). I know that some other problems can occur with LEF further down the line but for now it's all good.

I know I still have a way to go but I hope this may help anyone in a similar position.

[PMRpro Ambassador]

Good to hear LEF has worked for you - like MTX it seems a bit hit or miss for PMR/GCA. Hope it carries on the same.

[Omakaat]

Good for you. And glad to read about someone reducing from one day to the next, and it works. I tried different schedules, as mention in this forum. For now 1,25 mg steps, smallest steps available in the Netherlands, every 4-6 weeks, but I am quite fearful. The internal medicine specialist treating me insist this is do-able. So glad to read about your good results!

[DorsetLady PMRGCAuk volunteer in reply to Omakaat]

Many with GCA can do overnight reducing successfully - I did for the first 2years until I reached single figures on Pred, which also happened to coincide with my husband passing.

No additional medication other than Pred.

You must remember that the majority of patients who get through GCA and/or PMR relatively easily have no need for this forum.

[Ritz02]

I have been on Leflunomide 20mg for about 3 years with little bother and no prednisolone . I have had bit of gut problems but recently started using Io fibre water which has helped and gut has been settled .

[Sharitone]

I don't know anything bout LEF, but boy, did this resonate: I am having stress of my 89 year old mother having to move to a care home against her wishes and blaming me!

My parents are also 89 and muddled and refusing care and accusing me: 'Are you part of this plot to have me declared mad?' Say no more, but you have all my sympathies!

[Blossom20]

Hi! Good to hear from you! And I'm so glad everything seems to be going well regarding your Gca/pmr and meds. Well done - you've had a challenging time with it all. Best of luck with your mum.

Keep us posted.