Prednisolone together with Leflunomide

[membership]

I was diagnosed GCA in April 2018 (confirmed by biopsy) and have been reducing from 60mg. pred. since then. Each time I reach 7 - 5mg I have a flare and have to increase the dose again (now on 9mg). My Rheumy has just prescribed leflunomide (20mg) hoping it will help me to reduce the pred. I understand that it will take time to show any effects, and have blood tests arranged for 2, 6 and 10 weeks. The side effects, as shown on the documention are clear, but it is the beneficial effects I want to query. Question: have any of the group taken pred. together with leflunomide ? .. if so, when can I expect to notice the effects, and what should I look out for ? Any comments welcomed ! Thanks.

[DorsetLady PMRGCAuk volunteer]

No experience of Leflunomide, but I did have GCA.

Can I ask how you are trying to reduce once you get to 7mg?..and maybe from 10mg down.

Once I got to 10mg I reduced by 1mg per month, and from 7mg only 0.5mg every 4/5 weeks using my version of slow taper - no issues -see attached - healthunlocked.com/pmrgcauk...

I found it took almost as long to get from 10mg to zero as it did from 80mg to 10mg... not all doctors appreciate that, and any dose below 7mg is doing very little harm compared to the high doses you've been on.....so slowly, slowly (which also helps the adrenals wake up) may be the better option than adding in another drug with its own problems. just my opinion, but worth consideration.

[membership in reply to DorsetLady]

The first time, I reduced fairly slowly down to 10mg on a monthly basis, and then 1mg every 2 months to 7mg... then a severe flare.. back to 30mg. Reducing again, 1mg per two months down to 10mg and then 0.5mg per two months to 5.5mg.. then a three day headache.. panic ?? So, back to 20mg for 2 months, 15mg for 2 months, 10mg for 2months. I reduced to 9mg on 5th Jan and started the leflunomide this morning. I am very happy with my Rheumy, but it would be nice to know what to expect from someone who has been on this medication.

[eternalgardener in reply to membership]

Predisone has been a roller coaster ride. Started with 25 MG when diagnosed in 2014, after therapy for a torn rotator cuff did not work. I could not have the rotator cuff repaired due to high inflamation numbers. It took a while to get relief. In the meantime I installed hooks in the closet (could not raise my arms to reach hangers), put hooks in the laundry, bought grabbers for several rooms, moved dishes to lower cabinets. I had severe neck pain, shoulder pain and stiff upper arms - could not raise them. When the worst symptoms resolved, I reduced slowly to 5 MG. Had an awful flare, back up to 15, then got down to 2.5 - another flare. Now my hips and upper legs hurt, sometimes have rubber legs. Am now on 10 MG per day, taken mid morning after eating. Pred causes insomnia, hunger, shifting moods, and recently OCD (maybe - who knows what's causing that). I have osteopenia - fair bone density. This site is a blessing, I have learned so much and look forward to finding more ways to deal with this awful disease and helping with encouragement and information.

[123-go]

Hi there. I was diagnosed with PMR in February 2018. In the autumn of last year I was given an axillary ultrasound scan which showed very active GCA/LVV with aortic involvement and Leflunomide was recommended.

After much thought (having read the side effects and weighing up the risk v consequences) I agreed to take the Lef. I was on 2.5mg Pred then and am still along with 10mg Leflunomide.

I've had no noticeable side effects after 3 months but as you say, any effects could take 6 months to show themselves. I'm remaining positive 🙂.

You should have been given an NHS booklet on Leflunomide which explains side effects. If you haven't you can look for it online and hopefully come to a decision as to whether or not to take it.

[membership in reply to 123-go]

Many thanks... I have the literature and read it, but getting feedback from people actually taking the medication is invaluable.. the side effects are one thing, but knowing what beneficial effects to look out for are another. I took my first dose this morning, so I have a long time to wait.. I'll try to be patient ! Thanks again.

[123-go in reply to membership]

I know what you mean about trying to be patient! Bloomin' hard sometimes. I'll keep my fingers crossed for you.

[membership in reply to 123-go]

Thanks ! I am patient by nature, but this taper business stretches my patience somewhat !! I feel I am exceptionally lucky with my Rheumy and just hope she will see me through it all. What's another pill, eh?

[123-go in reply to membership]

Good to hear that you have confidence in your rheumy. It does no harm to try to find out more about any drug you're offered as that helps in coming a decision. For me personally, after listening to my rheumy's advice and reading up, I felt I had no choice considering the diagnosis I'd received.

[PMRpro Ambassador]

I do have to ask why, after not yet 3 years and at a dose of 9mg, barely outside the physiological dose of 8mg, he wants to add something that isn't proven to the mix, especially given that is adding another layer of adverse effects.

Was that 3 day headache at 5.5mg definitely the GCA? Even so, going back to 20mg was probably over-reaction, 10mg might have been enough if done quickly.

[membership in reply to PMRpro]

In retrospect I think I over-reacted to the headache, but it was so like the original headache, I wanted to stop it before it caused any damage. It all started with an headache and then sudden paralysis of my VI Cranial nerve. There were no other symptoms and the positive biopsy was a bit of a surprise to us all. I took the 20mg and contacted my Rheumy. She has been so very helpful all along and the advice she's given me to date has been excellent, so I was happy to go along with her advice this time. I was hoping to get feedback from others on this site who were taking both drugs, so as to be aware of the beneficial effects when they finally begin to show; the negative (side) effects are well documented.

[PMRpro Ambassador in reply to membership]

I honestly don't think there are many with GCA on leflunomide - to my knowledge there is only anecdotal evidence or very small studies, there have been a couple of studies looking at it as a steroid sparer in PMR, one showed apparently very good promise but it was never really adopted as a concept. However, I found this Norwegian study:

ncbi.nlm.nih.gov/pmc/articl....

which seems to think it is worth trying. Like methotrexate - if you have no intolerable adverse effects then it is worth a try. I do know someone with PMR who initially got very good results with leflunomide but had to stop because she developed neuropathy. She restarted at half the dose (10mg) and finally settled at 15mg. She did well for a time but I believe she then had another flare.

[membership in reply to PMRpro]

Thanks.. so far, it seems a case of 'suck it and see'! Ah well, I started today so I will just have to wait and see the effects. My Rheumy said it works very well for some, but is no help in other cases.. fingers crossed. I think she is concerned that I'm having problems around 7mg dose of pred. and it might... just might... help to get me to a lower dose. I had the impression, speaking to her, that we should have an idea if it is going to help by 3 months, and certainly, by 6 months. She wants me to have a series of blood tests, including CRP, so at least I shall be monitored throughout. Thanks for the paper.. I'll read it.

[PMRpro Ambassador in reply to membership]

7mg is often a sticking point - and it isn't just due to the PMR/GCA. That is the physiological dose where adrenal function has to start wake up and it can be rather slow. This is the point where you need to really slow down with the taper - 1/2mg at a time and definitely no more than monthly, possibly less often. Unfortunately many doctors just want patients to press on regardless, some even want them to speed up.

But at least she has been honest with you - that is a refreshing change.

[membership in reply to PMRpro]

I realised 7mg was going to be difficult and I was so pleased to get to 5.5mg.. from 9mg; I tapered at 0.5mg per two months, and thought I was doing OK... until the headache struck ! I was SO disappointed. Never mind, I'm trying again. I intended to go even slower.. maybe 0.5mg per three months, but my Rheumy suggested we try leflunomide.. so I'll try it her way.. nothing lost, just months !

[membership]

Thanks, that is very helpful. I understand I am to take the leflunomide for 6 months, to try to get me to a lower pred. dose. My next appointment with my Rheumy is in 3 months, so I will discuss this with her. The idea of the leflunomide was to get me on to a lower dose of pred. I live in hope !!

[membership]

Maybe if the six months' will be sufficient.. but it is useful to know to look out for infections if she wants me to continue thereafter. Many thanks, I very much appreciate the feedback.

[Surami2020]

I have been on prednisone since being diagnosed with PMR in March of this year and have started leflunomide in November after a change in diagnosis to psoriatic arthritis. The leflunomide has been very successful in treating my pain and inflammation alongside the prednisone. I am currently able to reduce the prednisone down to 7mg after stalling at 9mg since July and the withdrawal pains have been much less then when I started tapering earlier in the year. Initially using the leflunomide I broke out in a rash over most of my body but has reduced greatly and does reduce using antihistamines. The main problem I have is that I get constant painless mouth ulcers and at times peeling skin in my mouth and also inflamed gums, mouth and throat. I did get large painful oral blisters in the first 6 weeks but taking folate has cured that problem and reduced the severity of mouth ulcers. I also find taking berocca (vitamin supplement drink in Australia) reduces the some of the inflammation in my mouth also.

[membership in reply to Surami2020]

Many thanks for the information.... I'll keep a check on my mouth and throat and hope to find nothing ! The problem is medication seems to have so many unwanted side effects !

[Daughters2 in reply to membership]

Sounds like you have a really good rheumy -My mum has GCA and a few months ago hers recommended tocilizumab which I believe has similar effects to Leflunomide. To help taper and prevent flares. No adverse effects so good luck with it x

[membership in reply to Daughters2]

Yes, my Rheumy is excellent.. I can e-mail her at any time and she responds with advice/help the same day - not that I do it very often, but when I need help, it is such a comfort to know she is available. Fingers crossed I don't get too may unwanted side effects and the pred taper succeeds.

[madhouse1 in reply to membership]

She sounds a diamond!

[membership in reply to madhouse1]

Absolutely... it was my lucky day when I was assigned to her care !

[PMRpro Ambassador in reply to Daughters2]

Leflunomide and tocilizumab are two totally different kettles of fish. Tocilizumab has a very specifically targeted effect on the production of IL-6, the inflammatory substance that is the main cause of inflammation in GCA, It induces total remission in half of patients and leads to a large reduction in pred dose in the rest (there are two other mechanisms producing inflammation in GCA that TCZ doesn't work on).

Leflunomide suppresses immune activity in general - which is why it tends to be associated with infections.

[membership in reply to PMRpro]

Interesting ! Thanks... I will wait and watch !

[Tonylynn in reply to PMRpro]

My wife was diagnosed with GCA in Jan 2017. Eventually she was able to reduce the pred to almost zero but after a pacemaker had to be fitted she had chest pains. This was diagnosed as pericarditis but got worse along with neck and shoulder pain. and feeling constantly unwell. A cardiologist suggested a "pain clinic" as the heart was OK and a new rheumatologist said it was ME (as ESR and CRP were OK !!!!). The newest rheumatologist is first class (but sadly only a locum) and a PET/CT scan has shown some aortic inflammation. A further more localised PET scan is to be carried out and the consultant agrees that TCZ may well be the route to be taken. The pred has been raised from 7 to 10 with little effect but a higher dose is going to cause macular problems again. The consultant thinks this is still GCA. Just wondering if IL-6 is usually measured before prescribing TCZ and what are the other mechanisms you mention and associated markers? Am I right in thinking chest pains are not usually associated with PRM / GCA ? Are they with aortitis?

[PMRpro Ambassador in reply to Tonylynn]

Most likely the GCA is affecting the large vessels - it isn't that uncommon

academic.oup.com/rheumatolo...

Shame you may lose that rheumy - he sounds with it and up-to-date! I don't know whether they check the IL-6 to be honest. Not all labs can do the test.

The other two mechanisms in GCA involve T cells and macrophages - but don't ask me the details.

pubmed.ncbi.nlm.nih.gov/120...

[Tonylynn in reply to PMRpro]

Many thanks. Where would we be without you.

She not he !!! Very experienced and careing.

If IL-6 is low this would suggest TCZ unlikely to help much? Have I understood that correctly?

I assumed the GCA was affecting the aorta but is the chest pain likely to be “referred” pain from aortic nerve. Does anyone else have / had chest pain associated with “mild” aortitis? (I know it is a symptom of aortic aneurysm but PET would have shown that, it also eliminated pericarditis).

[PMRpro Ambassador in reply to Tonylynn]

Possibly but it is almost always involved to some extent, hence the 50/50 effect, even those who don't get off pred get to a much lower dose.As for the pain - no idea at all.

This

vasculitisfoundation.org/ed....

says "Most symptoms of aortitis are associated with the underlying disease. They include back pain, abdominal pain and fever, along with headaches, weakness, weight loss, joint pain, chest pain, shortness of breath, fainting, visual disturbances, and others."

The aorta is inflamed, it must be painful you would think.

[HelenDaisy in reply to PMRpro]

Would it also help with PMR or is it specific to GCA? I think I’ll be prescribed one of these as I’m struggling with prednisone taper too.

[PMRpro Ambassador in reply to HelenDaisy]

Tocilizumab/Actemra you mean? Probably, although there have been no clinical trials so it isn't approved by the authorities for funding it is being used by rheumies in the USA. But you won't get it for PMR in the UK and you won't get it easily in the UK as NICE made very restrictive guidelines for its approval. It costs IRO £12K per year.

But the first thing that needs looking at is your taper - flares due to trying to reduce to too low a dose or too fast are common. It took me over 4 years to get below 10mg. Softly softly catchee monkey ...

[membership in reply to PMRpro]

No, leflunomide... it isn't the same medication... I thought 0.5mg per two months was sufficiently slow, but it wasn't ! I wait to see if this added medication helps with the taper this time.

[PMRpro Ambassador in reply to membership]

My reply was actually to HelenDaisy in response to her question to me.

It is not the SPEED of reduction that is crucial in the final analysis although it will often get you lower than you did before. Nothing will get you past the dose you are looking for: the lowest effective dose, that gives the same result as the starting dose did. To get to 7mg before sticking is actually pretty good. It doesn't mean you won't get lower - just not yet.

[membership in reply to PMRpro]

OOPS... sorry !

[PMRpro Ambassador in reply to membership]

No problem - happens all the time!

[Surami2020 in reply to membership]

Yes all the medications seem to have many side effects. After the terrible side effects of methotrexate I had when only on it for 8 weeks I have changed what I will put up with. I was so sick on it without realising just how awful I was feeling until I started leflunomide. For me leflunomide has been an easy ride in comparison and I am 99% pain free after 2 years of pain. I can only hope it will continue to work for many years and the side effects will reduce. I hope leflunomide continues you on successfully tapering down the prednisone without too many side effects.

[membership in reply to Surami2020]

Thanks.. this is very encouraging ! Good luck with your taper.

[membership in reply to Surami2020]

Thanks.. I hope it works too !

[Bennej30]

Hi, I have pmr and psoriatic arthritis and currently on 2.5mg prednisalone (down from 15mg) and 15mg Leflunomide (down from 20mg) about to reduce to 10mg.

I was given methotrexate first but didn’t get on with that so switched to leflunomide.

I can’t be much help though as I was diagnosed January 19 and have steadily reduced without any major flares so unclear if this is due to leflunomide or not but as I seem to have had a relatively easy ride compared to some on here maybe it has.

I did develop quite bad tummy trouble which I put down to the lef but after taking advice from here I reduced my omeprazole and that has helped enormously.

[membership in reply to Bennej30]

Thanks.. I'll keep a check on it, since I take omeprazole too.

[Manihiki]

I was on prednisone and methotrexate but because every time I dropped down from high levels usually below 40 my CRPS would spike so after exhaustive tests in hospital to exclude anything else I was changed from methotrexate to lefludomide. The first two months my CRPS continued to fluctuate so Cellcept (mycophenolate) was added in and from then on I was able to reduce the prednisone slowly over two years to zero. Unfortunately I had a flare three months later so am again making a slow taper but 15 mg of prednisone worked this time. I have foot neuropathy and my rheumatologist says that is the lefludomide and that it will go. I think it is working for me

[membership in reply to Manihiki]

Thanks.. it's a help to hear some positive news !

[lesley2015]

HiI was diagnosed with GCA/PMR June 15.

I have been on several 'add on's with Preds, including Leflunomide. My Rheumy randomly put me on it and then after many months took me off it! I think she thought it would help with my arthritis too but I see different Rheumy each time.

But as I remember, it was one of the better add on's, I could not tolerate Methotrexate or Salazopyrin. I did get headaches but I am not sure if these were associated or not as I do get cervocogenical head pain.

I am currently back down to 6.5 and they are discussing putting be on another steroid sparer which I shall refuse this time.

Good luck

[membership in reply to lesley2015]

Thanks..that’s interesting... and hopeful ! Whilst I appreciate the effect of the steroids on the infammation, the side effects make me wish I’d never started on it ! Fingers crossed the next attempt at taper goes well. Good luck with your taper

[PMRpro Ambassador in reply to membership]

What side effect problems do you have? I had some awful ones with methyl prednisolone but never so bad they made me regret taking it even though it didn't work very well for me. Many of the problems can be mitigated when you know how.