Saw rheumy yesterday, he scanned my temple to check the artery that had originally confirmed GCA diagnosis. (I told him that I'd heard about Prof Dasgupta checking his patients on this forum) Apparently it has returned to normal, no signs of permanent damage. My CPR has been normal since starting on pred in April 2020.So all good apart from being on 10mg ( after many ups and downs) and feeling seriously fatigued all day. (Crawl back to bed after an hour of very minor activity)
He wants me to start leflunomide to help with reducing the prednisolone. After reading up about leflunomide, I'm not sure about it, so would welcome advice.
Written by
Sammo47
To view profiles and participate in discussions please or .
Hello, Sammo47. The Prof put me on 10mg daily Leflunomide in 2022 after diagnosing asymptomatic large vessel vasculitis (aneurysm). I was on 5mg Pred at that time and reached zero pred in January this year. I’m still on Lef and expect to be for some time. It took me a good couple of months to agree to the Lef, I took the plunge and I haven’t had any noticeable side effects.
By that stage your adrenal function also has to wake up - and all the lef does is (hopefully) keep the PMR quieter allowing less pred, It does nothing otherwise to compensate for the lack of adrenal function. And it isn't uncommon for the lef side effects to be too much, especially if neuropathy turns up after a year or so and then you have to stop the lef. You are back where you started, and sometimes need even more pred if the PMR is still active.
Thanks, I think I'll try to taper slowly without Lef. I already get some tingling in my toes, is that neuropathy? Also I have GCA not PMR, does that make a difference?
It could be - and no, not a lot of difference between GCA and PMR but to be honest, not sure what reputation lef has in GCA. Even the studies on its use in PMR are pretty small.
Hi everyone… I’ve been on 10 mgs Lef for about 9 months because after the allowed year on Tocilizumab stopped, I had a flare. Not sure what major effects, if any, it’s having on me, except my hair is falling out in handfuls ( luckily I had quite a lot ) and it upsets my stomach on and off. Would still rather not be on it. I haven’t read enough about it, after 4 years I just acquiesced. But I know one should be more diligent in researching what we put into our bodies… one just feels “at the mercy” sometimes
If it doesn't cause nasty side effects (and let's be clear, some aren't pleasant!!) then it might be worth it. However - I'd suspect your problems at present are more adrenal-related than GCA related so I don't know it will help much. You are still going to have to wait for adrenal function to catch up.
Very slow reduction of Pred from about 8mg (sometimes from 10mg) depending on how quickly your adrenal axis recovers. The only way to trigger it is by being chronically low in Pred/cortisol but at the same time not being so low that your body goes into a crisis. Dropping by 0.5mg over weeks (I did anything from 4-14 weeks per drop) is the way you get through this if you are affected. Sadly, if your axis doesn’t spring into life as fast as your doctor wants the Pred down, it can cause some conflict of interests. Lefluonamide will not help this part. The difficulty can lie in deciding whether your deep fatigue is illness related or low cortisol.
My rheumy says that my current dose of 10mg should be plenty to compensate the natural production of cortisol, so that would imply that the fatigue is illness related??
My rheumy says that my current dose of 10mg should be plenty to compensate the natural production of cortisol,
Maybe, maybe not…we have had members on here who have had adrenals issues at that dose. See this from my adrenals posts-
‘WHAT HAPPENS WHEN YOU ARE ON STEROIDS?
The body normally makes approximately 30mg of cortisol per day although that is not necessarily a constant level, measurements of 300mg have been measured in patients undergoing surgery. 30mg of cortisol is approximately equivalent to 7.5mg of prednisone.
Once you have been on steroids for more than 2-3 weeks and at a dose higher than 7.5mg (which is roughly equivalent to the normal cortisol production by your Adrenals [does vary between 5-10mg, sometimes higher, for individuals] known as the physiological level they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.
That means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena! Even on higher doses of Pred where perhaps you would not expect to feel fatigued or stressed you do, and that’s because you don’t get that extra “oomph.”
If your normal physiological level pre Pred was in around 10mg then it’s quite likely they may be trying to wake up.
Thanks Dorset Lady. In the first two years on pred I was able to reach 7mg several times without problems. In January this year I was coping fairly well on 7 and got down to 6.5 but then had some infections that flattened me, and I had to increase. As I live alone and am barely coping on 10mg I'm worried about tapering. My rheumy thinks that the Lef will help me with that. But I'm not happy about the Lef so now I'm thinking of giving very slow tapering another go.
Maybe the infections have left your adrenals struggling - as we know from others experiences they affect a lot more than we realise.
But your comment - In the first two years on pred I was able to reach 7mg several times without problems - does ring an alarm bell… if you had more than one attempt to get to 7mg… then something was not quite right.
Fully understand about living alone… so follow your own gut feelings and stick with the slow taper….that will help your disease and your adrenals… and doesn’t matter if it’s slow. You need to do what you feel comfortable with.. good luck.
The lef might help the PMR aspect - or it might not. Like DL, as soon as I read "I was able to reach 7mg several times without problems ", the alarm bells rang. You can't force it, just doesn't work. If you flare at the same dose more than once that is your body telling you you have got to your interim destination, stick there for a bit. It doesn't mean you won't get lower, just not yet!! And once you yoyo it makes all later attempts harder.
At least when we live alone, we make the rules, There is no-one nagging us to jolly up ...
I wasput on Leflunomide in Autumn 2022 after being diagnosed in March with PMR and GCA in June. By April 2023 I had developed gut issues, skin problems and peripheral neuropathy. Referred to neurology urgently but there was a 10 month waiting list. Gut problems worsened so constant diarrhea, uncontrollable so I couldn't leave the house. Rheumatologist said stay on Lef but could reduce a bit. I suggested it could have caused the peripheral neuropathy but he left the room saying 'I'm not a neurologist '. Too much to ask that if you prescribe something you might know possible side effects? I stopped it altogether. I spent a fortune on a private neuro who did many tests and eventually said it was problems down to Lef, after I had suggested this and referred him to some studies. Said it might or might not improve and I'm left with impaired function in hands.Had a colostomy for gut issues, microscopic colitis, took months to subside and become manageable.
I know many people are quite OK on Leflunomide and my reaction was unusual. But my advice would be to be aware of any unusual issues, even months after starting it, and don't delay asking your medical people whether it could be Leflunomide, and whether you should come off it in case.
I gatherit can take some time for effectsto show, and it can stay in the body for a long time. I think it's possible for them to 'wash it out' of the body, but I didn't know that at the time and nobody mentioned it.
All the best, and I hope I haven't alarmed you, but just be aware.
"Rheumatologist said stay on Lef but could reduce a bit. I suggested it could have caused the peripheral neuropathy but he left the room saying 'I'm not a neurologist "
That is disgusting - and I would make a complaint. It is a known and not uncommon adverse effect and is listed on the side effects. You are right - if he doesn't know the possible downsides of treatment he is handing out - AND then insisting patients continue with, he shouldn't be using it.
I am off prednisone but have arthritis now in my good had. My rhumitologist who I just fired (another story) put me on Lef and I was like you so sick. Throwing up. I took myself off asap.I don't know how this drug helps pmr/gca
I’ve been on LEF since the beginning of this year. I’ve now reduced pred to 5mg and staying there until I speak to rheumy again. Minor side effects to the LEF all bearable.
BUT I am currently suffering fatigue breathlessness irritability muscle aching dead feeling in arms and legs especially at night and a whole raft of other symptoms. These may be due to something else and GP testing more for anaemia.
I was also put on lef, along with pred and then had tocilizumab added as my GCA was being rather stubborn. Unfortunately I now have neuropathy in both feet. I no longer take lef and finally stopped pred 6 months ago after taking it for 4 years.
Well GCA WOULD be rather stubborn to LEF - Prof Dasgupta was of the opinion it had no role to play in GCA though he did a study that made it out to be pretty good for PMR. And whatever else you might say about him, when it comes to GCA, he really does know his stuff.
For GCA? His study was for PMR but never seemed to be taken up by anyone else for a bigger look at it, his was only about 23 patients to start with, some dropped out because of the side effects and someone else who was in the study told me it wasn't a particularly loved drug!!
Hi Sami,I have GCA.MTX no good for me,put on Leflunomide ,had chronic diahorrea,and real bad fatigue,much worse than before I took it,so after raised liver tests,told to stop it immediately.Everybody different I guess but I hated it with a vengeance!Good luck with what you decide to do.x🌼😜
It's possible, in my experience, that if you're still suffering fatigue you're probably not on enough Pred. I can only speak from my own experience but for me, fatigue was a sign of inflammation not being under control which diappeared at higher doses. I tried Lef a few years ago, it did nothing for me and caused tingling in fingers in toes (peripheral neuropathy) but that doesn't mean it won't work for others, even though it is a very long shot as it's not a drug used as a standad in PMR. I personally have had more success with Hydroxychloraquine. Every one and every case is different and you don't know til you try it
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Dental work while on Leflunomide
Leflunomide 
Leflunomide
