Hi. ..thank you for any advice....I have been recommended to try adding Leflunomide (hope spelling is correct). I am ok on anything btwn 10 and 7.5mgs.pred...(anything abovery 10mgs...makes me stir crazy// weird in the head and not good) but stuck on 8mgs...have a horrible circus//tinnitus going on in my head day and night....worse at night and general fatigue....
I am mid 50s...active ( was) and still working..now part_time.
Any advice..Add in Leflunomide (not even sure what it is. Does it have another name?). Or should I stick with pred??
You are all very helpful and have more in -sight than the most doctors .
Thank you for any words of wisdom. ..
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moorfield
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I believe that it is a steroid sparer in your case, that may allow you to come off Pred more quickly. Possibly worth a try now.
I know from past experience that the story I tell myself about Pred and me can change. You may find that the “ stir crazy” symptoms lessen.
Do mention Tinnitus to your doc , I get it a little bit - usually one long whistling note. It receded when I got to the low doses and alas, returned when I had to increase. The swooning fatigue, for me, is controlled by regular daytime naps. I enjoy them now and they restore me.
Prof Dasgupta is very keen on leflunomide - he did a couple of small pilot studies with it back in the 1990s and it is his go-to steroid sparer. Rheumatologists seem to like one or the other of mtx and lef and obviously praise their favoured approach!
Leflunomide is a DMARD used in inflammatory arthritis. It has its own adverse effects and the one that seems to put most people off/stops them using it is diarrhoea. I know someone from the Scottish charity who was only able to reduce pred by using mtx but even that was only a couple of mg. She switched to leflunomide and says she felt it "kick in" and she did really well with it. After some time she developed neuropathy and a tremor (known adverse effects) and stopped - and was immediately back to 15mg pred to manage the PMR symptoms. She restarted at half dose and the last time I heard has upped the dose to an intermediate level to see if that works well enough. Time will tell.
Like mtx, the only way to know if it will work for you is to try it,
I was put onto leflunomide by a rheumy who said that my constant flares showed I had difficulty in handling pred. It was done under supervision and I had blood tests and appointments with the rheumy to make sure I had no ill effects with my liver etc. It did get me off pred and I'm relieved at that, but in a few week's time I have an appointment with my rheumy to see if I am clear.
Well the answer is - not yet. Since I've been free of pred (about 2 months ago) I've had only a few days when I felt "normal". I feel like I have a junior version of PMR with aches and stiffness in my limbs. When I walk I feel that some of the muscles in my legs are missing so that I have a slightly autonoman way of walking! Getting out of the bath, doing housework and reading for extended periods of time are very difficult. I'm sure everything will work out for the best and I will definitely let you know the results of my next appointment.
Hi, I’ve been on Leflunomide for around 8 years, being prescribed as a way to reduce pred. At that time I had been taking pred for a 1 to 2 years. I am now on 3 1/2 mg of pred, together with 20g Leflunomide. Given the timescale it is taking a very long time to come off the steroids! I haven’t had any particular issues, although at present have been asked to cease Leflunomide for a couple of weeks because of low neutrophils.
How long have you been on steroids?
It may only be hindsight, but at times I wonder if I had been given more time to reduce the steroids, whether I may not have needed the Leflunomide.
Would certainly be my opinion! The Scottish lady got off pred quickly - and I think if it is going to work you know fairly quickly, she could tell the difference.
Based on your profile you have been on steroids just over a year or so. If it were me I would give it more time on steroids only. lots of people have issue reducing below 7-8mg, which is a physiological level ( equal to what adrenals produce in healthy person). It is usually sticking point because your adrenals are "asleep", inactive since you started pred and need time to wake up and start working again. It is always a compromise between risk of taking new medication ( and it's side effects) and putting up with side effects of pred. Your choice.
Always a bit late joining the party!! I took leflunomide for about 18 months. I was on about 18 mg of pred but found it very hard to reduce. As previously said it is a DMARD and given in addition to the pred to hopefully be able to reduce more successfully.
I was on 20 mg of leflunomide and didn’t really have any side effects for a long time. I did though find it hard to reduce my pred as this drug is also an immunosuppressant and combined with the pred it seemed that I was constantly getting infections and having come down on my pred, then having to go back up again. It also didn’t seem to affect my ability to reduce or not. I think the crunch came when I developed peripheral neuropathy. I had already got it in one foot, which was very manageable but then it developed in the lower calf of the other leg and was excruciating. This meant that I was unable to sleep with the pain. It was mostly because of this developing and one of the side effects of leflunomide being peripheral neuropathy that,with my Consultant Rheumatologist‘s agreement, I came off Leflunomide. It has been a long hard road but just on pred I have now managed to reduce to 10 mg ( I have never been as low as this)
Obviously this is your call but I would consider first doing a very, very slow reduction with one of the reduction plans mentioned on this site and no more than 1/2 mg at a time and see how that goes. It doesn’t matter if it takes a long time as long as you achieve each step pain free. You are also at a well accepted “tricky” stage anyway.
By the way the other name for Leflunomide is Arava.
Thankyou for that info....I hear what you are saying and sorry you have had such a rough time with side effects..
You have reinforced what I was thinking.....not keen on adding another drug . ..so may stick with pred for longer and I will have to be patient....( not easy when you are used to being active , working etc )
I have to say - it is the thought of neuropathy that scares me witless! That and the effect on ones guts! I am a carer, I can't risk being sidelined by either...
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