Goodbye to prednisolone thanks to Leflunomide - PMRGCAuk

PMRGCAuk
11,494 members20,969 posts

Goodbye to prednisolone thanks to Leflunomide

43tripandskip
43tripandskip

I promised to report on how helpful Leflunomide was in tapering off pred. I was fortunate and didn't have any ill effects, in fact it helped remove many of the aches and feelings of illness which I had. Under my rheumy, I tapered down to one milligram of pred and then, following his instructions, stopped both pred and Omeprazole. I have to keep taking Leflunomide for 3 months then after another 3 months have an appointment with my rheumy.

It wasn't completely plain sailing, a few months ago I had an abscess in my throat and narrowly avoided being admitted to hospital. However the infusions and antibiotics that I had to take gave me "flare" symptoms. I increased the pred but was soon back to normal tapering.

I am now completely off pred and only experience slight fatigue. My legs have not yet returned to full strength so I'm looking for some gentle exercises to get them to normal. I will report back when I finally see my rheumy and let you know if all has gone well.

53 Replies
oldestnewest
DorsetLady
DorsetLadyPMRGCAuk volunteer

Let’s hope so. 😊

Yes, I can only hope! Thank you for all the advice and helpful information you have given over the years, It made the journey a bit more bearable!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to 43tripandskip

🌷please stay around and help others.

Whenever I read the informed comments I often think that I would never be able to offer advice. However, this site has been a "family" to me, so I will try on a few occasions to make a sensible contribution.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to 43tripandskip

Of course you can...you’ve been through it, and that what people want to know. They very often want to know that there is light at the end of the tunnel - and you are proof there is!

You don’t need to be a medical guru, like some, but you have knowledge and probably more important an understanding of PMR from a patients point of view and what other patients are going through.

Great news. Unfortunately leflunomide isn’t allowing me to taper as fast as I’d like. It’s difficult to know how it is benefiting me until I stop.

Glad to hear there’s hope for some. Long May it last.

43tripandskip
43tripandskip in reply to Lochy

This illustrates how we are all different in our response to tapering. I was very sceptical about its efficacy when I started on Leflunomide. I never thought it would help! I hope you can taper successfully.

PMRpro
PMRproAmbassador

Did you feel the leflunomide "kick in" at some point? I know a couple for whom it worked really felt a sudden change. One however got off pred but then had to stop the leflunomide because of developing neuropathy and was back to 15mg pred within a fairly short time - now she is on a lower dose of leflunomide.

43tripandskip
43tripandskip in reply to PMRpro

No, it never kicked in. I just felt an absence of "feeling below par" and although I've not yet felt totally ok, I'm just hoping it will all pan out. I'll certainly let you know in approximately 4 month's time how it is working out. Thank you in the mean time for your huge help in getting me through some rough patches. I'm really grateful for the great amount of time you spend helping us to get through some pretty frightening and unsettling experiences.

That is good to know. Perhaps a good physio could give you exercises to restore your strength.

Thanks for the tip. I will investigate local physios. Thank you also for your advice in the past - some of which I ignored; and then regretted not following it.

Really glad it seems to have worked for you 😀👍xx

43tripandskip
43tripandskip in reply to Jackoh

I haven't had any bad effects. So I'll keep hoping that I'm at the end of this long journey. Thanks for your reply

Hi 43tripand skip ,

Great to hear that your light at the end of the tunnel wasn’t an on coming train !! (HMHB record !)

Hope you get the strength back quickly but take it easy , don’t try too hard at first .

I’m trying to taper at present from 1.5mg to 1mg , but doing it as PMR Pro advised DSNS. My rhuemy wanted me down to 1mg from 5mg in 4 months , I tried and it was agony ! So I’ve been doing the DSNS, so far so good . I’m trying to get back to normal fitness , swimming once a week , golf 3 x per week , dog walking every other day . And ‘showing off’🤪 , I’ve started running again but only gently !

Did your leflunomide help you off the Omeprazol ? I’m still on 20mgs per day . Will I need to taper off these as well as the Pred ?

Anyway great to hear that your Pred free and best of luck for the future .👍

Graeme

Sorry, I write too much !

PMRpro
PMRproAmbassador in reply to Graememidsussex

Yes - you will need to taper off omeprazole too - otherwise you may suffer from rebound acid production.

Many , many thanks for your help , with my PMR and my mental ups and downs , throughout my battle . Although it feels like ‘our battle ‘ when there are so many positive replies , helpful messages and handy tips and hints . I don’t write a lot on this site but I read the weekly broadcasts on Sunday evenings .

Is there any DSNS for Omeprazol or just straight forward alternating days over a period and extending the alternation ?( I can’t split the capsule )

I’m open to any suggestions .

Once again , thanks for help .

Graeme

Hidden
HiddenModerator in reply to Graememidsussex

Having made the mistake of stopping it after 17yrz and suffering rebound reflux, I did alternate days, with ranitidine on the off day if I got a bit of reflux. Then I did every third day, then 4th....I found by 5th day that it eased.... .this took about 3 to 4 weeks but worked.

Graememidsussex
Graememidsussex in reply to Hidden

Thanks for your swift reply , I’ll follow your advice and do the alternative days , then 2 days etc and stretch it out .

I haven’t heard of ranitidine but I’ll do some research and have it to hand , just in case .

Many thanks Scoop

Graeme

PMRpro
PMRproAmbassador in reply to Graememidsussex

Ranitidine is the substance name for the generic and is marketed as Zantac - some versions have been recalled over a contamination problem but it only applies to certain ones, others are OK. It also suppresses acid production but uses a different mechanism and is a good way to wean off omeprazole. Otherwise, there are probably different doses of omeprazole.

Thanks , I’ve heard of Zantac , so I’ll get some at the end of my Pred / Omeprazol battle .

Kind regards

Graeme

Yes, I came off Omeprazole at the same time as coming off pred - as my rheumy advised. I still have to wait for 3 months to come off Leflunomide. So I won't know till then if I am starting to feel "normal".

Best of luck , you’ll have to keep us updated on the last leg ! 👍

Graeme

Yes. I come off Leflunomide on April Fool's Day and then have 3 months to see what happens!

Hope all friends here doing well and progressing. I'm very interested to learn of Leflunomide. Well done for your good results with it and perseverance. My rheumatologist has never suggested it. I saw him twice then he discharged me. Great! My GP asked me to reduce and come off Prednisolone as risks outweigh the benefits! I got down from 40mg to 2 mg in 8 months. But all hip/ankle/knee pain/stiffness back. Fatigue/general malaise. Rheumatologist said I should have reduced to 7mg only. But still discharged me with no advice. Being determined I walked 3 miles today bit in great discomfort. I feel totally sad tonight as I don't know whether to increase my Pred again. Cant tolerate this quality of life. Used to have such a zest for life. Any help appreciated.

PMRpro
PMRproAmbassador in reply to Gumnut

"My GP asked me to reduce and come off Prednisolone as risks outweigh the benefits"

The first advice I would give is to try to find another GP who can be bothered to take an interest in the disorder his patient is suffering from. In the case of PMR I fear he is very very wrong. Corticoteroids are the mainstay of management of PMR symptoms - and in the case of potential GCA it is the substance that prevents irreversible loss of vision and how he can claim THAT isn't a major benefit I don't know. Inadequately managed PMR is more likely to progress to GCA - and since you were started on 40mg, can I ask if there were any signs of GCA?

I'm afraid determination doesn't manage PMR - even with steroids on board, the ongoing disorder leaves your muscles intolerant of acute exercise and if you do too much you are likely to develop delayed onset muscle stiffness and take much longer to recover than usual. Fatigue is to be managed with pacing and resting appropriately, not trying to force things via exercise.

PMR is a chronic illness, with a median duration of pred management of just under 6 years. The median time to get to a 5mg/day dose of pred is just under 18 months. Median is the time for half of patients to reach the goal. Only 1 in 5 patients is able to get off pred in a year and it is believed they then remain at a higher risk of a relapse in the future. To taper from 40 to 2 mg in 8 months is foolhardy - and you need a better doctor.

This article is about a fairly recent study which established those times and also found that, except for cataracts, the so-called long term effects of low dose pred are no different in a population of patients with PMR who had been on pred and an age-matched population who had not:

medpagetoday.org/rheumatolo...

Show it to your GP and ask if he is dismissing work from a team of PMR/GCA experts at the Mayo Clinic.

What was the last dose at which you felt well and your symptoms were well managed? That is where you need to be now - possibly a bit higher to get the inflammation under control - and then work from there.

This is a link to another paper from UK experts in the field, aimed at GPs to enable them to manage their patients without overloading the hospitals unnecessarily:

rcpe.ac.uk/sites/default/fi...

If your GP won't listen - change.

Gumnut
Gumnut in reply to PMRpro

Thank you

Gumnut
Gumnut in reply to PMRpro

Good morning 💌 and thank you so much for your advice and for making me realise PMR is a chronic illness and no amount of vitamins, curcumin, paracetamol will cure it. I even tried CBD. Thank you for the links which I will read and pass on to my GP. I think my GP is not qualified to treat it and the rheumatologist thought it was a mild case and symptoms caused more by osteoarthritis. And discharged me! So am floundering. I woke up with these symptoms 18 months ago in Cornwall- it was very sudden. I will ask my GP to refer me to another rheumatologist for a 2nd opinion. She is happy to do that. And I will read your links and increase my steroids back up to 6mg- I remember I was doing ok at that dose. I think I became over zealous/confident and my GP was warning of dire effects of steroids. If children take them daily for asthma and some children are on high doses, the benefits outweigh the risks surely. I was tested for GCA and thankfully negative. Blood tests all normal. I am again so grateful to you. Good luck to all my fellow friends/sufferers. We'll get there 🌻

Gumnut
Gumnut in reply to PMRpro

Dear PMRpro thank you so much for the articles which are so helpful and informative. I have asked my GP for re-referral to another rheumatologist. I have increased my Prednisolone dose back up to 7mg and symptoms alleviated thank you. I am not sure when to start reducing again but when I do will follow your tapering advice. ie slowly! When I reduced too quickly to 2mg, I felt so fatigued, neck, back, shoulder, knee pain and depressed! I am confused whether this is relapse or PMR or Pred withdrawal symptoms as they are similar? I read that taking the meds on alternate days helps the adrenals to kick in. I wondered what your thoughts were on this? Always greatful for your help and hope my experience helps others. Regards Glyn💌

PMRpro
PMRproAmbassador in reply to Gumnut

Alternate day dosing is not recommended for PMR - you are very likely to have PMR symptoms on the day you don't take the pred simply because the inflammation is created in the body every day and the antiinflammatory effect of pred is 12-36 hours - most people are under 24 hours and even struggle in the morning of the next day.

Personally I wouldn't describe your symptoms as "steroid withdrawal" - that is a condition caused by taking away too much of the accustomed dose of pred at one time and one which can be avoided by reducing in smaller steps and being patient, it tends to resolve within a couple of weeks as the body becomes more used to the new dose. In the meantime it is able to function at other levels as long as the dose is above about 5-7mg, the equivalent amount to what the body produces naturally in the form of cortisol.

Below 5mg (sometimes a bit higher) your adrenal glands have to start contributing by producing cortisol again - at higher doses the body senses no more is required and produces none. As the pred level falls, the adrenal function doesn't always keep up - and that leads to fatigue, back pain and other symptoms. So yes, due to less pred but a slightly different reason. The slower you reduce no, the better the chance the adrenal function will keep up - but they may take a long time to get going and the slower and the smaller the steps down they less unwell you are likely to feel in the process.

Gumnut
Gumnut in reply to PMRpro

Dear PMRPro lovely to hear from you and thank you for explaining so well reasons for withdrawal symptoms. I regret tapering down to 2 so quickly. I agree it is withdrawal from Pred. I will follow your instructions to start from 7mg and taper slowly. I felt so ill at 2mg. I eben cancelled a 2 week holiday- couldn't face the long drive😪Rheumatologist no help! Thinks its mild PMR and osteoarthritis and told me to take paracetamol! I know its PMR because I woke up with it 18 months ago! I'd been walking 6 miles regularly before that day. Its comon to have some arthritis at 68 but has never caused me problems. Should I stay on 7mg for a month then start tapering? I am so very grateful for your help💌

PMRpro
PMRproAmbassador in reply to Gumnut

I can't say I'm aware of any arthritis at 67+ - wasn't any in the dodgy knee last time we looked at least! Any problems I have a definitely related to PMR and flares.

Once you feel OK at 7mg you could try 1/2mg reduction - preferably using one of the slowed tapers we go on about all the time:

healthunlocked.com/pmrgcauk...

This is the one I developed, there are others

Gumnut
Gumnut in reply to PMRpro

Thank you for your help. Will do 7mg until I feel much better then follow the slow taper. Have copied and pasted it. Thanks again.

43tripandskip
43tripandskip in reply to Gumnut

Please follow PMRpro's advice. You are in a stressful position at the moment and need careful guidance. I really hope you find a helpful GP.

Gumnut
Gumnut in reply to 43tripandskip

Thank you. I will check the advice. And have discussion with GP. I wish it would just go away😪

Gumnut
Gumnut in reply to Gumnut

I will report back with my progress x

That's really good news.

Thanks Odosmum. It's strange to find that I don't have to take pred any more!

Thank you since reading this you have give me hope I was on 10mg of pred now gone down to 5mg since being on lefunmide hope to get of the pred in the next couple of months

I really hope that you are able to make an easy transition. I can't believe that I don't take steroids anymore but I am on Leflunomide for 3 months and then see my Rheumy after a further 3 months. There's no doubt about it, I couldn't have made such a straightforward transition without Leflunomide. Wishing you all the best.

Thank you for your posts over the years and whoo wheee hope you are fine and dandy and do NOT have bad withdrawal or any new symptoms. sounds like it is all working well!!!! Keep us posted please. How exciting to be off. Bravo!

Lovely to hear from you. Yes, things seem to be working out though I still have another month on Leflunomode. I can't believe I'm off Prednisolone, sometimes I feel I'm in a different world! As expected there are still "twinges" such as sudden stiffness, but I'm hoping to "grow out of it!" So keep going and most of all, take it slowly, if you go too fast in tapering your body can have a habit of biting back, and then you're back on a higher dose for a while. Wishing you all the best.

Hi everyone. I doubt there are many still on this site who remember me but when my PMR started in 2009 (yes date is correct) I posted under the name of Bob The Builder. The advice and support I received from others then was just so good and helped me when I was at a really low ebb. I haven’t been on this site for many years but saw this post today and wanted to add my experience of leflunomide. My battle with PMR has been a long hard road and I saw no end to it until my rheumatologist put me on leflunomide 2 years ago. Before this I was on preds but kept getting flares and as hard as I tried could never get down to zero. I also lived with a lot of pain and stiffness over the years and rarely felt really good. It took several months for the leflunomide to work fully, and I had to increase my dosage from 10 to 20mg, but the result has been a miracle. My PMR and stiffness has gone completely and I feel so good. My 7 year old granddaughter, who is a good runner, was beating me in races easily when she was 4 but finds it a lot harder now and I am 72. I have my life back again thanks to leflunomide. May your PMR go quickly. Bob

Hi, me again. I will be very interested in how you get on if you do come off the leflunomide after 3 months. My rheumatologist has said that I am on it for life, because she fears that my PMR could return and the leflunomide might not be so effective a second time around. We are all guinea pigs!

Your experience of Leflunomide is very interesting: it didn't occur to me that we might find ourselves on this medication indefinitely.

I come off Leflunomide the day before April Fool's Day! I'll be reporting back after the 3 months of non-medication. It's still too early to say how things are going as I'm still experiencing stiffness and poor movements in my legs - it could be old age setting in of course!

Tripandskip, I don’t know your PMR story but from what I am reading it seems as though you are only on Leflunomide for 3 months which, if correct, doesn’t seem long enough as it’s not the same as taking preds which can work in hours. I was started on 10mg by my rheumatologist and the dose increased to 20mg after nearly a year because it wasn’t working. It then took another 3-6 months before I started to feel normal again so it’s been a long process.

We get so is used to living with the stiffness PMR brings (and think it’s old age) that its only when it’s finally gone that we can appreciate the difference. I hate to say it but if you are still experiencing stiffness and poor movement in your legs your PMR has not yet cleared up and it’s too early to stop taking leflunomide. My stiffness has completely gone which is where you want to be so don’t accept anything less. I haven’t had any side effects from taking leflunomide but would obviously love to be able to come off it if I could. I will follow your posts with interest to see how you get on. Bob

PMRpro
PMRproAmbassador in reply to Bobthebuilder3

I take it you have had no advere effects from the leflunomide? I have a PMR friend who had superb results with it too but developed neuropathy at 20mg and as soon as she stopped the leflunomide the PMR came roaring back. She restarted leflunomide at 10mg but it wasn't quite enough - 15mg does work though so hopefully that is low enough not to cause the neuropathy.

43tripandskip
43tripandskip in reply to PMRpro

Hi PMR pro!I have just lost my reply to you, so I'll summarise. I had Quinsy in September but wasn't admitted to hospital, instead I was given antibiotics etc. I got a clean bill of health from the ENT department 4 weeks later and then had a painful "flare". My Rheumy gave me an appointment and wasn't surprised that my body had reacted to the antibiotics etc. He gave me a programme for tapering down. So I don't know if this episode was due to Leflunomide or not. Thanks for showing an interest. It is much appreciated.

PMRpro
PMRproAmbassador in reply to 43tripandskip

I'm interested in it - it has been mentioned, it scares me witless!!!!

Maybe I am one of the lucky ones but the only side effect I have had after years of preds and 2 years of taking Leflunomide is a small reduction in bone density but nothing significant. I have also lost half a stone in weight and now weigh less than when I got married 49 years ago!

I just read in another of your posts that you survived 5 years without preds which is just so hard to do. When my PMR started in 2009, I was prescribed preds by a rheumatologist and then taken off them by my GP who didn’t accept the diagnosis as “I was too young and fit for PMR”. What she knew about PMR could be written on a postage stamp and it was 3 to 4 years before another GP prescribed them. I could be wrong but believe that the lack of preds in the early days is why I am still fighting this condition 10 years later. Bob

PMRpro
PMRproAmbassador in reply to Bobthebuilder3

I've wondered that too.

My GP was a bit useless but I saw him most times, I believe in continuity of care and he provided the needful most of the time, but he didn't get the concept of PMR without raised blood markers. Or to be more accurate, that were within normal range: they were raised for me (low single figures is my norm) but ESR was under 20.

The female GP who DID get it had been part time anyway and on maty leave at least twice in the time so I never tried to see her - she was far too popular anyway.

I struggle a bit with GPs who won't at least consider a rheumy diagnosis, especially one that fits with other stuff like response to pred. Mine was the other way round though - rheumy hadn't a clue and wanted to stick with something all his tests and imaging denied! 15mg pred provided a miracle in under 6 hours - to some extent I don't care WHAT it is as long as they can manage it! It would be nice to know though ;)

Hi Bob!

I had been on Prednisolone for over 4 years and after many unsuccessful attempts at tapering down, I got a really bad flare which I couldn't control with a higher dose. I was lucky, as I phoned emergency help at my GP surgery and got a really good young GP who after hearing my story, got onto her old lecturer at Guy' hospital. He not only advised what dosage of prednisolone I should take, but also made sure I was put in touch with a rheumatologist. I saw the latter in April 2019 and have been on Leflunomide ever since. I came off Prednisolone on 27th December 2019. The Leflunomide continues now for 3 months until March 31st 2020.

It's really interesting what you say about stiffness in the limbs. I will consider contacting my rheumatologist near the end of March if it continues. A friend had advised me to do water aerobics as exercise but I can't decide whether to take it up as the stiffness feels more like PMR than just getting old and needing exercise. Thinking back, immediately after coming off Prednisolone I didn't have any stiffness for a few weeks.

Thanks for your interest. I'll keep in touch

PMRpro
PMRproAmbassador in reply to 43tripandskip

I did aquafit for the entire 5 years I had PMR without pred - it was the only thing I could do straight out of bed in the morning and the only thing that let me do other things: after a class I was mobile enough to manage an adapted Pilates class and even an Iyengha yoga class. It didn't help the pain long term although the warm pool did reduce the pain quite a bit for a while and I couldn't do it unless the pool was really warm - a few times I stuck my toe in the water and turned round and headed for the steam room instead!

If you can find a warm pool and a good instructor who will let you work at your level go for it - I miss it but there is no real option here. One of the very very few things I miss about living here is that gym - the sheer effort of getting to the pool here and navigating my way around the building puts me off!

43tripandskip
43tripandskip in reply to PMRpro

Food for thought. We have a small public pool near home which has limited facilities but I will investigate and see what can be arranged. Thanks for relating your experience, it's spurring me on to do something in the way of exercise.

You may also like...