Post Leflunomide Update

[Alebeau]

After coming off Leflunomide in November 2022, I am now up from 5.5 to 15 mg Prednisone. Finally the pain is subsiding in my left shoulder- it was constantly painful and was not able to get dressed or wash properly.

The pains were constant and spreading across to the other shoulder alone with my neck. Lower body seemed ok. Pains in both shoulders were also an issue sleeping.

This is a huge setback for me but thanks to my rheumatologist who recommended jumping to 15 mgs I am once again reborn.

I will recommence my reduction all over again and this time no Steroid sparing drugs of any kind!

[SheffieldJane]

Good luck 🍀

[Alebeau in reply to SheffieldJane]

ThanksI appreciate all the support received from you and all the others.

Patience once again is key.

[PMRpro Ambassador]

Has the rheumy said anything? One of the things that concerns me about their fixation with steroid sparers is the fact that when they go wrong they seem to do so rather comprehensively! How much does it set people back I wonder?

[Alebeau in reply to PMRpro]

I will see her on February 7 to get results of the ultrasound and to get an injection of Methylprednis Acet.

She advised me to take 15 so I think she must have seen the large amount of inflammation in the ultrasound. Plus my markers went way up last month to the mis 30s.

I too question the use of the steroid sparing drug as it has put me back to the starting line.

Thanks for your response, I am grateful for this site.

[Zebedee44]

I’m so very sorry to read this post. You must be devastated having to start back on a slow taper from 15mg after the progress you had made with the so called steroid sparer. I really feel for you.

I’m still resisting taking the leflunomide I was prescribed by the Rheumatologist in 2021 and chipping away very very slowly at my daily dose of 6.5mg. I saw a sweet young registrar at my surgery this week and she said that it’s not everybody that suffers the side effects of leflunomide but she also accepted that if I still had the symptoms of PMR the dose was ok.

I’m pretty fed up after six years and still facing the long daily negotiation with this condition but your posts have confirmed for me that there is no realistic shortcut. I’m just so sorry you had to suffer for me to benefit from your experience. I hope things start to improve very soon. Very best wishes, Chrissie

[Alebeau in reply to Zebedee44]

Thank you so much.

I will stay positive and hopefully get on a solid reduction plan from here on in.

Good for you to have stood your ground. I always was reluctant to try another drug but the frustration of not getting past 20 mg Prednisone broke me down unfortunately.

Lesson learned 🙂

Good luck to you, you have done the right thing.

[Rugger in reply to Zebedee44]

After 6 years of PMR and 3 years of GCA-LVV, I managed to reach zero pred 8 months ago, with the help of Tocilizumab, my ration of which ran out. Playing safe, my Rheumatologist started me on Methotrexate, as she thought I might flare on no medication at all. She was right, in one way, as I've flared even with the MTX! So for the last month, I've been back on 5mg pred and it seems to be dealing with the PMR aches and pains (which we had thought were the effects on my muscles of 6 years of pred!). I'm staying on 5mg and the MTX until I see her in a month's time. Leflunomide hasn't been mentioned, but she did say the MTX dose could be increased.....!

It's disappointing to be in my 7th year since diagnosis, but it shows me that the inflammation is still active and all these drugs are simply buying time until remission happens, when & if it will. As you say "no realistic shortcut". Keep on keeping on. 🌷

[Zebedee44 in reply to Rugger]

Hi Rugger, from what you have read would you say methotrexate is preferable to leflunomide? Was the toxilizumab effective? Don’t you get frustrated being a “lab rat” or are you hopeful that this trial and error process will bring better understanding of PMR and it’s close relations?

You are so lucky to have a dedicated Rheumatologist in Dr Mackie who might find the answer to all this and campaign for an effective drug for all of us.

[PMRpro Ambassador in reply to Zebedee44]

I don't think that it is a question of which is better in general nor really of being a lab rat. In the case of PMR. some experts think it is clear that both of them work for SOME patients but not all. Unfortunately there is no way to forecast which group you belong to without trying the drug and seeing what happens. Good doctors who try them will eventually recognise a pattern - but it will only be apparent once a lot of patients have been through the process. Whether this means there are 3 "classes" of PMR (M-respondent, L-respondent or neither) or if it is something else remains to be seen. It is impossible at present to say what actually causes the disease process - until that can be established, it is a case of trying things that are known to have some effect to see if they work for you. Which I think is fair enough - but it must be presented in that way, not that M or L or whatever are sure-fire ways of getting off pred as some doctors try to claim.

[Zebedee44 in reply to PMRpro]

Thankyou PMRPro, a good point well made.

[Rugger in reply to Zebedee44]

I wouldn't know about leflunomide, as I've not been offered it (yet!). MTX might be doing something for my inflammation, but we don't know - without it, I might have needed to go up to 15mg pred - who knows? I don't consider myself a "lab rat", but a very fortunate patient who has a Rheumatologist who is trying to help her patient(s) using whatever she has in her medicine chest. She is leading a double-blind, placebo-controlled trial of MTX for PMR, which may yield some answers.

Tocilizumab was prescribed for the relapsing GCA-LVV and it certainly seemed to be effective for me as I felt so well on it and was able to reduce the pred to zero. More's the pity that the NHS ration us to one year's treatment.

In the meantime, I keep on keeping on - rugging away!

[Foxie52]

Good to hear! I was recommended to start Leflunomide, but after reading several replies to an earlier post, I have decided I don’t want to take it. When I’m back on an even keel with the steroids, I intend to cut down more slowly in the future

[winfong in reply to Foxie52]

I don't know. You really won't know if you'll suffer any of the side effects until you try it. What else have you tried?

Over the years, there's been a number of conditions (depression, high cholesterol, LVV) where I've had to switch medications, adjust doses, wait for it to work, put up with side effects, etc. It's usually been worth it in the end though.

Looking through your profile and posts, though, I've never seen a diagnosis of PMR (or GCA or LVV). Is that correct? If so, there really is no need for steroid sparers.

[PMRpro Ambassador in reply to Foxie52]

Hpwever slowly you taper, it won't get you past what is YOUR lowest effective dose. For some patients leflunomide makes the difference. Have you read my recent post about leflunomide?

healthunlocked.com/pmrgcauk...

Some people have adverse effects, many don't. And as winfong says - you have to try to know either way.