Tapering-Leflunomide and low dose Pred.

[123-go]

Further to my post a couple of weeks ago when I questioned my doctor's Pred tapering plan...

I wrote to my doctor expressing my concerns regarding tapering with some days of Pred missed and suggested my own plan. I still haven't had a reply from him but his nurse rang me yesterday evening. She was very helpful and talked things over with me. By the end of the call the shared decision was that I taper slowly* at reductions of 0.5mg every 5 weeks. As soon as my GP receives notification to prescribe 1mg tabs I shall begin the next phase.

*Thanks to DL and PMRpro 🤗

[DorsetLady PMRGCAuk volunteer]

Good!

[PMRpro Ambassador]

Result!!!! I like it when a plan comes together ... Now to make it work

[123-go in reply to PMRpro]

🤞🏼

[tangocharlie]

I missed your earlier post, has the Lef worked for you?

[123-go in reply to tangocharlie]

I've absolutely no idea. I've had no side effects but won't know if the inflammation has reduced until my next axillary ultrasound scan in September. One of the concerns that I mentioned to the nurse was the length of time between diagnosis and the next scan. The nurse I spoke to was reassuring so it looks as though I'll have to accept they know what they're doing. If I have any new physical symptoms in the meantime I'll be straight on the phone.How have you been with Leflunomide?

[tangocharlie in reply to 123-go]

I haven't started it yet, I didn't want to start in March due to complications of having to go for blood tests etc in Covid times as at that point I hadn't had a vaccine. I'll discuss it with my rheumie at the next appointment in late June. I'm still torn. My ideal solution would be to get inflammation down before then by diet, mast cell stabilisers and alternative therapies, so that I'm on a low-ish dose of pred, below 10, it's worth a try I think. I think some of my inflammation is coming from mast cell activation rather than PMR. Keep me posted on your progress please and I'll keep fingers crossed. One of my questions for the rheumie when Lef was suggested was 'How will we know if the Lef is working?' she said 'good question' but couldn't give me an answer. Ditto my question 'how do I know if I've actually got a problem with my T-cells? (Lef is supposed to zap them, or that's my understanding). Again she couldn't give me an answer. So that only leaves me with the 'we won't know unless we try it' argument.

[123-go in reply to tangocharlie]

I was reluctant to take lef but when I saw the ultrasound images of the aortic arteries with inflammation bubbling around and pushing the artery walls out it was a bit of a shock. It still took me a good three weeks to agree. I don't think a great deal is known about this vasculitis but I felt I had to bite the bullet.

[tangocharlie in reply to 123-go]

Totally agree I'd have done the same in your situation, or asked for Tocilizumab. I had scans on my aorta and a PET scan and there were no signs of LVV in my case

[123-go in reply to tangocharlie]

A big relief for you. There has been some mention of tocilizumab if lef doesn't work for me after taking for a year. I think DEMARDS have to be tried first. In the meantime I shall make the most of the summer months 🌞 while continuing to take safety measures. Watch out for my update in September.

[tangocharlie in reply to 123-go]

My rheumie Dr Mackie would have let me go on a TCZ trial if there had been any sign of LVV, but you can't take it 'just' for PMR, it isn't licenced for that in the UK yet. I've tried 3 DMARDS, methotrexate, sulfasalazine and azathprine many years ago, all caused side effects quickly and were quickly stopped.

[123-go]

I understand that. Your rheumy is excellent, isn't she?

[jinasc in reply to 123-go]

Yes she is.

[Sophiestree]

Can I ask, what is the difference in being offered Leflunomide and TCZ? Is that for LVV? It's a new one for me so am interested... I have weekly TCZ alongside tapering Pred for LVV but Lef was never discussed. Struggling with tapering once I get to 10mg but have told my consultant that I am doing the DorsetLady slow taper. She wasn't my regular (not great in my opinion) one, and was fine with that! Phew!

[Rugger in reply to Sophiestree]

TCZ and Leflunomide work in different ways, but I couldn't describe how! There are fairly strict prescribing protocols for TCZ because of the cost. Those of us on TCZ are 'fortunate' to have it prescribed, even though in the UK it will be time-limited, but there has been a recent extension until June 30th!

My Rheumatologist was talking of using Methotrexate, if required, after my TCZ allowance runs out.

[Sophiestree in reply to Rugger]

Yes, I realise that I am 'lucky' to be getting the TCZ. I am not keen on Methotrexate, but that is more about my osteoporosis to be honest. thank you

[PMRpro Ambassador in reply to Sophiestree]

How do you connect MTX and osteoporosis?

[Sophiestree in reply to PMRpro]

I was told that was one of the side effects of MTX? Am I wrong about that?

[PMRpro Ambassador in reply to Sophiestree]

They are totally different drugs - leflunomide is a drug often used in rheumatological conditions and is sort of general but thought to have a steroid-sparing effect in PMR. Prof Dasgupta was particularly keen on it having done a study on it in the late 1980s where it was claimed it achieved remission in something like 21 out of 23 patients. The story told by a couple of the patients on the study doesn't really match against the very positive tone of the paper! My suspicion is that maybe they weren't as purely PMR as thought.

Tocilizumab is a biologic drug and works very specifically on the main inflammatory process in GCA, production of the IL-6 cytokine. It gets about half of patients off pred altogether, usually within 6-12 months and the rest get to a much lower dose of pred - this is because there are 2 other inflammatory mechanisms that are not stopped by TCZ as biologics are so specific.

I'd suspect that they get to jump straight to TCZ for LVV - it is approved for Takayasu's arteritis where the inflammation is probably in similar places to LVV but is even more of a risk to organs such as kidneys so maybe they can get approval for LVV more easily. I don't know.

[Sophiestree in reply to PMRpro]

Thank you, as I don't have PMR, which actually, reading everyone's stories, sounds much much worse than LVV in terms of stiffness and body, I can see it wouldn't apply to me anyway. I will be interested to see how I am by Christmas when my year will be nearly up on TCZ... struggling with the pred tapering as it is, but early days I guess.

I had to ask for blood tests with the consultant the other day, but they were talking liver rather than kidneys. Maybe I will ask my GP for kidneys along with VitD and Calcium.

[PMRpro Ambassador in reply to Sophiestree]

You should be having LFTs done regularly if you are on TCZ. Renal function is done automatically with pretty much every blood test these days - in the form of the eGFR.

[Sophiestree in reply to PMRpro]

Yes, but not what has happened. Until I requested it. The annoying thing is I never get to see the results, if it was via my GP I can get them online, but not via the hospital sadly. Plus my next appt now is Sept, so I will have to email the Rheumatology nurses to ask what the results are I guess. All so tedious.

[PMRpro Ambassador in reply to Sophiestree]

That isn't good ...

[Sophiestree in reply to PMRpro]

I know, but not surprised with them. Part of me thinks I should go elsewhere, the other part thinks actually they can easily be talked into stuff, like my tapering slower than they asked, and getting TCZ etc, and they are happy to say yes. Tricky one.If it gets silly re bloods I will request them via the GP, I can't see why they would say no. I guess I need to check cholesterol as well?

[PMRpro Ambassador in reply to Sophiestree]

According to the rubrics - but personally I don't "do" the cholesterol story ...

Lot to be said for compliant docs too

[Sophiestree in reply to PMRpro]

Oh OK, good to know. Mine has always been very slightly high, but they said it was due to Thryoxine? I am not that concerned. Thought you needed to check that and potential diabetes. But it can get way too much.

Sooooo get you on the compliant doctors. Having been brought up by two I know only too well....,hence why I am not rushing to change even though I find her useless.

[PMRpro Ambassador in reply to Sophiestree]

Our GP here is lovely but a bit daffy! But has her uses ...

I think TCZ CAN send cholesterol into orbit so the occasional look is probably advisable. But pred raises it too. Surely they do do the Hba1c 6-monthly? That is one thing I get quite interested in but the GP seems to have forgotten it on the last annual "let's do everything" so was a bit disappointed!

[Sophiestree in reply to PMRpro]

Never assume with my medical care! They never mentioned to me how high my calcium was way back in 2014! You have to be aware of your own needs. Same as requesting my dexa scans in the past. The only thing they do regularly is bowel screening, so that's something I guess.

[PMRpro Ambassador in reply to Sophiestree]

Suppose you win some and lose some ...

OH ended up in A&E with high calcium - very textbook!

[123-go]

Hi Sophie. I've been told that TCZ isn't offered until Lef has been tried and failed to reduce inflammation. It could be due to cost. Lef is a steroid sparer and given for longer term steroid users to 'get them off' Pred. Others will be along to give more information.Good for you for sticking to your guns with a slow taper and good to have the support of your consultant.

Am going off forum to speak to family in Denmark now. 🤗

[Sophiestree in reply to 123-go]

Ah lovely, enjoy your family. My daughter lives in Hong Kong!

[123-go in reply to Sophiestree]

Had a lovely, cheering chat. I'm set up for the day!I hope you and yourdaughter are able to contact through social media....a wonderful thing.

[Sophiestree in reply to 123-go]

Yes, no flights in or out of UK to HK so no idea when I will get to see the grandchildren, but get daily photos which is great.

[Maryis80 in reply to Sophiestree]

I have daughter in Oz, no childen, and son in Sweden 3 kids. Havent seen any of them since December 2019 and goodness knows when I will!

[123-go in reply to Maryis80]

That's tough, Mary. Are you able to FaceTime?

[Maryis80 in reply to 123-go]

My rheumie put me on Leflunomide nearly 2 years ago and must say I cant recognise any side effects. He just said its a steroid sparer. Now on 5mg pred and when I had my last blood test in March, he said to carry on with that until blood test in June.

[123-go in reply to Maryis80]

Two years ago! What dose of Pred were you on when you started leflunimide?

[Maryis80 in reply to 123-go]

Just looked up notes, started Leflunomide on 8.2.19 at 12mg Pred. Stopped keeping a daily diary about then, but I do remember having to up the Pred a bit but now been on 5mg for three months or so. I always ask the rheumy about reducing the Leflunomide but he says no!

[Maryis80 in reply to Maryis80]

I am not really worried about the Leflumonide as it doesnt seem to upset me and will await my next consultation in June.

[123-go in reply to Maryis80]

I think you're right not to worry about Leflunomide. I wasn't too happy about taking it in the early days of treatment but now I don't give it much thought. I hope your consultation in June is productive and that you'll be able to reduce your Pred dose. When all's said and done, we're in the hands of our doctors and we have to stay positive.

[123-go]

Other way round for me. GP surgery won't let me have my blood test results as they don't refer me for tests and their online system isn't configured for that facility. They can access my results from pathology but won't pass them on. I find that infuriating! My body, my blood, my results! Requesting them from the hospital is hit and miss and frustrating.

[Sophiestree in reply to 123-go]

Wow, I'm surprised. I thought you had the right to see your results. I requested everything from the hospital during investigations, all notes, and all scan results. They were fine giving them to me. I now have a very large indexed folder!

[123-go in reply to Sophiestree]

I thought that too. It's the question of who referred me as to who can give me results. It's very 'clubbish'.

[Sophiestree in reply to 123-go]

don't start me on the medical profession 😂

[Amkoffee]

I'm happy you had such a great meeting but I'm a little confused. Where does the leflunomide come in?

[123-go]

The Leflunomide was prescribed for to reduce inflammation in the aortic arteries (large vessel vasculitis).