I have a rheumatologist appointment on 4th September and I’m thinking that Mycophenolate will be discussed as alternative Dmard. I did try Methotrexate in February this year but was not suitable for me. My gut feeling is to continue with Pred only. PMR since Jan 2018, GCA since December 2018. Currently on 20 mg daily to get flare under control(seems to be working, touch wood).
Many thanks.
Don't think it ever gets a mention in any reliable literature I've read. Maybe they have to try more than just mtx to get to tocilizumab?
I was also given a leaflet about leflunomide . Could you explain a bit about tocilizumab?
If you don't develop adverse effects leflunomide may be a better bet - it certainly seems to work well in PMR. But maybe it doesn't do much in GCA. It is all rather vague and no proper studies.
Tocilizumab is usually discussed here as Actemra and there are a few people on it in the UK but more in the USA. It is a biologic and can be used in complex cases of GCA in the UK. Use the search box at the top right and look for Actemra - that will bring up a whole lsit of past posts about it.
Thanks. I’ll check that out.
i'm touching wood for you too, hope you get something that works for you x
It may be of some interest to you that my husband had a heart transplant 25 years ago and has been taking mycophenolate mofetil (CellCept)for years as an immunosuppressant to prevent organ rejection. Immediately after the transplant he was started on cyclosporine but after a number of years it caused some kidney damage. He was then switched to sirolimus, which also had side effects, and so he was prescribed mycophenolate. He seems to have tolerated it well. His current dose is 450mg per day.
Maybe my idea that I was given mycophenolate was because of diabetes, hyperglycaemia and potential for kidney damage if on 15mg of pred for extended period. Got to say rheumy just described it as dmard/steroid sparer when prescribed. It's me that has invented the diabetes story. However he was more concerned than gp to get blood glucose down. Sorry...a ramble!!🌻
No worries. I haven’t got Diabetes. It’s all a minefield isn’t it?
Yep. It is.
Have you any kidney issues either?
Hi cycle girl, I have been on mycophenolate for about 2 years. The first 8weeks were dodgy for side effects as they built the dose up every two weeks. I was having trouble reducing and flared everytime I tried to drop. Once I was on 2mg a day I can't say that I have been aware of side effects and have reduced from 15mg to 6mg without flaring. Of course I don't know if I would have made it that far anyway.
I have diabetes and read somewhere a while back that mycophenolate had been used to protect kidneys in diabetic patients. For the life of me I cant remember where I read that. But I suspect they tried mycophenolate because of that, because as PMRpro says I can't find supporting evidence for its success in PMR. As I say first few weeks I didn't feel good. Dizzy, nausea and just unwell. But they disappeared overnight at 750mg x2 a day and as I said no discernable effects at 2mg a day.
Thanks. Plenty to think about before the appointment.
I hope the appointment goes well and you have the opportunity to discuss your treatment options with your rheumatologist. I am sorry but earlier I mistakenly sent a reply to dillydally rather than you, as intended.
No problem. Thanks for your good wishes.
I tried Mycophenelate- my third DAMARD, as I was feeling desperate! Like the other 2 it did not help me to avoid flaring when reducing. On the plus side, it doesn’t seem to have many side effects.
Thanks for responding. More research required before seeing Rheumy! Can I ask what were the other 2 dmards you experienced?
Methotrexate and Leflunomide. The latter made my BP rocket. The Meth. made my hair fall out and come back curly which has been a good thing!! No use with the PMR though!
How did you workout they were not working for you?? Silly question but you know what I mean! I’m on leflunomide and after three months on 10mg then three at 20mg ( wouldn’t prescribe whole dose at start as wanted to see effect on my liver) I don’t feel any benefits. Tapered faster in early months of leflunomide and now bit stuck at 8mg. It’s my knee pain that nags and not sure what will help?? Not sure that anyone knows 🤔😠
The people I know for whom leflunomide worked knew fairly soon there was a difference. One said she felt it "kick in" and she must have started at about 8mg because she got to that using methotrexate. The main claimed benefit of it is that you can taper better.
I think I felt the ‘kick in’ effect on the 10mg but feel it has petered out despite now being on 20mg! Bit odd really. Perhaps I just have to add a bit more patience and sit tight for a while and see if it kicks in again. The only thing that has improved are my liver function tests - lowest they’ve been in years - whatever that means!!
No other adverse effects with the lef?
No, nothing noticeable. Bit of stomach upset occasionally but I’m also on hydroxychloroquine. I’m developing a theory that I don’t absorb drugs as ‘one’ should whatever that means. Don’t see my rheumatologist until beginning of November so if no improvement by then I may stop the extra drugs and stick with prednisolone?? Or I think she maybe referring me on somewhere.
I have discovered professor Ian MacInnes at Glasgow University is developing a Biobank for inflammatory conditions. I’ve written to him volunteering myself and received a lovely reply but they’re aren’t researching PMR yet! I may still pursue him and his expertise.
I do not understand why they are so desperate to add in another 2 immunosuppressant drugs on top of pred. The benefits cannot possibly outweight the potential downsides - there is evidence that this messing about with the immune system is not harmless.
To whom would a rheumy refer a PMR patient? It's usually left to GPs.
Oh dear, ‘messing about with immune system’ alarms me. Can you point me to the evidence please? I do like to be armed with information.
Immunologists are expressing concern about the use of multiple immunosuppressants without very good reason - and they don't seem to consider trying to reduce the pred dose by a couple of mg using other drugs such as methotrexate, leflunomide and mycophenolate a good reason. Apart from any other consideration, each drug has its own layer of adverse effects. And while two individual drugs may not have an interaction, adding more drugs to the mix changes the dynamics which have never been looked at in a clinical study. There are enough patients in hospital as a result of drug interactions or incorrect dosing already!! I'm in the process of getting anticoagulant therapy dosing adjusted because another drug I'm on increases the level of the anticoagulant in the blood - to a level that makes bleeding problems likely. My husband had a similar problem at Christmas - his pairing of drugs led to his blood level of antiicoagulant being 10x what it should be and required protracted hospital stays!!!!! His cardiologist hadn't even thought about it!!
I'm sorry, I can't give you chapter and verse because it was a conversation I had with an immunologist at a scientific meeting a year or so ago - but she was very sceptical about the long term value. It really should be borne in mind.
Thanks, PMRpro it’s all helpful information and I did resist the automatic mtx suggestions early on. It’s only since I’ve really struggled with pain in one knee that I considered the other drugs. However it’ll be a year in November since I introduced hydroxychloroquine on suggestion of Rod Hughes, don’t think it’s helping much so think I’ll stop it. That’ll be the only way I can tell. My rheumatologist suggests that sometimes a combination of drugs can work for some but she acknowledges they don’t fully understand why.
Meanwhile I’m the guinea pig, hoping they know what’s right for me; desperately trying to solve the nagging knee pain; still assuming it’s PMR; and the ongoing paranoia about getting us off steroids!
It’s all a bit of a dilemma.
If you have pain in one knee that would be unusual with PMR. Have you had it investigated? Could quite well be bursitis or even OA if they haven't looked!
Had Xrays on both knees and both showed no signs of OA just effusions. Had fluid aspirated and 3 steroid injections to date in left knee. Fluid showed xxxx inflammation but no infection. It was after second one that leflunomide was suggested and I was very happy to try considering the pain I was in. Agreed not to increase oral dose as everywhere else in my body felt good.
Can PMR cause bursitis or is it as a result of steroid use?
My rheumatologist describes me as having PMR + whatever that maybe!
That’s very interesting. Thanks
I hope it all works to plan. X
Thanks. Nothing decided yet , just getting prepared!
GCA taper info please
Mycophenolate and pred.
Advice on cholesterol please
Taper advice please
leflunomide or mycophenolate
