I saw a different Rheumatologist in the clinic recently. He appeared satisfied that I was on long term 5.5 Prednisolone (I had previously run into trouble at 5mg) but his follow up letter indicated a plan to offer me Mycophenolate Mofetil as a DMARD to get me off steroids. Has anyone had experience of this treatment ?
i am not keen, diahorrea was the upshot six years ago.
If you have had it before with a less than stellar result - seems a bit pointless. It has absolutely no position in the PMR world as a steroid sparer although there are a few studies looking at it in GCA. If you are doing OK at IRO 5mg I personally would ask why rock the boat?
Before I write a load, have a look at this post from HU's predecessor forum on Patient.info
patient.info/forums/discuss...
all about MMF and if you scroll to the bottom of the page you will see what happened to the patient.
There are a few papers about its use in small clinical studies for other forms of vasculitis. This
openrheumatologyjournal.com...
has a very small section about its use in LVV/GCA but not PMR and the conclusion was it isn't much use.
I ask - WHY?
Thank you very much for your reply and for pointing me to the links, especially the Open Rheumatology Journal. I am so glad to have your comments. I’m going to resist MMF. TCZ has been the only successful treatment, other than Prednisolone. A PET scan approx 3 years ago showed inflammation was still present not only in the area of my implant and stent, but new lower down. I think 5.5 is as low as I can go but I would try 5 again if necessary to show willing.
As you say, why change things? I’m still walking about, haven’t gone mad and am not depressed ; in fact quite happy!
What more should they want? And yes - I know they will!!
Having looked at side effects, not sure I’d want to go down that route - and as PMRpro has said if it wasn’t good for you last time round… why try again.
Sometimes better to stick with the devil you know- if allowed to, that is😊
Thank you for your reply. Yes my resolve has hardened now I know there’s no really outstanding case for Mycophenolate Mofetil for GCA.
My next appointment with the Rheumatologist will be in c 4 months
Loads of time to screw up the courage to say no!!
Ha ha indeed. One of the advantages of age, it gets so much easier!
I agree, Pro but we shouldn't have to "screw up the courage" should we? If only specialists would work with us and admit that we are all inidividuals, some of us are quite intelligent and (thanks to this site) very well informed. This feeling of "having to go into battle" is horrible, yet fairly common as we consult these "minor gods"! I know there are exceptions but all too few it seems to me...?
Some do - I'm lucky in that. And I have no fear of saying no if it doesn't feel right. I tried MTX and it was awful. He accepted it witout question. When the pred dose I needed started to climb I offered to try leflunomide - even though the stuff terrified me! - but he went straight to what he knew was most likely to work.
You sound as though you have a good rheumy, Pro, you are fortunate. I mainly work on my own with the help of this site and a very supportive GP who goes along with what I suggest usually. I too tried MTX years ago and didn't like it at all.....
I do, and a world name in the PMR field. He is what keeps me here in Italy - no idea what I might get in the UK!!! Though I will have to face that sooner or later.
I wonder if you could still connect via Zoom if you do have to return to UK - he sounds too good to lose...... ?
It's more the medications I get here! Paid for by Italy as I am get an Italian pension so entitled to free Italian healthcare and tocilizumab is available to me.
Wow! The Italian health system puts the rest of the world to shame by the sound of it! It's pretty good here in Oz. BTW, I have been trying CBD oil gummies - been on them for about 2 weeks. I am definitely sleeping better but no discernible difference in my inflammatory arthritis. Maybe early days yet? I am not expecting an improvement in PMR which is not too bad ATM.
My rheumy said the other day that the politicians won't usually allow an effective medication to be restricted on grounds of cost - it might lose them votes! There are problems here, more further south in Italy - I live in a northern German speaking autonomous region which comes with added extras - and the shortage of healthcare staff applies here too, not least because they should, by law, be able to speak both German and Italian. But so far it is coping. I don't know a lot about Oz but I do get annoyed at people who claim "the NHS is the best in the world" - it is good but overstretched but it isn't the only free at point of care and other good models do exist,
I'm not convinced by CBD - not tried it but heard many many stories about it improving other things but not the disorder itself.
I think the NHS used to be the best but no longer. However, I have a stepdaughter on the US and most developed countries have to be better than theirs! Add in the threat of litigation if you stop to help anyone....aargh!
Well quite!!! The NHS is amazing in an emergency and no-one will ever have to sell their home to pay for medical treatment. It's just the longerterm and less urgent stuff is suffering badly at present. There are things the NHS does better than here but I do have instant access to my GP - turn up and wait and take a book - and the consultation lasts as long as you need, no limit to one topic! One of my daughters is training as an ANP in endoscopy and the other is already an ACP in the ED, the grandsons are a pre-registration hospital pharmacist and a qualified nurse. My husband and I were in the NHS for part of our careers. It is sad to see the mess in some areas.
hi. I am on MMF. Stopped methotrexate as didn’t help so it was replaced with MMF. Since then have had monoclonal antibodies and not able to say what it is doing for me if anything but it’s not causing problems 🤪
Hello, thank you for your very helpful reply. I’m glad a lack of problems is working for you. However I am shall try and stick with just Prednisolone at a low dose, based on my previous experience of MMF. Are you on steroids and are you reducing them now you are on MMF and what is your current dose, if you don’t mind telling me?
yes I have been reducing Pred since my last flare before Xmas. I am on 7mg now. I had Rituximab infusions in January and still have a Sarilumab injection two weekly. I have a stubborn large vessel vasculitis unfortunately 🤪
Thanks a lot. My GCA is stubborn as well , responding only to Tocilizumab infusions for the prescribed year. I feel it will be a permanent feature, managed at low level steroids in my case (5.5). I wish you all the best in the future with your variety of meds and I really valued your reply.
I’ve been on MMF 1.5 and 5 pred now only been on MMF since august but apart from stomach issues and the ofd lung infection I’ve been fine. My GI is brilliant and put Lansoprasole up to 60mg and nortriptoline to 20 but she did say any further problems and they may have to consider changing MMF as I have to be on 3 , I am feeling really zoned out in the morning and lack of energy, but respiratory said it’s taken away the bilateral pleural effusion’s so that’s a bonus.
Take care
Wendy xx
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