Finally starting treatment mycophenolate mofetil

[ange726]

Hello all

18 months of MRI's, lumbar puncture, sensory tests and copious amounts of meds they have found nothing on any tests except my blood work, which has been upsetting and frustrating as the pain down my right side of my body has never disappeared. I managed to get an appointment at the lupus clinic at Guys hospital to today.

They are starting me on the immunosuppressant mycophenolate mofetil and putting me back on steroids and monitoring for 4 months. I'm very happy I'm finally moving forward with treatment. I wasn't however happy about going back on steroids as the last time I took them I put on 3 stone and they only worked for a few weeks. My consultant suggested I cut out sugar in my diet so that's what I'm going to do.

I have still to take my other meds; hydroxy, nortryptaline and Tapentadol.

If anyone has any experience with this medication I would value any opinions.

Many thanks and happy Friday everyone

Ange

[Hidden]

I take it at maximum dose to some good effect I think - mainly joints and renal although it’s hard to quantify. I think the small fibre neuropathy (SFN) had already done a lot of irreversible damage before I started Mycophenolate over a year ago.

My diagnosis is primary Sjögren’s and my most problematic symptoms are severe small fibre neuropathy and autonomic neuropathy. My ANA is positive and I have high level of inflammation in my blood and positive lip biopsy but no specific markers (ENA) for a connective tissue disease. I did have matched o bands in spinal fluid and blood but that’s all - EMG normal. Classic Sjögren’s in my case.

I do hope it helps you a lot - it’s generally a well tolerated immunesuppressant.

[Melba1]

Hi Ange, that’s great you got an earlier appointment and you’ve started the meds - hopefully you will see a big improvement.

Research shows that these traditional neurological tests often don’t show anything when it’s as a result of inflammation from the lupus so a negative result does not mean there isn’t a problem that needs treating - as your rheumy now thankfully is.

I have heard very positive things about the myco and it seems well tolerated by a lot of people. I had a bad reaction to it but I seem to have a bad reaction to most drugs these days and my rheumy said it was very unusual.

I know how you feel about steroids. I kept feeling like I’d ‘failed’ having to keep going back onto a high dose and worrying about all the side effects BUT they are so important in reducing the inflammation that is causing us all the problems and once the immunosuppressant takes effect your rheumy will try and wean you off them. I think you said somewhere it’s only 7.5mg of steroid? That’s considered quite a low dose so hopefully you won’t get any side effects. I’m on 35mg currently and can’t notice any side effects (and have been on steroids nearly a year now) although I’ve felt so ill I haven’t been eating much so that obviously helps with not putting on the steroid weight. I know lots of people get a bigger appetite with steroids so if you can cut out most sugar as your consultant advised that will definitely help (although hard if it makes you crave sugary food 😬!).

Really hope this treatment works

X

[LesJames]

Hi, I know how you feel, I won't tell you how long I have been undergoing tests for. Just try to stay positive.

[corrie14]

On myco and steroids 2010, havent had a flare since then ,think that they are great for me, still have lots of pain and weird,symptoms, but i also have fibro reynauds, sjogrens, and hypermobility, sunsenceitivity

[maggielee]

Hi ange. I am on lowest dose to deal with sjogren & also have SCLE. I haven't been able to increase dosage from 500mg as my white blood count keeps dropping so I thin k it has taken longer to 'kick in'. I have found it helpful, but I have to watch fluid in my lung's causing my cough to sound very bad... Let us know how you get on ... So many medications it is good learn how each of us respond to them... ML ☺

[Barbs51]

Hi Ange, my diagnosis is Primary Sjögren’s with inflammatory lung disease and on Mycro since June last year and am tolerating it well this is on top of my other meds Hydroxychlorquine, steroids etc.,, I’m just glad there are these drugs to help us because if the doctor said ‘sorry but there’s nothing I can give you’ can you imagine 🙃. Best of luck 🌺

[Sheilainacton]

Hi there I've been on steroids, hydroxy & mycophenolate for many years. The mmf really helped in getting the steroids down from 30+mg to 2.5 now. I had to gradually increase the mmf to the max then slowly reduce the steroids, then reduce the hydroxy & mmf so I'm now on a low dose of all 3. I think you just have to be patient & pace yourself (not easy if u r naturally an impatient person like me who used to want everything done yesterday!) Re the steroids & getting the munchies: I found that keeping hydrated suppressed my appetite : so lots of water (tho for me usually cups of tea) and if you want a hot drink & something that tastes sweet but with probably zero calories then this is great:

A very small slice of fresh ginger (size of a coin) plus a small piece of stick cinnamon in a mug, pour on boiling water & enjoy! It also still tastes ok if u forget it & it goes cold and you can keep topping up with boiling water as the flavour lasts all day. I assume if u r at Guy's then u live in London- I get my ginger & cinnamon from my local ethnic shop which is much cheaper than the supermarkets- a large packet of cinnamon is less than one of those tiny little supermarket spice jars! Also apparently the sugar-free drinks don't help as although you are having less sugar your brain expects sugar because it's sweet & so makes you more hungry!

Enjoy!

[PMRpro]

I'm glad to hear a rheumy saying cut the sugar - many people over on the PMR/GCA forum have either avoided weight gain altogether or kept it to a minimum (and a few have lost weight) by cutting all simple carbs drastically (that includes flour and too much fruit) and some have lost pred weight they had already gained (I lost 35lbs).

I see someone mentions 7.5mg - that is the sort of dose we use in PMR, and up to 15mg is common, and some new work has found that the side effects are actually minimal (except cataracts which are easily dealt with) even with years of that sort of dose:

medpagetoday.com/rheumatolo...

practicalpainmanagement.com...

[Bebe76]

I was switched to MMF after a trial of azathioprine did not work for me. It has really helped to control my lupus without many side effects. I was able to go from 30mg of steroids to 5mg. (Trying to taper further but kind of 'stuck' at the moment). I hope it works for you!