Mycophenolate mofetil

JessicaLizzie

Hi

My rheumatology team had an MDT meeting regarding my treatment going forward for my Stills Disease, and the result was trying mycophenolate mofetil. I started it Thursday PM and its one tablet morning, one tablet evening. I already feel really quite sick, zero appetite, and tonight is my methotrexate night so I'm absolutely dreading how I will feel tomorrow. I was hoping to go onto biological treatment however NICE guidance states that I must have tried and failed 2 DMARDS from a specific list, and although methotrexate is on the list, the hydroxychloroquine isn't, hence why I'm trying this as another DMARD.

Is anybody else on here on two DMARDs and are managing it? My stomach really struggles with just the MTX 20mg injection, I have diarrhea and nausea for about 3 days after taking it. I couldn't tolerate hydroxychloroquine because I was violently sick. Now got the nausea and diarrhea on this one. I honestly think that my gastro system just cannot handle the drugs plus steroids. The aim is to increase the mycophenolate mofetil (they've started me on a low dose to help prevent side effects), then reduce the steroids by 2.5mg at a time (I have the enteric coated steroids). If my bloods remain stable reducing the steroids then the treatment will remain the same. If it triggers a flare then biological treatment will be considered and I will be referred to another rheumatology service as mine isn't a specialist centre for stills.

At the moment my bloods are showing as normal and my consultant told me that another outcome of the meeting was that they believe I have fibromyalgia, but also shared concerns around the impact of the steroids internally and mentioned myopathy caused by them. She advised the rash on my face looks like rosacea and isn't a stills disease rash which I previously had.

I just feel at a complete loss. Is this them saying that it's all in my head? Does this mean I'm never going to get better? I have days where I can barely move my fingers and yet my bloods are showing fine. Why is this?

I hate feeling sick all the time, having diarrhea all the time, this isn't a quality of life and recently have been feeling extremely low as I've turned 30 and can't even go for a walk at the nature reserve as my mobility is poor, I have Shortness of breath, my legs shake after a while and my knees burn and I have to sit down. I'm meant to be going on placement for my OT course in June and currently can barely do any housework let alone that. I feel like all this has completely ruined my life and has come at a time when I was the most content I've ever been.

I really don't want to be on these medications which make me feel unwell, despite the fact methotrexate has helped me go from bed bound to walking. I cannot stand the nausea anymore. The diarrhea I can just about deal with.

I don't know what to do anymore, I really am so fed up 😪

Louisa77

Hi @JessicaLizzie

Really sorry to hear what you are experiencing, those side effects sounds horrible.

I've added some info about in case it's of use Mycophenolate | Side-effects, uses, time to work (versusarthritis.org)

Getting the right medication that works for the pain can be such a challenge then to add side effects as well, makes it so hard and life impacting. Have you not been given any meds to protect your stomach?

Maybe you could reach out to your rheumatology nurse and explain what your experiencing and ask if she's got any suggestions or could give you an idea how long you have to suffer before you can say for sure this isn't suiting you.

It might help to read more about Fibromyalgia | Causes, symptoms, treatment | Versus Arthritis although there are no medications you can take there some alternative treatments you can try.

I hope some of our wonderful members will jump on soon and share their experiences with you.

Take care, and keep us posted how you are getting on.

Louisa

Poppyjane

Hi @JessicaLizzie

Sorry to see that you are having such a difficult time.

I have found a thread where some of our members have shared their experiences, I hope you find it interesting.

https://community.versusarthritis.org/discussion/55979/living-with-ra-at-24

Best wishes

Poppyjane

frogmorton

Hi @JessicaLizzie

I was wondering how you are doing so sorry you are still not on medication which works for you.😕

I don't think I've ever heard of that new one if yours😒 like you have done hydroxy and MTX. I did know the nice rules though so although I am upset for you I have heard this before it's unfairly true.

If you continue to struggle on it though it should count as a fail.

The shaking legs could easily be the steroids I remember my youngest on them when she had leukaemia could hardly walk. They help with pain but gosh are a double edged sward.🙄

As for bloods not reflecting pain levels so many of is have felt the same frustration as you with that!

Do keep posting I have often thought about you and am sure @stickywicket has too.

Take care they DO believe you and we all definitely do ((())) xxx

Toni x

JessicaLizzie

Hi @Louisa77 thank you for replying with the links. My rheumatology team always give the versus arthritis info sheets along with new meds. I am on omeprazole 2x daily plus have anti-emetics and do the whole folic acid thing. I think that's a good suggestion re asking how long do I need to put up with side effects for. I've made a note of that and will mention it tomorrow when they call me.

Thank you @Poppyjane for tagging on the thread- I actually had a scroll through a few threads using the search function before posting so have read through that, but thank you 😊

@frogmorton it's lovely to hear from you - I swear you and @stickywicket have gotten me through all this so far! I do have good and bad days, but recently things have been tough - I think because I've been trying to do more. Been 'told off' (not really) by physio, OT and consultant for doing too much, trying to do some housework and bits n bobs, but I live alone and I can't leave everything for my PA. I think I need to perhaps be clearer with rheumatology about how much the side effects of the medication is impacting me. Its (weirdly) reassuring to hear that re the steroids and legs, although gosh that's horrific and I'm so sorry that you and her had to go through that 😪 perhaps the general weakness is the steroids - I've been on them 9 months now, plus had the IV steroids too.

I think I'm feeling particularly fed up at the moment because I already deferred my last placement on my course, and if I'm not well enough to do the one in June (which realistically I'm not, unless a huge miracle happens) then that's the end of the road for me qualifying as an occupational therapist. I can still graduate but with a masters in allied health science, which just isn't the same. I think I'm frustrated that it's my health that has led to this and that perhaps if things had been done quicker re meds I might have been in a better place now, although no point questioning those things, it is what it is. I'm just such a stubborn, determined person and to see my dream fall away is just heartbreaking. I've gone through every single option with uni. I could technically try again when I'm better but there would be no funding and I can't afford that/never going to be able to afford that without student Loans.

On a positive, I remember somebody posting on here about caffeine and methotrexate- I have found it does seem to help, whether psychological or not. So been drinking plenty of tea today as took the MTX last night. Still feel very nauseous but not half as bad as last week where I was sick. Silver linings!

frogmorton

Morning @JessicaLizzie

I'm glad to see that you have a call coming today from rheumatology. I hope they'll understand how bad things are and can help. I don't know how long you have to try a medication before it will count as a fail. I do hope not too much longer.

Perhaps you have been overdoing things a bit (being stubborn) and determined! Those are not bad traits at all for those of us with Arthritis. But keep some reserves back for your placement in June. Try hard not to get to worried or stressed about it honestly it does make it worse. Hard not to though I know.

If it is the steroids making you weak and I think it could easily be (personal experience as you know) you need them at the moment so will probably have to bear with for now.

I missed the caffeine advice for MTX hangovers! Wow! Sadly no good for me I get 'travel sick' on two cups of coffee! I heard the savoury advice myself abd have stuck with that👍

Take care keep posting and best of luck with the call

Toni xx