Advice on Mycophenolate pls

[MissFG]

Hello everyone!

Been a while since I posted and both hydroxy & gabentin have been a huge help, thyroid is under control with T3 only, and with a more strict diet I've even managed to go to the gym which has really boosted my mood and helped me with my anxiety.

However I have no stamina and struggle getting up stairs and other basic day to day tasks. My Rheumy requested an MRI of my pelvis and thighs and at today's appt advised me I have inflammation in both my thighs and I felt finally she was taking me seriously! It's only taken a year. She was kinder and more understanding than before and not so dismissive of me which was reassuring.

She's increased my gabapentin for my tremors although said it wasnt related to autoimmune diseases and went through the side effects of Mycophenolate - doesn't sound great. However if I want my health to improve I'll try anything.

My lung function test & joint pain has improved since being on hydroxy but still an issue along with other symptoms. But my muscles concern me as I can physically tell something is wrong and have for a long time and it's not the fatigue.

With this in mind, has anyone got any experience good and bad with this drug? I've had a previous weak positive for myosotis - could this be linked to my muscle inflammation? Is muscle inflammation a symptom of Lupus? How bad can it get? I reminded her that back in March I was crying as I thought I'd end up in a wheelchair and to please treat me hence the hydroxy & gabapentin was prescribed.

I'm booked in for 2 weeks for a blood test and 4 weeks for the Lupus nurse. I was so overwhelmed I wish I'd asked more questions but know this forum can help me get some answers and the letter to my GP should help too. Many thanks 😊

[Paul_Howard Partner LUPUS UK]

Hi MissFG ,

Muscle inflammation (myositis) can be a symptom of lupus, but it is not particularly common. There is a little bit of information about it in our blog article here - lupusuk.org.uk/pain-managem...

[MissFG in reply to Paul_Howard]

Thanks Paul!

Feeling really down today not sure what the future holds for me. Consultants never want to tell you anything. I'm just scared right now and don't know what to do or who to talk to

[Paul_Howard Partner LUPUS UK in reply to MissFG]

I'm sorry to hear that MissFG . I hope that some other members of the community will get in touch about their experiences with mycophenolate. It may be worth you having a look at some previous discussions about this drug too - healthunlocked.com/search/m...

Does your lupus nurse have a helpline number? Could you call them and ask them some of the questions that you didn't manage to in your appointment?

[MissFG in reply to Paul_Howard]

Yes I've been given a helpline but think I'll wait for my copy of the letter to my GP hopefully that might help and I'll see my GP next week for some support

[RichardE]

Hi, I've been on mycophenolate for nearly 7 years with no real problems. I think the most likely things are stomach upsets and a touch of diarrhoea. And of course the generally increased risk of infections from the immunosuppression. I do take a stomach protector (omeprazole) to help but then I'm also on aspirin which I think is worse than myco for stomach problems. But if you do have problems, I believe that there's also a slightly different (presumably more expensive) form of myco available that is absorbed differently that you can try.

[MissFG in reply to RichardE]

Thanks Richard!

Been feeling really sick & stomach ache and only been taking it over the last 24 hours. Think the headache is just stress and worry. I've been advised by my consultant to see how I get on with it for 6 weeks and if side effects are too bad then look at an alternative.

So I think I'll just have to see how I get on over the next few weeks

[RichardE in reply to MissFG]

No problem. I'd definitely give it a chance, I know a number of folk who take it with no problems. But as with all drugs, there'll always be some that it doesn't suit. Hopefully it'll settle down and be fine for you.

[MissFG in reply to RichardE]

Yes ill definitely give it a go and hope it helps!

[MissFG in reply to RichardE]

Richard I see you run a South Yorkshire support group. Not quite sure where I fit in with Lupus and myositis however if you arrange another meeting I'd be interested in coming even better if it's in Broom Rotherham again! 😊

[RichardE in reply to MissFG]

The support groups I'm involved with are primarily aimed at people with vasculitis. But, as there are cross overs, we have had folk with lupus come along to our meetings in the past. And since I have hypocomplementemic urticarial vasculitis, which is very similar to lupus, I keep an eye on all thing lupus via the Lupus UK group here.

So you'd certainly be very welcome to come along to one of our future meetings. There's nothing planned at the moment but we will likely arrange something later in the year. If you send an email to [e-mail] I can add you to our mailing list and let you know when we have more meetings coming up.

[MissFG in reply to RichardE]

Thanks I will!

[MissFG in reply to RichardE]

I've found a myositis support group so going to join them as it might be more applicable to me but thank you

[RichardE in reply to MissFG]

No problem, that sounds good. All the best.

[bones-bones in reply to RichardE]

I have been taking Mycophenolate for two or three years now. It has been a great help and didn't give me any problems when I started taking it. I have a blood test every two months and it has always been fine.

Good luck

[MissFG in reply to bones-bones]

Thank you think it's more the pain I'm in now with my muscles and it taking 8-12 weeks to take effect