Mycophenolate newbie

Hi everyone,

Am going to see the rhemotolgy nurse tomorrow. Am presuming thiis will be one of many visits as they start me on mycophenolate. I thought u only took it if u had organ involvement. I have a lot of skin involvement and skin round my hands so tight - can't make a fist. Minute organ involvement.

To be honest a bit nervous in taking it - am assuming I carry on with the other meds as in niphedpine, iron tablets and vitamin D. Would I have to take any folic acid or steroids alongside mycophenolate?

Any advice much appreciated!

Regards,

Naila

Ps any ideas how to remove a ring from right hand ring finger - just can't get it over my knuckle - despite the weight loss!

7 Replies

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  • Hi. I have primary Sjögren's rather than Scleroderma but I'm on Mycophenolate, having been severely allergic /intolerant to four others. I am also on Adcal D3 and have tried various Raynauds drugs but been unable to tolerate them so currently on Losartan.

    I find that Mycophenolate has so far been almost side effect free and I've been on it for 7 months. I don't have organ involvement yet but my peripheral and autonomic nervous system has been badly affected by my Sjögren's.

    I'm now heading up from 2g to 3g of this drug and I'm feeling very tired and a bit nauseous but I could be that my Sjögren's is flaring rather than the Mycophenolate. Hope this reassures you. You don't need folic acid or anything else in order to take this medication. For me it's been a good drug. Best of luck.

  • Don't be nervous, fo me this has been a fantastic drug, been on it for 2 years and no side effects. I take Ad cal, Prednisolone, lisinopril and lanzaprazole. As for your ring problem, I have curled up fingers and cannot get my wedding ring on, but try concentrated washing up liquid..

    Good luck.

  • What I did for the ring problem was spray with glass cleaner then pull off with the other hand in a rubber glove.

    Good luck!

  • If you look there are quite a few similar threads about this. I've been on mycophenolate for 9 months with no problems and it is often prescribed to slow down skin thickening rather than organ involvement. I am not on steroids and also take vit D and iron. I used to take nifedipine but am now on sildenafil as the former didn't seem to help me much (ie the change was nothing to do with going onto myco). I don't take folic acid at present but I will be asking my rheumy about it at my next appointment. Good luck I'm sure you will be fine. I used to use washing up liquid to help with my wedding ring - but my weight loss has made it easier now.

  • try some veg. oil on your finger to slide ring off. If it doesn't work you may need to get it cut off....I think I remember someone taking a tight ring off using some string...try having a look on youtube for this video and see if it works. Myco. is okay for me...but I don't have much skin involvement at the moment..I have tight swollen fingers and joint problems but mainly my lungs are the worst with pretty bad damage to them. I was taken off steroids as they were causing more damage to my organs.But, everyone is different so you will have to wait and see. Good luck going forwards.

  • For your ring let a jeweller take it off. That's what I did.

  • Thanks Zenabb - i will give that go.

    tried the fairy liquid and string - but no luck.

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