New plan of action

[adrienneioannou]

Had a personal phone call from my new rheumatology doctor. Have decided I will start mycophenolate in December and get another steroid injection to get me through the holidays. Lets hope this works.

[joannebond360]

That's really good news. Mycophenate worked amazingly for me, almost forgot I had lupus for months but had to stop taking due to unusual side effects.

Good luck with it and really hope it works for you.

Jo

[joannebond360 in reply to joannebond360]

*mycophenolate*

[tennissenior in reply to joannebond360]

What is Mycophenolate - and what are the side effects? Right now I take nothing. Whatever works for one affects the other, with me. Besides Lupus, I have severe ITP. Anyone hear anything about stem cell injections? I would need a donor - my bone marrow is diseased with MDS. Good luck everyone!

[adrienneioannou in reply to tennissenior]

I had ITP, with a platelet count of 1. This ended up being the start of lupus for me. I now have sticky blood instead of thin. Mycophenolate is the new med I will start on as azathioprine not working for me.

[Limerick5 in reply to joannebond360]

What unusual side effects did you have if you don't mind me asking I'm on now three months and I'm still not right would to hear from you that was for joannebond360

[joannebond360 in reply to Limerick5]

Hi limerick5. It started witha sore throat constantly, kept getting a fungal infection in my throat and esophagus, i couldn't eat or drink and was so painful to breath. Every time I stopped the myco it cleared up but as soon as I started again it would come back. Was horrible but worked amazingly for my lupus. Managed to get steroids down to 5 mg.

Are you experiencing side effects too?

I didn't have any side effects to begin with, worked very quickly for me.

Jo

[adrienneioannou in reply to Limerick5]

The only side effect I have is feeling sick all the time and my blood work is showing the lupus is still active.

[Barnclown]

Wishing you all the best!

I added myco cellcept to my treatment plan (daily hydroxy 400mg + 20mg amitriptyline + 3x 10mg 4 week pred tapers per year) in early jan '14 and it began to damp down the symptoms that my other meds hadn't reached. Including joint probs I'd been having steroid injections for. So far, my myco maintenance dose has been 1000mg per day.

At 61, i now feel better than I have since the 1970s. But I've also discovered that I still have to continue to carefully lifestyle manage my conditions...just as conscientiously as ever....otherwise my neuro cerebral symptoms flare, so I'd need one of my 3 annual pred tapers to damp them back down again

During the first few months on myco, I had quite a lot of my long standing chronic upper GI symptoms flare (gastroscopy & oesophagitis), so had gastroscopy to check on things...which was reassuring. Were I to change anything I did, I'd have taken daily oesomprazole during my first months on myco. But, even so, my upper GI symptoms did eventually settle down...as if my bod was just getting used to myco...I had a similar experience when starting hydroxy 4 years ago. And I do now take oesomeprazole daily while on pred.

Hope you'll let us know how you get on

[tillie]

Like yourself have mctd lupus etc, Wishing you well when u start mmf. Stick with it

was doubtful for so long but did kick in .great.