On 60mg prednisolone and 2g mycophenolate mofetil... - LUPUS UK

LUPUS UK

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On 60mg prednisolone and 2g mycophenolate mofetil daily - anyone else on similar and what side effects should I expect other than moon face?

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PoppyJaman profile image
PoppyJaman

Dear Lucy, I was on half your dose not so long ago and I experienced lack of sleep, a big appetite, thirst, low mood, my skin however was glowing but felt thinner. What I can say is that all the symptoms are very responsive to the dose and as you wean off and your body recovers the negative symptoms will dissipate. I feel the focus for us has to be on recovery and remembering that this is the long game that we are playing and knowing that it can be managed and that you will regain control. I wish you a good recovery.

Poppy

irenestephen profile image
irenestephen

Hi Lucy

I am on 5mg prednisolone daily (did start at 60mg but have managed to ween it down to 5 but can't get it any lower or lupus flares up) and am on 500mg x 4 per day of mofetil.

Mofetil did not seem to have any side effects but the predisolone was the puffy face and the tiredness. I found the puffiness settled once you are on a lower dose).

To counteract that I have to take amitryptolene (which causes thirst) as a muscle relaxent to help me sleep and this has been working well for me for the past 3 years or so with the steroid being increased temporarily if required.

The only other thing I would suggest for all steroid takers is to always mention that you are on them and for how long if getting an operation! The steroid makes the anaesthesia wear off quicker than normal and I once woke up too fast after an op. and it was'nt a very pleasant experience!

It took a long time for me to accept that steroids was the only way forward for me but as in the earlier answer the benefit to me far out weighed the side effects.

Take care - Irene :-)

the mmf has been a good drug for me just more prone to chest infections so try to not hang around people with infections and if you think you have an infection get it treated promtly.

teecayc profile image
teecayc

Hi Lucy, I'm on 12.5mg Prednisolone and 6x500mg Mycophenolate daily. I can't really say I've had any side effects, not any that I've realised anyway. Maybe they've been buried in all the usual symptoms of Lupus!

But if you carry on taking these, hope you're as lucky as I have been taking them!

lucyloo023 profile image
lucyloo023

Thanks for replies. Think it is just a case of putting up with moon face as obviously benefits far outway the bad things. Just joined this site and and it looks like it is a great support network and hopefully will get the hubby to have a look too and maybe understand things a bit more!

SueHughes profile image
SueHughes

Hi, I have had Lupus and Rheumatiod for 25 years,I am 59 now.Its playted havoc with me especially as I have got older,Steroids do have side effects but I couldnt have done without them.I have cut them to 2.5mg, not that my rheumatologist is too happy.The reason is I keep breaking bones due to Osteoporosis,my skin is wafer thin and my tummy is very fat !! I dont have a fat face anymore though,cant say it was ever moon face.My view is take whatever helps you because its a pain of a disease and you want to be as comfortable as possible.Try to remain positive my Dr always says,but she doesnt have Lupus.Let me know how you are doing,Take care,Sue x

wheezybronch profile image
wheezybronch

I was on the same large dose of prednisolone, 60mg, and I developed"Drug induced cushings syndrome" see this explanation, I hope that it helps you.

nhs.uk/conditions/Cushings-...