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British Lung Foundation
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Medication

Good morning 😊 all

I have been taking Mycophenolate for about 6 months now, and I was led to believe that once on this drug my prednisone would be reduced as I take 45mg a day and have taken this dose for well over a year and sometimes up to 60mg. Does anyone else take this combination and if you do for how long and what side effects if any.

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Hi craftyone,

I have pulmonary fibrosis and I take 2 grams (2000mg) of mycophenolate a day, I was able to reduce my prednisolone down from 20mg to 12mg.

Never noticed any side effects and I've been taken them both for around 3 years.

I have monthly full bloods to check for liver problems as 2000mg is the dose people take if they have had a kidney transplant.

Hope this helps craftyone.

Tony.

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Thankyou Tony I'm also on 2000mg a day but I have Interstitial lung disease which they keep saying is pretty rare so trust me to be struck down with it. They have noticed my lft blood tests are spiking so not sure what they are going to do next.

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hi craftyone, I also am on 20mg pred and 1000mg mmf. bromptom said they would lower my pred after being on mmf for a bit. when I asked to lower it they said no because I had got worse. the only reason my pred got lowered, by harefield hospital to 10mg, is because they wont think about putting me on the transplant list if pred is higher than 10mg. I got the impression it really slows down healing of wounds. it seams that they say it a lot a reduction in pred but are very slow or not keen to actually do it. this is what I experienced. good luck and maybe be a bit pushy and get them to explain properly why they wont do it. one major side effect is cancer, keep a check on any moles/warts. I do. good luck with getting more info, all the best martine. xxx

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Thankyou Martine I'm seeing my consultant tomorrow afternoon so will do as you say, ask questions and be more pushy. Hopefully will get some answers. Jenny x

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Hi Jenny, how did your consultants meeting go and have they said you can start reducing your prednisolone.

You do seem to be on a very high dose of Pred seeing as your on 2000g of Micophenolate.

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Hi thankyou for showing concern about my meds etc. I have been sat waiting for the ambulance transport to fetch me to take me to Sheffield Northern General for my consultation. No transport has turned up and having eventually got someone there on the phone I was told oh dear the transport wasn't booked. I have waited 6mths for this appt. so as you can imagine I have been in floods of tears as I was hoping for some answers today. Now got a banging head and feel dreadful. Tomorrow is another day though. Jenny

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good luck love, and get your answers. remember its your body and you have a say in your treatment!!! i'll be thinking of ya tomorrow. love martine. xxxx

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Hi Martine well no answers about my treatment or test results as no transport has come to fetch me. I'm so upset and angry. All the hospital said when I rang was oh dear the transport wasn't booked. Now I have got to wait another 3mths for an appt. that makes it 9mths in total. I don't think these people realise they are messing with peoples lives. Sorry to rant on . Jenny x

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hi jenny, you must be mad as hell!!! I know I would be. I cant believe they messed up like that, its not good enough. I don't know what your like, but I don't let things like this, especially my health, go. I phone the hospitals get peoples no.s and NAMES, plead with them to give another emergency appointment, because of THEIR mistake tell them you are feeling poorly and need to see a dr. find out the number of transport and check the day befour your appointment. the more (nice) fuss you make, you can be surprised how helpful people can be. I also in the past have phoned appointments directly and explained and they have given me a quicker appointment!! its lots of calls and explaining and phoneing and phoneing, it depends how desperate you are to get to see them. I always think its worth it, putting in the effort and doing it your self pays off. I know by experience. I've even got my sister doing it, shes got a special needs son and not getting on waiting lists not getting appointments, now shes on a waiting list and a dr who she has been waiting 2 and a half months to contact her she got hold of her, phoning and explaining her position. now its all moving for her. but don't give up and get upset turn it into power and don't let them mess you around, it will make you feel so much better, because I learnt we are just a number, not a living person with a life!!! long post love sorry, but I had to let you know, YOU can make a difference and i'm so sorry you have been messed about then dismissed!! thinking of ya love, all my best and good vibes sent to ya, love martine. xxx

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Thankyou Martine I think sometimes I need kicking up the boot to get me back to the old assertive me. I did try getting the specialists secretary today only to get answer machine saying she was on annual leave untill the 25th and that no messages could be left on that number. It makes you wonder what's going majorly wrong in the hospital system, I've never known 1 person to cover 2 specialists' work and no cover when they're off work its crazy. Love Jenny x

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hi darlin' glad you sound more up for a "fight". they told my sister that her sons psychologist was on SICK LEAVE FOR TWO MONTHS!!!! that's why she dident contact her. so their saying nobody covered all those sick children trying to find out what "LABEL" they have and no recommendations, appointments and nothing been done on there cases. its discusting, and we live in a very large borough in London, must be so many children and very very worried parents. have they not got axcess to qualified hospital staff and drs when these holidays, sick leave, maturnity or family loss occasions occure, its a joke!!! stay positive and strong my love martine. xx

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Thankyou Martine I will keep you posted. Love Jenny xx

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