I have my pre rehab assessment on Friday. What am I going to be asked to do
It has been suggested that I take Mycophenolate Mofetil PF. What ae the side effects of this drug. I have been on Prednisolone for 2 years with very little effect. One of the lucky ones with this drug.
Thank you for your help.
HI Sunnyday22
I too have PF and I have been taking 2000mg Mycophenolate and 10 mg Prednisolone daily for the last twelve months. I have monthly blood tests which have been fine. This drug for me is much better than Azathioprine which made me so very poorly. As to side effects i know there are many but for me its quality of life. The prednisolone is a maintenance dose but for me a reduction brings backs complete breathlessness. The only problem I have is actually getting this drug as its a red drug and very difficult to get from the GP. Finally got it all approved to get the prescription from the GP and only get 28 days supply and then the pharmacy needs to order it in - but its not really that much trouble, Hope this is of help. Moll xx
Thanks for responding what improvements have you seen since you been taking it
I have actually been on it for 2 years not 1 and my whole quality of life has improved. For me it is definately the combination of the two drugs. I started with 1000mg daily but this wasn't much of an improvement but since I have gone to 2000mg daily I feel and look so much better. I also have Lupus and this drug has had an overall benefit for this as well. Although like others say I am more susceptible to infections, which I have had three really bad chest infections which lasted around 5 weeks each in the last 12 months, but otherwise I am quiet active and can do most things albeit a lot slower and pacing myself. x
Thanks for you help
Hello Sunnyday
I don't know anything about the medication you mention, but thought I'd answer your query re Rehab assessment
You'll be asked to walk, with your oxygen and walking aids if you use them, around two markers set a distance apart. A series of bleeps are sounded which urge you to walk faster every so often. You'll have an oxymeter on your finger and an alarm on a string around your neck
It sounds hard to walk when you get SOB but you're not allowed to go further than is safe (measured by the oxymeter) or when you feel you've had enough, so you might not even get as far as the first bleep.
Don't worry about how well you do as the idea is to get a baseline for your future exercise plan, and you're not in a competition. I've had 5 lots of PR now and have seen people manage only a few steps at their assessment but improve during the actual rehab sessions.
I was very nervous at my first session, afraid I wouldn't be able to cope with the exercises, but it goes at your own pace and will do you no end of good!
Best of luck
Thank you for your reply My main concern was that you can fail the test and no t be allowed to do the rehab
You can't fail the test on your performance, but if the physio picks up a health problem which could be dangerous if you exercised, you may get sent to your GP for investigations before you can begin the course. Once the problem is sorted and as long as its safe for you to exercise, you can take the course.
This happened to me, but once I got my heart problem sorted out, I'm now eligible for pulmonary rehab again
G'day Sunnyday
My wife ,Susan has IPF, diagnosed in May 2014. Trialed chemo for 3 months (very nasty and ineffective),in fact almost caused liver failure.
Susan has been on prednisolone and Mycophenolate for almost 2 years, with either or both slowing the disease. There has been little or no side effects.
Rehab is the best thing for you, yes, you will probably undertake a walking test in order for the physio to evaluate your needs. but please do not over do the test. If you are asked to walk faster and you cannot do it, tell the staff. Putting yourself under extra pressure will not do you any good. They should be monitoring the walk and normally they will call a halt to it if your sats drop to an unsatisfactory level.
We are fortunate in the fact that, here in Australia a patient only has 12 rehab visits, but as Susan is on the Tx waiting list the hospital has extended the rehab indefinitely.
Good luck with the evaluation.
Will
Thank you for information about the dug and the rehab.
morning sunnyday22, i have PF and PH, august 2015 i was put on MMF 1000mg a day. i have not really noticed any side effects as such. luckly i to am on pred and dont really have any side effects, except weigh gain!! or am i just greedy, humm not sure!! i know that a lot people can suffer from a lot more infections, because the MMF lowers your immune system, and they warned me to not go near any one with colds, coughs, sickness ect, you have to be careful on it. this is why i am on a low dose, they dont want to risk me getting more chest infections. this drug is meant to slow PF, it has not worked for me personally, i have got worse, but every one is so different.
because it is a red list, my hospital brompton, arrange a company to deliver it to me every 3 months, my gp could not do it either. this company deliver all red list drugs around the country to patients of the NHS who can't get them from their dr.
good luck with your rehab and your desision to take MMF.
take it easy, martine xxx💊💪😊
Thank you for the information about the drug I was not aware that it was a red listed drug and I hope all goes well for you.
G'day Martine
I was getting a little worried as I have not seen your smiling face here for a while,or maybe I haven't been here.??
How are you coping? and I trust your Mum and Dad are okay.
Have you had any luck with home help?
Susan developed a chest problem two weeks ago, now I understand why Fibrosis sufferers cannot afford to catch infections.
Still cannot shake it and refuses to go to hospital to have it checked. I think she is worried about being taken off the list.
Stay happy
Sending you big hugs
Will
hi will and susan, i have moved into mum and dads, it was going to take a while for funding of a home help and it all got so bad with the lack of oxy i came back home to mum and dads. there spoiling me and the dogs something rotten!!!
going into brompton tomorrow 8th for more heart tests, and hopefully they will decide weather or not tx list or not.
over here will they will not operate if you have an infection its to dangerous, so imagine its the same down your way. so if they phoned her now for a tx and did the pre-op they would not go ahead. tell her she needs to get rid of this chest infection asap even if it means going into hospital, because its effecting her chance of getting a transplant at the moment, they dont take you off here, they just wait till your infection has gone usually a few weeks or so, give you a check up and then your put back on the active list.
please check this with your tx hospital, because she could be making it wose for her self, the longer she has the infection the longer its going to take the meds to get rid of it, does she realise they wont give her a tx at the moment? maybe it will give her the push to get it sorted, our infections dont get better on there own our lungs are to damaged to self repair, and each infection causes more damage, as i'm sure your aware.
i'm really sorry will for her and for you, it must be awuful and very worrying for you not being able to persude her to go to hospital to get it looked at.
please let me know if you can change her mind .
take care of your selves and i'm sending lots of good vibes and love, martine xxx💗💊
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Hi there MM ! Si nice to see you're active on the site again. I thought it would be good for you to have a rest,after the move to your lovely mum and dads etc. Any news re your oxi situation. Honest to God it made me so upset that you had been left like that. Truely,I was fuming! Good luck for tomorrow at the BROMPTON. Fingers crossed for youy dear.
hi every things still the same except i'm alot more relaxed!!!! thanks for the luck tomorrow, i've just shoved it in my little suit case!!!! any news i get i will let you know, i'll be letting a few people know fuming i was/am as well at the brompton.
there picking me up in an ambulance tomorrow, i feel like the queen with this special treatment!!!
thanks for the note love, you take it easy, love martine xxx🚑💜
I am under The Royal Brompton and like you was apprehsive when being asked to take Mycophenolate M. After gathering info and meeting folk who already take this drug, I started my Myco M ( MMF) in April 2016. I am on 500mg twice daily along with Azithromycin 250mg on alternating days. Plus my prednisilone 10mgs. Along with other drugs not applicable as have Cardiac shunt as well
It has taken about 4/5 months to see the benefits but they improve every day and my lung function has little change( stayed constant) which was a real uplift, at last weeks chech up at the Brompton
You know your diagnosis and if the medics think this is the appropriate course for you. Great.
It has helped me enormously.
Good luck sunnyday
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