Results from Mycophenolate tablets

[Piperava]

Hi I would be interested to hear from anyone who suffers from IPF who are taking or have taken Mycophenolate tablets and what results you have experienced and also if you have had any side effects. Also how you cope with IPF.

[AngieB72]

I have PF and was given this s few years ago. It made my breathing deteriorate so after 6 weeks I stopped taking it and my breathing returned to how it was before taking it thank goodness. I know others find it very good but I couldn’t tolerate it. I hope it works for you.

[Phyll]

I have PF and was recommended Mycophenolate. It made my all my joints painful, the worst exacerbation of my RA I've ever had. However, I'm going to try it again. I must be mad! Apparently when it works, it's very helpful. Good luck with yours.

[Piperava in reply to Phyll]

Can I ask what caused your PF as it's IPF my husband has although he had a hiatus hernia operation over 30 yrs ago but they have ruled out acid reflux as the cause, very strange as we have noticed on several web sites it can be the cause.... who knows. That's a shame the tablets affected your joints and caused a flare up with your RA......nothing is easy eh they give you one drug which then causes different problems it's a vicious circle. Keep well and good luck if you try them again.

[Titchykath]

I have been on it for a year, my lung issues have not got worse, so it must be doing some good , my issue has been with stomach issues and very fatigued. But if it stops or slows down lung fibrosis then it’s good 🙂

[Piperava in reply to Titchykath]

Hi have you been prescribed omeprazole for your stomach issues. My husband takes 1 a day a seems to keep any issues at bay. He had a hiatus hernia operation many many years ago so can't afford to have stomach issues as he can't vomit. Glad your lung issues have not got any worse, the tablets seem to have helped my husband's also. Keep well.

[Titchykath in reply to Piperava]

Yes just got back from consultant, they have advised me to up the omeprazole from 20 to 40 a day , just to keep the reflux at bay . 🙂

[Sparkimoore]

Hi!

Sorry, I don’t know what IPF is, but I had to take Mycofenalate for severe uncontrolled Asthma despite permanent steroid dose. It was BRILLIANT & controlled the asthma like nothing else has come anywhere near. However, it’s a highly toxic drug & I had to have weekly bloods to monitor liver & kidney function which it affected immediately. I also developed very hi Bp, squamous cell carcinoma, ( a form of skin cancer) severe reflux, chronic anemia, & numerous other side effects BUT without it I probably wouldn’t be here. It suddenly stopped working in March 17. Thank GOD MEPOLIZUMAB had just been approved by NICE & I was immediately started on that.

Give Mycofenalate a go, but be aware of these severe side effects.. Good luck!

[Piperava in reply to Sparkimoore]

Hi Sparkimoore, IPF is idiopathic pulmonary fibrosis, idiopathic meaning they don't know what causes it. My husband has been on the tablets for 7 months now and it seems to have slowed down the progression thankfully. Yes he has to have bloods monitored regularly but so far everything seems fine, however he did have a short period where he was feeling nauseous cut back to 2xtwice a day but has now gone back to 3xtwice a day he now has anti-sickness tablets just incase as he had a hiatus hernia operation over 30yrs ago and can't vomit. Hope your new tablets are doing the trick

[Sparkimoore]

Yes, I had to increase the dose VERY slowly , starting at 250mg Bd, slowly increasing by 250mg a month til I reached the max dose of 1000mg bd.

This was back in 2014, & thinking back, yes I felt HORRENDOUSLY SICK those first few months & I thought I’d never be able to tolerate it, but persevered, & all the nausea left.. the other side effects developed as I took the drug over years, which were increasingly intolerable, but there wasn’t anything else they could give me & the Consultant begged me to continue as the alternative was more than dangerous.

I’m sure these initial nausea side effects will settle. I hope your hubby can endure the rest for a while at least, if it will slow the PF a little. We have to be grateful for what we can get with these drugs!

The MEPOLIZUMAB is a huge monthly injection, portrayed as a wonderdrug, which it is to some people, but altho it’s allowed me to stop the Mycofenalate, tests this month have shown I’m deteriorating again & it’s already reached its optimum. Terribly disappointed it already needs increasing steroid supplements they were hoping to stop.

( Clearly NO CHANCE) Another new drug recently licensed by NICE may work better. So scary looking into the abyss again.

Good luck to your hubby. I feel for him..

Rose