Mycophenolate

[newbe]

I have been on mycophenolate for about 4 weeks and just noticed on the advisory note that you are supposed to avoid sunlight. Does anyone know how dangerous it is to be exposed to sunlight. I wear a large brimmed hat and have bought strong sun block. Thanks.

Debbie

[naila_007]

Hi Debbie,

I will be starting Mycophenolate in the coming weeks - have u had many side effects?

I know 4 weeks is not enough time but has it made a difference?

regards,

Naila

[newbe in reply to naila_007]

Hi Naila, I was put on it as a preventative as I have very mild lung fibrosis even though I did not have any shortness of breath or other symptoms. I do think it is a very effective drug from reading reports from this site. I just feel really fatigued though so sleep when I need it.

Hope it has benefits for you. Good luck.

Debbie

[Hidden]

I'm on Mycophenolate and very fair skinned so I wear SPF50 and a hat and shades now. I have only been on it since December but have been on other immunesuppresants previously and always been okay as long as I wear sun cream.

[newbe in reply to Hidden]

Thanks Twitchytoes, I have bought factor 50 and might even use some fake tan cream!

[JayneO]

I'v been on Mycophenolate for eighteen months, Iv just returned from a week in Ibiza, used Rochy Possay 50 + sun cream and all good! I was told as long as you don't sit in it with no protection you are ok? Anyway doesn't the sun make you feel better? And also helps the Raynauds so it has to be worth it!!! We don't have many benefits with this disease, so a little sun has got to do you good!!!!

[newbe in reply to JayneO]

Too right it's lovely to feel the heat. I will use sun cream and a hat.

Thanks for replying.

[cowhide]

Hello Debbie

when you were put on mycophenolate your consultant or a nurse should have gone through the side effects of it with you - I had a one to one with a specialist nurse and was given a leaflet (not the one that comes with the tablets). The skin cancer risk was explained to me - it's because your immune system is being depressed. I have been on it for nearly a year and work out of doors, I am now a lot more careful about wearing a hat and factor 50 sun screen. You should also have been told the importance of flu and pneumonia jabs and the urgency of getting any infection treated asap. I assume your bloods are also being monitored?

I have had no problems with it.

[newbe in reply to cowhide]

Hi, thanks for replying. I was told absolutely nothing about the drug but am having fortnightly blood tests for the first 2 months and then monthly tests. I didn't know you needed flu jabs. I have only very mild fibrosis in my lung bases so they weren't sure even whether to start me on the drug but decided it would be safest. Anyhow I can only say that I am extremely exhausted most of the time but don't seem to be able to sleep when I go to bed even though I am having difficulty keeping my eyes open. I am due at the Royal Free in London so will ask a Lot more questions then.

All the very best to you.

Debbie

[cowhide in reply to newbe]

This is the sort of information you should have been provided with (although this leaflet is for another condition it is the same drug).

ouh.nhs.uk/patient-guide/le...

It is really important that if you have any sort of infection or even minor surgery that you tell the health professional who sees you that you are on myco.

And a gentle nudge - ALWAYS read the patient information leaflet that comes with the medicine as soon as you start a new drug as there may be something in it that is very important and your Dr did not realise applies to you. Don't wait 4 weeks!

Hope it works for you.

[newbe in reply to cowhide]

Thanks for the link on this drug, it was very informative. I will read leaflets with tabs in future I guessed the consultant would have given me some advice.

Thanks again.

[Hidden]

With your big hat and strong sunscreen, you'll be fine. It's just that Mycophenolate tends to supress your skin's own ability to manage sunlight, thus putting you at a slightly higher risk of certain skin cancers. Don't let yourself get burned and you will be fine.

[Lyndabickley]

Hi

I was on mycophenalate for around 9 years. I was warned of potential problems but never experienced any. I had rapid onset severe scleroderma and the medics at Royal Free admitted me to the hospital with a view to using gamma globulin. In the event I never needed that as, by the time I was admitted, the mycophenalate had stabilised the condition. I'm not sure I needed to take it for so long. I had monthly blood tests which apart from one occasion when my liver function tests went awry I had no problems ( I think the liver function problem may have been due to indulging in too much southern comfort as we had brought some back from holiday, either that or it was an error as I felt fine and the liver function was normal the next month!) Anyway best of luck with it.

Lynda

[kirsty3362 in reply to Lyndabickley]

Hi Can I ask you how the decision was made for you to come off the mycophenolate? I have been on it for 22 months now and initially was told it would last for 2 years, now they are suggesting I might be on it indefinitely. I have fibrosis of the lung.

[Lyndabickley in reply to kirsty3362]

Hi.

The decision was made at one of my routine annual appointments at the Royal Free. Although I have some lung fibrosis my condition seems stable and my skin had softened. I was initially told I would be on mycophenalate indefinitely also. I have been fine since.

[newbe]

Hi Lynda

It sounds like you had a horrible time. Thanks for replying I spoke to the Royal Free today and they are going to request a copy of my lung CT scan which shows the mild fibrosis in my lung bases. This scan was done at MK hospital, where I have been well looked after. I just wanted the Royal Free to be able to see it too.

All the very best.

Debbie