The best of three evils: Which medic... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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The best of three evils: Which medication will cause me least grief?

Sclero_99 profile image
3 Replies

I've been told my lung function is now about 65%. The scarring has noticeably increased over the last six years. Though, I've also been told my blood pressure has not increased, meaning pulmonary hypertension is unlikely to occur, one positive I guess. If my lung function continues to decrease I will have to make a decision which medication, of three offered, will cause me the least grief. APO-Mycophenolate, Esbriet (Pirfenidone), or Ofev (nintedanib). I unfortunately eat grapefruit for breakfast!

Taking mycophenolate during a pandemic, seems foolhardy, and who is to say when the next pandemic will occur. I have a choice NOT to take this drug.

Esbriet still means giving up grapefruit, but not my freedom. As I am restricted to public transport, an immunosuppressant is the last thing I want. This drug apparently works on the fibrosis without bringing down my immune system, however it still has some lovely side effects.

Ofev appears to increase the possibility of bleeding and bruising which causes some concerns.

At the moment Esbriet seems to be the least of the evils, but I wondered if anyone else has any useful insights on these drugs. I would expect a fair few members are on mycophenolate, but what about the other two drugs?

Also, my meals are far from regular, Esbriet should be taken with food, but if you are stuck on some bus in the middle of nowhere, exactly how much food do you need to pack in a plastic bag? At the moment i'm visualising carrying around a lot of dry toast and water bottles.

3 Replies
trunchalobesity profile image

I’ve had no side effects with mycophenolate and I am on the maximum dose and have been since it was licenced.

I wear the n type face masks as the latest WHO recommendation in all situations including public transport.

Mycophenolate has been a game changer for me and even showed improvements in lung function.

It would be foolhardy to stop taking this drug for me.

I also take the biologic abacept and steroids plus a range of other cocktails, mainly for gastrointestinal issues.

You should be your own advocate but should really be discussing this with your lung consultant. Everyone is unique and they are the only ones qualified to guide you.

Best wishes

Sclero_99 profile image
Sclero_99 in reply to trunchalobesity

Thank you for replying, I've only had one appointment with the thoracic physician, so I really don't know them very well. I think he got the message, that I'd rather not bring down my immune system, if there is an alternative option. So far, I have only minor symptoms, no pain, bent fingers of course, shrunk mouth, and gastrointestinal issues, mostly being vomiting up air - sometimes first thing in the morning before I've eaten. I think I've been fairly fortunate so far.My breathing has not been affected too much ... yet, but I do notice that I get out of breath faster than I used to. I'm not familiar with the N-type masks, but I'm sure I can look them up. I will avoid medication as long as I can, as being a carer, my life is far from regular. I sometimes don't get breakfast until 14:00, and dinner at 23:00 as I get distracted with other things - bed changing, medical appointments, home service visits, all eat into my days.

My father is 93, he may not reach 94, so he gets all my attention. When he's gone, that's it, so I want to make the most of the time we have left. I come second to his needs. When he goes, I'm on my own. It will be a big change in my life and I'm not sure how I will deal with it.

If I take Esbriet, I think I'll be eating a lot of toast on the run!

bertie203 profile image

I've heard that Nindetanib combined with MMF is one of the more standard treatments - and that matches what my doctors are telling me - whereas I've not heard much about Pirfenidone. Right now my lung condition is stable enough and I'm only on MMF - but Nindetanib has been mentioned as a backup if I start deteriorating. At the end of the day it's probably best to follow your doctors advice though.

But I'm also reasonably lucky: I've been able to avoid public spaces for most of the pandemic (doctors visits are my biggest risk), it's definitely worth discussing that topic with your doctor. It's actually not clear that MMF makes the Covid risk any worse, but it can affect vaccine effectiveness which is my biggest concern. I'd be less concerned if you're able to access e.g. Evusheld for prophylactic protection (not available where I live).

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