Bosentan

[Spook257]

Saw rheumatology today and have been prescribed bosentan for severe reynaulds and ulcers. Wondering how others have got on with it. No other drug has helped at all so far. Thanks

[Jacko37]

I tried Bosentan a few years ago. While it stopped new ulcers developing it didn't really help the ones I had. Saying that I was only on it for about a month. They caused a drug induced liver injury and made me quite sick. Don't want to frighten you, they might really work for you, just make sure that you have your bloods done regularly, good luck.

[Spook257 in reply to Jacko37]

Thank you.

[OldTed60]

I was advised by the scleroderma prof that, if we have a lot of scleroderma gut issues as I do, best avoid Bosentan. He seemed pleased that I was getting monthly iloprost as well as 100mg Losartan. He said that the gastro team at Royal Free had recently reported finding ischemic changes in the gut lining so they were taking scleroderma patients off it and others and going back to iloprost. I do have scleroderma but so far I don’t get ulcers much. This may just be because I also have Erythromelalgia which affects my extremities though. Having read your previous posts here I wonder if you’d be better off waiting until rheumatology have discovered if you have an autoimmune disease or exactly what’s going on to cause the ulcers and get you treated for the underlying disease perhaps? But see if others reply here as I’ve not tried Bosentan so can’t really say.

[Spook257]

Thanks. They are continuing to investigate other issues and I had more bloods done yesterday. Apparently there is a mild positive for sclerderma but they didn't really pursue that. Your comments are a bit worrying as I have an ileostomy - no large bowel - although the pharmacist said it should nit cause a problem. It's all very confusing and hard to know best way forward.

[OldTed60 in reply to Spook257]

I understand as a person with a colostomy myself. My scleroderma is thought to be the main reason I needed this and will likely get an end ileostomy longer term. I know you haven’t found iloprost to be helpful but it does at least have the advantage of bypassing the gut. And in fact I’ve noticed that, now that I’m getting iloprost infusions monthly rather than 3 monthly, my gastroparesis seems to be much better. I couldn’t tolerate Nifedipine, Amlodipine or Sildernafil so I’m sure Bosentan would have caused me problems.

Prof Denton wrote that my issues with these was gut related but in fact it was skin rashes and terrible headaches with heavy nosebleeds that meant I had to stop them. Losartan 100mg has helped although I was originally put on it for hypertension. And when I say helped I don’t mean that these have prevented my Raynaud’s at all but I mean I no longer get excruciatingly painful finger tips and pads or painful subungual haematomas and splinter haemorrhages in my toenails and it’s eased my Erythromelalgia in my feet. I have horrible side effects from iloprost as well but it’s only once a month and I stick with it because it means I can continue to work as a self employed illustrator and writer. Before I started iloprost I had given up working and was using voice recognition to type. I get it via a portacth now which I think helps as well because my veins with useless!