Rituximab - Itchy Skin

[Investigator1]

Hi all hope everybody is ok. I had me last infusion nearly 4 months ago but have been on Rituximab nearly 4 years. But itchy skin blimey it’s driving me mad. Had my bloods done last 4 months ago all was good as they always are. I have had some E45 anti itch on prescription, it eases it a bit but doesent take it away. I did have this 3 years ago but it went. But had it this time 3 weeks. Just worried it isn’t something serious. Got my bloods again and consultation in 3 weeks. It’s all over the body but random places I.e not at the same time. Can anybody help.

[Main1234]

hi although it’s lovely to hear from you it’s a shame we always have concerns when we post!

You mentioned you are having your bloods done and seeing consultant soon. Have they checked kidney and liver function. Can also sometimes be a vitamin deficiency.

Have you changed anything in your environment? Any raised areas? Anyone else in the family with similar?

Sure others will come along with suggestions but let us know how you get on.

[Investigator1 in reply to Main1234]

Hi Main1234. Nice to hear from you. So firstly blood tests. Yes always check function for both, reasons being I had kidney involvement when diagnosed way back and my Consultant is Renal so on the ball. As far as liver tests are concerned I had them done in August as part of 3 month review after statins and was slightly down on B12, they put this down to Covid. 5 weeks late tested again all normal, checked everything too. Then in late October liver tested again for functionality in preparation for Rituximab and again all ok. I haven’t changed anything apart from upping my exercise over winter by extending my walking by about 70%. Apart from the itching I honestly feel fantastic, plenty of up and go, good appetite, sleep a bit hit and miss but still managing 7-8 hours and only once has itching disturbed me. No raised areas, wife has PBC but controlled with Urso Acid. Just don’t know, I fear it my liver but don’t know why but have become paranoid since diagnosis. Nick.

[Main1234 in reply to Investigator1]

It’s easy to become paranoid Nick it’s such a weird disease that throws curve balls just when you think everything is going ok.

Know you have an excellent consultant so hope it resolves soon

[Investigator1 in reply to Main1234]

Thanks my friend. Yknow just been out for. 5 mile power walk, was back in 1hr 6min and I can hardly feel it. Surely it would be there al the time if it was something serious.

[Main1234 in reply to Investigator1]

Definitely you would think there would be more signs and a reduced level of fitness and well being . You have done well with your fitness Nick.

My partner has bought an electric bike and it’s opened up a new world. Like you he likes to keep fit and has just started running 🤦🏻‍♀️

Keep in touch

[Investigator1 in reply to Main1234]

You know something my wife bought me a new hybrid for Christmas, not an expensive one just something to keep me active, I’m out for it for hour tomorrow around the old railway between Catterick and Richmond but have said my next one will be electric just so I can stay out on it longer. Just been to see Black Bag at the flicks. Nick.

[jamesroybuck]

Hello had sle for many years ; itching is probably my biggest problem ; I get EURAX CREAM WITH CROTAMITON in large 100g tube on prescription ; not perfect but better than all the others that I've used.

[Investigator1 in reply to jamesroybuck]

Hi James. Thank you for that Pal. So are you actually receiving infusions of Rituximab?

[jamesroybuck in reply to Investigator1]

No , except for the creams , I only use natural remedies

[SKSMITH555]

Hola I live in Spain now for over 4 years. I got EGPA 2.5 yo. I was in a very bad place at the time. I have also had itching problems which comes and goes. I shower every morning sometimes later in the day in summer as it gets very hot where I live and always use cream. My pharmacist recommends Dexeryl I'm not sure if you can get it in the UK. It helps but not to the extent of curing the itching. I have been on Rituximab but Rheumatology consultant is going to put me on MEPOLIZUMAB soon. Apparently it is very good for asthma and itchy skin. So we will see how it goes. I also keep myself fit and the climate here allows me to do lots of walking and cycling. I have been absolutely blown away with the health service here. I was originally in the private system when I was diagnosed but now in the public system mostly because of distance to travel for appointments etc. Cuídate

Steve Smith.