One step forward 2 steps back

I took myself off Cimzia 2 years ago because I was so ill despite my rehumy nurse insisting it couldn't be caused by Cimzia. I couldn't breathe, I couldn't dress without gasping for breathe. Then the skin on my fingers starting splitting, peeling and bleeding. When I refused anymore Cimzia I then started steroids that had been prescribed for my asthma. Within days my breathing was substantially improved and my fingers healed. I'm now on toczilimab which is good for my RD but my fingers are once again a mess. If I go into my handbag I come out with multiple splits on my fingers bleeding. It's like your body has to remind you that you have RD. I can't lift a cup of use knives and forks because my fingers are so sore. I have been on 5 mg steroids for 12 months to control it. I finally came off the steroids and now my fingers are a mess once again.

I'm sorry I'm just whinging just get so damn fed up. Rant over so now I will go back onto the steroids.

Shazbat x

7 Replies

  • Tell us what else you have tried for your fingers - or you will get a long list of things that you have tried before!

    I use beeswax gardeners' cream for my splitting fingers and it does keep things under control as long as I use it frequently. When they have been bad i have used it together with wearing cotton gloves. And, of course I can't do anything like washing up!!!

  • 5mg really is a very low dose. I use body shop's hand cream which is a barrier cream and at night I use a Norwegian heavily moisturising one. I wish you all good things. J

  • I can't imagine having this on my fingers!! Poor you! I get it on my feet and the splits hurt so badly. I tried all kinds of creams and lotions, but what I found to work best is old fashioned petroleum jelly. I rub it on really thick then put socks on before bed. It works like a charm. I would think you could do the same with your fingers and put on cotton gloves afterwards. I hope you find something that will help you, because that's got to be really painful! Gentle hugs.

  • I feel for you. Hang in there! Cheers Doreen

  • Thank you everyone, unfortunately it is a long list of creams and barrier creams. I have tried the majority of the white barrier creams plus Aveeno. In total I have just spent 2 years on steroids. One year on 20 mgs so I put the weight on, I had to fight for the Toczilimab because I had already had 3 biologicals, but the Cimzia apparently switched on another allergy resulting in the skin shearing from my fingers the hospital said stay on low dose steroids for my hands But my GP warned me that oral steroids would thin my skin. So I gradually came off them. I guess I was just fed up I put my hand in my handbag and the plastic on a packet of tissues split the skin in 5 places, so I look like an accident with plasters all over my hands, then 2 of the cuts got infected. I will try some of your suggestions and thank you for listening to my moaning.


  • That's not a rant...RA SUCKS!!!!

    Hope your fingers heal soon.

    Take care


  • Thank you all. I know people on here relate. My poor husband has had 20 years of my RD. He is great but I dread telling him there is another complication of this horrid disease. When I started with this I thought it was inflammation ok they will give me some drugs and that's it. But like you all I have found out how invidious this disease is. It seems every time we are dealing with one part, another one pops out, added up together it makes me furious lol. So hence my occasional rant. Thank you all and hope your all as good as you can be x

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