Not asking for medical advice moderators simply others experiences.....
Hey one and all! Hope that you are all good and fighting the battle and winning.
Recently my legs have been really itchy below the knees as they were pre transplant. I mentioned t to transplant coordinators and they advised me to take an anti-hystemine. Has anyone experienced the same post transplant?
Hopefully all your bloods are good?
I have had on and off but mine was dry skin lol maybe moisturise them see if it helps if not the anti histamines should help
Hi Pooh. No more itching for me post transplant but wife has had this problem for years and nothing to do with her liver. The itching is on the lower legs, particularly round ankle height. Being warm in bed makes it worse. Her GP says it could be a heat allergy. She rubs Aqueous cream into her lower legs and has a cream from the doctor that she rubs into the trouble spots after first using the aqueous. She finds that exposure to sunlight clears it up a lot in the summer. Don't know how you would go on with that though having to wear a factor 50. Every so often she takes an antihistamine for sinus trouble and when she does she has noticed that the itching doesn't happen. She only takes antihistamines as a last resort for her sinuses when she is desperate for a nights sleep because she is very sensitive to medications. Although her sinus problem clears up for about 18 hours the tablets make her feel washed out for 2-3 days (even the non drowsy type!). Hope this info is of some use. Alf
Thanks Alf, as ever your advice and experience it is genuinely appreciated. Bloods are generally pristine with essentially normal liver function. My Creatine goes up and down even though i keep my self hydrated? I was 129 at my GP two weeks ago but 98 at clinic last week? No-one seems that concerned though! I'm in clinic every 3 months at last but it looks like that I will always be taking be on or around 7mg of Advagraf as my bloods have finally "troughed" at around 5.2 . My GFR is still hovering around 60 but, again, no-one seems concerned? I feel great though and am starting a degree in September which I am looking forward to! I took my pension a 4 years early so am able to sit back and relax a little more now. Anyway fella how are you doing? All good i do hope?
Hey. It all sound good for you. I think that those that are fit and well without transplant are going to get levels of this and that going up and down but of course we take far more notice having gone through everything we have and we get tested fairly regularly which brings it to our notice. If nobody is showing any concern about your results then all is well! Great news that you are back into everyday life and doing a degree course!! Power to your elbow!! Well done!! My Adoport (your Avagraf) Im on 3mg a day but I also take 100mg Azathioprine. As far as my liver is concerned everything is going really well. I last saw the transplant clinic in December and I see them again in 2 weeks time. They arranged an interim visit with my original liver specialist for bloods in march. My only problem now (the fly in the ointment!) is back pain from my spinal breaks and being diagnosed with Osteopenia. I've got a Tens machine that was delivered today and charging up ready for my first try. Also seeing GP in a few days time to get referred back to bone clinic to see if anything can be done and also hoping for some physio. I'm grateful to be here to moan about it though. Far better than the grim alternative! Really, really pleased for you. Don't forget to check in from time to time and let us know how you're going on. All good wishes for your new life and venture. Alf
Thanks Alf, your supportive messages are always appreciated. Have a great weekend.
My hubby had bad itching post transplant and pre transplant. His back, I was forever putting cream on it. He was in hospital 2 weeks ago as his liver was rejecting, he’s back on all the meds he had when he first got his transplant, and hey ho, hasn’t itched since. Not much help but fact!
Hi I'm a month post transplant and I have just started to experience something similar, pre transplant the front of my thighs were itchy, burny and numb at the same time, odd I know... how can they be itchy and burny while being numb lol. This went immediately after transplant, but seems to be creeping back... I'm worried and will mention it at my next OP appt. I'll let you know what the dr says
I had this Pre transplant and GP prescribed me steroid cream called Betamethasone. I had tried all the creams but this worked.
Hi Pooh. I get very hot legs about an hour after I have gone to bed. It wakes me 2/3 times in the night.
I am post transplant as well and get exactly the same itchy legs, my liver specialist is now going to refer me to a skin specialist, as so far all creams / ointments not working.
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