Hi All - Please I need help about the Dreaded Itch...
I was diagnosed 1 month ago with PBC (and AIH overlap), For about a year beforehand, the only real symptom I had was the itch which would come and go all over or on legs, palms, and scalp. For the past 2 months I have had no itching at all. I began taking Urso, Prednisone and Imuran 4 wks ago and excited there was still no itching. I thought it was over for good. until today and tonight...Ugh!!..I'm so upset It's back again...a stinging itch all over my body but predominantly on my arms, scalp, and palms.
Is this typical? Does the itching come and go like this? Any advice on how to cope would be appreciated!
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positivethoughts03
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I've not been diagnosed as yet, I have Nash but have also got the symptoms for aih and pbc. My Dr prescribed fexofenadine 180mg which has really helped. I do hope you get sorted soon. Please let me know how you get on. Take care Lynne
I have PBC and the itch comes and goes, I’m going through an itching spell at the moment but I’ve had a stressful week and I’ve noticed that as soon as I feel anxious/stressed it makes me itch, I don’t take anything for it (other than the urso for the PBC) as I know it always gets better over a few days, just have to try and minimise the amount of scratching I do.
Hi Rosemadder9 thanks for your reply! I am hoping my current itch is due to stress and not something else (like a side effect of the ORSO). I'm learning more and more about this disease and feel stress is a key component. If it is flaring up due to stress, then I really need to reevaluate my stress levels and coping skills. I hope you can reduce your stress and get some relief!! Thanks again!
Mine did at the start until about 14 months ago when it worsened with a vengeance and is driving me crazy day and daily. As you say arms and scalp bad but in my case feet legs and abdomen too to the extent I was breaking the skin scratching. I was on 1000mgs urso they then added in cholestagel 625 tablets x 2 daily, a few months later rimampacin 150 which was doubled to 300 mg after 2 months, finally last December I went onto naltrexone 50mgs as a last resort. With me I seem to get about 8 weeks and then my body becomes used to the medication and it returns with a vengeance. I am due to start plasmapheresis on 8 October in attempt to keep the itch at bay for another while. However the more you get this the less effective it is so it’s a short term solution. I have however been listed for transplant 10 months ago so hoping the call comes soon and I can say goodbye to the blasted itch for good. I quite literally “feel your pain” as it is by far the worst symptom ever.
Bsbmom thanks for your reply! I'm so sorry to hear about your relentless itching. I do hope you get some relief as well! I feel your pain...
I'm so new to all of this I'm trying to understand everything. Is the itch from the Orso or from the pbc and the leaking bile? And, do you know if the itching a sign of the condition getting worse or the medication not working or is it just simply some people get the itch and some don't??
Well I’m not an expert but I seem to recall the consultant telling me the itch was the toxins building up in the blood and not bthe I gotta clearly properly. In my case it seems to coincidence with when my blood results are bad. It seems to be some people do get the itch, i had PBC for a few years and was on the urso to slow down the progression of same and and it kept the itch under control didn’t bother me one bit, then it became progressively worse so I had to keep getting tablets added in, at first it was great but with each new addition I got a few weeks and then the itch returns with a vengeance...I’m not on naltrexone, it’s a last result tablet and doesn’t work for everyone, it was primarily designed for drug and alcohol addition as it stops the receptors in the brain getting the urge to drink or do drugs but science showed some PBC itchers found it usef7l. 8 went onto it in December and I had a blissful 3 months where the itch hardly bothered me but like everything else the effect wore off...however my consultant DID tel” me that it’s only rare case that it helps with PBC itch, i was one of the lucky ones, I think as they kept me on all the other itch medications this was just like a top up dose I need to deal with worse of 8t, but believe me there are still days I could claw my skin off, another thing I found helpful was tepid showers or a facecloth dipped in tepid water, not cold for some reason tepid works better..hope this helps xxx much love
The level of symptoms does not necessarily correlate to disease progression so don’t panic about bouts of itching implying disease progression.
I do find stress can cause symptom flares for me... but you also mention possibility of URSO causing itch- AND it can be a side effect....
Try to breathe and exhale — you’re taking in all the info and it can cause lots of stress— we’ve all been there.. reading everything about PBC and noticing every body ache etc etc,
I hope you can use a remedy mentioned above to dull the itch and hopefully do something relaxing and enjoyable tonight-tomorrow.
hugs to all!
Hi positivethoughts03,
I have PBC/AIH overlap and my itch was horrendous ,nothing controlled it until i was prescribed rifampicin. Antihistamines never worked and i was prescribed them all . In fairness tge doctors didnt have high hopes for them as its a different itch. There was another few different things they tried and all the creams. Rifampicin was and is the only one that keeps mine under control.
I hope you get relief soon as it is a mental torment.
Hi I was diagnosed in March & started on urso. I never itched, no symptoms at all. After about 4 weeks on it I started itching so the consultant let me have a break for 2 weeks to see if it was the urso & after a week or so it stopped. So for me it’s a side effect of the drug. I now have to take rifampicin along side it & this works for me. Anti histamines didn’t touch it. It’s horrible having to take all these medications I struggle with it! X
Hope this writing finds you less itchy. That all over itch, especially the scalp, for me is the worse. I thank the universe I haven't had it for a couple of years. As others have mentioned, stress/anxiety will set it off, especially the all over itch. Also, when the body is overloaded with toxins not being dealt with by our compromised systems, they are released in the form of histamines through the skin, hence the dreaded all over itch. That's why some folks find temporary relief with antihistamines. Yes, finding some coping skills helps. I have to practice yoga and breathing, meditate and stay calm. But during a itch spell, calmness goes straight out the window. I will drink an 8oz glass of room temperature water with a teaspoon baking soda and some lemon or lime juice. This helps neutralize the system. also, soak in a lukewarm baking soda bath. Use 1-2 cups of baking soda and stay in so 10-20 minutes.
the hardest part was to really look at what I might be eating to set this off.....All the food had to be examined. I wish you luck on finding what works for you. In the meantime, get outside and breathe....Be well
Thank you everyone for being so supportive! I truly appreciate this group of wonderful giving people because I'm not sure what I'd do without it...
I am going to try all the at-home remedies and also speak to my doctor tomorrow. I went to a PBC event at Mass General Hospital yesterday for a Ask the Experts with Dr. Dan Pratt from MGH. He was wonderful and did a fabulous job explaining where the medical world is currently with regard to the process of PBC awareness. I have to say though, it was quite overwhelming, informative, worrisome, and inspirational all at the same time. I actually went home and had a long crying spell that evening. I don't think I cried that hard in a long time and I hadn't really had a break down since learning about my PBC and AIH diagnosis a month ago. It actually felt good to get it all out!
I heard many stories yesterday from Type A women who are strong willed and have the "wonder woman" I can do it all attitude. I am the same way and do not like to ask for help... My whole life I have taken on everything and why would I need to ask for help when I can do it better or faster and more efficiently. Kind of silly now that I think about it lol.
I'd love to know how many women who have PBC are the same type A can do it all type personality. It sure seems stress is a key factor to the trigger of the PBC.
I think it's time for ME awareness and learning to take the stress out of my life not add to it!
Thanks again for all your responses and caring support! Wishing you all well and positive thoughts for the future. xoxo
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