Mayo Clinic Connect
Does anyone have info or treatments for itching? My scalp and lower back have a very itchy rash. Tried ointment shampoo, antihistamine and steroids…wont go away. I am Stage 4 liver cirrhosis. Dermatologist and PVP are stumped.
Liked by dntsass01
Yes I do have a gastroenterologist but he is not really paying much attention to my symptoms and to how I feel with this sickness he can’t even tell me what diet I should be on, tells me I don’t have pain in my rt upper quadrant and such I am not at the point for liver transplant for now since it’s compensated Nash for now I am not a last minute person and I am a nurse so it’s hard for me since I know somewhat what this is …. I am about 4 hours from a transplant centre and hopefully this research will help it’s Obeticholic acid double blinded study it’s for 2 years first year some will be on the med and some on a placebo they will collect data from blood work for a year then everyone in the study will take the med for the second year in our area they said I was the youngest on the trial …
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@caro72 I never had pain anywhere in my body when I had NASH cirrhosis. I did have declining platelet count, shaky hands, and a host of other symptoms that I never would have related to cirrhosis, but they were.
Do you know what your MELD score is?
Sorry I have no idea about meld score all I was told was that I have compensated liver cirrhosis probably due to type 2 diabetes my wt is 126 pounds the doc wants me to lose another 15 pounds …. but yes I have rt upper quadrant pain and as the day progresses it feels swollen and hard maybe it has no relation who knows
I am from canada and I was complaining of pain since my gallbladder was removed in 2016 bloodwork after blood work my liver enzymes were always high had a mri done finally got a liver biopsy this past January got my results February 12 a month and one day after my dear dad passed away so I will have monthly bloodwork that takes part for the research then another liver biopsy in a year and it’s through intercept pharmaceuticals in San Diego this med is used for another liver disease and trial for compensated cirrhosis due to non alcoholic steatohepatitis
@caro72 hi there. I also am from Canada – London Ontario. I had a liver transplant Nov 28 2018. Where are you from? Which hospital are you referred to?
I would be asking my doctor a lot of questions. Are you seeing a hepatologist? Has a transplant been mentioned or alternative medication been prescribed? Until you know your MELD score and have been referred to a specialist you will not be placed on a transplant wait list (if needed). If they are taking blood monthly ask what they are testing for. Just a few suggestions. Research and the good people on this site will help with any questions you have based on their experiences. We are all here to help.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, JK, alumni mentor, jeanne5009
Hi Miss itchy!
I have had Stage 4 cirrhosis for 3 years. Like
You, I got the itchies. I went to my regular PcP, 2 dermatologists and did a ton of research. They diiagnosed Ecxema which I believe is due to my poor auto immune system. I scrathed myself silly at night. Steroid creams helped a little but I used different products on different days. I tried everything Aveeno.shampoo, body wash and their anti itch cream worked pretty well. Then ther was Lidiocane RX ,Triamcunolone RX..best one, Doxi gaba cream, Elidel. And apple cider vi negar on my hair and in a tub.
None of that stuff cured it…it had to leave in its own sweet time…about 3 mo.The doc gave me hydoxcine to help me sleep.
So sorry you got this happy side effect. Always check with your doc before you do anything because we all are different.
PS Get to the best hepatologist you can find ASAP. It takes time to get appts.
Keep your PCP if he knows anything about cirrhosis. It is importanr to get one that knows about it and is willing to work with your hepatologist.
I have a great one who had a patient who had a transplant and is doing fine. I have an excellent hepatologist who is head of the transplant team in Tampa…45 min away. I also have been evaluated at Mayo in Jacksonville. Just cant tell you enough good things about them. I am too early but have developed a heart issue that could change that. So now I am trying to get a cardiologisr appt. At Mayo or Temple General. Thank God I have good insurace!,
@jeanne5009 the only thing that cured my itching was the actual transplant. It was a long 16 months but it's mostly gone now.
Liked by Rosemary, Volunteer Mentor, JK, alumni mentor, jeanne5009
@caro72 one thing I learned about cirrhosis is that there are many symptoms and I doubt anyone has all of them. If you have right upper quadrant pain, that probably is your liver. Has your doctor indicated it is or is not?
Your weight is not very high, I’m surprised your doctor wants you to lose weight. Do you know your BMI?
I was not pushed to lose weight even though I was overweight, but I did lose it because I felt it would make my recovery easier. I used MyFitnessPal to track my food and an activity tracker to help keep me motivated to exercise.
So bmi has is in the normal like I said my doc is not the greatest as per my opinion he told me it was impossible for me to have that pain and yea everyone is different can have different symptoms at least I have very good communication with my family doctor
Liked by Rosemary, Volunteer Mentor, JK, alumni mentor
@rosemarya Hi Rosemary. I am at home niw building up strength. My next ERCP is this Wed. Praying this time is the charm.
@gaylea1, This morning the sun is shining here in Kentucky, and the birds are chirping, and early flowers are beginning to bloom. I want to drop by and tell you that I am thinking of you, as you once again prepare for the ERCP. I never did like those things! But in all honesty, I really don't 'like' any procedures. I do hope and pray that the doctors will soon find a resolution for your situation.
I am happy to hear that your itching is gone!
Is your appetite returning? Are you able to eat without nausea? What are you doing to build up your strength?
Liked by Colleen Young, Connect Director, JK, alumni mentor
@jeanne5009, My friends have told me that I know more about the inside working of my body that anyone that they know. It sounds to me like you are soon to be in the same elite group. I do hope that you will get an appointment soon. However, I will add that sometimes if your need is an urgent one, your PCP can get you in to an appointment sooner that you can do it. Well – sometimes – Several years ago I was having breathing issues (Diagnosed as asthma possibly related to tapering off long term prednisone) After pulmonolgist finished his eval, my PCP was going to arrange an appointment with cardiologist and his office would call me later that afternoon. Instead, I had a frightening episode, and so my PCP had me go the the local hospital for overnight observation and he requested a cardiologist. Would you believe that the cardiologist did not even show up until next morning, and he never even got back with me for the results on a test that my PCP had already ordered. My husband and I had to call in Patient care representative to get a discharge order from my PCP. But I did get an appointment with a cardiologist for the following Monday!
With the changing season and weatehr coming, is there any change in the air quality and the red tide on the beaches?
Keep in touch. I send you a big hug.
Liked by JK, alumni mentor
@rosemarya Hello. It is cool here but the crocus are poking through.
I am starting to eat more solids without pain. Tastebuds are still way out of whack and certain food textures (like bread) are still compromised. I am moving April 1st so I've been pàcking boxes to keep busy.
I do have a question though. What are your thoughts on swimming in public/private pools, oceans and lakes? I'm concerned about bacteria in the water.
I think it is very dependent on the body of water. At my health club, where I exercise 3 or 4 times a week in the pool, they test the water hourly in the pool and in the hot tubs.
I think some lakes may not be a clean as others. We have a very rustic cabin on a lake in Maine. The water is rated to be pure enough to be used as drinking water!
I have no idea about the ocean. Again, I think it would depend on whether the area of the ocean is in a cove or somewhere that might not have the exchange of water as frequently, or might get runoff from the shore.
I am very careful though, being on immunosuppressants, and although I know they test the hot tubs I very rarely go in, just in case something may have fouled the water after the last testing. I would really like to because many of the people in the aerobics class do use it so it's sort of a social thing, but I forego it and use the sauna after my shower instead.
You really should check with your transplant department though, they know best I think.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director
Lol…now I get to study the heart! Abnormal EKG and the worst bloodwork Ive had in a year. Ammonia level is HH at 125 , creatine is up too. Just got these labs in my own hands for analysis…keeps me busy.
Im pusuing a cardio appt at Mayo, the former head of the cardio transplant group at Tampa General too. My hapatologist at TGH s working on that one too.
Meanwhile..my heart is fluttering…must be Spring!
Liked by Colleen Young, Connect Director
So I am from a small town near north bay and I was recently diagnosed so I haven’t met any other specialist then my gastroenterologist and when I ask questions he doesn’t really answer me so going to see my family doctor tmr and ask him all my questions and see if I could have maybe a second opinion
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, JK, alumni mentor
@caro72 I met quite a few people from the North Bay area here in London at the transplant clinic at University Hospital. I hope you get the answers you are looking for.
@contentandwell thank you so much for your help. I will definitely ask my transplant team as well.
I have been to London a few times for lithotripsy in 2015 kidney stones so will meet my dietitian from work to see what would be the best diet for me they put me on Keto then low fobmap what next
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