Fed Up,!!!!!

[Bookworm7]

Hi all, I'm having a hell of a time at the moment, itching around 80% of the day and to top it all the dreaded menopause has reared it's ugly head, I'm well in to it but the flushes are back with a vengeance and every time I flush it makes my itch worse.

I've tried the HRT patches (full strength) but they didn't make any difference and to be honest I didn't want to use them long term.

I went back to my GP 2 weeks ago and she prescribed Dixarit 50mcg's 3 times a day they are Clonidine Hydrochloride, anyway to cut a long story short she said that if they are going to work that I would have some effect after a couple of days, well I have had no effect apart from feeling really miserable and wondering why I bother because no one seems to have a clue.

Yes you've all guessed it!,,, I'm feeling very sorry for myself, I feel like it's having an effect on my relationship with my partner who I must add is very understanding and puts up with my sleepless agitated nights and exhausted days really well but I just feel helpless it seems like it's one thing after another, I'm sat here crying now and can't seem to stop, I'm sorry I know we all have similar problems and usually I cope really well but having a massive blip.

Thank you all for being there and I hope I haven't depressed you too much, any suggestions will be gratefully received.

Debbie. Xx

[dollydaydreams]

Hi Debbie, i don't think it's all due to the menopause, I have gone back on my HRT and I am much better but I was reading the American liver site and it seems to be recognised over there as being connected to the liver, a lot have it and some are getting drenched with sweat especially during the night as though they have wet the bed.

I now I still wake up with a soaking wet head and shoulders etc, but at least i have cut the day flushes out. were the patches Evorel as they are the only ones that work for me, I did have something called estelle solo but they were not for me.

[spoul in reply to dollydaydreams]

evorel work for me too dollydaydreams

[Hidden]

Hello scratty.

I certainly really really sympathise with you as me too....I am an itcher. Started itching 24/7 in early 2010 and diagnosed with PBC Dec 2010. Since taking urso the itching has altered but still with me. I tend to find I just itch starting later at night until around 5 to 6a.m.

I was 45 when I first started itching, 46 at diagnosis and now I am 51 in a couple weeks time. I started going through the menopause early 2013 and so far I've not been so badly affected. In fact with my erratic cycle now, I just wish I'd never have a period again.

I know liver plays a part in hormone production but I somehow do not think it is due to the liver regarding itching. I think it is the fact you are getting through the hot flushes/sweats of menopause (I've only had a few in the last 2 yrs but can't say I look forward to another one) that is causing the itch to be felt that bit more then.

My husband and I had only been married 9 months when I started itching and when I was diagnosed I gave him the option of leaving as we had only been together 18 months at the time (we did originally write 12yrs prior but took all those years to actukally meet up for the first time). He said he was in it for the duration regardless and though he didn't take it as seriously in the early days he has come to accept it over time.

Like yourself I fidget and itch during the night often causing broken sleep. My husband rises for work at 6a.m. during the weekdays and at times I know it does cause him to feel tired. He tends to have cat naps at the weekend when we are in to catch up.

I'm not sure what Clonidine is but have read about it on this site notso long ago I think it was. (Just noticed, check out the 'Related Posts' to the right here and the word is there.)

One thing I adopted since being diagnosed with PBC was to try to figure out regards to itching and waht I was consuming during the waking hours. I found it took over 2yrs on urso for things to really settle down to how I am currently. I find I eat breakfast well of a morning with the urso and then currently I am peeling and cutting up an apple to have mid-moring with a drink (usually tea) and then I eat lunch. Mid-aft I tend to have a snack and then I have a coffee before the evening meal. I dont' eat anyting following the evening meal and the urso. I feel that the itching is due to having to eat but we can't live without that but I think that respite from following evening meal to breakfast for me is of some benefit where the itch is concerned.

I occasionally put a bit of white Tiger Balm on my shoulder if I feel a bit achy (like Sunday gone, had my grnadchild pulling my arm when we were out previous day), I find if I do this on going to bed when I am really tired (don't tend to retire until midnight) then I tend to manage to go to sleep and the coolness of the menthol more than likely in the product does somehow distract the rest of my body from the itch.

Sorry I cannot be of more help as I do wish that one day I might find some solution that we could all adopt to rid ourselves of feeling this damn itch.

[Jojowen]

Hi,

Really sorry you have to deal with all that. My theory is that having PBC makes it all the more difficult to deal with other medical challanges. It is like our bodies are saying:"what! I am already working hard to keep going, and now this as well!!". Every thing has become so much harder and a cold completely floors me now. But, as someone who has just had a whole month that has been good, all I can say is: Hold on! It'll get better! Six weeks ago I had zero energy and I got sick all the time, then I had a good month, I have been able to eat ok and take more exercise. Right now I have a cold and I am not so great but I know i'll get better again. Hang in there, keep making appointments and let doctors know you are not well and that you need help. Better days are around the corner, expect them!

Feel better!

J

[skippydownunder]

When I was really itchy at the beginning, I put this stuff called pine tarsal in a tepid bath and soaked in it. It relieved the itch but didn't stop it completely. It also does not smell great but when you are so itchy, who cares. My itch was worse when the bilirubin levels were high as well.

[mayday-Yeah in reply to skippydownunder]

Hi Skippy we have met before on the Healthunlocked website on there I was "Little mo ". How are you doin now re ur Bilirubin. Sadly as my consultants tell me the Urso had done all it was going to do for me I am now awaiting transplant. Been on the list for nearly 9 months so hopefully b called very soon. Are u still on the Urso and Methotrexate combo? Has ur bilirubin stayed down and in general how are you?

[Karaliz in reply to mayday-Yeah]

Hello mayday,

I have been wondering how littlemo is....you put up your lovely wedding photo and I knew you were struggling with rising LFTS and bilirubin....I am very sorry to hear you are so poorly....wishing you all the very best as you await your transplant...you're a brave lady.

Thoughts from Downunder

Karaliz

[teddybear7]

I had all that yucky stuff last year no meds it gets better. E 45 cream on prescription e 45 itch relief cream on bad day & learn to pace yourself lots of rest before you do something. It does go xxx

[cazer]

Had a rough year myself so do understand im usually quite a positive person and try to do what I can despite pbc but in2014i had an iron infusion as they said I was anaemic...then having been periodless for6/12 months I got the periods from hell!! Couldn't even get out of the house then periods stop again. ...surprise surprise im now anaemic again. ..now they want me to have another transfusion. .deja vu or what ! Now alsodeveloped skin problems. ...varicous exczema supposedly but not convinced.also need hysterectomy due to prolapse etc...... but can't have that due to portal hypertension so I feel like im stuck all was round

Sorrymoaning on someone else's comment. ..but it just struck me that you are feeling like me having a positivity blip....there is only so much we can cope with and remain upbeat. I have allowed myself a down patch and then a couple of months later my positive mind set returned..just trying to do anything I enjoy that I can physically cope with and blow the rest.so don't be too hard on yourself its a crappy disease and takes a lot of strenght to deal with .goodluck with it all.x

[badpiglet]

Hi Scratty,

Hot flushes are horrendous for me right now - so you're far from alone!

And the name 'hot flushes' doesn't even begin to describe how horrible they are and how they dominate your life in the worst way possible. When I'm whimpering & dripping in the bathroom in the middle of the night with no dignity left, the phrase hot flush does not apply.

I'm trying sage supplements at the moment (must be thujone free sage) - give it a few weeks and see how it goes. I don't have a huge amount of hope. I'm going to google Evorel though - hadn't heard of it before.

But how come with all the women medics and women research scientists there are in the world, more hasn't been done to alleviate the hot flush/night sweats nightmare?

I was thinking - can we have a campaign to change the name from hot flushes to something more accurately descriptive?!

[Bookworm7]

Thank you cazer and badpiglet, you are both right it is just a blip and yes hot flushes should be renamed, I could think of a few but would probably be taken off this site for swearing. Love to you all that replied and helped me not feel so alone. Xxxx

[mayday-Yeah]

Hi Scratty sorry to hear your havin such a horrendous time. Have u tried Questran for the itch I have had the0tiebreak itch 24/7 for last 14yrs diagnosed with PBC in 2002 havin suffered withsevere itch joint pain and fatigue for a yr at that stage. The Urso helped my Lfts a bit but did nothing for the itch. So I was put on Questran had some abdomen cramping and diarrhoea at start but not sure if this was due to the Urso r the Questran but Dr changed me on to Questran Light which is easier to take though not pleasant. It's the only thing that has worked for the itch over the yrs. Still have some itch but it0hugs tolerable. Night time still bit of a bother and have often to resort to takin 0if Questran during night too just to get Some sleep! Things have learned over yrs that make itch worse for me anyway are foods too high in sugar,fat r spices and too much caffeine. Don't deprive myself of all treats but do try to stick to a healthy balanced diet and drink at least one to two litres of water a day to flush out the toxins. Hope you feel better soon you are not alone.