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[Silvers]

Afternoon All

Well after having the run around from the medical profession I have finally come to the end of my tether and told my GP yesterday and then fired off a scud missile of an email to my useless gastroenterologist today!! He actually replied within 20 mintues of me sending email........ probably cause I used the suicide word at the end of my email!!!!!!!!

Dear S

I have forwarded your email and most recent blood results to Liver Specilaist in Edinburgh. I will let you know as soon as i hear from them.

Kind regards

XXXXXXXXXXXXXXXX

Physician & Gastroenterologist

Training Programme Director, Gastroenterology, NOS Deanery

Dear XXXXXXXXXXXXX

I spoke with GP at xxxxxxxxxx Surgery after our last meeting in December and asked to be referred to a PBC specialist in Edinburgh but he told me that he didn't know anyone. I also spoke to Dr xxxxxxxx xxxxxx (GP whom I see the most) yesterday re referring me to a PBC specialist in Edinburgh but she told me that she couldn't do that and only yourself (specialist) could do that. Dr xxxxxx informed me that she would have to seek permission from the Health Board to do this!!

I am totally at a loss as the itching is driving me insane and feel I am no further forward than when the itching started in Oct 2011. I have started to get amalgam fillings removed and detoxing and eating organic and although I am getting a number of days without any itching I am still suffering with itching before, during and after my period.

I remember you telling me that the Edinburgh Transplant Team come up to Aberdeen every few months and was wondering if you could arrange an appointment for me to speak with them in Aberdeen. I did send my medical information via the PBC charity to a couple of specialists in England and they agreed that a liver biopsy would add nothing to any findings and the fact that I am no where near getting a liver transplant!!!! What they did mention was cleaning the blood a tad like kidney dialysis to alleviate the itch.

I have also got a private gynaecological appointment on Friday 5th July 2013 to see if she can add any light as to why I suffer with the itching before, during and after period. As I have stated in past appointments with yourself and registrar, my periods have changed around the time the itching started in Oct 2011. It may be that I am heading towards menopause...........

I also asked yourself at my last appointment regarding UVB light treatment but yourself and the registrar just looked at one another and said you hadn't heard of it. I know that they use this form of therapy in Edinburgh. As I told my GP yesterday I feel that I have had to do so much research etc regarding PBC as well as coping with the illness, underactive thyroid, working, caring for dad and trying to spend quality time with my partner and family, especially my gorgeous granddaughter - I feel that I have been let down by the medical profession!!!!! My GP once again shook her head and said you know more about your illness than I do!!!!

I have had my bloods carried out recently and I am pleasantly surprised that my liver function tests, even though still high, are remaining stable, my TSH is coming down and my ferritin level is over 76. Dr xxxxxx did mention that my copper level is high but as this is the first time I have had it done I am not sure if it has been high for a while.

As per email from Dr xxxxxx below, she has prescribed Dermacool which I will pick up from chemist today and also going to refer me for UVB light treatment. Please, please can I ask if you can arrange for me to speak with someone from the Edinburgh Transplant Team the next time they are up in Aberdeen as they may know of something that hasn't been mentioned or can inform me regarding cleaning the blood treatment.

You mentioned in your email that rifampicin and naltrexone are the last resort but I have already tried these. I am not sure why you are saying that they are the last resort as I have mentioned about treatment for cleaning the blood and you also mentioned at last appointment immune suppression drugs and / or steriods. I would rather try medication that gave me a quality of life rather than a quantity i.e. I would rather have 10 good years with medications that prevent the itch rather than having 20 or 30 rubbish years with the itch!!!!!!! As one GP kindly informed me that he has heard of the itching driving people to the point of suicide!!!

Kind Regards

S

Dear S

I was at a dermatology meeting today and they were talking about the various treatments for itch. 2 treatments were discussed and I wondered if they would help you.

The first is a cream called Dermacool, it contains menthol and helps itch caused by skin and systemic disease. You use it as an emollient( moisturiser). I could prescribe this for you if you would like to try?

The second treatment is treating the itch with a course of UVB light treatment. This can be done in Aberdeen at the dermatology department. It is very good for treating itch caused by kidney disease but also other systemic conditions. Would you like me to refer you to see a dermatologist and ask about this treatment? A Dr John Hewitt works at Albyn if you would like a private referral?

Let me know if what you think.

Kind Regards

xxxxxxxx xxxxxx (email from my GP)

[Hidden]

Hello Silvers.

Yes I think majority of us can vouch for what you are saying with regards to the dratted itch. I am a night time suffer of that most of the time myself even though my bloods are pretty much doing well on the PBC scale (apparently within what considered normal LFTs for PBC).

I have at odd points myself at night felt like time to give up and then thought I don't want to spend the rest of my life feeling (I don't like saying knowing) I'll be constantly plagued by the itch and how it might be as I continue to get older.

From experience with GPs prior to this new one I recently registered with, when you mention the itch they simply switch off. NONE even offered me anything and I don't think my last one could give a toss. Times I went to see him during last yr and wished for 24hrs I could give him the itch, then he'd certainly know! This new woman GP I registered with and who I saw for first time last wk., she seems a bit too over-zealous for my liking. From what I could gather she was saying, she'd NOT prescribe anything if at any time I felt the itch needed to be attempted to be alleviated with meds, she went on about seeing the hospital consultant again. I told her I know how they work it with the itch, you are started on Questran, then progress 'up the scale'.

From what I have read on this site about that blood cleansing procedure, someone did recently post saying that it didn't actually work but thinking about it, expect it might temporarily but then once your body starts back up again the problem will resurface again I'm certain.

Up until last yr (I was diagnosed with PBC in 2010, that is when the itch started for me), I had odd days where I was ready to give up after a bad night with the itch and if it was a Sunday I'd stay in bed and not eat that day or take the urso. I then found that for several days afterwards, the itch had vanished. Figure thinking about it as I probably had cleared my system and bile hadn't been released due to lack of eating for a day so there was nothing there to deal with and cause the itch but that's not the answer as we know, unless we would like to starve to death instead.

The menthol moisturiser, now that sounds like it could well alleviate the itch although as we know not eradicate it. Figures again as I occasionally get that right shoulder pain, especially if I've had a day of lifting (thinking I've not had it for awhile, and I've been lifting, maybe because my bloods are much improved these days?), certain evenings my husband would use one of those muscle rubs, the one that did contain some menthol. I found the coolness of it before I went to sleep did seem to block the itch but I guess that is because you are then feeling it in that area and those nights I did tend to sleep that much better.

I found the last part of the email reply you posted a bit odd as if UVB light treatment is used in kidney disease for one, wonder why it's not extended automatically to patients with itching in PBC. But at the end of the day as we all know, it is all due to the fact that we are all bargained for money unfortunately.

Please keep us all updated.

[sydney]

Oh dear, same old story, these so called consultants don't know enough about PBC and therefore we suffer, it's a nightmare, the itch is really the worse thing ever and its driving me crazy, can't cope much longer. Would be good if the UVB works, or the blood cleansing, I would try anything right now. You mentioned you had been on rifampicin, this is the next step for me, however I don't want to take it at all, it sound horrific, how was it for you? Please keep us updated on your treatments, seems we have to help each other on here as the specialist don't have a clue about our condition, or how to help us, hope you get some relief x

[Silvers]

Thanks for replies. I am off work again as the itch is really disrupting my life........ The only people who fully understand how much it affects me is you guys who have it too.......

I have sent email to boss to explain that I have a number of appointment lined up to see if I can get any treatment.

I have to knock myself out with sleeping meds now to be able to sleep so that I can function the next day..... I feel like the living dead when taking sleeping tablets.

Have also asked boss if I can work from home. If the answer is no then I have said that I would have to resign and put my health first. Not something I want to do as apart from the itch and the sleeping tablets making me tired I am fine otherwise.

I feel as if this dammed disease, especially the itching, is robbing me of my life and I feel that if something is not done soon then I will lose partner, family, friends, work..........

I don't want sympathy from anyone as I usually just get on with everything that is thrown at me but a little understanding does go a long way!!

I am nearly at the end of the tether that I am thinking of seeing a healer from USA who is coming to Europe. He is called Curry Blake if I remember correctly. I am not sure I believe but then again I have been told I don't have to!!!!

Sx

[Silvers]

Just got back reply from specialist :-

Dear S

Liver Specialist in Edinburgh have tried plasmapharesis (blood cleaning) in a small number of patients with benefits. I am not sure if it is available in Aberdeen. i will enquire about it and will let you know.

I am away from the 28th june until 16th July. If i hear about any treatment options available in Aberdeen before i leave i will make arrangements.

Kind regards

X Xxxxxx

Physician & Gastroenterologist

I am a tad surprised that my liver specialist doesn't know if plasmapharesis is available in Aberdeen.

Also got reply from GP and the above specialist has asked her to prescribe Sertraline. Has any tried this and has it worked for the itch?

Many Thanks

Sx

[Silvers]

Just had a phone message left from liver specialist and he has arranged an urgent appointment at the Blood Transfusion Service in Aberdeen for tomorrow morning at 09:30. I will get my veins assessed and discuss blood cleansing and then he said that I may get the treatment in the afternoon. Not sure if I should eat or not in the morning!! Sx

[Silvers]

Afternoon

I got my assessment this morning and had a chat with the doctor and nurse. Unfortunately due to staff shortage I was not able to get treatment this afternoon but I am booked in for tomorrow morning 09:30 hrs. I am not looking forward to treatment but thankfully my partner is going to be with me!! I am hoping and praying this works and keeping everything crossed!! Sx

[Silvers]

Well I had my Plasmapheresis treatment yesterday where the blood is cleansed and returned to the body and the machine takes out your plasma and is replace by substitute plasma.

So I was a tad concerned when I was told that I would have a needle in each arm and that I couldn't move my arms at all or the needles may burst my veins............ not exactly what I wanted to hear when the reason I am doing this is due to itching. Thankfully I had my lovely partner to rub my back when the itch started.

Donna, nurse, was lovely and as they only had my in the clinic it is a very one to one treatment. The treatment took approx. 1hr 30 mins and the only small issue I had was the one needle was in at an angle and caused a wee bit of niggling pain. The only place that I got itchy was my back but my partner was there to alleviate it.

So I was really chuffed that I got through it but a tad shocked when they asked me to come back on Monday and maybe Wednesday and maybe Friday next week eeeck!!

As I said I felt fine and we decided to go to a furniture shop that has a wee coffee shop in it. So I was sitting down while partner went to get some soft drinks and food. When he arrived back at the table all I remember is feeling very hot and then I asked him to help me to toilet but on standing up and walking a few steps I thought I was going to pass out so had to sit down again. Started to be sick so partner grabbed tissues yuk yuk yuk. Managed to pull myself together, get to toilet and cleaned the worst off. Couldn't wait to get home, 30 mile drive, then jumped in shower, sick again and then off to bed and felt okish later and managed to eat supper.

My partner did phone hospital to see if this was a normal reaction and they said no it wasn't but it could have been that even though I was ok during the process that the stress took its toll. This morning I did feel very, very itchy but thankfully it isn't nearly so bad now.

The doctor did say that it might take a few treatments for it to work and I think I am their first patient to try this treatment for the PBC itch in Aberdeen so they seem keen to see how it goes. The doctor even phoned me this morning to see how I was doing.

So back to hospital on Monday for second treatment and both my partner, son and other family members either away working or on holiday. The nurse did say that people do get the treatment and drive afterwards ............. I am going to take a sick bag with me just in case!

I am hoping and praying that this treatment works!! Sx

[Silvers]

I have had two plasmapheresis treatments - one on the 27th June it went ok but 30 mins after my body went hot and I thought I was going to pass out and was sick - in a coffee shop!!!! I got home, showered, sick again and went to bed and slept for a few hours and was fine. My second appointment was 11th July and all was ok until my vein blew but thankfully they managed to find another vein and all ok and felt fine after treatment. They did give me calcium before treatment as they thought that the anticoagulant might have made me sick the first time. I think it could have been down to nerves / stress also. Just before my second treatment I was noticing that I hardly had any itch in the afternoon and thankfully it keeps improving. I am back at work after being off for three weeks and this office has no air con and is like a green house and itching being kept to a minimum. I also have my periods and by now I would be climbing the wall.

I am being admitted to hospital next week and getting a line put in my neck under a local anesthetic so that I can get the treatment Mon / Wed / Fri. The reason they are admitting me is that they are not sure if the veins in my left arm will hold up to treatment every other day. It is nice to wake up in the morning and not to be flooded with the itching all over my body when I started to move.

I hope this post has been informative. I have struggled with the itching for two years and glad that I am getting some respite. Sx

[Silvers in reply to Silvers]

Latest update my treatment this week was cancelled and now due to go in next week. Just had a lovely phone call from specialist - Aberdeen specialist just called and I will get neck line in on Tuesday and first treatment Wed and then Fri but if there is an emergency it will all be cancelled again!!! He said that this is the first time in Aberdeen that they have done this treatment and he makes it sound as if Edinburgh hasn't done it much either. He says it is all trial and error and other people are suffering like me and if it helps then they will have to look into it further. So is this not a positive for me and other?!

He also kindly pointed out that due to arranging my treatment he has spent more time doing clerical work than being a consultant........... not looking good ........... he sounded a tad peed off if I am honest.

If I get him telling me this again when I am in ward I am going to tell him that I am entitled to medical treatment just like anyone else as I pay my NHS stamp and that pays his wages!!!!

It is bad enough living like this for the past two years without all the hassle......

Sx

[Silvers]

Oops forgot to mention that I have the skin specialist this Friday to discuss UVB light therapy. I really don't think a lot of specialists know about this for PBC but I know that they use this therapy in Edinburgh.... x