Diagnosis wait

[geraldine60]

Hello, wonder if anyone in Uk has difficulty with waiting and time spent trying to get diagnosed. I had abnormal LFTs for a couple months, fatigue,itching, unable to work. I am having a phone consult on Monday thankfully. As yet, no indepth tests.

My Human Resources at work are not familiar with this condition as many are not, so I will refer them to the PBC Foundation so they can read up. I read that only 20 per cent of those diagnosed manage to work again, which is very worrying. I also note that most people in the US seem to carry on working, but realise that we are very lucky in UK as a lot of us get paid sick leave for some months before we go on half pay, and also get phased returns to work. This is what I hope for. I hope to continue working for a while and if it all goes south, at least I have tried. I really miss the stimulation of work and feeling useful. would like to connect with anyone in London, as I know there are not that many of us. Thanks.

[butterflyEi]

Hello geraldine60

From your post I guess you are already a member of the PBC Foundation where there is a good deal of valuable information. In the member's section you can the Bear Facts magazine and when times are "normal" I am pretty certain there is a London based group which will be run by the local volunteer. At the moment due to the virus the PBC Foundation holds virtual connections such as the 4 p.m. (UK time) fun time, Thursdays at 2 p.m. there is a webinar where questions can be asked of the specialist who is giving up his time to help us. Last week was Professor Neuburger and you can catch up with past events by going to the PBC Foundation facebook page and scrolling through until you find the event. The next webinar on Thursday is with Professor Jones. On Tuesday Robert Mitchell-Thain runs a self help group where you may find some very useful hints on how to cope with PBC, there is one tomorrow but you need to register as these interactions which need to be private are held through click meetings, links can be found on the web site.

On a more personal note, it took about 10 years for me to eventually get my diagnosis in 2006. The first diagnosis (1996) was depression and then later it was assumed I drank to much, it was not until I needed a hysterectomy that the doctor was able to see an answer. In all that time though I was able (sometimes with difficulty) to keep working which was fortunate as before retirement I was self employed.

I guess you have your phone consult today, I hope this is with a specialist who if PBC has been diagnosed will start you on URSOdeoxycholic acid, this is the first line treatment, hopefully once you start treatment you will start to feel better. There is no mediction as yet for fatigue but there is a huge amount of annecdotal information that movement is medicine for PBC fatigue. A little walk can be stimulating and as you mention London I know you have some wonderful parks so hopefully one is not too far away from you. As you say working can be stimulating so being with friends and colleagues is also good for those of us with PBC. Isolation at home can bring other problems. As to the itch you may be offered cholestyramine (this is a powder which is difficult to take but mixed with something thicker than water such as yoghurt or kefir makes it easier to get down). There are further medications available for the itch but whilst waiting keep well hydrated, cream the skin regularly - there is a 2% dermacream which can confuse the skin but as a topical application it is only a temporary fix. My itch is mostly on my arms shoulders and back so I try not to wear anything like wool or fluffy jumpers, I find t-shirt type material softest and easiest to wear.

Have a pen and paper by the side of you to try and jot down some of what the doctor says to you, under the current COVID problems it is marvellous to have telephone consultations but the downside is that you cannot easily have another person in the room to listen to all that is said.

There is now a book written by Professor David Jones, OBC. I obtained my copy from Amazon via Kindle. PBC The Definitive Guide for Patients with Primary Biliary Cholangitis. I have found this very recent publication an invaluable asset. It is worth looking at the EASL guidelines, a simplified version is on the PBC app.

Oh dear! I have typed rather a lot, it is a lot to take in, hope all goes well for your telephone call today.

We are a great bunch on here, lots of personal experiences. Come back and let us know how you get on.

[Breed in reply to butterflyEi]

Hi butterflyEiI’m newly diagnosed and not yet on medication, I have a telephone appointment in February. I am also a member of PBC Foundation and they are a lifesaver and put your mind as ease.

You mentioned that it wasn’t until you had a hysterectomy that the doctor was able to see an answer, if you don’t mind me asking what do you mean.

I have had a funny sensation on my right side abdomen for years and put it down to stress as that was when I most experienced it. In March 2019 I had a hysterectomy and woke up to extreme pain in the whole of my right leg and was unable to walk unaided for 2 weeks. I wasn’t sure if it was muscle pain or sciatica. The pain then developed in my arms and I put it down to having to support myself due to my leg. The hospital put me on pregablin and my doctor continued to prescribe it until February 2020 when he decided to check if I had rheumatism and the results came back with possible PBC. I have blood test every year due to my medication for epilepsy and nothing showed up. In September more blood test were done and an ultrasound the results showed I have PBC. So I’m just curious did my hysterectomy trigger it all.

[butterflyEi in reply to Breed]

It would seem we all of us have a different trigger, it is assumed that there is a genetic factor but an environmental trigger is needed. In my family there are many auto immune conditions. I believe by the time I had my hysterectomy 2004 PBC was a bit more in the conscience of doctors who were keeping up with their continued professional development. The reason for my hysterectomy was that the medication to stop menstruation did not work (I think it was Cyclokapron) so I was bleeding 30 days out of 30. When I eventually was referred to the Well Woman Clinic I was very low in iron to the point of being transfused had it gone a couple of points lower. I have since changed my surgery and the doctor concerned has retired. For me the operation was the best thing that could have happened and luckily I have been well since that time. I am sorry it was not the same for you. I cannot think that the hysterectomy was a trigger for me as I firmly believe with hindsight that I had PBC for at least 10 years prior to diagnosis however it was a time when more specialist doctors are involved with treatment. It may be that the regular blood tests for your medication did not include the markers for PBC and only showed up with a check for the rheumatism.

I hope this helps answer you

[Breed in reply to butterflyEi]

Thank you for your reply as you say I was just not tested for any autoimmune disease. so maybe in my case the problems I’ve had after the hysterectomy have highlighted the need for more test. Take care and I’m pleased you’ve found a better doctor who possibly understand PBC.