Just a little warning if you change GP Surgeries! I moved house (all of 4.9 miles) on the 20th of September, as of yesterday, (28/11/13)

[ho11y]

they still had not received all my notes. What has complicated matters is, my Consultant placed me on steroids, back in May, then Mercaptopurine to get me off the steroids, which I finished taking on the 7th of November (I have PBC/AIH) Apart from the new GP's having never treated anybody with this, I have had two appointments cancelled by my consultant because she is off sick and not due back until the 17th of January. It also transpires that the other Gastroenterologist is now off sick as well, which leaves one Gastroenterologist to cover the whole of The Highlands and Islands, which is a massive area. Which means I am now stuck on Mercaptopurine (which is labelled as toxic when prescribed!) because nobody knows how to get me off them. Not an ideal situation !!

[0137kaz45]

Hi, how awful for you, can u not get in touch with your old GP and maybe he/she could help , just a thought dont know if its possible...... good luck

[Hidden]

Hello ho11y.

Sorry for the dilemma. I changed GP surgeries myself after PBC diagnose twice. I registered with other local GP surgeries (I'm in Lancashire) and was informed at the time that it might take months for the records to reach the new surgery but meanwhile I'd to fill our the form and give them info about any health problems and meds. Obviously for myself it all went smoothly.

I don't know what the med you mentioned is but I do know a bit about steroids so will be of no use there but I could perhaps add a few suggestions.

Now did you at all get any print-out of blood work or any copies of letters from the gastro at all? I have been getting my print-outs since I was diagnosed and have them all relating to LFTs and full blood count since my first abnormal LFT in 2010. I also requested letters to the GP from the hospital consultant I saw 2010 and 2011 when I went in to see the GP at a later date as it can be different to the simple term one the hospital consultant sends the patient. If you have any of these which I somehow think you may not, that would have been an option with a new GP surgery as the new one could check those.

Have you at all requested repeat bloods from the new GP so that he/she can see you do have some condition as I presume you have have abnormal LFTs?

The gastro you said you saw earlier in the year who is now on sick, has he/she got a secretary you could contact with regards to this matter? The secretary would have notes on yourself with copies of letters sent out to your old GP and could advise you how to approach the new GP.

You could also contact your old GP surgery and explain and perhaps there is some explanation there.

Given your location, I'm not sure if like most patients, we are on the computer system so other doctors can under the NHS check out our records. I know when I have been to ENT at a diff NHS hospital previous to the one I was discharged from recently the consultant had my bloods on screen as he was checking to see I'd had a blood clotting test which the GP had done prior to the appt.

Please pursue with the new GP your fears and what I'd do would be to take some info from PBC Foundation or Liver North with you on PBC/AIH into surgery and see if your new GP can start to understand more.

Good Luck.

[ho11y in reply to Hidden]

Hi Peridot, Before I moved I asked my old surgery if they would keep me there until I had finished this course of medication, they refused and as I said, I moved less than 5 miles! So on one hand I understand that I am now out of the catchment area (just) on the other hand, I am a bit angry as this medication should have only lasted for a few weeks. I actually feel sorry for the new GP's, as I have just landed myself on them! From what I can tell, their records on the computer only go up to 2010. However, I do take all the letters with me that I have from the consultant, which helps. The mercaptopurine I am on has serious side effects, one of the worst being, it can cause leukemia, so at the moment my blood results are fine, but I have to get blood taken every two weeks. I have been in constant touch with my consultants secretaries, one is very helpful, the other one, not so much, but they have a lot on their plates as well. What I did do was 'phone the people carrying out the DNA study at Cambridge University, what a godsend these people are, they put my mind at rest regarding some of the side effects I am having. Although, my GP deals with mercaptopurine, they have not come across it being used in the context of my diagnosis. Thanks for your reply, and I will keep you posted !

[Val02]

Have you tried asking your GP to contact gastro to get some guidance?

I think that can often work.

Take Care

[ho11y in reply to Val02]

Hi Val02, A letter was written to them yesterday by my GP, to the one that's left, the other two being off sick !

[Julez1961]

I travel a 45 minute drive on the freeway to visit the Liver Transplant Team Clinic and hardly see my GP as I am to hard for him! Way out of his league when it comes to the things he should be looking for or testing for.

[ho11y in reply to Julez1961]

Hi Julez1961. Unfortunately I live four and a half hours away from the hospital, and I have to wait on an appointment before I can see a specialist, but my new GP's are doing their best, they are monitoring my blood every two weeks, the problem is getting me off the medication!

[Julez1961 in reply to ho11y]

Sorry to here this ho11y it can all be long and tedious when you are ill and don't have the strength to bother. I hope the GP's are helping with getting you off the medication.

Keep thinking positive thoughts as this is sometimes the only thing that keeps me going!

[witchiegirl]

First, I am sorry you find yourself in this position. It must be frustrating and worrying. I wanted to say a few things though. The serious risks with Merc, I understand, are over the long-term, so years rather than months. It's unlikely you will find yourself in trouble with s/e like leukaemia if you are taking it for a few weeks longer. And anyway, you are having bloods checked regularly, so any problems would show up promptly. And can be dealt with by your GP. It is likely too that the GPs are the prescribers in this case (though probably your previous ones rather than the new ones which may muddy things a bit), so they are qualified to change a medication if necessary. Obvs they prefer taking guidance from specialists, esp in rare cases like this, but they do have ultimate responsibility if you see what I mean. My own GP explained this to me recently regarding medication that was 'advised' by GI team but prescribed by local GP.

Also, my own impression was that USUALLY with this condition the immunosuppressants such as Merc (I have a similar overlap diagnosis, am on Mycophenolate because Merc made me very ill in the short term) are given long-term once steroids are stopped/reduced to a low level. Certainly that seems to be the plan for me - I am at 10 mgs of Pred now, aiming for 5 by Feb (very slow reduction!) and expect to be on immunosup med for a couple of years at least. My impression is that the disease is worse than the potential and very small risks associated with meds, so I am accepting of this. Your case of course is individual and you may have a different plan.

A final point, if you really really want off Merc ASAP, esp if you are sure this was the plan, nobody can stop you from doing that. Obviously you'd have to get regular bloods done to check no relapse but I don't think you need a gradual withdrawal as with steroids and other things. I would of course discuss this with GPs first and get guidance from them.

Just my tuppence worth.

[ho11y in reply to witchiegirl]

Thanks for taking the time to reply Witchiegirl. My GP's are writing the prescriptions for the mercaptopurine, but have never prescribed it for my condition, if you see what I mean ! I visited my GP on Thursday because since I came off the steroids, I have been having side effects, the worst being losing my balance, because of the dizzy spells, I explained all this to the doctor, who's only response was to write a letter to the consultant, no explanation for any of the side effects, I just hope it is the tablets and not something else. I am aware leukemia is a very rare side effect, I just do'nt want the ones I am having to get any worse ! In my case I was perfectly well before I started taking any medication - I did not have one symptom, if my blood levels were raised, the doctors had to tell me, I had no idea. When I raised concerns about the mercaptopurine before I started taking it with my consultant, she assured me I would just be on it until I was completely off the steroids, which I am now. I will carry on taking them until told otherwise, however having gone through this nightmare, I will think twice before going on another course of treatment, if the support's not there x

[alpha3]

Sorry to hear about your medication problems holly, it seems ridiculous that you only have one consultant to cover such a huge area. And to be left on a medication which you are unable to come off without advice is beyond belief. I would probably think twice about starting another course of medication too if I'd gone through that nightmare. It does seem that very little support is available with this disease and notes aren't passed from one specialist to another. Hope you soon get sorted

[ho11y in reply to alpha3]

Thanks so much for your reply alpha3. I must admit, it does'nt help where I live which is the very far north of Scotland (Thurso). To be honest, I would not have moved here without having a consultant here, which I did, but he left and has not been replaced, hence the 9 hour round trip to the closest gastroenterologist! And I am certainly not blaming them for being off sick, they can't help that. It just does'nt help my situation !

[ho11y in reply to ho11y]

Just a quick update - nearly a month on, no progress. I have tried everywhere, from GP's to different hospitals to NHS 24, just to speak to someone with knowledge of my illness - all to no avail. Then on Thursday get two letters - one an appointment to see a consultant, but not mine and not until the 30th of January 2014. The second letter, I have to see my GP tomorrow to "discuss" my blood tests. As you will gather, I am not happy - at all. I feel as if I have been abandoned by the NHS. Depending on the outcome of the results tomorrow, will depend on whether or not an official complaint is raised.