Just having a moan

Just been to see the Rheumatologist again as my Gastro Consultant referred me back there. AAAAGH. I was diagnosed with PBC in 2010 and like most people on here seem to have to fight for every piece of information, I even had a second opinion. The Rheumatologist has referred me to Physio (yet again, didn't work last time as I could not do the things he wanted me to do!!!) He is also referring me to Occupational Therapy but has not really explained why. I feel let doen yet again. Like everyone else my body feels it does not belong to me anymore, some days I can't physically get out of bed and some days I can't walk. My Gastro has not given me much support and has not mentioned my blood tests even though I know they are slightly elevated, Billirubin and Alkaline Phospahte. I am on Vit D / Calcium because of Vit D deficiency and now have been diagnosed with thinning bones, I am also have high Cholesterol all down to the PBC. I have not been put on any other meds i.e. URSO, seem to be the only one on this site who hasn't. I found out today that my Gastro has a sister with PBC, so you would think he would understand wouldn,t you? Sorry to ramble on, just very frustrated and tired.

11 Replies

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  • I feel your frustration. It seems as I have been give a seat at that table for life. You would hope your doctor would be a place of understand. I don't know how I would manage without you all to moan with. Can't go to family anymore - if I see one more "eye roll" I think their face may run into my fist.

    Send you BIG hugs.

  • Sorry to hear your consultation hasn't gone too well today!

    Pain is the main thing that affects me also. It was as a result of test carried out by my rheumatologist that I was referred to a gastroenterologist for confirmation that I had PBC.

    The G explained he would deal with my liver issues and prescribed me URSO but the pain relief was best controlled by the R but recommended paracetamol. The R said that I have osteoparosis and osteoarthritis and said my GP can manage my pain relief he too suggested I take paracetamol for the pain, he also referred me to a physio.

    I don't know if you agree but paracetamol are not very good on their own for relieving our pain. My GP tried me on cocodamol and ibruprofen but they did not help much either. It was then suggested I go on regular paracetamol 8 a day (instead of 2 when pain intense) topped up with 1 or 2 Tramadol when pain intolerable. The Tramadol was giving me a strange head. So now on the 8 paracetamol with top up of ibuprofen inbetween doses when pain intolerable. It does help to take the edge of it a bit.

    I went to the physio twice a week for an hour for 16 weeks. I too struggled and found that some of the exercises he gave me to do were impossible for me but we persevered and found that I could manage 20-50 minutes (depending on how i felt on the day) of swimming on a monday and 30-50 minutes in the gym on a wed, 30 minutes walking on the treadmill and if I could manage it 20 minutes on the rower. I would be shattered the following day but can honestly say by the end of the 16 weeks I did feel a lot better and it did make me feel more supple. The physio explained that by exercising it would strengthening the muscles around the bones, improve my posture, and would therefore help to relieve some of the joint pains I was experiencing. I won't kid you and pretend I could do it every time I went, but I did my very best for as long as I could. The physio I went to was part of a team dealing primarily with people with disabilities and not just rehabilitation, so took into account individual strengths and weaknesses.

    I have not seen an occupational therapist but maybe you have been referred to help you manage with everyday things which you may be are having difficulty with ie opening jars, dressing, walking etc. They may be able to give you appliances to help.

    I cannot understand why your not on URSO either I don't think I have come across anyone else on this site who is not on URSO. However there has been mention of consultants working differently across the country so maybe thats the case in your area.

    Don't give up hope as its so easy to slip into depression. Keep your chin up, tomorrows another day!

    Best wishes

  • Thank you all so much for your very kind support and reassuring words, they are most appreciated. I am not usually one to moan and tend to just plough through, it is so nice to be able to "sound off" without feeling guilty.

    Love to you all

  • Hi PiPi never worry sometimes just good to get things off your chest. I don't know what problems you have with your joints but can sympathise with you. When I was first diagnosed with pbc in 2002 I was having a lot of joint pain mainly in my wrists and elbows but I feel the work I was doing at the time i.e. in a care of the elderly ward made ti worse. I was started on urso initially because of the itch but have recently discovered through friends with pbc that not everyone is prescribed it, mainly just those with bad itch or quite elevated lft's. I have always been on the urso continuously apart from a few months at the start of my last pregnancy. My joint pains are only mild now thankfully and to be honest I do not know if that is down to being on the urso or that I don't do such physical work now. I do notice however on days when I have done a lot of walking or lifting heavy things( particularily my 5 yr old son who weighs 2.5 stone!), they can be painful and I am still on urso the highest dose. The severe fatigue can sometimes make me feel like not getting out of bed but having to look after two kids when their dad is woking means I have to get up and get on with it. I,m sure your dr's will tell you the best things for all joint probs is to keep the joints moving as much as possible and as your pain allows. Have you tried heat and cold packs to the sorest areas I used this when pregnant as I had a lot of back and hip pain throughout the pregnancy (even when I was put back on the urso in my second trimester) and it worked well. Hope that info helps and that things improve for you soon.

  • Hi, PiPi.

    Sometimes it is good to sound off, of course.

    Once we have sounded off, the next thing to consider is taking control of your situation and trying to better it.

    In these circumstances, a call direct to the Foundation will often be helpful. I hope we can help you and look forward to the opportunity to do so.

    Yours,

    Robert.

  • Hi PiPi

    I sympathise with what you are saying.

    I hope you find a form of exercise which brings some enjoyment and that can be done at times that suit your own energy levels.

    Maybe, because your LFTs are only slighted elevated, the consultant is not prescribing Urso. I was diagnosed with PBC last year but have not been given URSO, which I presumed was due to my LFT's being just within the maximum values.

    I mentioned the drug at my consultation and the doctor just muttered something about "drug companies" and passed it over. I have a follow up appt. again in August but will definitely raise the question again and will probably get the same evasive response. I think there is a lot the medics are unsure of.

  • NearlyThere-

    Could it be that your consultant might be more open to something more "natural" than "drugs", such as herbals? If there is something out there that would work and not have side effects like most of the drugs do, I know I, for one, would be all for trying it. Might broach the subject next time you see him. ??

  • Yes, i guess natural cures and diet can go a long way to easing some symptoms - have upped my intake of fruit and veg and definitely think I feel less sluggish because of that.

  • As far as I have read from various sources urso is what is given for PBC and even if it suspected a patient has PBC prior to diagnose.

    I know I had the itch for 8mths prior to getting the PBC diagnose late 2010 and given urso. As it was suspected 2mths prior to the diagnose (I had the AMA test) with regards to my symptons and all the bloods, I think I should have warranted urso then but didn't read about urso until after I was given it (only knew that is what people with PBC were given). (Not that I wanted any drugs, loathe taking any, always have. Just the fact it might have helped in the 2mths I had to wait for the AMA test to come back. But again I think it is all down to money as I was informed by one GP that urso 'was costly to the NHS' (I was not pleased not having a prescription for 11yrs AND I've always had to pay NHS charges).

    Having now been on urso since Dec 2010 I think it has helped somewhat but I don't think (and this is my personal experience) it has been as I was originally informed by the consultant with regards to itching as had that have been the answer to it I would feel 100% normal and not less at certain times (I get nights on/off with the itch, perfectly fine during the day).

    I don't know as I have found a lot of things with regards to the bloods seem to be 'top secret' as there might be some start gauge for giving a person urso with what are referred abnormal LFTs.

    Have you tried asking this question with regards to knowing that patients with PBC are given urso as maybe it may just put your mind a bit at rest here.

    With regards to 'high cholesterol' I have read that it is common for PBC patients to present with such BUT it is normally of no major significance as there are diff types of cholesterol, the good and the bad. (Prawns out of interest, I have found are very low fat yet they have a high cholesterol content but it is apparently the good sort. That is cooked ones by the way as I have also found out that people with liver disorders aren't advised to have raw shellfish but to date I've not been advised against by any health professional.)

    Hope you get things slotted together so you can start to go forward and that 'one hand knows what the other is doing' as the saying goes.

  • thnaks so much for your very kind words. Feeling much better at the moment, but still don't understand the "top secret" behaviour when it is our lives and therefore our information, even when asking direct questions as I tend to do.

    but thanks once again i really appreciate the support

  • It's good to moan and let it all out of your system. We're here anytime. x

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