Confused!

[Caroline-12]

Hello there,

I'm in need of advice please!

Was diagnosed about 2yrs ago here in the U.K. with PBC after blood tests and liver biopsy. Seeing a consultant yearly and having 3 monthly blood tests. Was advised no or very little alcohol, no anti-inflammatories, healthy diet and exercise which I'm following to the letter!

Have been seeing another consultant regarding severe dizziness and migraines (vestibular migraines)

It seems this consultant has written to my PBC consultant asking for advice about medication I can take due to the PBC. I don't take so much as a paracetamol right now!

The letter of reply from my PBC Consultant has started that I would be fine with Amitryptiline, Propanalol or Topiramate.

Surely these are very strong medications? Are they really safe to take with a liver already compromised by PBC? I already fight every day with the exhaustion, would I actually function on these drugs?!!

Please, please advise. I'm very confused! 😳

Caroline-12

[Betonarme]

Drink Coffee against the Pain...A natural Drug

[Missboro]

I've been taking Amitripyline for a few years now which is safe to take with PBC. I was on 3 a night until August last year when my rheumatologist told me to up the dosage if needed. The reason being I was waking up through the night in pain due to having osteoarthritis and back pain. At that time he also diagnosed me with fibromyalgia. He said i can take up to 10 a night if needed so to just gradually increase the dosage until suitable. I'm on 4x10mg a night which seem to be working for me now. As for anti inflammatories I take Celecoxib which is also safe to take. I was advised to take these for 5 days when my pain got really bad then take a break. These have stopped working now so I'm going to see my GP soon. I also take Zapain painkillers every day and these contain paracetamol. As for alcohol I only drink when its a special occasion but only have a couple. I can't drink much because I end up getting heartburn since having PBC. My GP and PBC consultant said that is fine so you dont need to stop it altogether. I still get days where I could sleep all day but its all part of the PBC and not the medications I take. I would say speak to your GP who will tell you what medications are safe. Hope you get sorted soon Caroline-12. Sorry for the long essay lol. Take care

[Caroline-12 in reply to Missboro]

Hi missboro

Thank you very much for your reply, it's reassuring to hear that this medication is safe.

I'm sorry to hear of your health struggles, sounds like you have a lot going on!

Here's wishing you well

Caroline 12

[Angel_b]

I take proprananol everyday to prevent migraines and it's been fine. The doctor also gave me sumatriptan but I don't like that there's a warning on the leaflet about liver so I would only take it as a last resort. Proprananol is also good for preventing varices so feel comfortable taking it. Hope you get something sorted.

[Caroline-12 in reply to Angel_b]

Hi Angel-b

Oh wow I never realised that! It's definitely the propranolol I will be looking to take out of the three they've mentioned then.

Thank you very much for replying.

Wishing you all the best!

Caroline-12

[Angel_b in reply to Caroline-12]

Hope it helps. It's good for keeping stress down too. So that's a bonus.

[Caroline-12 in reply to Angel_b]

That's a definite bonus! Think I better ask for a years supply!!! 😜

Caroline-12

[Angel_b in reply to Caroline-12]

Defo. I used to take it at night and got a lovely sleep. But now take it in morning and it keeps me calm through the day lol

[June9961]

I was on Propranalol and co Proxamol for years. Neither did me any harm and didnt affect my bloods. As the pain subsided I came off both bit by bit. Blood results have stayed the same.

[GrittyReads]

I was given Amitryptilene to aid my sleeplessness during the menopause, as I was having severe hot flushes at night. They were so bad that were stopping all sleep, and eventually causing the most awful migraines. I was given 10mg tablets, but told I could break them up into 1/2, or 1/3 or even dust !, and to work out just how much was needed. It was wonderful, a Godsend, and I still take it occasionally. When it was first marketed as an antidepressant the dose started at 40mg ... and went up and up! So if you start small, and then work out how much you need, you will be fine, but without getting zombie-like. I generally only took 1/3, but when I had a long and terribly painful bout of costochondritis I was told to take the 10mg, and that worked wonderfully. It is also prescribed for fibromyalgia, with a lot of success, but not generally, now, used for depression.

I don't know about the others drugs, but it sounds like you've got good advice from others on the propranolol.

If you are still worried, talk to the advisors at the 'PBC Foundation' (link to their site at the top of this page, where you will find phone and email contact details) : they are lovely.

Take care.

[Caroline-12 in reply to GrittyReads]

Hi there,

Thank you for your helpful reply I appreciate it.

I'm feeling v reassured by the friendly supportive replies I've had.

Wishing you all the best

Caroline-12

[teddybear7]

Don't know about the others but I've had amitriptyline, it's a very good name I tripped out that bad that I tried to throw a dish washer out the window & took a knife to my better half, safe to say the Dr threw them in the bin. I don't take anything like them now, scared me to death. X

[Caroline-12 in reply to teddybear7]

Oh my goodness, that wasn't the reaction I was hoping for! 😮

I don't generally cope well with meds, seem v sensitive to them so maybe not the amitryptiline?!

Thank you for replying!

Caroline-12

[RoxyP]

Hi there I take amytriptlene 20mg every night and was diagnosed with PCB in April this year so I now take URSO as well. Doc said they were ok to take together. I've not had any problems so far you just have to find what's right for you. Good luck.