Cirrhosis confusion and medication for other conditions (cortisone injections)

[AnxiousPete]

Diagnosed T2 Diabetes June 2022, athritis in both knees September 2022. Altered diet and exercise to try to reverse diabetes (which I have done) Had cortisone injections in both knees Nov 2022 and currently pain free. I was experiencing some pain in my back, lower right just around bottom of rib cage. As I had rapid weight loss in the autumn and the sudden onset T2D in summer I persuaded my GP to refer me for an abdo CT scan with contrast. I was concerned about possible pancreatic cancer. Then came the bombshell at the end of January 2023 . No cancer evident thankfully but some cysts on the kidney(s) however I also have cirrhosis of the liver. Saw consultant Feb 13th. I've portal hyolpertension bloods normal apart from platelets and some type of amaemia? with enlarged red cells? Consultant says i'm compensated. No ascites thus far and no other symptoms. Awaiting gastroscopy (for varices) a bone density test ? a fibroscan and I think liver ultrasound ? to check for HCC. Like everyone I'm sure, this was quite a shock and I had no idea cirrhosis was a 'silent intruder'. Obviously I'm a bit better informed but lot's to learn and this forum has been really helpful but it does all seem very complex. I'm alcohol free since day of diagnosis (I've seen reference to 'Russian roulette' here and elsewhere) and whilst it isn't fun it's getting easier. One of my concerns is that I've read about higher carb diet recommendations which is counter to my diabetes reversal regime. I am also worried now that my cortisone injection therapy for the arthritis is contraindicated with my cirrhosis and I really need to keep active for weight loss. Any advice is welcome. I've got everything crossed for a decent prognosis. I was angry at first but looking at it all more dispassionately it has been my life choices of drinking too much and being overweight and obese for 35 or more years that has put me where I am now. My anger is directed entirely at myself.

[redpoint72]

Morning pete.Firstly don't get angry at yourself, i did also,but that doesn't get you anywhere......no good having regrets,as we can't change anything in the past,but our future is a different matter,for us to shape.

There is not 1 of us perfect,not one,and hindsight is a wonderful thing!!!!.

I cant really help regarding the arthritis side of things.

I just wondered if you were ever appointed a dietician, to go through things with yourself when cirrhosis diagnosis was given?.

I was they were a great help,although at the time I was decompensated.

Well done with the abstaining fella,I know only to well, its not an easy task .....some very difficult periods .

My best. Chris

[AnxiousPete in reply to redpoint72]

Thanks for your kind and wise words Chris. I am trying to focus more on the future and am really glad to have found out at least before major symptoms.

I am seeing a dietician regularly as I volunteered for a diabetes remission programme which looks like being successful. I will ask her for some advice on the cirrhosis too as I am sure she will have had othets in the same boat.

I hope you're now compensated and that things are going well

best wishes

Pete

[redpoint72 in reply to AnxiousPete]

Oh yes fella ,discuss your cirrhosis diagnosis with your dietician, they will certainly point you in the right direction, a big help for myself. Well done with the diabetes side of things,sounds as though your dealing with things well.

Alot to take on board with a cirrhosis diagnosis.

Well I'm currently awaiting appointments for another endoscopy, as still have some varices, also 6 monthly bloods,as my last ones were not very settled at all.....also awaiting my usual 6 monthly ultrasound....

So quite a bit coming up!!!....but he ho,I just crack on with it the best I can,as do so many on the forum. Yes I'm currently compensated.

I wish you well pete.

My best. Chris

[Readlots]

Hi Pete, don’t beat yourself up - no one has a Chrystal ball otherwise we’d all make perfect decisions about lifestyle all the time.

Pharmacists are very good at advising on medications, what works with what and what doesn’t.

Chris’s suggestion of getting a dietician referral is a good one. Your liver consultant should be able to advise on all of the above - start your list now ready for your next clinic appointment.

[AnxiousPete in reply to Readlots]

Thank you for this. I think I'm getting over the anger and as you and Chris suggest looking back cannot change things.

I will be following up on the dietitian suggestions.

I hope you are keeping well

Best wishes

Pete

[Readlots in reply to AnxiousPete]

I think when you get a diagnosis it’s almost like a form of bereavement. You grieve for your old life pre illness, and anger is a normal part of that grieving process. You’ll reach a point of just getting on with it - we all do

[Anthonysmate]

Hello Pete, I'm 61 and initially i was diagnosed with fatty liver about 5 years ago, basically didn't care much what my diet was, drank what I liked when I liked and took no notice of fatty liver which had been picked up like you on routine bloods. The doctor seemed unconcerned, and said just to watch diet lose weight drink less etc. To be totally honest I think he didn't give me a full what the prognosis could be- third degree, because I like you have other conditions, neurological neck problem ( had for considerable time) which the booze definitely helped with pain relief, and anti spasm, well while you're drinking anyway, the next day was always recovery day and i did very little until i felt better, hangover etc.

Anyway to cut a long story short, just before covid no energy, bloods red flagged that i needed to see hepatologist, covid came delays etc .

Fibro given score 19, they were certain I had cirrhosis, but my bloods had improved since Gps referral (probably because I had been unwell and not eating much for a number of months or drinking, which saw me lose two stone, because of this they recommend biopsy, which I didn't want(who does) but went through with for clarity. Result Fibrosis f3 -f4 with bridging. The last year has been a real rollercoaster, gallbladder problems now to add to the rap sheet, weight seems to yoyo as when sticking to diet and stopped drinking didn't feel up to doing any exercise so catch 22 as it were, then told to do my former things which did involve going out and walking regularly (going to Non-League soccer) which i had stopped completely for a whole season, but the cost of this is increased meds when I do this, and there are very few if any friendly meds for the liver, so I just take each day as it comes, try and keep to diet, go to my football when feeling up to it, even sometimes when I dont, I give a little push, like today, decided to go now after reading your post. Got six monthly appointments with hepatologist, last one weight little change, but fibro score down to 11 kpa, so some good news. Don't know what the future will bring,but try to stick to medics guidance, no alcohol and as close as I can to diet, have support of my son who does his best to help me .

Wishing you all the best, this site is most excellent, well done on the abstinence . Regards Anthony ( sorry for long post/ reply).

[AnxiousPete in reply to Anthonysmate]

Sorry to hear of your issues Anthony. A real rollercoaster for you but at least some improvements to be positive about.Wishing you the best for you ongoing battles with diet exercise and this crappy liver disease

best wishes

Pete

[Slsslw in reply to Anthonysmate]

Anthony, did they say anything about you not having cirrhosis after your fibriscsn changed from score of 19 to 11? And if you don’t mind me asking which of your bloods were flagged? I am in similar situation.

[Anthonysmate in reply to Slsslw]

Yes they were sat there looking baffled, and said not full on cirrhosis, because in my first appointment after fybroscan, they were so sure of it they went as far as saying it was just a matter of time (the senior consultant said) before I turned yellow and showed stigmatic signs of advanced cirrhosis and should get my will in order, to say I was petrified was an understatement. And I eventually went into acceptance, my brother has cancer and was told six months tops, he is still here and on holiday in Malta as I write this 6 years on, he has been a great help and I thought it would be me supporting him, I guess we both support each other now. Anyway the upshot was to say after biopsy, weight loss and my bloods being relatively normal, roughly one year ago, was diagnosed as I've stated f3-f4 with bridging, which is by no means good, in the USA it's known as pre-cirrhosis. As I've already said my last scan\appointment a few months ago said my weight had gone up they were not pleased, also various vitamin deficiencies, I take supplements, and of course they were delighted I had abstinent from alcohol for close to a year, so they wanted me to excersize more, taking more meds to help, so I've followed their advice, my fibro reading was down to 11 kpa, unfortunately I've got this gallbladder problem, which keeps on inflaming, (treated with antibiotics/ waiting for surgery) I've also had a number of infections, treated same way, two obstinate chest infections, which needed a second lot of antibiotics to clear up.. Now Abscesses, which I am currently waiting to be seen about. The bloods flagged originally were liver function,showed high fat & inflammation, not sure of numbers on blood report, they didn't dwell much on that, my next appointment is scheduled for July- Regards Anthony.

[teletonetapper]

Positive replies to your initial post Pete. None of us have a crystal ball and once the diagnosis is accepted, one must move forward and take positive steps to try and lead a healthy lifestyle. Many members on this informative site have managed to stay compensated with their Liver condition and lead a relatively "normal" life for years. No-one's life is without ups and downs and we cannot change events. Everyone can change their future but not their past. Don't dwell on this diagnosis - you must stay positive. Very best wishes Pete and stay strong with your diet and excercise.

[Ubwa]

interesting diet advice, most are for a more protein/carb based diet than usual. Carbs aren’t evil. Definitely do tell your dietician, they will know what’s best for you, or point you to someone who can.

I had cirrhosis and have very bad knees(would be having knee replacements if not for my age), both need surgery, and it was attempted while still having cirrhosis ( day of op platelets were too low). My knee consultant was in contact with my liver one to go over medications etc. Was told there wasn’t much harm in cortisone/synvisc injections. I would run it past your doc to be safe as with any medications, however.

As others have said, don’t beat yourself up, I managed to do it to myself for the same reasons in only 3-4 years and when told, immediately stopped and focused on doing everything I could to get as better as I could. There is light at the end of the tunnel.

[AnxiousPete in reply to Ubwa]

Thank you so much for this encouraging information, I really appreciate it. I wish you well with your ongoing health situation. I will try my best to be as well as possible for as long as possible.

kind regards

Peter