Lupus and cirrhosis of the liver

[MOOG144]

HiDoes anyone on here have any advice regarding cirrhosis of the liver...

To cut a long story short 7 years ago this week I was rushed to hospital with my blood pressure through the roof and my kidneys struggling.

Turns out I had undiagnosed Lupus and a round of IVF had triggered it to attack my kidneys.

I ended up with a diagnosis of SLE, Lupus Nephritis and RA.

3 years of high dose steriod, Rituximab and all the other lovely drugs, going through hell... going from a size 10 to 20 and as I'm sure you all know the sheer hopelessness of it all...

Then lockdown and the nightmare that was.

Finally late 2019 I was well enough to try IVF again and in 22 we welcomed our miracle son.

Been in remission since 2019, I did have a diagnosis of NAFLD somewhere along the line but told nothing to be concerned about.

Over the last 7 years my reflux has gotten progressively worse and 2 weeks ago finally had a hiatus hernia repaired.

When the surgeons discharged me, they accused me of drinking heavily and told me I needed to stop as whilst operating they discovered my liver is showing early signs of cirrhosis, I told them I haven't touched a drink since getting ill in 2018 but they didn't believe me.

I spoke to my Nephrologist once I git home and he explained that there are several Lupus related things that can cause this and he immediately put a referral through for a liver specialist.

But the waiting time for an urgent referral is over 6 months....

Now I'm googling like mad and absolutely devastated that not only will I potentially have to go back on high dose steriods which I swore I would never do again but the thought that I may not be around to see my little boy grow up .

I know I'm probably over thinking and looking at worst case scenarios but it's driving me mad!!

Any advice or honest experiences would be gratefully received.

Xxx

[Barbara17]

I’m so sorry to hear of all your problems but delighted that you have your gorgeous wee boy. My doctor told me too that my drinking was out of control and when I told her I didn’t drink she laughed in my face! However she said she’d ’call my bluff’ and sent me for a scan which showed my gall bladder was about to burst! I had it removed as an emergency a week later. Although your appointment will take time most local hospitals have ultra sound scanners; could you suggest a scan to your dr just to rule anything out?

[Chris21]

Hi Moog, firstly, congratulations on your baby boy 🥰

now as to your liver, my husband also had problems with his liver and was also accused drinking heavily. I nearly punched the consultant 😂 we have friends that drink far more than we ever have and no problem. Anyway, my husband unfortunately did have to have a transplant. over the course of appointments we were told by the liver consultants, it isnt always alcohol related, hubbys was put down to possible fatty foods or medicine that he had for an i fection that caused a very severe reaction. 🤷‍♀️ 20 years later, hes still fit and healthy.

now me, I had pancreatis twice, first time was gall stones, which ended with removal of gall bladder, 2nd time no reason, after lots of blood tests and scans,they discovered i had lupus sle and sjogrens , this led to other auto immune disease being thrown at me, my liver levels were raised really high, this led to seeing the liver consultant where he diagnosed PBC, which isnt actual cirrosis it is primary billary cholangitis, I had no idea as had no pain in liver or any other signs/symptoms, this starts in the bile duct and can lead to cirrosis. this is apparently due to having lupus. I still have to be careful with rich food otherwise my pancreas/bile duct starts to play up, as for the liver, from the day of diagnosois 2007 to today Ive still have not had any liver problem. I have to take tablets for ever, which helps keep it to under control and I still dont drink 😊 Its actually so good that I only get a phone call every 2 years from liver consultant. (routine bloods always give an idea if its starting to go wrong)

2 different stories, with different outcomes, were still here just entering our 70s

Hope this has helped a little with worrying. its not always easy while waiting for consultants. the thing I was told while waiting were if i turned yellow or my eyes were yellow to go straight to hospital. I never needed to. x

[DogHospiceMom]

This is truly heartbreaking. One of the things I have done since being diagnosed with my first autoimmune disease is consider every medication that a doctor talks about putting me on. I go through all the side effects and see which organ will be negatively affected. Most meds affect either the kidney or liver. I was told that I too had cirrhosis of the liver after being in the hospital 5 days before finding out I had MRSA from a Medtronics spine stimulator implanted in my sacrum. This was followed by Rocky Mountain Spotted Fever. I stopped taking any medication that I could that metabolized in my liver. I stopped Tylenol and all meds with acetaminophen. I also invested in an infrared sauna. If you research what infrared does, in one session, I use it for 45 minutes at a time, it can lower inflammation by 30%. It also removes toxic metals and other toxins from the body. I also take a liquid glutathione product and use stem cell patches. I take a lot of supplements. I also drink filtered water which is then boiled and simmered with an entire sliced lemon, fresh turmeric and ginger. This goes into a jug in the refrigerator and then I drink it throughout the day. After 9 months of doing this daily, I was in remission from lupus and have remained in remission for 2 years. Unfortunately, this regime has had no affect on, Sjogrens, degenerative disc disease, vasculitis and neuropathy. However, I continue to constantly research.