Suddenly chronically sick - a reason to live your life

Hi,
I‘m Steffi.
I always had sensitive skin and an immune system that was a little bit out of whack.
I went do a dermatologist every few years with eczema and got Cortison cream.
Except for that I was pretty healthy till I was 31. I was always tired and decided to go to my doctor. My thoughts were might be a lack of iron.
Well I got my blood tested and got the answer too high liver values.
Then a lot happened at once so got trouble with my leg and found out it is a tumor. Luckily tumors in the hip are generally benign. As was mine, however PVNS is aggressive. I got an operation and lots of pain meds and ibuprofen.
Hopefully done with the tumor.

My digestion problems got massively worse under NSAIDs and I was waiting for my colonoscopy. Diagnosis ulcerative colitis.
Since my liver values stayed high and my body apparently decided a tumor and UC wasn‘t enough I got the diagnosis that it might be psc. Strangely enough the UC gave me a iron deficiency. What I originally wanted to hear when I went to the doctor…
The check for antibodies was positive. The MRCP was without finding. I was given Ursodesoxycholic acid because my liver values got so high. Unfortunately I was allergic against UDCA. In Germany that is the only therapy in Germany, even though there is no proof it helps. I got a liver biopsy to insure it was PSC, while it was confirmed it is stage one.

So I‘m now 33 and have UC and PSC. The PSC is just being monitored and at the moment mostly quite. I‘m very thankful for that.
The UC is acting up, so I got Immunosuppressiva - perfect in corona times. However as my UC got worse, my liver values get better. Strange but I‘m not complaining.

While my health might not be perfect at the moment I think you have to look at the bright side. I love to travel and I‘m not sure that without my immune system I would have went to India. I was kinda afraid to travel to India by myself, not sure why. I was perfectly safe.
Guess it gave me a reason to face my fears, as irrational as they turned out to be.
We all won‘t live forever. Life generally always end with the death, at least I haven‘t heard otherwise. Life your life, don‘t let anything steal your joy. I love to travel - for me that is a small piece of happiness. It didn‘t stop me when I had to travel by myself and this also won‘t.
I had a great time and don‘t want to miss the experience.
Enough of me.

3 Likes

I appreciated reading your story and your very wise philosophy. My mind is still feeling the travel bug too, even the solo kind which has many advantages as you know. I haven’t in a while with health but needed some helpful motivation like your words there. I have been to India - solo- prePSC and it was amazing but as much as I’d like, I better pick NZ or something like for next trip. Hey, look into Vancomycin, I think (never 100 percent) but I think its working for me. RJM

and to slightly clarify, its not the PSC which would cause me to be wary of certain travel destinations, its the post transplant immunosuppression I’m under now - places requiring lots of innocculations may be prudent for me to avoid.

Thank you.
Yes, I get what you mean. Some places might not be the best idea right now.
NZ is really beautiful. The weather isn’t always perfect, so it is quite nice to wait for better weather for some things. So take your time and don’t rush. Also driving takes a lot more time than google says. It is one of the planning mistakes I did, when I was there.

I’ll ask my doctor about Vancomycin. I think it is only used for the infection in Germany not for longer term use. However I will find out.

Life is definitely a roller coaster. One day your carefree and “healthy”, and all of the sudden it shifts. However, PSC doesn’t mean you’ll miss out life. :slight_smile:

With that said, I do recommend to think extra about travelling outside EU, especially to those kind of places where you’re extra likely to become sick. Your insurance is probably not gonna cover it if you go to for example India and need medical attention for your pre-existing conditions.

As you will see from this forum, Vancomycin for PSC is better a polite and well-researched “tell” to your doctor rather than an “ask”. If pushback, ask to try it for 3 months and review. Good luck.

Trying to get vanco in Europe is unfortunately harder than getting hard drugs on prescription. European doctors are more scared of antibiotics than the devil.

I’ve gotten all kinds of crazy excuses, it’s almost laughable. The latest one was the worst one yet. Went to a local hepatologist and he told me that I was gonna get nerve damage by taking oral vancomycin. :rofl: (It’s a super rare side effect to iv vanco and has never happened to someone who has been taking oral vanco.)

I usually reply that doing nothing isn’t an alternative, but the whole concept of risk isn’t something they seem to grasp.

Thank you.
I said ask, because at the moment I have no interest in taking it. That has two reasons.

First while my UC is crazy my PSC is really great. My liver values have become much better. The only ones that are still elevated are AP und GGT and they have gone from over 400 and 500 in February to about 200 and 250. So I‘m not sure any positive change will be significant.

My second reason is my my UC, because of it I get Infliximab. Not really perfect in corona times, but otherwise a nice experiment. As far as I‘m informed it is not clear how Vancomycin works. Well one theory is that it is not the antibiotic effect but the influence on the TNF alpha production. As Infliximab is also an inhibitor of the TNF alpha production I‘m interested how my PSC will react under it. My UC is getting better, hopefully it says that way.
What can say as a scientist that kinda experiments / testing are interesting.

There is also might be a regulatory problem to the tell my doctor (instead of ask)
Medications have to be approved for the use by health insurance companies in Germany. Otherwise getting a prescription is tricky. Especially for antibiotics, since they have the whole resistant germs fears.

Yeah getting vancomycin might be difficult.
However there are some other strange things going on.
In Germany they still have the guideline that one should take Ursodesoxycholic acid, even though there is no scientific proof It helps.
When I complained about being allergic I had to try the pills, the tablets, the solution and then a mix out of pills and tablets. :sob:
Surprisingly the last option didn‘t work. :woman_facepalming:
I still sometimes get told that normally I should take it and then he adds in the same sentence that there is no proof it helps.
Right. Never gonna happen. :joy:

Pretty much all countries are recommending urso. To be fair, it might help for those with symptoms from their PSC, but not for much more than that. Unless you’re friends with a doctor, you pretty much have to go to USA if you want vanco. :confused:

I think the big issue is that pretty much all the doctors I’ve visited at home compare PSC to UC/Crohns disease, like if they were similar in terms of severity. I wouldn’t experiment with medications for my Crohns disease, but for PSC I’m willing to try a lot more.

Sorry for the rant.
It‘s not about urso (UDCA) or that I don‘t believe in it, it‘s about the stubbornness. Urso does has it‘s reasons and people should take it. It helps with the liver values, might help with symptoms.
If I could take it, I would. However I can‘t and mention it again and again doesn‘t make things easier or change things. It‘s not a choose not to take it, I just can‘t.
Now I‘m fine with not taking it, because of the reasons above. However it is still hard, when you know that there are studies for a derivate. Not sure what comes out of the study or if I‘ll be allergic against norUDCA as well.
We will see. Doesn’t make any sense to worry about it and I really hope the study turns out great.

1 Like

Steffi,
That is a wonderful story and lesson.

With psc, there are a lot of quesitions of “whether or not I can do…whether or not I can go…”

That ties in with the question of how much, or to what degree, is a person willing to let psc control their life, or is able to control their life over psc. That is a very situational/personal question that we all have to answer in some way.

Glad you have the right mindset. outlook in dealing with two autoimmune diseases.
Jeff

Steffi, just a quick word to say, best of luck, and seriously seriously do your research - knowledge is power - and that does not have a limit in the scientific literature, read everything on PSC (especially the experience of the good souls in this forum) and make decisions for you, thats what I did and I’m still alive after diagnosis of PSC, diagnosis of immanent death, transplant, rPSC, then rPSC again and I’m still here and feeling bullish, up the the tree in my backyard cutting branches, and going camping with my kids since the COVID restrictions got lifted this week, yay.