HI - I’m wondering if any of you have experienced off-and-on fevers of 100 degrees or less over a period of weeks.
This has been my recent experience, and I’ve spoken with my hepatologist, my GI guy and my GP, but nothing has come up to explain it (thorough blood work, urine, etc all normal.)
None of the docs are very alarmed, and I’ve been able to cope with it. I get woozy - a “fevery feeling” - and of course there is fatigue (my faithful PSC companion!) It shows up mostly at night.
Can anyone shed light on this?
Thanks so much! I truly value the input of all the members of this forum.
(Last cholangitis attack mid-Aug.
Low-grade fever off and on, mostly in last 2 or 3 weeks
- taking 300mgs of Urso 2x daily, since then liver panel improved by about 40% over all.)
That’s one of the ways I was diagnosed with PSC. I would very suddenly have chills & fever. After the attack–usually lasting about 6-12 hours, I would be so weak that I’d have to stay in bed. I still get these attacks. My worst attack was in May. I couldn’t even get out of bed without help. I ended up in the ICU for sepsis & dehydration. All of these attacks are a level of sepsis. If your fever goes over 101, go to the ER!
I know the things that come with PSC are quite miserable. I would keep an eye on your temperatures. I did have what I called “men’s hot flashes” which may or may not have had a low grade fever. I kept gel paks and other type ice paks in the freezer, and when I started feeling flushed and feverish I’d take one of two of those out and cool myself down which made me feel better.
I assume you are keeping an eye on your labs and watching for increased bilirubin, etc. I’m glad to hear the URSO is helping keep your numbers down. I took URSO myself for all the years I was diagnosed with PSC and it did help. I was on 1200 mg a day. It’s good stuff.
Take care and I hope you are feeling better soon.
Thanks so much for your reply merrywhiterose
I’ve had a very similar experience, and am familiar with chills and spiking fever symptom of PSC (cholangitis attacks), which put me in the hospital 3 times last year. I now know how to handle them with antibiotics…whew!
What I’ve been experiencing lately is different - a low-grade fever that lingers, but comes and goes.
I’m wondering if anyone has experienced this, and if it’s just a milder symptom of PSC - my docs don’t have an answer.
Hope you stay out of the ICU!
Thanks Mark - yes, I’m monitoring my temp. I have a whole journal to track my PSC symptoms. Sometimes it feels like overkill, because I don’t want to always think of myself as “sick person.” I’m trying to change my outlook to “normal person with occasional bumps in the road.”
Know what I mean?
Chills are a warning sign, at least to me. The two times I had chills was during a cholangitiis attack.
My doc was not concerned with at temp less than 101.5. He said when it hit that, to get to the ER.
Yes, chills are the first sign of my cholangitis attacks. These low-grade fevers don’t have chills with them…different than chills/ high fever attacks.
I was getting them, but they stopped when I starting drinking a G2 (Gatorade with less sugar) everyday. I think my electrolytes were off. Haven’t had one in 7 months. I was getting them 2-3 times a week. Good luck
Thanks for the tip, Holtz! This sounds like something to try if/when the low-grade fevers come back. I’ll try coconut water, great for electrolytes, instead of G2, and will notify the group if it works. Thanks again!
I had intermittent nighttime fevers (100-103) lasting for 3-4 days every other month or so for 10 months. Went to ER/Urgent care - labs all normal including enzymes and WBC. I finally had a PET scan that showed some activity. Treated with antibiotics for 3 weeks. Now fever free for two months. PET scan showed improved activity.
Be assertive. You may have a subclinical infection.