RE: Body Temperature/Fevers& Pain-Sandi &

[Guest guest]

That just makes me mad… The woman who is filling in for my hep

dr pretty much told me the same thing, and then wouldn’t give me antibiotics

because my fever was below 100 by the time I got into the hospital. It had been

spiking between 101.7 and 99.4 for days. Turned out that I had a kink in my

biliary drain and I had a mild case of cholangitis.

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I also get on and off low grade fevers ranging

from 37.5C-37.9C (99.5F-100.2F). My GI says that this is normal for PSC but

does not warrant antibiotics until it hits 38.5C (101.3F).

[Guest guest]

Shahina,

I was also told to take antibiotics, when the temp start to rise above 101F. I will tell you about the pain, but i just want to say that at least you are lucky in that your strictures are restricted to the interhepatic, part, only. My liver is enlarged, too. I am not so sure if some other members, has the same.

I am not surprised for your pain frustration. I think most of us, were and still, are. We want definite answers, but we get more confusion sometimes, than specific answers. The standard theory [if i can say that], is that the URQ pain, occurs due to cholangitis attacks. One is the result of temporary blockages of the bile duct, due to thicker bile, and so the pain and sometimes nuasea, too. The second is an infection indside a blocked or a narrowed BD. The major difference, is fever. And perhaps a more significant pain plus nuasea, vomiting and even juandice. That pain may radiates into the back/shoulder, right side and if worse, into the left parts, too, and even to the chest center----etc. I am not aware of your degree of pain, but for myself, i started with a mild URQ, that gradually progressed into a more significant, at times, even without an infection [fever]. But everyone's system and disease

course is different, and so the pain will vary from one patient to another. Also, it might be accompanied by nuasea and even vomiting, i think in a blockage sitiuation. In the infection type, a trip to the ER, might be very necessary, for an IV antibiotics.

Still on the pain subject. Because in addition to cholangitis, my URQ pain seemed to be triggered a lot by my bowel condition [after certain meals, even though i am on a low, everything, diet]. And i felt it very clearly. Mainly, IBS and IBD. So after months and months of complaining ,finally, i got it. My colon is highly sensitive to stretching and pressure, because of chronic inflmmation, and on top of that, spasm due to IBS. And as few members has described it as the nerve ends pain carrying signals, of the membrane surrounding the liver, that is causing some of that pain. That is at least in my case.

I am on 30mg Nortriptyline, for the pain. And i have just been referred to a "Pain Management Program" and "Acupuncture", too. And although i am not too much believing in their effectiveness and what i have heared from some of the members who tried the Pain Management, my doctor is very much encouraging me to try them.

I do hope that you will find the information, somehow helpful and may be easing your frustration and disappointment. I do believe that a good number of us, has and is still experiencing the same sitiuation. But finding our group is a continous blessing. Everyone's experience with the illness, is for many, an answer by itself, i believe. And i do hope that you will find a gastro doctor or a hepatologist, that is more knowledgable in PSC, and who will be able to give you good answers and the right treatment. Take care.

Subject: Body Temperature/Fevers & Pain-Sandi & To: Date: Friday, March 6, 2009, 2:38 PM

Hi Girls,I am a lurker and do not post often but for the last few months I have been in constant pain (URQ). I also get on and off low grade fevers ranging from 37.5C-37.9C (99.5F-100.2F) . My GI says that this is normal for PSC but does not warrant antibiotics until it hits 38.5C (101.3F). I had an ERCP recently and they did not see any strictures outside the liver--all my strictures are intrahepatic. They also say that my liver is 'odd shaped'? I am assuming that means large. No one can understand my pain and it is starting to get frustrating. Both of you talk about pain a lot and I thought maybe you could give me some suggestions or thoughts from your doctors. I am just getting super frustrated.Thanks a lot,ShahinaPSC 2003/possible Crohn's 2007

[Guest guest]

Shahina,

Hi! I hope today is a good day! I'm so sorry to hear about the pain you're in

and the trouble you're having with your doctors. The best advice I can give you

is to be persistent. I've had doctors tell me that the pain/nausea/etc is all

in my head and not PSC related and that I needed a shrink. (Incidentally, the

shrinks basically said the docs are nuts and I don't have any medical-mental

issues instead that I have physical medical issues - duh!). I've had docs tell

me I'm a complainer and that I have to " suck it up. " I've had others say that

anyone else would just consider my symptoms annoying and not life-changing, etc.

In other words, there are a LOT of ill informed, bad doctors out there. But

here's the good news. There are also some really great doctors out there and if

you can find one who understands what you're going through and is willing to

fight for you, hang onto them! Most importantly, don't give up! I know it's

hard not to get

discouraged when you feel no one is understanding/believing/listening, but

someone will eventually.

I'm not sure what kind of help you're looking for in regards to your pain.

Maybe if you want to share some more details, I can see if it's anything that

I've dealt with and may have an idea about, but that's totally up to you. I'm

not pushing! Also, if you want to e-mail me privately, feel free. As to

pain meds, right now I'm on Dilaudid 6 mg as needed. They've also prescribed me

Tramadol, but to be honest, that doesn't even work at all for me. One of my

doctors said it barely even qualifies as a pain pill it's so minimal. My PSC

doc has also said that in a pinch if I need to, I can take two extra strength

Tylenol.

I hope some of this helps!

Sandi in VA (Rochester/VA, etc etc etc)