Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Spring on May 19, 2016, 05:08:36 PM

Title: Liver labs, cevimeline, ultrasound
Post by: Spring on May 19, 2016, 05:08:36 PM
I have been taking cevimeline (Evoxac) since it came out. (2000) (original prescribing doc said I would need to watch the liver labs).
My liver labs came in a bit high, (they are only 2-3 times the normal highes value) and doc ran tests again, still high.

So I have an ultrasound of the abdomen (liver per nurse) on Monday, and follow-up on Tuesday with doc, and nurse said depending on results, may be referred to gastro entero doc.

question: anyone have liver highs due to the cevimeline?
Anyone have the high labs and some other result?
From what I read, could also be Sjogrens, or diabetes, autoimmune related...and others?

I would appreciate hearing your experience. I am not panicked, as I think it likely due to the cevimeline. I am trying to stay calm. I really do not have more symptoms other than those I assume are the Sjogrens and just plain getting older.  ;D
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Jasper on May 19, 2016, 06:13:09 PM
I had elevated liver enzymes due to Hepatitis C which I contracted decades ago from a Gamma Globulin injection. One of the liver enzyme results was just a few points above the upper normal.  The other was about 30 points above upper normal. However, I still had Stage 2 liver fibrosis. Liver enzymes measure inflammation. They do not measure liver damage. I mention this because you cannot tell how much liver damage you have by the liver enzyme results. (My liver enzymes returned to normal after treatment (and cure) for Hepatitis C.

If is the Evoxac causing the elevated enzymes, then stopping the Evoxac should bring the liver enzymes down. When I was on Imuran my liver enzymes shot up, but they came right back down when I stopped the Imuran.

There are other possibilities for elevated liver enzymes:  Hepatitis C, Autoimmune Hepatitis, Biliary Cirrhosis, other medications, and several other problems.

Ultrasounds do not show as much as a CT scan or MRI.

Seeing a Gastroenterologist is probably a very good idea.

Best of luck for the future.
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Liz D. on May 20, 2016, 07:05:27 AM
I get high liver enzymes every time I take iron supplements .  I am anemic so try to just eat iron rich foods but it isn't really helping.
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Tharrell on May 20, 2016, 08:56:02 AM
Oh my, never knew that it could be a side effect of cevimeline. No doctor has ever mentioned it!
Title: Re: Liver labs, cevimeline, ultrasound
Post by: SunshineDaydream on May 20, 2016, 11:03:08 AM
Same with me, Tharrell. I'll have to check if my doctors are monitoring my liver.

I hope your upcoming ultrasound turns out okay, Spring.
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Spring on May 20, 2016, 03:06:20 PM
I'll let you all know how this turns out.

Spring
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Tharrell on May 20, 2016, 03:12:19 PM
Please do Spring. I do get regular liver pannels done due to the Dilantin and the Arava. I do know my liver had slightly enlarged for some reason. My oncologist orders a yearly ct scan of abdomen, because of my cea levels hovering between 10 and 11 for unknown reasons.
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Spring on May 24, 2016, 05:09:56 PM
Update: ultrasound results, everything is normal. YaY!!! great news.
Next step....another lab test in 2 weeks. Doc said it normally goes down on its own after the one test, but since mine did not, one more time at the retest. If it is still there, looking for a trend and maybe a visit to a GI doc in case we missed something.
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Shadowlake on May 26, 2016, 11:35:17 AM
My ALP (alkaline phosphatase liver enzyme) level has been elevated for about 3 years now. I've had a liver scan with contrast (that last part was expensive and insurance wouldn't pay for it) but it came out "normal". My rheumy is always concerned about the ALP but so far nothing has shown up.

Title: Re: Liver labs, cevimeline, ultrasound
Post by: Spring on July 12, 2016, 05:02:46 PM
UPDATE:

After several rounds of retesting, the lab Monday showed increase in the liver test, so tomorrow I get to go to a GI specialist.

Results of the ultrasound were that everything is normal.

I'll let you know what I learn tomorrow.

Spring
Title: Re: Liver labs, cevimeline, ultrasound
Post by: SunshineDaydream on July 12, 2016, 05:24:26 PM
Glad to hear the ultrasound was normal, Spring. Did you stop taking the cevimeline at any point after your initial post? Just wondering if so, did it affect your test results?

Good luck with the GI specialist tomorrow.
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Spring on July 12, 2016, 05:31:03 PM
I am still taking it and what I read yesterday, it seems they are no longer worried about it with the cevimeline...but it can be a whole lot of other things, haha, very long list.
Title: Re: Liver labs, cevimeline, ultrasound
Post by: SunshineDaydream on July 12, 2016, 05:35:01 PM
It's good you didn't have to give up your cevimeline! That would have brought a whole different level of discomfort. I hope you and your doctors are able to figure out the cause soon and it's nothing serious.
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Spring on July 16, 2016, 05:38:53 PM
The GI specialist Wednesday explained what it could mean and different things to test for, and what after that...so we started with more blood work, 3 vials. I don't remember all of them, let's see...autoimmune panels...hemochromatosis, Wilson's disease (which is hereditary, so I don't think this one will be pos.), perhaps ferritin, and some other things. They sent the blood to another city's lab, so I don't expect to hear results until Monday or later.

I'll let you know when I know results and what comes next.

Spring
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Spring on November 03, 2016, 06:14:02 PM
Sorry, long time before a response...

all the new lab tests were negative, and the liver were still going up slowly.
So, doc gave me a choice, liver biopsy or lose 10% of my weight, which he was assuming it may be fatty liver and losing the weight may take care of it.
I went for the weight loss in a serious way. cut intake way way back and upped exercise.
Well, I lost 20 pounds. Retested the labs and all my tests were back in normal range including some that have been slightly high for years (cholesterol and triglycerides).

So now I am sufficiently convinced I must keep my weight in this range or a bit lower (I would like to lose 4 more pounds)....for the rest of my life.
That's my goal now.

Spring

Title: Re: Liver labs, cevimeline, ultrasound
Post by: irish on November 05, 2016, 01:58:37 AM
Spring, Just a little info for thought. My middle son who has no diagnosed autoimmune but does have lots back and joint pain and hypothyroidism runs higher liver tests every so often. He has had all the tests needed to rule out the bad stuff including the autoimmune blood work. Everything comes up negative.

However, the doctor is watching him cause my other 2 boys have autoimmune as did my husband. My son thinks that he is getting Sjogrens and has a mild case of it as his teeth are starting to get bad along with all the joint pain, etc. He also has really, really bad reflux and has for about 10 years. Sounds suspicious doesn't it.

The liver tests for him will be positive for a couple of blood checks and then the next test will be positive. Sooo, I hope that this is your situation. Good luck and keep us posted. Irish
Title: Re: Liver labs, cevimeline, ultrasound
Post by: genko_b on November 05, 2016, 09:21:30 AM
Great news - glad the labs were easily fixable.

Genko
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Spring on November 15, 2016, 05:38:19 PM
Thanks, Irish, I will keep an eye on it. Do to a change in the insurance, I was able to look back on years old labs, and found elevated levels when I was high in weight. Watching it in future may show that is it for me, or it is something else. We shall see.
Title: Re: Liver labs, cevimeline, ultrasound
Post by: irish on November 16, 2016, 04:04:20 PM
Good luck to you Spring. Irish
Title: Re: Liver labs, cevimeline, ultrasound
Post by: Judie P on November 16, 2016, 06:35:50 PM
Congratulations, Spring!  Good work!  Love and hugs, J