My numbers aren't bad but I'm disappointed becsuse OCA didn't normalize my alk-phos. My numbers back in Oct. last year had spiked prompting my doctors to put me on Ocaliva. They took me off of my RA drug Sulfasalazine and my numbers when back down. They still started me on Ocaliva. So, in 30 days, my alk-phos went up 10 points, and my Bilirubin 4.
Not sure what this means.... I'll wait to hear from my hepatologist. (I made Posole. Comfort food. 😊)
Stella❤
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Ktltel
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Stella that looks so very good! Whatever the numbers mean I send a prayer that they are going to be doing as they should be. How do you feel? How are your energy levels? In my heart it seems that if you can make food as beautiful as this your are ok and you are going to be even better. You're wise to wait to hear from hepatologist... he knows what it means and it isn't helpful to you for us, with no knowledge, to speculate on the meaning. sent with love
I'm not good on numbers at all, but I can see bili isn't actually up 4: it's only up a tiny fraction of a second decimal place on previous reading, which is hardly at all x
Stella, the number changes may mean nothing. There will be sampling errors, analysis errors, the time of day makes a difference and what and when you last ate. My advice is to expect numbers to go up and down but take note of TRENDS over time. Maybe plot numbers on a chart. Best wishes.
However, the transition in to taking Ocaliva and subsequently being on it for 30 days, should have made a "decrease" in my alk-phos. My GI was not pleased at all and asked me to continue taking it until I spoke with my hepatologist. My GI said this may be an early indication that I'm not going to respond to OCA as well. We will see.
Stella...try not fret too soon. May take little more time. I think if the goal isn’t achieved with 5mg, that’s when they bump to 10 mg. Your hep may wish to give it a little longer. He will guide you. Prayers 🙏🏻😊
Sorry for your frustrations & your present status. Hang in there & as everyone has said, need to look at trends & not just one lab result. Hope it trends better for next labs.
Lovely table setting & meal. Makes me hungry. Can you share your recipe.
I’m sorry Stella. Are you taking Urso with the acalva?!i have been unwell for two months now. I have read that some patients have take both. I hope that you get this sorted out.
My numbers alk phas always runs between 150 and 175. Doctor said it will never be normal and he is pleased with the alk phas being where it is. I have learned to not pay so much attention to the numbers and just go by how I am feeling. I wish you all the best.
I was on Sulfasalazine. I even had to wear wrist braces for 2 months. Ugh, what a hassle. But they kept me from banging my thumbs and fingers. Boy, that would send shooting pain through my whole arm like lightning. But, my DeQuarvains syndrome slowly went away on it's own. Right now I don't take anything for RA. I'm in remission sort of. Only slight stiffness for the past 6 months. Unfortunately humid weather is on its way here in Kansas. That usually makes my RA worse. Sulfasalazine caused my liver enzymes to rise. So I'm on URSO and Ocaliva only.
Yes those wrist braces are a pain as well. I have very little mobility in the left hand and wrist. Went for physical therapy but only seemed to make it more painful. I’m reluctant to take anything due to the liver issues. Thank you for responding and I wish you the best.
I had physical therapy too. It did not help me. Have you looked in to LDN? I didn't believe it did anything at first. Then I stopped taking it. Maybe it's just a coincidence, but, my RA and DeQuervains slowly got better while I've been on it.
I don't know. Like I said, I actually went off of it for a month or so, my numbers stayed within the same range they have been for nearly 2 1\2 years. So I guess you can say they haven't gotten worse. In Feb my Alk-phos was 159. Its been awhile since it's been that low. I seem to fluctuate between 156 and 183 over the past year.
Yes, so true. My labs range for a normal alk-phos is 40-116. Every lab is different.
So, 3 times the upper end of (that) normal is...
116x3=348.
The highest my alk-phos has ever been is 190 approx. For 3 years all my other numbers have been in the normal range. Only my alk-phos has been continuously high. (I did have a weird elevated blip because of my RA drug. But I'm not on those anymore.)
My doctor was concerned because in 2 years I went from zero fibrosis to a KPA of 3.14. Which I believe is mild fibrosis. Correct me if I'm wrong there. Anyway, that's why they put me on OCA, because of that blip in my numbers, and the increase in my fibrosis in just 2 years.
I think you should do your best not to worry (I know - easy to say!) and repeat test in 30 days. It’s such a short amount of time to give the medicine to work. I know the movement is not what you were hoping to see but I also don’t think its statistically significant. Do you have any side effects? I hope you are feeling good. Hang in there and keep cooking!
Do you feel the same? Better? My enzymes were more elevated than yours but when i started to respond to medicine i did definitely feel better (even though I might not have identified myself as feeling worst before that if it makes any sense)
Well, I guess I haven't experienced that change. I feel the same as before Ocaliva. Maybe a bit more fatigue. Just a smidge. But, I guess that's a good thing. No itching, nothing that consistently stands out as... "This is because of OCA." And honestly, I forget what it's like to wake up feeling really good. I don't feel bad, just... Eh. I have to push myself to go and do. But I'm almost 60. Maybe that's normal, or nearly normal. 🙂
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Worried and stressed out 
Seladelpar update
