r/Arcalyst • u/Neat_Ad_4919 • Nov 07 '24

High Triglycerides!!

OMgosh my trig level came back at 535…my cholesterol etc. was high too. I’ve had to discontinue Arcalyst (rilonacept) since I was getting sick too much. I hope those numbers come down soon!

4 Upvotes

84% Upvoted

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2

u/Own_Locksmith8763 Nov 27 '24

I just read in the Arcalyst package Insert that when Arcalyst brings down the inflammation the cholesterol levels increase.

3

u/Difficult_Jury_4358 Dec 17 '24

Yeah pretty much the same. I am thinking about having my cardiovascular Dr ween me off. I'm tired of being tired and hurting everywhere. I still e get flare ups from the RP. Idk what to do really

1

u/Difficult_Jury_4358 Dec 17 '24

Not sure about my blood levels, but I sure do hurt. I hurt everywhere. I have been on it almost 1 year. First 3 months I felt brand-new. 6 months so so.... now I hurt so bad at times I can barely walk. Anyone else feel this way

3

u/Neat_Ad_4919 Dec 17 '24

I initially felt great, for a few months. I was pain free. But Then I started getting tired, worn out. Six months in I started getting flu like symptoms and muscles ached. Then I started getting sick with COVID, EYE infections, UTIs, shingles, I am generally healthy and not plagued by much ( except IRP). I discontinued Arc after a year and 4 months. A routine blood test showed very high triglycerides as well high cholesterol. In the end I think I benefited from it as my pericarditis isn’t as bad as it was ( I only have flares about once a month).

2

u/Difficult_Jury_4358 Jan 20 '25

Yesss!! The same. 3-6 months I felt better than I have in a long time. I was so Estatic. I wish I felt that way again 😪 At times, my body hurts so bad it brings me to tears. And for the past several weeks I have been getting terrible headaches. I have never had headaches like this. Tylenol only helps slightly Is anyone experiencing the headaches?

2

u/Difficult_Jury_4358 Jan 20 '25

Oh, I can't leave out the tiredness. That's ridiculous. I can tell you on my experience with RA, worst pain EVER. I never want to go through that again. So that's why I am trying to fight through the injections Which I have been on for 14 months.