elafibrinor

[Dexiedog]

hi

has anyone started this medication for pbc? I’ve just started 80mg of elafribnor with a 1000mg of Urso also…

Just wondered if anyone has had any good results with it

thanks

[DonnaBoll Administrator]

I know there are great results from this drug in their clinical trials. Even though it's new on the market, I'm hoping you get the same result. Has Urso not brought your numbers down?

[Dexiedog in reply to DonnaBoll]

No nothing has helped yet, I got diagnosed 6 years ago, fingers crossed for this drug

Thanks

[DonnaBoll Administrator in reply to Dexiedog]

Please let us know the next time you get labs drawn.

[Dexiedog in reply to DonnaBoll]

Thanks, 2 weeks I’m having bloods again. No urso hasn’t done anything for me, I’ve literally tried everything.. there’s another new drug I can try and nasal billery drainage.. then consultant said if nothing has worked it will be a transplant 😬

[DonnaBoll Administrator in reply to Dexiedog]

I hope before he even begins to talk about transplant that he gives you a try of Ocaliva or fenofibrates. Now the drug Seledelpar is on the market with very good results being shown. In my opinion, having labs drawn every 2 weeks is really close together. The Standard of Care suggests every 3-6 months. Little will change in 2 weeks time giving you a sense of not making any progress getting those numbers down. Not sure if we talked about this before but please be sure you are taking the right Urso dose. It is always - and only - based on your body weight. 13-15mgs/kg of body weight.

[Dexiedog in reply to DonnaBoll]

No I’m not having bloods every 2 weeks.. I have bloods in 2 weeks that will be 4 weeks from starting the new medication then every 3 months to check levels and kidney function as there’s a chance it can interfere with kidney function. I can’t have ocaliva until they can get my itch under control, as for the fibrate meds they give me a rash from head to toe!! I’ve also tried light therapy that did nothing for my itch either. I take 1000mg Urso as per my weight

[DonnaBoll Administrator in reply to Dexiedog]

Sorry for misunderstanding... the increase in itching has proven to be a common side effect of many who take Ocaliva. I hope you get some relief from the itching.

[Dexiedog in reply to DonnaBoll]

Me to, thanks

[Klross]

i was diagnosed with PBC in 2013. Ive been on 1000 mg Urso ever since. It brought my ALK phos down but never into normal range. Im stage 1 .

I started Iqirvo 3 months ago. In the first month it brought my ALK phos from 241 to 165 and the second month from 165 to 135 and the third month 135 to 106.

However, it did raise my ALT and AST out of the normal range. My dr had me stop my 5mg Crestor i take for high cholesterol. They dropped , but were still out of normal range. He was not too concerned and will monitor those. He was extremely happy with the lowered ALK phos

The only side effect Ive had was a weight gain of 5#.

I get the medication covered by the PAN foundation. Otherwise it is very expensive even with insurance.

I hope this helps.

[sleepytink]

Im waiting for it at the moment, how is is going? side effects? also where are you ?

[Dexiedog in reply to sleepytink]

I’m in the uk… side affects I’ve had have been bad cramps in my legs and hands, servere headaches which I have had botox for at the hospital which has been helping but this new medication has bought them back bad!! Also nausea just comes on out of the blue, hopefully they pass but at the moment I could quite easily stop them.. my body just doesn’t feel the same at all. Everyone’s different so hopefully you won’t get any side affects fingers crossed