Hello started using colestyamine. Yesterday morning any one no how long it takes to kick in I’m desperate

[Richard35]

Hello started colestyramine yesterday for severe itching does any one no when it will start working this is grinding me down itching please desperate Richard

[butterflyEi]

Hi Richard, Colestyramine does take a while to get into the system and we are all of us different how long it takes to settle things down for us. From your picture your itch is in a similar place to where mine was at its worst. I would think up to 10-14 days for you to feel any real benefit although hopefully you will notice a lessening sooner, I am sorry I hope it does not take that long for you. Your doctor might be able to give you a more difinitive answer.

May I suggest though that you do not take the colestyramine in water, it is vile. I used to take mine mixed in kefir and banana or orange juice. If you have been prescribed 2 sachets best to take one before breakfast and one after breakfast. Do not take any other medication for at least 6 hours either side of this to give eveything its best chance of working. It was the PBC Foundation that gave me best advice on how to take it but I added in what to take it with.

A couple of things that may help over the next few days, wash the worst area daily, apply a cream, I also found the 2% menthol derma cream very helpful, this can be bought over the counter. Somehow it seems to confuse the skin for a while. Keep the skin supple. There now seems to be some chatter in the medical profession that certain foods that irritate the gut can add to the woes of us itchers. Sugars, dairy and wheat products can be viewed as irritants dependant upon the person. Take a look at your diet, do you have processed foods? these have a lot of hidden sugars and salts. Drink lots of water to keep well hydrated.

I am still an itcher no matter my diet so I am not totally convinced however I do believe the medical profession will find a way through for us as there is a medication just about to finish trials, I think it may be called Seladelpar but currently Colestyramine (Questran) is the first line of defence. Take heart there are other medications available. I currently take three other medications to control the itch.

best wishes and I hope you find relief soon.

[Richard35 in reply to butterflyEi]

Excellent thank u

[JaneEyre55]

Hi Richard, I've had PBC and AIH for over 10 years now. I was taking Cholestyramine 2x a day, mixing it with water just because it is faster. I space it out about 4 hours from taking any other meds. It took a few days for the itching to subside and once it stopped I was in heaven, especially since I wanted to peel my skin off prior to taking it. I do not drink any alcohol and quit smoking. I've been able to reduce the Cholestyramine to 1 packet a day recently and have not had any itching. I wish you luck in your journey.

[Richard35 in reply to JaneEyre55]

Excellent u made my weekend thank u much appreciate

[PBCCarol]

I never got any relief from this medicine although my itch disappeared after I started URSO. Another person mentioned Sedelapar trials helping some with not itching- the trial is for another alternative to adding Ocaliva but thee are several trials that are specifically aimed at treatment of itching. Talk to your healthcare team to see if you are eligible to participate.

[Richard35 in reply to PBCCarol]

Thanks on urso have been 3 months

[Wocket]

Other medication should be taken at least 60 mins before or 4-6 hours after. This is the instructions given on mine. I take it with fruit juice because I find it grainy if it’s just in water. My itching started to improve after about three days. I use ice packs on very itchy places. I get itching mainly on my hands and feet. Hope this helps.

[Richard35 in reply to Wocket]

Yeah thanks does gonna screenshot your advice much appreciated