Questran Light, (cholestyramine) and other meds - timings of taking advice.

[Jo_Br]

I finally have given in and requested Questran Light, no proper sleep for over a week no with the intense itch, the daytimes not any difference in itch but I can think about other things, chat etc. I was so low I think I would swap all this for any side effects for a bit. Really hope they will help.

Also have had my calcium/vitamin d tablet changed as the ones prescribed at the hospital say not suitable for those with a peanut allergy. These now are twice a day and I also have a blood pressure tablet.

I am taking Urso 150 mg 3 times a day and its half dose that it should be, this is being changed for next script (again by GP who read the PBC leaflet thoroughly and keeps ringing me to change things to help, bless his heart)

He offered me a one a day tablet but I am worried a high one of dose may give me issues.

Questran is prescribed as one sachet twice a day

Urso with food three times a day

Calcium twice a day

BP tablet once a day always at the same time, so I have been having with breakfast along with first Urso and calcium.

So Questran states as you will know if you take it, that it should be taken 1 hour after other meds, or 4-6 hrs before meds.

It does not state with, before or after tablets.

So how best to do this regime anyone? Can I take Questran with a biscuit or something and can I take it at night or is it best to take at different times?

Sorry from no tablets to rattling is affecting my reasoning hehe!

[Hidden]

Hello Jo_Br.

I've attached a patient info leaflet for Questran (came up with the same even when Questran Light) but if you have a branded form you should have one in the packaging.

You can take the urso when you want really, some take it all at once, some in spaced out doses but in the early days it is said with PBC best started in spaced doses and then you can take all at once after some time. Probably due to the fact that you can have initial side-effects from the urso. I started on 2 x 600mgs back in December 2010. I found mine best taken one at breakfast, one at teatime, both times with food. A few years into taking urso the 300mgs were withdrawn so I ws given 4 x 150mgs. I can double up on them but I've experimented with the urso over time and I find for me I feel better taking it 4 times per day. I found taking the urso all in one go following breakfast some time ago over a few days, all it did was cause me to itch later morning, something I never do. I think in my case all at once isn't a good idea.

I know on some of the urso leaflets (I've actually had 3 different pharmaceuticals from 2010) it did state the usual in PBC can be for a patient to take the whole lot before bedtime. So in your case if this is what you are going to do, Questran several hours before then. If taking urso in spaced doses, probably means take Questran an hour or thereabouts after the urso. Basically it is so that the urso can get into the system due to the sort of med Questran appears.

I've only ever taken the urso, no other medications and not as yet asked for what seems the firstline for itching Questran (due to certain side-effect it can have but that is my way of thinking).

[Jo_Br in reply to Hidden]

Yes I am happy with three a day Urso, my thinking is breaking my body in slowly, but the way the itch is my GP offered it yesterday and I declined, but three weeks of itching and its getting worse. I care all day and night as well, I just sat rocking like a demented being last night. I read about the aspartame, (hugely irked that it is in the Questran) however I would have my head chopped off by lunchtime today my eyeballs are itching, every body part, inside and out, so when he rang to give me the new calcium, I asked for Questran. I think if I am one of the lucky ones it works for and side effects are manageable I will get the Urso, no side effects so far after 9 days so hoping the higher dose will be the same and then go to two a day and maybe try once a day.

Thanks for replying @peridot x

[butterflyEi]

HI Jo_Br

Hi Jo

I am now medicated with URSO, Questran Light and Rifampicin as well as a statin. All have restrictions on when and how best to take the medication so my regimen is to wake early and take the Rifampicin. Just before breakfast I have my first sachet of Questran and then after breakfast about 10.30-11.00 I take the second sachet. Here I would refer you to the members section of the PBC Foundation Bear Facts magazine and the article by Professor Neuburger in the Spring 2015 edition link below. Here he gives an idea of when best to take the medication. In contrast to his advice when I first started taking the Questran I posted on here and someone said that they took both sachets before bed.

pbcfoundation.org.uk/upload...

I am glad to read that you have a helpful GP. I take my vitamin D in spray form and have recently upped the amount of calcium I get from dairy products.

As to the itchy eyes mine was caused by dry eye, on the recommendation of the optician when I saw him back in January I purchased and eye bag (link below) and I have been able to stop using the eye drops which were not really working for me any longer. This is not just for blepharitis.

amazon.co.uk/MGDRx-Eye-Bag-...

best wishes

[Jo_Br]

Thanks butterflyie, that raises more questions, if I take it first, it says on the leaflet, not to take any meds 4-6 hours after which interferes with the 3 times a day Urso, unless I take 2 at lunch. I have two sachets to take, they just say twice a day, so I presumed one in the morning and one at night. When do you take your Urso and any other meds?

I am taking it tomorrow for the first time as I have a rare day off and would rather not get any side effects while out, especially if bowel ones.

Thanks for the info on the eye bag, I thought it was just 'the itch' as rest of my body is doing so and eyes seem normal in wetness.

[Jo_Br]

I found a few eye bags for dry eyes on there, this one looks good? A little cheaper too and recommended by Opticians amzn.to/2nNE779

Isn't getting a new condition costly?

[exy21]

I had that problem with questran but someone on here said take 2 together. They were on 3 a day! So I do first thing when I get up. Then space other meds throughout rest of day after 4hrs. Hope helps.

[Jo_Br in reply to exy21]

That might work well.

[Aussielouise]

Just been told by a lady from Canada, that over there they're told not to take it with food.

Which is not what I was told.

[Jo_Br in reply to Aussielouise]

The link above said one before as the bile is at its highest as we have fasted all night, then one after food. Just hope they work for me and no unbearable side effects, first one tomorrow...eek!

[Aussielouise in reply to Jo_Br]

Good luck! Hope it works well for you

[lizagood1]

Hi,

My feet and hands itched immensely 3 yrs before diagnosis of PBC. I was prescribed steroid creams and a very strong one burned the the skin off my feet in the end it was the most painful episode while the new skin replaced it, this helped the itching but didnt eradicate it. Thenwhen diagnosed with PBC I was prescribed Questran I haven't looked back. No itching on hands feet or arms. I have breakfast and take 1st dose of Urso an hour later I take Questran. When I've forgotten the Questran the itching returns quite quickly. It worked for me, I still have prickly skin but nothing like it was. I think it's worth trying as you have nothing to lose. I couldnt take Urso all at once as it made me feel really ill I take it 3 times a day. Hope it works for you.

[Jo_Br in reply to lizagood1]

Oh thank youlizagood1,

Do you just one Questran, I have two to take.

I just tried the first, absolutely disgusting!! Not the taste so much the texture. Managed to keep it down and can't face breakfast or another one after.

It better work!

[lizagood1 in reply to Jo_Br]

Hi I take one at the moment but I think I will progress to two soon as get a bit more itching but nothing serious. Yes they are disgusting, like drinking wet sand, you can add juice to it. I always make sure I either have something more palatable to drink after or eat one biscuit after. I really hope it works for you. My chemists round here told me they couldn't get it, but my local Morrisons have no problems. Good luck xx

[Jo_Br in reply to lizagood1]

I have been told two increasing to 4 a day. Not sure I can do that! Its horrendous stuff, wish they still had the tablet form.

[Jo_Br]

I had second at 10 and politely put, lost the majority of it. I never wanted breakfast after the first one, but had to take. I feel like a baby as I could not face it and gagged the whole time and then lost all that effort.

I am not alone but this condition is proving to be rearranging all my usual strong qualities and resolve.

I said yesterday I would do anything to stop itch, but what a price to pay! Hubby has gone to get different juices and fizzy water/tonic I googled that these may help. Also drinking through a straw avoids the black teeth side effect, not mentioned on here, but read on several IBD forums.