More medications

[P13jne]

Hi can anyone give me a loan of a magic wand please? I’ve been advised to take a new medication to help with the dreaded itch.

It’s called Colesevelam 625mg. The problem is, I’ve to start with 1 tablet twice per day working on adding 1 more tablet after each week until I reach 2 tablets 3 times per day.

The prescription says take with food, avoid other meds 4 hours prior and after taking.

There’s no way I can take Urso in this time scale so this is where the magic wand can work wonders 🤦‍♀️🤷‍♀️.

Is it just me with brain fog or is there another way to fit all the meds in, including levothyroxine?

Think I’m gonna be setting the alarm during the night to get up, have a snack and take meds.

Thanks for your help and hope everyone’s having a better day than I am. Jane xx

[Hidden]

HiYou

are right, a magic wand would be very useful. You could phone your consultant's secretary and ask her to speak to him to see what you should do. Thinking of you as always. Love and hugs Lynne xxxx

[P13jne in reply to Hidden]

Hi Lynne, guess we are in the non sleep group together tonight.

Ye I’m going to have to speak to my consultant. It’s awful knowing your life is in their hands when they can’t prescribe meds that will work in with your already prescribed list, that they advised you to take.

Oh well. Hope you’re well my lovely, rest up and hopefully you will fall asleep soon.

Jane xx

[Hidden in reply to P13jne]

Hi

Hope you slept well, no sleep for me. Love and hugs Lynne xxxx

[P13jne in reply to Hidden]

I slept well. Hopefully you will nap this afternoon my lovely. Jane xx

[Hidden in reply to P13jne]

Hope so. Love and hugs Lynne xxxx

[Hidden]

Im terrible with my meds, dont really read anything other than how many a day. I bung a whole load together on morning and a bundle at night. I know its probably wrong but fed up with it all and every time another pill gets added to my daily bundles.

Take care xx

[P13jne in reply to Hidden]

Thank you angel, it’s becoming ridiculous. This regime doesn’t allow for Omeprazole either. May just do what you do. Hope you’re doing well my lovely. Jane xx

[Hidden in reply to P13jne]

Its lanzoprazol im on. I can go all day without eating a lot of the time so if i followed directions, then i probably would not take any tablets. I use to take them all in one lot but changed it to morning and night. Im 45 and got one of those tablet things that i remeber my gran using. Too young to be rattling but needs must. It seems that they just keep adding to them. Off the steroids for a bit so thats reduced amount but added another antibiotic to night time ones.

Best of wishes

Angela xx

[P13jne in reply to Hidden]

Angela, I’ll try the morning and night idea. I used to take urso 3 tablets in 1, then they added another 1 so I then split them to 2 and 2. I’ll just take them all together. Thanks for the great advise.

I’m glad you’re off the steroids for a while. 45 is very young too. I’m 53 and struggling to cope with PBC and thyroid. The thought of the outcome for my shoulders being rheumatoid arthritis isn’t filling me with joy either.

Take care my lovely. Jane xx

[Hidden in reply to P13jne]

They have done tests for rhuematoid arthris on me as i tested positive for the rhuematoid factor. Thankfully they concluded that it is osteoarthritis i have with my shoulders and hips being the worse.

Fingers crossed that you dont have RA and hoping you feel better soon . Xx

[P13jne in reply to Hidden]

Angela I’m hoping but I’ve had physio and didn’t make a difference either x

[butterflyEi]

hi P13jne

I have been using cholestyramine (Questran) since 2014 but recently have been unable to get this, something to do with production, so I have been prescribed Cholestagel/colevesalam instead. I went from the 2 sachets of Questran straight to 4 cholestagel in the morning with breakfast and if I don't feel like breakfast I take them with a handful of nuts or a banana or both. I also have time constraints with Rifampicin (prescribed for the itch) so wake in the middle of the night for that leaving 4 hours at least before Colesevelam. I take other medication for other things lunchtime leaving the URSO for dinner.

I assume your levothyroxine also has a time constraint ????

This piece is taken from medicines.org.uk/emc/produc...

If your doctor suspects that Cholestagel may have an effect on the absorption of the other medication, you may be advised to take Cholestagel at least 4 hours before or at least 4 hours after taking the other medication. If you need to take other medicines more than once a day, remember that your Cholestagel tablets can be taken once a day.

This UK website PIL does not of course mention PBC specifically.

Also worth noting is the cautionary on vitamins A D E & K for which I take a multi vitamin without iron by Higher Nature sourced from Bodykind.

We are so often given different advice to others I wonder if you could check with the specialist, hospital pharmacy or perhaps the PBC Foundation could give you some wisdom on this, maybe worth a phone call or email.

[P13jne]

Hi ButterflyEi good to hear from you again.

I was initially prescribed the sachets but yes they’re unavailable now so that never got off the ground.

My chemist and consultant then prescribed the cholestagel (horse pellets) instead.

I’ve to work up to taking 6 per day. My appetite is rubbish as it is. But now it looks like I’m gonna have to move into Tesco’s to keep me going 🤦‍♀️.

My daughter works in a pharmacy so she’s looking into it to see if there’s a time plan that can be worked out.

Have these tablets helped you in any way?

I’m also about to be checked for rheumatoid arthritis so no doubt that’ll be more meds for that.

I feel like a 1 man band as I rattle with all the meds I take 😂.

Hope you’re doing well my lovely.

Jane xx

[Gleision]

Hi. Ive always taken my meds together. Before transplant and now several years post tx, with no problems.

However I appreciate not for everyone, as each of us has slightly different problems as well as PBC.

[P13jne in reply to Gleision]

Hi Gleision. Ye I’m beginning to get into that mind set. I’ll just have a lucky dip. Hope you’re well my lovely xx

[mrspeffer2]

Morning....Yes, it is a hassle to live on a meds time schedule. I find the doctors really have no clue about the prescriptions they write. Don't know what you call them in the UK, but here, i speak with my pharmacist. They are really great at figuring out what can and cannot be taken together. I do get up in the middle of the night to use the bathroom. So, I started taking my stand alone Thyroid meds then. That way, I go back to bed and can have caffeine

(coffee) with a creamer when I awaken. Best of luck with this. I really hope this new med reduced or better yet, illimates the itch for you. Be well

[P13jne in reply to mrspeffer2]

Mrspeffer2 I have just spoken to the pharmacist and she’s helped with a time plan. I just need to add another 5 hours into my day 😂. I’m sure I’ll muddle my way through. Hope you’re well my lovely xx

[Shezza123]

Hi , I was just wondering if your new medication for the itching as worked ? I am seeing my doctor today with review on if upping my Urso medication as helped with itching or if I need to start something else . Just wondered how you’re getting on with it .

Thanks sherrie

[P13jne in reply to Shezza123]

Hi Sherrie, sorry I’ve just seen your comment. Had visitors staying my lovely.

I honestly haven’t given the tablets a chance. I stopped taking them. I’m going to restart them after New Year as juggling so many is cracking me up. I was prescribed aqueous cream with menthol. I find this helps after I’ve come out the shower.

Hope you’re coping with the itch and the new meds work. Jane xx