Cholestyramine

[Amzy411]

Hi all

New member 👋

My partner has rheumatoid arthritis long term since childhood... he has been on leflunomide (arava) for almost 2 years after trying every biological and other medications this is the best one get has tried it's totally transformed him which is great... we have 2 children already but want to have another in the near future... he went to gp the other day to discuss Cholestyramine for wash out of leflunomide but she just brushed it off saying no he would have to stop taking the arava and let it flush out by itself which will take 1-2 years 😣 obviously we weren't happy with that as such a long time to be off working Meds and when we have done our homewOrkney on Cholestyramine. My question is who can actually prescribe him with this would his rheumatologists be the best option? His next appointment with them is in a couple of months just wondering how best to approach them on it...

Thanks in advance x

[AgedCrone]

Definitely speak to your partner's rheumatologist.....When I was on Arava I encountered a GP who had never heard of It, so don't be too despondent with your GP's advice. ..it might not have been100% accurate, although do take heed.

Although I was well past child bearing age I was told one must be off Arava at least 18 months before becoming pregnant, but there are alternative new Dmards, & your rheumatologist will be able to guide you safely. You could also speak to your Obstetrician who should have a good knowledge of any risk attached to Arava being taken by a prospective father.

[Amzy411 in reply to AgedCrone]

Thanks so much for reply I appreciate it 😊 he has tried nearly all off the dmards but arava has really worked wonders for his condition his ruemy said he can stay on his biologicside (humira) and all others Meds plus steroids of needed just hoping they can do the washing out really 😕

Thanks you again

[AgedCrone in reply to Amzy411]

Well after the new baby news today let's hope your little new prince or princess will soon be on its way !

[helixhelix]

I'm with AC on this, it's quite possible the GP has little experience so was covering up for that. Your best place to discuss is your rheumy. They will not want him to take the risk of fathering a child on an unsuitable drug. Once he's clear of drugs you might also want to discuss freezing sperm in case you don't get pregnant quickly and he needs to go back on medication.

[Amzy411 in reply to helixhelix]

Thanks so much for you're reply also appreciate it 😊 will definitely talk to rhuemy

Thanks

[nomoreheels]

Hiya Amzy411, welcome. I just stopped LEF after it was determined it wasn't working, I saw no good reason for going through the Cholestyramine wash out procedure at my age (57). He wants to ask his Rheumy, he's who will prescribe it not his GP. For what it's worth I think his GP was wrong in saying just stop it & let it flush itself out, why should he when there's an alternative, albeit an unpleasant one, given your wish to have another baby? So don't worry too much, unless he has a Special Interest in Rheumatology why should we expect him to know but maybe it wasn't the best advice.

Just explain your wish to his Rheumy & he should be happy to prescribe it for him. It does beg the question though what will be be able to take whilst you're attempting to conceive, given he's tried all the anti-TNF's/biologics & traditional DMARDs, think that over because this will probably be asked. You never know though he may just have one under his belt he's not tried that's safe to conceive on. Do your homework on what he thinks he'll be able to tolerate though... I don't know if you've read this in the course of your research but this link is for treatment in pregnancy although it does touch on males & treatment arthritisresearchuk.org/art.... I don't know their safety profile but maybe the JAK inhibitors available in the UK may be an option, unless there's inadequate evidence them being so new to the market. I don't know about other meds which we're coprescribed in RD, steroids, NSAID, pain relief/opioids, whether he's taking any he's better off not taking but his Rheumy will.

I hope you get your wish as soon as it's safe.

[Amzy411 in reply to nomoreheels]

Yes when we were trying for our first 3 children he was on methotrexate and stopped them for 3 months prior just upped his steroid dose as got pregnant straight away both times... this time they have said he can stay on humira and his anti- inflammatorys plus steroids so here is hoping thanks once again feeling a bit more confident ☺

[nomoreheels in reply to Amzy411]

Ah, I didn't know he's on Humira, it wasn't mentioned in your question. Then I would think if he's got the support of an anti-TNF maybe that (plus NSAID & steroids) will keep him controlled well enough for a few months if you're lucky enough to be able to conceive so quickly again this time. I wish you both the best of luck, & do let us know if/when you have some happy news? (Have you gained another child from somewhere, you said 2 in your question & now say you have 3 lol?!)

[Amzy411 in reply to nomoreheels]

Lol 😂 no sorry this phone is crazy always so many typos and autotext 😂😂 we just have the 3 my apologies 😂

Thanks so much for reply and we'll wishes will let you all know

☺

[nomoreheels in reply to Amzy411]

Don't worry, it happens. As long as you know, it can be embarrassing losing a child when counting them in & you've one more than you thought you should have! 😜

[Scottiedottie]

Everyone is entitled yo own opinion but if the treatment is working so well why sacrifice that to have another child? There are many including me who have not found the right treatment yet after tears of pain. I'm sure I'll be shouted down for saying that. The other thing....leflunomide damaged my liver but rheumo said did not need cholestyramine