AIH Support

Support Group providing support & information for people affected by autoimmune hepatitis (AIH).

[AIH Support @AIHorgUK]

The recent recall of a batch of mercaptopurine in UK https://t.co/RihQSY9PBw

has led to shortages.

We advise patients to order their repeat prescriptions in good time and contact their liver teams if pharmacies can’t supply.

[AIH Support @AIHorgUK]

This is very interesting. Also worth noting that the patient will likely remember what was said (or rather what they think they heard) and importantly how it was said for a long time.

[British Liver Trust @LiverTrust]

Doctors vs patients agenda at appointments - there is often a mismatch of expectations @tom_marjot speaking @EASLnews #EASL2024

[AIH Support @AIHorgUK]

@adyeoman This looks a fantastic improvement in such a short time @adyeoman . Great for patients. As ever communication seems to be key - and having someone who understands the end to end system co ordinating it.

[AIH Support @AIHorgUK]

@GustavoBras @MajaThiele @JHepatology @joostphdrenth That is interesting to note. We don’t have figures either but subjectively from discussions on our patient support group I would say MMF is better tolerated than aza and fewer issues with low WBC. Not sure if the study supports or refutes that🤔

[British Liver Trust @LiverTrust]

We have partnered with @sharphepatology to identify the barriers faced by people accessing liver services in Scotland.

If you are a #liverdisease patient living or receiving treatment in #Scotland please complete our survey: https://t.co/P8WlSPkDYH

#LiverTwitter please share

[Elliot Tapper @ebtapper]

Dose of prednisone for autoimmune hepatitis is the PERFECT candidate for a pragmatic trial @serperm @DrLiver

[AIH Support @AIHorgUK]

@AutoImmuneLiver Thanks for this clear statement. We are seeing MMF being used more (currently as a second line treatment) but at lower doses than used in this trial (500-1000mg seems quite common)🤔 Will be interesting to see if practice changes.

[AIH Support @AIHorgUK]

Great to see a study published in AIH! Thank you @stephentbarclay for such a clear summary.

Will wait and see if practice changes………

[stephen barclay @stephentbarclay]

CAMARO, RCT MMF Vs Aza to induce remission. Higher remission in MMF, similar AE rates, ⬆️ discontinuations in AZA group. Nausea most common reason for discontinuation. Great data - will it change practice/guidelines? Effective contraception if appropriate a must #EASLCongress

[Dr Scott P Davies @ScottPLand]

Also I’ll be presenting my poster today too (FRI-347-YI) showing @MedResFdn - funded work from @LiverImmunoreg1 and @CholestasisDoc regarding Tregs in Autoimmune Hepatitis. Come say hello ^_^.

[AIH Support @AIHorgUK]

@stephentbarclay @adyeoman Both weight gain and diabetes risk are really key concerns of patients with AIH as well so this is very useful info thank you. Steroid side effects are so much more than ‘cosmetic’ changes!

[AIH Support @AIHorgUK]

So useful to have such a clear summary. Thank you @singtomebebey and @adyeoman . We will be quoting from this when people with possible AIH are confused and worried about the early diagnostic process.

[Andrew Yeoman @adyeoman]

And here it is : @singtomebebey first publication!
Congratulations 👏
https://t.co/6bM8Mm5e43

[AIH Support @AIHorgUK]

@MichaelHenegha8 Thank you for posting this. Looks very clear.

Assume for AIH pts unless they fall into any of the criteria in the left hand column then no form of birth control is contraindicated. Or is it not that straightforward? @AutoImmuneLiver @adyeoman

[British Liver Trust @LiverTrust]

NHS Blood and Transplant @NHSBT are looking at how they could improve access to living donor #LiverTransplants. Please fill in our short survey to have your say: https://t.co/F70H2q6zL5

[AIH Association @AIH_Association]

The deadline to register for the Virtual Drug Development Meeting on Autoimmune Hepatitis is 5 p.m. ET Jan. 26. The event is Jan. 27. Learn more and register: https://t.co/H5vsKuYkw9
#aih #autoimmunehepatitis #drugdevelopment
@craiglammertIU

[AIH Support @AIHorgUK]

@adyeoman @AutoImmuneLiver Brilliant Gideon. They are growing up aren’t they😉

[AIH Support @AIHorgUK]

@adyeoman @docdai @WelshGovernment Absolutely @adyeoman . And different patients/HCPs will want/need different approaches. It’s a learning curve for everybody. Perhaps a bit early for targets though🤔

[AIH Support @AIHorgUK]

Reminder to AIH patients in England on immunosuppressants. If you have NOT yet received a letter from NHS or your consultant about accessing covid treatments should you test positive, then do contact your liver team now for further info.

https://t.co/bNNbdASmbx

[AIH Support @AIHorgUK]

Thank you @LiverTrust for pursuing this. Many AIH pts likely eligible for these treatments but were not contacted by NHS (38% in our quick poll) and now know what to do!

[AIH Support @AIHorgUK]

Updated guidance on @LiverTrust website about accessing covid treatments.

Pts in England should contact their consultant if they think they are eligible (most AIH pts are) but have not had letter from either NHS or consultant so far. https://t.co/ejT58gKCb3

[AIH Support @AIHorgUK]

Treatments need to be given within a few days of symptoms starting so act fast😉

Many AIH patients were not identified by the NHS for priority tests nor received guidance from their specialist..
So if you are one of those you will need to initiate the process via your GP.

[AIH Support @AIHorgUK]

AIH patients in UK - remember if you test positive for covid and are on AIH meds you likely fit the criteria to be considered for covid treatments.

Follow instructions in your letter from NHS or your specialist. If you haven’t had a letter contact your GP to discuss treatments.