RA with Gilbert’s syndrome (GS), does Methotrexate or other DMARDs make side effects worst?

[RedPip]

Dear All

I have RA and Gilbert’s syndrome (GS), it is estimated at least 1 in 20 people have Gilbert’s syndrome.

Gilbert’s syndrome (GS) is a condition in which you have higher than normal amounts of bilirubin in your blood due to not have enough of the liver UGT enzyme to modify the bilirubin at the normal rate.

The British Liver Trust web site under Gilberts syndrome, mentions that although it is uncommon, there is a possibility that lack of the UGT enzyme can have an effect on the way you respond to certain medications.

I am trying to find out how many people also have RA with GS and are taking Methotrexate (or other DMARDs) and found GS effects are made worst by methotrexate ? (see British Liver Trust and NHS web sites for list)

Information on GS can be found on :-

British Liver Trust

britishlivertrust.org.uk/li...

NHS web site nhs.uk/conditions/gilberts-...

I have some of the of the common symptoms / side effects that is attribute to GS , these symptoms appear to be made worst by taking Methotrexate which I have been taking since 2013 , originally I was on 25 mg and managed to get this reduced to 15 mg once a week because of side effects, to help reduce the side effects I take 5mg Folic Acid once a day except on the day taking the Methotrexate.

I also inject Cimzia every two weeks which does not appear to cause problems.

After taking Methotrexate I have found that it appears to take several days (4 days) for me to feel that the side effects have reduced back down.

I look forward to hearing from others people with GS

[oldtimer]

I can't find any articles exploring the issue of having Gilbert's Disease and needing to have drugs like methotrexate which are processed in the liver.

It's always a big problem when you have a condition which is fairly rare like yours that there are too few people to do any studies that would be valid. Unfortunately, you will just have to provide your own experimental evidence!

[RedPip in reply to oldtimer]

Thank you for your reply.

It's the only to date, and I am surprise no one with GS has replied.

Thank you again

[Molly717]

Hi, I was told by my gp years ago that I had GS but she said it was nothing to worry about. I have since been diagnosed with psoriatic arthritis. I started on methotrexate but my blood test results always came back abnormal, white cells too low and liver function not right so was taken off it. I felt very washed out on it too. Went on sulfasalazine and same problem. I'm now on Otezla and having some side effects.

[RedPip in reply to Molly717]

Thank you for your reply , as a matter of interest do you also take Folic acid to help with side effects ?

You are the first with GS to reply, hopefully if we can get more replies we may be able to establish a link with the various drugs used and having more adverse side effects if you have GS. Hopefully we then may be able get some one or organisation like NRAS to take this up with say NICE on our behalf.

Unfortunate, it would appear at the moment, GPs and Rheumatologist do not seem to recognise that DMARDs etc can possibly put additional load onto the liver etc and cause symptoms such as the list extracted from the British Liver Trust and NHS web site, we can only assume the list refers to people not on any drugs but have GS, therefore with drugs you would assume more adverse side effects :-

““While jaundice is the only recognized clinical symptom, many people with GS report a number of common symptoms or effects they attribute to the disorder. This is why they may have a blood test in the first place.

Such symptoms include:-

feeling tired all the time (fatigue)

loss of appetite

feeling sick

nausea or dizziness

abdominal pain

irritable bowel syndrome (IBS) – a common digestive disorder that causes stomach cramps, bloating, diarrhoea and constipation

difficulty maintaining concentration and thinking clearly (brain fog)

a general sense of feeling unwell

very dark urine

Although it is uncommon, there is a possibility that lack of the liver UGT enzyme can have an effect on the way you respond to certain medications, such as medications for high cholesterol.””

End of extract

[Molly717]

Gosh yes this is very interesting. When I was on methotrexate I took folic acid too but I haven't been advised to take it whilst on Otezla. I am suffering badly with a constant upset stomach which I have been told can be 'normal' on this med. The other symptoms of GS from the BLT are very similar to side effects from the drugs and some of the condition we/I have too. Just to add I am also seeing a lipid consultant as I have high cholesterol (8.9. Healthy lifestyle, bmi 23 etc etc!) and might have to go on statins. Your post has made me think .......