Azathioprine dose

[WendyWoo50]

First a little background: I have been on 200mg of Azathioprine, for a number of years. All that time my weight has been stable (too much but stable) at 17stone 3lb (110kg) but having been diagnosed with Type 2 Diabetes (since the pandemic) I have lost 2 stone (13kg)

Azathioprine is dosed at between 1 and 3mg per kg of weight. My dose was not altered. I am wondering if I am on too higher dose for my system now. I think my immune system may be ‘over suppressed’

Before Christmas, I had a simple cold that I got over quickly. Boxing Day I started a migraine that lasted 9 days. (They doubled my nightly migraine pills). Then I collapsed on the floor. The next day I started a chest infection, then was given a prescription for Amoxicillin. I then had Bronchitis. Then felt better for a few days then started shingles. Then another chest infection (another course of Amoxicillin) which caused awful diarrhoea. Then once I finished the antibiotics I started coughing up ‘nasty stuff’ again.

Apart from a few days I’ve been in bed all year. The shingles have dried up now but I still feel absolutely exhausted. Unable to do anything. I am managing to shower each morning and go down to eat dinner each evening finally now but most of the time I’m in bed.

As those of you who know me know I push and always somehow keep going. But I have nothing to push with.

Obviously when this all started I stopped taking the Azathioprine (so my immune system could fight) and doubled my prednisone dose from 10mg daily to 20mg. This is supposed to be a short term solution but has been going on for sometime now. I don’t know if the other conditions are flaring i just know I feel really ill. (Lupus, Sjogrens, APS, Fibromyalgia)

My GP has been very good but is limited in her experience with people like me. It is impossible to contact my Rheumatologist.

So, has anyone had experiences like me, any advice?

NB

My dose of 200mg of Azathioprine is almost 2mg/kg.

What dose are other people taking and how is that working for you?

Thank you for your time I look forward to hearing from you 💋 x

[MaryF Administrator]

Hi, not a drug I have ever had, I do advise that you go back to GP or urgently get in contact with you prescribed this, also perhaps ask your GP to do some blood tests to check what is going on with your Thyroid, Folate, B12, Ferritin and D etc as any of these not being up to scratch will make you feel tired and probably more inflamed, let us know what they say. MaryF

[WendyWoo50 in reply to MaryF]

Thank you. I do have the private tests that you advise and they are always fine. I’d like that to be an easy solution. Lol. Except vit D which is always low. X

[Star13 in reply to WendyWoo50]

If Vit D is always low then I’d get the Better You spray. I use the 4000iu one spray a day at night and it pushed my level up well.

What’s your D level? They do a test you can order and depending on the result will send you a free spray with instructions on what dose to take.

[lupus-support1 Administrator]

I am sorry to read your news. IMHO, you cannot be left unsupervised on AZ. I would return to your GP and ask for a referral to see another rheumatologist. The only alternative, which frankly is a last resort, is a private consultation.

It’s an utter disgrace.

With good wishes,

Ros

[GinaD]

So sorry to read this, Ditto regarding insisting on speaking with a rheumy and/or prescribing doc and/or private consult. Something is out of whack and must be identified! Good luck to you!

[henyrjonze]

I don't want to alarm you, but one of my best friends was on this same regimen, got lung cancer, and died. Too much immunosupression can cause monstrous probllems. It sounds as if you've already had your share. You need to get an MD opinion (and maybe a second opinion as well) about whether this drug regimen is dangerous.

[WendyWoo50]

I’m so sorry to hear about your friend Henry

Tthank you all. I’ve spoken to my GP today and temporarily lowered my dose. While on the phone she sent an E-mail to my consultant to ask for an urgent review. X

[GirlfromTennessee]

i take it & suppose to take every day but only take it 2 times a week. I’m kinda scare of the med but my Rhemy insists on me taking it!! I’m really not sure why I even take it. I’ve ask but never got a satisfactory answer. I have my blood checked every 3 months. I was told very hard on the liver

[WendyWoo50 in reply to GirlfromTennessee]

Azathioprine is an immunosuppressant drug. Which means that it suppresses the immune system. It is given to those who have either had a transplant (to stop rejection) or to those who have autoimmune diseases (to stop the immune system from being overactive and thus fighting our own bodies). In other words for those with an autoimmune condition it dampens down the ‘fight’ going on in our bodies so that the condition eg APS can be kept under control.

In a few cases it can affect the liver and that is why when on it you must have 2-monthly blood tests, to check all is ok. So long as you drink plenty of water, have little alcohol and eat a good diet most people are fine.

If I have an infection or need antibiotics etc then I have to stop taking Azathioprine for a short while to allow my immune system to fight and I double my steroid dose for that time (petering back down once the antibiotics are finished or the infection has been dealt with) and restarting the Azathioprine. This is called ‘Sick Day Rules’ and were given to me by my consultant

Azathioprine I believe, takes a few months to build up in your system before working to its full potential it is dosed at between 1 and 3 mg of drug per 1kg of body weight therefore if you weigh 100kg you will be asked to take a daily dose of between 100mg and 300mg.

Bearing all that in mind, unless you have been instructed to only take it twice a week, which I think is highly unlikely, I do not think there is any point in you taking it.

You really do need to speak with your consultant ASAP and tell them what you have been doing. I think by ‘making up your own rules’ you may be doing more harm than good to your immune system. It won’t know where it is or what it is supposed to be doing. It will cause confusion , which could even mean that your symptoms worsen and your immune system is messed up.

No one can make you take any medication, it is your choice but if you do take a medication it is important that you follow instructions.

I don’t wish to be alarmists, and I am no doctor but what you said concerns me please talk to your GP and ask for some advice However here in the UK it is a consultant who is responsible for prescribing and overseeing the use of Azathioprine and the GPs only know the minimum about it. As I said in my reply above; my GP e-mailed my rheumatologist when I was on the phone to her.

Maybe you could ask to be in the lowest dose at the beginning of 100mg/kg (if you weigh 100kg that would be 100mg of Azathioprine (2 x pills) see how you get on - with a view of increasing it slowly to 3 then up to a maximum of 6 pills a day BUT THAT MUST be under instruction by your rheumatologist consultant.

You must please ask him/her to explain why you are prescribed it, how much you need, why it is important to take it daily, your concerns about your liver and anything else including ‘Sick Day Rules’

Then if you do not want to take it - discuss alternatives. There are other drugs out there!

Your consultant does NEED to know exactly what you are doing re dosage at all times as if you needed emergency care it would affect it. Please please please make an appointment.

NB This reply is only based upon the knowledge I have picked up over the years, I’m no doctor.

Please let me know how you get on. Good luck 💋 x

[WendyWoo50]

hello everyone. I completely lost this group and couldn’t find you. Then today I had an email ! After all this time. I’m glad to be back. I missed you all xx xx

[HollyHeski Administrator]

Welcome back, we missed you too. How are you?