Azathioprine

[Elfie1]

Hi all , can anyone tell me if azathioprine is well tolerated? Are there many sideeffects and will I need regular bloods ? Just wondering , not felt well at all lately and prof mentioned the above if I wasn't feeling any better . Thanks Elfie

[Sara_A]

Hi, yes u need regular bloods weekly for 6 wks then 2 weekly then monthly if all ok. And after any dose change u go back to weekly and so on. I seem to have been ok on it no obvious side effects tho am seeing consultant tomorrow and I think my lymphocytes are at 0 so not sure if they will stop it I was hoping for it to be increased cos I still feel awful! X

[Elfie1 in reply to Sara_A]

Hi Sara thanks for replying .sorry you're still feeling bad,do think they might give you one of the New biologics ? I'll ring the specialist nurse to see if I can get an appt. All the best Elfie

[Sara_A in reply to Elfie1]

i don't know? What are these new drugs? X

[Elfie1 in reply to Sara_A]

Hi I'm not sure which one they use for our condition but a friend is on Adalimumab with really good results for rheumatoid arthritis.

[Sara_A in reply to Elfie1]

Hi, I saw the rheumatologist and he's increased my azathioprine to try that before trying a different drug. Also changed me to clopidogrel from aspirin, did suggest daily heparin but I really don't want that had 10 months of that hated it! What do u take for aps?

[Lure2 in reply to Sara_A]

Hi Sara,

I know you have Lupus and also APS. Right? You have been on the Lupus site.

You should perhaps put your own question on our site for Sticky Blood. I believe you will get several good answers.

I wonder if the Rheumatologist is a Specialist of APS? He suggested that you should have Heparin as that is an anticoagulation drug you have already had and did not like. Perhaps you need some other sort of anticoagulation? Clopidogrel I have learnt is an alternative to Aspirin and not an anticoagulation drug. You are a nurse you know.

I suggest you buy "Sticky Blood Explained" by Kay Thackray as she has APS herself and that could be something also to read for your husband as it explaines how it is to live with this illness.

Take care!

Kerstin in Stockholm

[Sara_A in reply to Lure2]

Yes I have lupus and aps. I was only on heparin for my pregnancy . I'm usually just on aspirin.

He suggested heparin daily to help with the headaches as I can't come off beta blockers as I get daily headaches otherwise. My partner is really good he's also in medical profession he's a pharmacist so very handy!

[Elfie1 in reply to Sara_A]

Hi Sara.I'm on Plaquenil. and Tinzaparin injections twice daily.bit of a pain but worth it if it helps with the headaches. Elfie

[Sara_A in reply to Elfie1]

Oh my goodness how do u cope with twice daily injections I hated the fragmin, as u say tho u kind of get to the point u will do anything! Do u see an aps specialist or just a rheumatologist? I see just rheum and he treats both but a few people have mentioned that should see an aps dr specifically .

[Elfie1 in reply to Sara_A]

Hi Sara yes I see a rheumatologist in Leeds I'm not sure whether he is a specialist but he is very knowledgeable about Aps . so he'll do for me.I must admit I run out of spaces to inject at times,but I use Arnica cream. which helps to heal the bruises quite quickly.otherwise I get on with life as best as I can.all the best Elfie.

[MaryF Administrator]

Please make sure you discuss this thoroughly with whoever is monitoring your Hughes Syndrome/APS care and anticoagulants: evidence.nhs.uk/formulary/b...

MaryF

[Elfie1 in reply to MaryF]

Thanks Mary I will do that .Elfie

[Zezes-nan]

I was on azathioprine for quite awhile, had more frequent blood tests but no side effects as such. Just have to come off it very slowly

[Fusch]

Hi, I might be going to start on this drug, in the hope it might help my brain eh h shows 'hypo perfusion in the temporal lobe' and I have terrible memory problems