Platlets

[JaneI_1]

Has anyone experienced platlets drop with lupus or on Azathioprine. Mine have dropped not feeling right today but not sure if it’s because I’m drained or if it’s something else? I’ve never experienced platlets dropping before.

[ButterflyAsh]

Hi I had platelets drop due to my lupus attacking it...the medical term (itp) I felt very weak suffering from anemia and wasn't taking my medication regularly.They admitted me in and put me on two platelet bags as well as immunoglobulin drips as I was on next to none so it was very dangerous and I had alot of blood hemmoridge.Im now being treated via a haematologist under a treatment plan that consisted putting me on a very high dosage of steroids currently being tapered down as well as introducing me to a new drug mycophenolate as well as what I take hydroxchloroquine.Its best you you speak to your rheumatologist about itp?

[Babsy2]

Hi, I have Lupus. My platelets dropped to 18 couple of years ago but started to rise again. I now sit between 40/44. Speak to your consultant.

[sjm1982]

Hi Oakley_1, I have lupus and ITP. I started on Azathioprine last November to treat my lupus. But my rheumatologist and haematologist took me off it in May this year, as my platelet count was dropping. They suggested Rituximab as an alternative to the Azathioprine, which hopefully has less negative impact on platelet count. I just had my first Rituximab infusion last week so can't comment on how it's going, but perhaps you could speak to your rheumatologist about different treatment options to Azathioprine? Good luck.

[Babsy2 in reply to sjm1982]

I have had Rituximab, afraid it didn’t work for me. I also have ITP and SLE.

[Gre3neyedgirl in reply to sjm1982]

Good luck with your rituximab treatment. Sadly it didnt work for me on it being used to treat Rhumatology symptoms but did work the first time I had it when used for platelet issues about 5 years ago.

[LilyMistri2]

I was on azathioprine for 25 years at least. I didn’t have any big drops unless I was ill and I don’t remember those drops being very bad. Maybe you’re having a dip in lupus. Speak to your consultant and keep well. The stresses of the pandemic will affect your overall health for sure. X

[Jmiller623]

Yes. Dropped from 300 to 150. I was also found to be allergic to Azathioprine. Reaction was being masked by steroids. Once I stopped azathioprine, my platelets recovered immediately. It’s known to drop cell counts. I doubt that’s why you feel off but I’d let your physician know anyways so there’s documentation.

[JaneI_1 in reply to Jmiller623]

Hi, I think this is what has happened to me! I heard from consultant today and since withholding it my bloods are fine more normal range! So got to go back on Azathioprine and get bloods done every week to see how I get on

[Jmiller623 in reply to JaneI_1]

Good deal. Glad your counts recovered and it wasn’t from ITP which is a pain in the butt. Hope azathioprine brings you some relief! If they drop again, maybe discuss other treatment options.

[JaneI_1 in reply to Jmiller623]

Yeah I’ve just retaken it not long ago but not feeling right at all feel really dizzy and sore head! Not sure if it’s related! Yeah I think the next option is biologics

[Gre3neyedgirl]

My ITP and lupus go hand in hand when I have a flare up, dropping to dangerously low levels of 4. Usually these recover to a safe level within days but does require hospital admission for the level of treatment. I can sometimes "feel the drop" in platelets and generally I'll feel ok and the suddenly very unwell.

Sadly rituximab also didnt work for me dispite having gone through the mill off various oral meds prior. Now on to Bellimab..fingers crossed.

Good luck in finding the treatment that works for you.