Azothiaprine and recurrent neutropenia MCTD

[katiehopeful81]

Hi all,

I was diagnosed with MCTD this Feb. I have severe raynauds, pain and swelling in all of my joints and fatigue. Initially I received IM steroid and hydroxychloriquine, it gave me permanent tinnitus then sulfasalazine, has an allergic reaction to it and felt really poorly, two nights in A@E, then Azo and it has helped my symptoms, not got rid, but a lot better, but only been on it for a couple of months and already had two episodes of neutropenia. Just had to stop again. Was only taking 75mg a day weigh approx 64kg.

I am also undergoing fertility treatment IVF (which so far hasn’t worked), so I can’t take Methotrexate. I have an appointment with my Rheumatologist this coming week but I’m feeling very disillusioned and very fed up. Does anyone have any advice? Anyone else experienced repeated neutropenia? Does it mean I will have to stop this drug? Thanks

[Oshgosh]

I don’t know much about it.

I was on Aza,but it didn’t suit me.affected my liver.

I hope some one else on her has more knowledge.

[katiehopeful81 in reply to Oshgosh]

Sorry to hear that. I know they are e supposed to monitor my liver but they don’t!

[Jmiller623]

Hi Queen. If it is causing Neutropenia with neutrophil counts less than 1000 then they will probably stop it. It leaves you at a huge infection risk.

Sorry to hear about your IVF experience. I have no children and thought about doing IVF but am afraid of blood clots with exogenous hormone use. I hope things work out on that front. I wonder if they could use a low dose of steroids to get you through. Not optimal but not sure what other options are available that are pregnancy friendly. Lupus approved meds are so few and far between. I do know one lupus sufferer in my support group who is trying Humira which is safe for pregnancy but not approved as first line for lupus treatment. Maybe you could ask about this? She is using it exactly because it’s safe for pregnancy while she tries.

Hope this helps answer your question. Sending hugs your way. ❤️ xx

[katiehopeful81 in reply to Jmiller623]

Thank you that is really helpful. I wasn’t sure if Biologic medications were safe in pregnancy. I hate all these medications, they don’t seem to work and have all sorts of nasty side effects. I’m definitely feeling sorry for myself we’ll see what my rheum says. I just feel so despondent x

[Jmiller623 in reply to katiehopeful81]

Aaaaw Queen. I’m so sorry. A good physician will help guide you to the right decision and treatment that is safest and effective for you. We all take different paths and meds based on our own wants and needs, which obviously changes throughout life. I hope you find a successful way to have a child and get your MCTD under control. Nothing we ever do is easy so I know you got this. Just keep asking questions even if your physician seems annoyed. It usually means they have some learning to do as well. Another option is have a high risk OB/Gyn weigh in. They usually are very good with knowing what is safe during pregnancy. But maybe you already see one if doing IVF.

[katiehopeful81 in reply to Jmiller623]

I had consultations with an IVF specialist on the NHS but I just feel I was treated the same as all the other women, but women who didn’t have the same medical history as me. I’ll see what she says tomorrow. Just want all of this to stop. I used to be so active and now I’m wasting away and feel like an old lady. Everything hurts, including my brain

[Jmiller623 in reply to katiehopeful81]

We are here for you! All of us know the struggle. Your frustration is quite valid.

You actually should be treated differently because you have MCTD. Many OB/Gyn aren’t well versed in it so they will blow you off because they just don’t know. I’d ask to see someone in Maternal Fetal Medicine which is basically high risk OB that will know more about your condition and how to make it work more than any other specialist. They’ll know what drugs are okay and which ones aren’t. Maybe ask to see MFM if it exists over yonder.

Keep us in the loop about tomorrow. I hope it proves to be a good appt.

[katiehopeful81 in reply to Jmiller623]

So she said biologics were out due to not being safe in pregnancy and the best option seems to be trying the Azo at 50mg and weekly blood monitoring to see if I can tolerate it. She said she would tolerate a mild neutropenia, over 1... anything less then we would need to stop and rethink. Other option was trying tacrolimus but I don’t like the sound of it and I’ve had bad reactions with the other drugs. She offered me more steroids but they mess my sleep up so I said no. just hope I can stay on 50mg and it works x

[katiehopeful81 in reply to katiehopeful81]

She said Humira wasn’t indicated for MCTD and there could be funding issues.

[Jmiller623 in reply to katiehopeful81]

Yes. This is true. Not sure how it works in the U.K. but sometimes these drugs are used off label if documentation is done properly. Eg can’t use other immunosuppression while trying to get pregnant. Here in the states, you’d need a prior authorization for approval. This takes some energy for your provider to do. It really tests their level of patient advocacy if allowed. But again I think things are more cut and dry in U.K. whereas it’s all about profit in the US so the more drugs the better because someone is making money from their use.

Humira along with Remicade can also cause drug induced lupus. There’s always pros and cons to every therapy and should always be weighed over a convo with your doctor.

[kfdm]

I was diagnosed with lupus and and sjogren syndrome IBS and asthma ,HBP restless legs syndrome, small fiber Neuropathy, all this in 2020.. I'm in constant pain .. I believe I have MCTD...