u/yailin24

Does anyone have any experience with Saphnelo infusions? I saw my rheumatologist today and he informed me that he would be taking me off of one of my medications (Azathioprine), because I’m not a ‘good candidate’ for it. Which was kind of shocking because I’ve been on it for 8 years now and this is the first time I’m hearing of it. That medication is being replaced with a Saphnelo infusion. I’m absolutely terrified having heard that. Does anyone have experience with this medication?

Sorry didn’t know what to tittle this post lol. But I was wondering if anyone has had any experience with asking to have certain medications prescribed. I called my rheumatologists office and asked his assistant if it would be possible to have low dose prednisone prescribed. I have an important exam coming up shortly but I can’t even manage to stay awake most of the day.. Is it generally okay to ask something like this? I’m afraid I’ll have ‘drug seeking behavior’ in my chart somewhere :,)

I’m a 24 year old female and I’ve had SLE since I was 16 and I’m still struggling to deal with the disease. I think the fatigue is the worse part. I don’t really like talking about my disease because I feel like the people around me think I’m just complaining which I understand. But to me it’s my everyday life. The fatigue, the nausea from meds, the exhaustion, the hand tremors that make simple things so difficult. And the mental load of it all as well. I’ve had a hard time coping with the fact that even with the disease life still has to go on.. I have to continue to live and pursue my dreams despite the disease.
Sorry for the ramble but I hope everyone else is holding up okay <3