Actemra #lupus #RA #stillsdisease

I had my first Actemra infusion yesterday. It went well. The infusion center is pretty nice, much more comfortable than my previous doctor’s office. The nurses are more attentive and they took my blood pressure every half-hour. It’s nice to have an opportunity to talk to other people who are also there getting infusions.

It felt the same as my past infusions. They didn’t give me any pre-meds. For the first half, I got really sleepy. That usually goes away during the second half of the infusion. I got a little dizzy but realized it was from looking down, a problem I’ve had for a while. It’s hard to stay occupied during infusions if you can’t look down to read. This infusion took about an hour and a half. By the end I had a full bladder and a headache, a typical ending of all infusions.

I heard the nurses talking about another patient’s Rituxan infusion. They were talking about slowing it down to 7 hours because it can be a hard med to handle. My Rituxan infusions were done in under 2 hours. It’s a good thing I handled that medication so well, because my previous doctor could have made me pretty sick by rushing it like that(and she billed me for a long infusion, too). It’s another reason why I’m glad to have another doctor now.

On the trip home I was pretty tired. I had an errand to do and I felt a little out of it. When I got home and changed into pajamas, I started to feel really achy all over. My head was hurting a lot. I’ve been taking Tylenol lately since I’m restricted from using ibuprofen and other NSAIDs for this week because of the endoscopy. I played video games for a while. I noticed my concentration was absolutely horrible. The overall aching was worse with this infusion than my past infusions. When I went to bed I took some benedryl. That seemed to actually help with the headache a lot.

Today I am really tired. No headache so far, but I had a typical daily episode of being short of breath. I took some Xanax for it. Even though it’s not caused by anxiety, it helps. If it wasn’t for Xanax, sometimes I’d be too out of breath to move.

The MRI results came back of my adrenals, as well as a full report of the rest of my abdomen, uterus, and bladder. Everything is normal. No adrenal tumors. It’s great news, but it also means I’m back to square one in figuring out why I have high blood pressure, shortness of breath, etc. My next move is to see another cardiologist for a second opinion on my heart. My current one hasn’t found any inflammation around my heart, but he did say that sometimes it can be so small that it would be almost undetectable. He doesn’t think it’s necessary to do any more ultrasounds on my heart right now. I want to see someone new so they can look at things with a fresh eye. There has to be a logical explanation as to why I am so uncomfortable all the time. I will also probably be revisiting my endocrinologist soon, because it could perhaps be hormonal as well. We’ll see, I guess.

I’m going to take it easy today. The nurse said, and I quote, “Don’t hang around a bunch of snotty kids today.” She was saying it to be humorous, of course (well, sort of). But I know what she means. I can’t be around a lot of germs today. I’m too tired to do anything anyway.

Tomorrow is the upper GI endoscopy, with propofol anesthesia and IV hydrocortisone adrenal support. My rheumatologist said it would all be fine, even after just having an infusion. I guess I’m not too worried about it anymore, just looking forward to getting it over with. I’d like to put a stop to this awful acid reflux if I can. I miss Italian food. Like, seriously.

Well, that’s all folks. There is a lot of Mario Party in my immediate future. TTFN.



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