I swear, I intended to write this earlier but 1) It was my birthday this weekend (YAY) and 2) mother nature has graced itself upon me and I have been a shrivelled up shrew thanks to her visit. Nothing like having blood come out of both ends to kill your energy……
But my news update:
Saw my Doctor and Nurse Practitioner last Thursday and it went as well as it could. I was definitely rejecting the medication and actually getting worse thanks to it. My biopsy also revealed that I’m actually at a moderate level, not mild to moderate, meaning it was time to amp up the treatments. So after careful discussion, going over my pre-existing conditions and current medications, and my family history/ personal health history it was opted to start on Imuran, an immunosuppressant, for 8 weeks and Cortiment (Budesonide), a steroid, also for 8 weeks.
The goal at this point is to get my inflammation and disease itself under control because my body is doing so great right now and we are still teetering on normal functioning level, but even she said if I continue at this rate it will just be too much for my body and something will have to give. So to keep an eye on this for the first month I have to do blood work every week for a month, then monthly.
In positive news I have gained weight (okay it was like 3 pounds) and am starting to get an appetite back. This may be due to the fact that I’ve been off medication for about a week and a half now, so it’s probably all out of my system by now. Hopefully these new meds won’t mess too much with that. I sincerely hope this. It’s been exciting craving food again. I even had sushi, which I missed dearly, for my birthday dinner with my boyfriend.
Side note: Ensure actually tastes great, at least the chocolate one does. The smell is a little odd, but it tastes really good! I bought Boost- Extra Calories today to see if that one tasted good as well to kind of mix it up a bit. I will update you on that.
But I guess I’m just a little nervous about Imuran after reading all the terrible side effects and complications it can cause. Also losing hair doesn’t sound appealing (and I read some people lose them in heaps!). What have been other people’s experiences? Yay or nay? What should I expect? There’s so many side effects (many of which I already have from the disease itself, so dissecting if its from the disease of the meds will be a challenge) that it’s all a little overwhelming. This whole experience is overwhelming. I just want my body to love me for once, not hate me.
Please body, let’s get it together. Let’s be a team again, cool?
But I will update you all on my birthday a bit here in my next post and talk about what my futures goals are as I enter the year of being 23 (which according to a ridiculous amount of people, is supposed to be the worst year of your life….).
3 thoughts on “Treatment Plan #2”
Good luck to you on Imuran! It has really helped out a good friend of mine, so I hope it gives you luck, too. I know that being a patient feels a lot like being a science experimental guinea pig, but hang in there! Try not to think about all the scary side effects. :p I lost a lot of hair when I began taking Remicade four years ago, but I started using hair thickening shampoo (haha) and focusing on eating more protein and fat (also underweight at the time), and it has finally grown back THICKER than ever. I cried the first time a stranger complimented me on my hair. Ridiculous, but it is the little things 🙂 Best of luck to you with your new treatment!!! Hope it helps you get back to feeling like the rock star you are.
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Ah thank you so much for this response. It made my heart feel a little better about going into this. And super awesome to hear about your hair! I never thought of it as a security blanket until you’re kind of faced with potentially losing it! But my fingers are crossed this works in the 8 weeks they’ve given me and I can slowly start getting off it after then 🙂 but seriously thanks again for commenting, you don’t know how much reading this made me feel a lot calmer 😊
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A little late, but happy birthday 🤗