I continue to be a medical anomaly as I still make no sense to the medical profession. I went to the rheumatologist today to get the update on whether or not my x-rays qualified for the medication and our next steps, depending on their results. I had Rohan go with me today because I wasn't sure I would be able to handle the emotional toll that this is taking on me, especially after she told me last time that she isn't sure if the medications are even working!
I found out that my x-rays did not qualify again. That's really no surprise. I wasn't expecting that they did and I didn't want to hold out hope only to be let down again. But rheumy also explained that my inflammatory disease is basically the opposite of what it usually is. Usually, people with inflammatory diseases feel worse when they first wake up and feel better after they've moved around. Mine is fine when I wake up, but gets worse throughout the day, especially when I walk around a lot. Weather also doesn't usually affect inflammatory diseases, but my pain is so much stronger in winter and when the weather changes rapidly. This week, it changed from 40C (104F) to 18C (64F) back up to 40C (104F) in a matter of three days. That was excruciating.
Because of the difference in my illness and typical inflammatory diseases, she's not actually sure that the biologics (the medication that my x-rays were trying to qualify for) would even work. But, since the x-rays didn't qualify and I couldn't qualify the other way, she wants to try to put me on a different (although similar) medication. Qualifying for this one requires certain results from an MRI scan, so I need to get an MRI taken of my lower back/hips. This one has more promise as my previous MRI did show something, just not quite enough, and was in 2016. My pain has gotten so much worse than it was then, so, hopefully, that is a good sign for trying to qualify. I also brought up my question of if going off my medications would make the MRI more likely to show the inflammation. She said that the studies have been mixed and she would never normally tell someone to go off their meds, but she gave me the go-ahead to try to do that and see if it helps. She said to wait about two weeks after I stop taking those meds to get the MRI. The medications stay in your bloodstream for about 3 months, but she said two weeks should be enough to see a change. I have another follow-up with her in one month to then see how my MRI went.
I'm going to call tomorrow to get an MRI appointment before I go off my medications. I'm not sure how soon I will be able to get one and I don't want to be off my medications for longer than I need to be. I'm really worried about the pain because I tried going off of them back in 2016 when I was in minimal pain with them and wasn't sure if I needed them. Now I'm in extreme pain with them, so this might be unbearable.
So fingers crossed or please send prayers/positive thoughts, depending on your beliefs. The next few months will be hard ones!
On a side note: today marks 11 years from my brain tumour diagnosis and tomorrow is 11 years post-op!
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