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I have giant cell arteritis question

Posted by katclub @katclub, Apr 25, 2023

Giant cell arteritis, now on 15 mg. Prednisone and weekly injection of Acterma, my last bloodwork showed my CRP level was 5, my doctor said in normal range, but several other people said it should be O on Acterma.
Now I scared, help
Thx

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 25, 2023

@katclub I’m not a medical professional so can’t really comment on your lab values. I do understand your feeling scared and it’s totally normal. I have so many things that I try to keep track of that I was driving myself crazy. Now, 6 years in, I know what to look for and what to worry about.
I do know that your doctor is the most reliable and knowledgeable person to ask about the lab values. Decisions, are made about medicines, based on each individual person and their disease. You might try making a graph of your values to see whether they change over time. For example, I have an autoimmune disorder that left lesions on my brain and I’m being treated 1 way. The other people, with this AD, are all being treated differently, so we try not to compare medicine doses and lab values.
Your best bet is to have a good discussion with your doctor and explain that you want/need to understand your lab values.
Do you think you could call tomorrow and ask for an appointment?

REPLY
1 reply
katclub | @katclub | Apr 25, 2023
In reply to @becsbuddy "@katclub I’m not a medical professional so can’t really comment on your lab values. I do..." + (show)
@becsbuddy

@katclub I’m not a medical professional so can’t really comment on your lab values. I do understand your feeling scared and it’s totally normal. I have so many things that I try to keep track of that I was driving myself crazy. Now, 6 years in, I know what to look for and what to worry about.
I do know that your doctor is the most reliable and knowledgeable person to ask about the lab values. Decisions, are made about medicines, based on each individual person and their disease. You might try making a graph of your values to see whether they change over time. For example, I have an autoimmune disorder that left lesions on my brain and I’m being treated 1 way. The other people, with this AD, are all being treated differently, so we try not to compare medicine doses and lab values.
Your best bet is to have a good discussion with your doctor and explain that you want/need to understand your lab values.
Do you think you could call tomorrow and ask for an appointment?

Jump to this post

Thank you first of all for your reply, I can email my PA, who I am happy with, she has been great. I should just avoid google and like you said, our bodies are all different even though we have this disease, we can respond to medication differently.

REPLY
Ame | @astanko | Apr 26, 2023

Hi Kat,
It's normal to be scared. Like Becsbuddy, I have an auto-immune disease that left lesions in my brain - talk about scary! One thing that helped me tremendously was meditation. I can't explain it but it was like a miracle when I was going through my treatments and procedures (9 MRIs, lumbar puncture, etc.). I use the Headspace app on my phone and it was so comforting when I was in between the times of trying to figure everything out. I hope your PA is helpful. Keep in mind that auto-immune diseases affect more than one system in your body. In my case, things were constantly changing as my body adapted to the treatments (I was on high doses of Pred for 6 months and then Rituxan). To be honest, my acute phase was 13 months ago and my body is still changing even now (luckily, getting stronger and healthier). Hang in there!

REPLY
1 reply
katclub | @katclub | Apr 26, 2023
In reply to @astanko "Hi Kat, It's normal to be scared. Like Becsbuddy, I have an auto-immune disease that left..." + (show)
@astanko

Hi Kat,
It's normal to be scared. Like Becsbuddy, I have an auto-immune disease that left lesions in my brain - talk about scary! One thing that helped me tremendously was meditation. I can't explain it but it was like a miracle when I was going through my treatments and procedures (9 MRIs, lumbar puncture, etc.). I use the Headspace app on my phone and it was so comforting when I was in between the times of trying to figure everything out. I hope your PA is helpful. Keep in mind that auto-immune diseases affect more than one system in your body. In my case, things were constantly changing as my body adapted to the treatments (I was on high doses of Pred for 6 months and then Rituxan). To be honest, my acute phase was 13 months ago and my body is still changing even now (luckily, getting stronger and healthier). Hang in there!

Jump to this post

Thank you for the encouragement! I pray and meditate too and it brings peace ! These auto-immune diseases are tough, meds too. I hope you continue to get stronger and thank you again🙏

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