clueless rheumo

[GivenUp24]

I started off on 40 mg of prednisone and my CRP was 39. Every time I get below 25, I feel my inflammation creeping up so the CRP was redone and my numbers are now 19. my rheumatologist acts like he doesn’t have any clue why my i lamination is going up as my comes down. I don’t either since I’ve never had this before, is this normal.?? I’m trying to get a referral to go to Johns Hopkins. I have an appointment to try to get low-dose naltrexone to see if it will help as well. I can’t take Actemra because I’ve had cancer. I don’t know what to do, except to ask for help from you experts. Thank you

[piglette]

It is not just the PMR that can affect your CRP, even having a cold can make it go up. The important thing is how do you feel? I always have high markers and my doctor does not know why and has decided it is just me!

[GivenUp24 in reply to piglette]

I feel better now that I’m on a beta blocker. I’m just afraid of GCA symptoms coming back… not 100% sure I have GCA. But I had some symptoms that he attributed to it.

[piglette in reply to GivenUp24]

I can understand how you feel.

[DorsetLady PMRGCAuk volunteer]

Every time I get below 25, I feel my inflammation creeping up so the CRP was redone and my numbers are now 19.

What exactly do you mean? Do you have particular symptoms? If you are having problems at same dose, that sounds suspiciously like that dose is too low. Yes inflammatory markers rise for many reasons, but that sounds like pattern.. and if your Rheumy doesn’t put 2 and 2 together and make 4 then not sure what he does know. Sounds as if you need a second opinion.,

[PMRpro Ambassador]

There are many things inflammatory that can raise the CRP and your rheumy is the one who went to med school to learn about that. Heart conditions also raise CRP. You don't feel the inflammation creeping up - you get symptoms that suggest that may be happening. What are they?

What is the "normal range" for CRP for your lab? And how low did it get since I assume it is now19 after being lower?

[GivenUp24 in reply to PMRpro]

I started out with the CRP at 39 two years ago and decided to forgo prednisone at the time. Fast forward a year and a half with suspected GCA started at 40 mg and my CRP went to under five.. got to 25 and had some symptoms that I thought maybe GCA so he told me to go up to 30. And did not check my CRP. About ana month ago I sort of feeling really tired and icky and insisted that he do my CRP. At that point it was 13 and he said it wasn’t a big jump to stay on 30 for two weeks, then start reducing. I have a standing every 2 week order now for CRP, at my insistence. And yesterday it was 19. I’m on 25 mg now. He said it was going in the wrong direction…. Duh …..that’s all he said!!!! No direction!

[PMRpro Ambassador in reply to GivenUp24]

At least he noticed!! Anyway - stay at the dose, see what happens in 2 weeks, which is what you should do to establish if there is a rising trend and if there is - you check it 1-2 weeks later, IF it continues to rise, then obviously under 30mg isn't enough to manage the daily inflammation load. And needs a rethink.

[Infoseeker31]

My CRP was 66.6 Feb 12, 2024 when I was first diagnosed with GCA. I was immediately put on 60mg prednisone. The may time it was checked, May, it was 2.8.

I have since then had regular sedimentation blood tests which measures inflammation, it should be under 30. February 12 it was 55. My physician has been tapering me off of the prednisone very slowly and I'm now at 15mg my SED rate was 5 a few weeks ago. It does swing a little but still stays well under 30, high teens has been the highest one month

Perhaps if you're in pain ask for a SED blood test. Good luck, I feel your pain.

[Grammy80]

I have been a GCA gal since 2019. You have been given some super advice, and I hope it gets sorted out, you will feel better, and you will get a diagnosis that you have faith in.

My chin dropped when you said you couldn't take Actemra 'because you had cancer.' I've been on it since October 2016 and have had invasive vulval cancer treated at the University of Chicago, plus so many skin cancers....they are like buddies that pop up with fair regularity for years, some basal and some squamous. I did look it up...and printed it for my doctor....but I wondered if you would share your source of info and what you were told. I'm always after as much info as possible....thanks, I'd really appreciate it.💞

[GivenUp24 in reply to Grammy80]

my rheumatologist said that Acera can cause certain types of cancer. I googled it. It also says that, that’s all I know and I don’t wanna take another chance.

[PMRpro Ambassador in reply to GivenUp24]

I wish they wouldn't use that terminology - it doesn't actually CAUSE the cancer but there is a slightly increased risk of a cancer developing because the immune system is weakened to some extent and is less able to recognise the cancer cells and stop them developing.

I also saw a medical media article that said it causes tuberculois - again it doesn't cause it, but if you have had tuberculosis in the past, even if you didn't know, there is a chance it make wake up and become active again.

However - it is perfectly understandable you don't want even a slightly increased risk.

[Grammy80 in reply to GivenUp24]

Thanks GivenUp24, I Googled after reading your post and found a medical paper online I'll be taking to my rheumatologist on my next visit. I had planned to discuss Actemra with him anyway. When I got down to -0- pred on 6/26/24 and remained on Actemra weekly and went into a GCA flare at the end of July....I wondered what it was doing for me. My thinking was that it 'didn't hurt.' ??💞

[GivenUp24 in reply to Grammy80]

Good luck…❤️