When your markers only elevate, what do you do?

[Hessie5]

The only way is up with my markers. CRP 95 and wait for it to add to my woes ESR 97!!!! I have had an inflamed hand for 3 weeks.

I am honestly disappointed with my rheumatologist - you would of thought he would call to discuss, he just seems to be avoiding me.

So that said Plan B is back to see my private rheumatologist for some worthy advice as I have no faith with my current rheumatologist.

Since my diagnosis and my care with him the markers have just elevated, especially with all these biologics he is switching me too.

Something is causing this and I need to dig deeper even look at alternatives remedies, as you can’t help but worry.

Had first injection of this Kevarna he has put me on now - (think only 2 people on this 😕) taking this with naproxen too. Can’t help feeling like a guinea pig.

Hoping things improve soon.

Blessings and good health to you all.

[helixhelix]

That’s a disappointment. Not being able to have confidence in your rheumy must be awful.

How often are you having blood tests to be able to see if this is working? As they’re not instant sadly.

Kevzara is an IL-6 antagonist, like Tocilizumab and Sarilumbab. It’s just the new kid on the block. So your rheumy is actually following a standard pathway with you which is if anti-TNF biologics don’t work to try one that targets something different.

Do you have a review appointment with your rheumy coming up? If not push to get one as not fair to start you on a new drug and then not see you.

[Hessie5 in reply to helixhelix]

Hello Helix. Always appreciate when you reach out. You are the hybrid of knowledge for everyone on this forum so thank you for your feedback and invaluable insight.

In answer to your questions:

-Bloods every 2 weeks. My frustration here is getting copies is not easy.

-Next appointment in June.

As said going back to see my private Rheumatologist as no faith in current one, very lack-lustre approach. Right now elevated markers and he has offered nothing and that worries me. Had I not asked the nurse yesterday I would never of known. Had first injection, she told me take naproxen for a very inflamed hand -which is doing nothing.

I have been off sick 4 days, and must go back to work Monday. Right now feeling peeved.

Sorry for my rant.... I know I shall get there.

Again big thank you Helix. I hope all is well for you.

[Fra22-57]

Havent heard of Kevarna.is it new in the mkt.do you have a specialist nurse line you can contact about your markers.I too have rubbish rheumatologist who is head of the department. They too never contact me if things change.specialist nurse has once when effecting my liver.he disagreed.I get copy of bloods taken so can read.I also go to Guys hospital who are brilliant. They aren't my primary consult thou so can only send letters to him and advise.he has ignored them at times. got on better that way and by them am now on good biologic. its pity we have to try alternate way to receive being treat properly.seems to me they have too many patients to see.

[Hessie5 in reply to Fra22-57]

Hi - Kevarn it is new, all of two people on it 😕 !

As Helix rightly pointed out my rheumy is running out of options for me as nothing is working, all these meds knock my white blood cell count dangerously low, I am swiftly taken off.

Right now I have nothing to loose as the pain and inflammation is unbearable. Its been 3 years of hopelessness. Feel I am personally being treated as a number not a human being.

All the best to you.

[Fra22-57 in reply to Hessie5]

It's very frustrating n so so painful when nothing seems to work.more complicated when it effects your white cell count thou.bless you

[Hessie5 in reply to Fra22-57]

Bless you too 😌

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The highest my ESR went is 86 which is when my GP referred me. I was started on Sulfasalazine and it was like a miracle.