Evening/morning I've receive...

[LauraMk30]

Evening/morning

I've received a copy of the letter from my specialist to my GP

I just wanna cry ! Don't know what to think or feel, I've felt so low today & this just put the nail in my coffin !

I'm not exaggerating or being OTT I just feel so shit & down in the dumps ! Apologies for my language in advance.

I won't go through the whole letter as it's quite detailed & long.

But the one thing that stood out to me was this part..

My inflammatory markers are in normal range this time, ANCA - now Negative

ANA is elevated

I just don't understand what this means how can I go from having 2 positive ANCA's to a negative. Having inflammatory levels raised to go back to normal.. I've had so much blood taken & so many positives on lab results. Now I'm feeling absolutely rubbish & my labs are fine.. doesn't make sense.

I think I'm upset because I feel as if my body is putting on a brave face at appointments ! Sometimes the symptoms don't show up on the day & I feel as if everyone thinks I've gone loopy! It's not in my head, I feel it & want nothing more than to get better.

It says that my symptoms come in cycles..

hello I am not a doctor how am I meant to interpret that...

From my understanding i get a few good days free from illness which is normal for anyone who is chronically ill. You get those few good days !! then I get bulldozed with months of chronic endless pain, & exhaustive list of god knows what...

Please would someone explain in layman's terms what this means for me?

[Honey46311]

So sorry to hear Laura. You can IM me if you'd like. Did they test for C-Reactive and Sedimentation rate those are the true inflammatory tests? The ANA tests show there's inflammation but doesn't specify location (e.g.: like SLE lupus, vasculitis, etc) . My Rheumatologist doesn't test my ANA anymore. Only the two I mentioned above. Hope this helps. Hang in there. How's your incision ?

[LauraMk30 in reply to Honey46311]

Thanks honey x

My CRP & ESR have always been raised been up & down the last few weeks, I had a ANA test twice both elevated 1.80 titre speckled pattern.

Incision is still quite bad. I have stitches out tomorrow morning. X

[Suzym2u Moderator Vasculitis UK]

I will ask John to reply to your post as he can explain things better than myself

[John_Mills Volunteer]

Hi Laura, Sorry you are so upset. Inflammatory markers can go up & down & ANCA results can vary between labs. As Honey has said, CRP & ESR are relevant, but general inflammatory markers. They can be raised if you have a cold. The ANA test is usually regarded as an indicator for Lupus. Many of the symptoms of lupus are similar to those of vasculitis and you can get lupus/ANCA vasculitis crossovers.

If you would like to discuss your case in more detail, please either phone [phone] or email [e-mail]. I don't like people sharing too much personal info in the forum and I would probably want to ask a load of questions. Don't lose heart, we'll help you get to the bottom of it all.

[ludo]

Was that letter from Birmingham Laura? Don't be disheartened. A negative ANCA isn't a diagnosis in itself. It's recognised as such. You have other tests coming up. Wait and see what the results of these show. They can then make a plan. You see Dr Harper again in a few weeks when she will be able to discuss the results with you. Keep positive it's the only way forward. Take care. Hope your leg heals soon x

[LauraMk30 in reply to ludo]

Thanks Ludo,

I think that evening I was very low & felt like I hit a brick wall again. Yes letter was from Birmingham. Ok, I'm still not clued up about ANCA. All I know is I've been positive for months. I do get to see Lorraine soon, 11th July CT sinuses 2nd Aug endoscopy 3rd of Aug E.N.T so I'm it's not over yet.. doing my best to stay positive. The only way is up. Take care too x

[ludo]

I've a few health issues myself at the moment and feeling a bit worried and frustrated. It's a battle at times. I'm back in clinic Thursday so hoping they can shed some Iight on what's going on. Trouble is I have a good few days and then bad few days Iike yourself which makes it hard to describe symptoms when your having a good day. We will get there in the end.

People with active vasculitis can be ANCA negative.

Hope your appointment with Lorraine goes well next week. She will inform you more clearly of your results.

Let us know how things go x

[LauraMk30]

Sorry to hear that Ludo, most definitely a battle! & a difficult one if that. Please let me know how you get on. Your right it's hard to describe how it feels. We will get there. If ever wanna talk you can always PM me.

I thought people with a positive ANCA are under the umbrella of 3 forms & it's almost always positive. & when it's negative it's not active I guess that's me misunderstanding the information I'm given, or read online.

My app isn't till end of Aug now... 🤧 so a little while yet.

Hope yours goes well Ludo. Thinking of you x