I emailed Rheumy nurse on Monday re the headaches I have been getting. A new headache - unlike the numerous ones I've had before - i.e. migraine, cluster migraine, ice pick headaches, migraine with myalgia - ear pain with them etc.
These have been pain at the front of my head or back of my head but with tenderness on my head and pains down my neck. Not constant pain. But on and off last 2/3 weeks. Veins also appearing along hair line when I get headaches.
Answer was it couldn't possibly be vasculitis as the last bloods I had done in clinic - I think last May??? Showed no sign of vasculitis. I didn't know there were blood tests for vasculitis. Apparently they'll do the bloods again next time I'm in clinic.
What are these? PMRPro said it sounded like it could be temporal arthritis. But that's a no too apparently.
Can anyone shed any light on what blood tests these are? Thank you.
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Wendy39
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They'll have meant ESR and CRP I imagine - which are raised in 80% of GCA patients. That still leaves 20%... And for goodness sake - it is nearly a year since last May!
I'm still waiting for a response to last weeks appt with two representatives from the health board. They said they'd get back to me in a week. So I guess that's tomorrow now. They said they would definitely put me under the other Consultant Rheumy, Dr C. But my Rheumy nurse today has asked my Reluctant Rheumy re my questions, not my new Rheumy. I am thinking that the news isn't going to be good. My gut reaction is, once again reluctant Rheumy relying on bloods only once again. She's been like this with my SCLE all along. My Dermy did the punch hole biopsy found active lupus and put me on 3g a day MMF. She's just disbelieved me all along. Sorry for rant. Annoyed and frustrated. Rhurmy nurse also said vasculitis and temporal arthritis wouldn't go on their own or with sumatriptan. I've only taken one sumatriptan. I've been taking ibuprofen as it's anti-inflammatory. Wendy x
Great way of describing them! So blinkin frustrating. I really hope I'm wrong about what to expect tomorrow. I hope they don't keep me waiting for the results until a 5pm email. I'm thinking doctors stick together and reluctant Rheumy will just deny all. My word versus hers, 😬😬
I was looking for the stats I had quoted last week. 60-81% of patients with SCLE have positive ANAs but only about 50% of them are of a significant titre. That explains why I've only had 2 positive ANAs that I know of - first test October 2013 came back just positive & second was last July 2016 1:80 but that was whilst on 20mg of steroids. All others negative. But bloods have definitely not been the total picture for me.
After 6 years of monitoring in clinic & getting to know my characteristics, Rheumatology says I have small vessel vasculitis + SLE & co. No big deal...no fussing over bloods results...it seems a relatively mild version of vasculitis for the time being, but at least I know.
The way they are messing you around is quite frankly awful 🙁
Waiting for news must be vvvv hard...I hope you can get some decent zzzzz tonight
Thanks Twitchy. Rheumy Nurse said they would do bloods again at my next appt, which is with her on 27th April. The new headaches are still happening but the pains in the veins in my neck have lessened. When I started in immune suppressants, I was given a choice by my Knight, Azathioprine or MMF. My husband and I chose MMF as it said in the info that it treated vasculitis as well and we both think I have it, even if it's found to be mild. Thanks for the blood test info, I'll make a note for that appt. x
I'm v similar. In 2011 when my infant onset diagnosis was recovered, I met required diagnostic clinical & immunolgic criteria, but was sero-neg.
at that time my version of SLE was described as the vascular type. At first the treatment plan was daily hydroxy + amitriptyline with 3X 10mg 4 week pred tapers per year.
By 2014 this combination had proved unable to sustainably damp down my chronic Neuro/cerebral/vascular symptoms. So I was offered daily myco because of my case's vascular nature. We found 1000mg myco cellcept to be my therapeutic dose. Soon after we added daily low dose pred (routinely under 10mg, and mainly 5mg or less).
As you know, this treatment plan can't & doesn't make good the cumulative multisystem damage caused by an adult lifetime with only emergency meds. So of course I'm managing all sorts of chronic probs ongoing. BUT, meanwhile, I do have more stamina + resilience + comprehension & less pain than I've felt in 30+ years....which means I am coping much better than I might be otherwise
That's the combined therapy that is working for me...so far so good 😉 and my medics say the way i respond to it indicates a lot about the characteristics of my version of immune dysfunction + connective tissue disorder. I'd say your medics should stop wasting time blocking the enhancement of your treatment plan with their bureaucratic emphasis on bloods results, and concentrate more instead on what your responses to treatments are telling them about the character of your version of illness
Am v much feeling for you, Wendy...my instinct is that you will get these medics off their a**** soon
It depends on the type of vasculitis - if it were to turn out to be GCA (giant cell arteritis) then the only thing that works reliably is pred (or now, possibly tocilizumab but it isn't approved yet). Headaches and neck blood vessel pains could be CGA - and in the early stages the symptoms can come and go - that is why it is so difficult to diagnose.
I'm feeling quite down about it all again. I'm banging my head against a brick wall. We'll see what these officers from Hywel Dda say today. But I discussed the Rheumy nurses reply last night with my husband and if i don't get anywhere with reply today I'll have no choice but to go to London or Bath privately. Our private health care with husbands job won't cover monitoring a chronic condition. So we'd have to pay. Thanks for your help. Wendy
There are many different forms of vasculitis which are diagnosed differently. You can find out more about how they are diagnosed and which blood results they look at on the Vasculitis UK website - vasculitis.org.uk/about-vas...
To update- the two senior officers from Hywel Dda failed to get back to me by yesterday, as promised. Not even an explanation revived that it was taking them longer than they thought etc.
In the meantime, I still have the headache. Yesterday it was awful. I really try to be careful with pain relief, not sure why when you think about all the other toxic stuff I take every day but anyway, I took 400 ibuprofen, then 1 sumatriptan, head still bad, 1 codeine about 5pm and 2 codeine at 11pm before bed. Normally codeine fixes it. Headache again already. Temp is about 37.6. Usually 37.6/37.7. So normal for me. Fatigue. Spent a lot of time at home resting and sleeping last 3 weeks. No energy. Lethargic. No get up and go. Headache now in and off over 4 weeks. I'm going around in circles. And it's getting me down. Roll on GP appt on 27th with my fav GP who might talk sense to me!!!!! So fed up. X
Any visual symptoms at all? Double vision, blurriness, feeling there is a curtain across your vision, even fleeting loss of vision - any sign of anything of that. off to A&E and pray for someone sensible.
The raised temp is actually not that common. Feeling you have flu is. Are you okay when chewing - especially hard things?
My eyes feel heavy and I've had a fuzzy / spaced out feeling with these headaches. But no visual problems. I thought temp was just upper normal range? Had a fleeting shooting pain in jaw earlier. But very brief. Not had it before and not since. Hubby bought me paracetamol as I had run out. So today 400 ibuprofen, 2 x paracetamol and 2 x sumatriptan. Codeine not far away. Thanks for your reply and pointers, as always, Wendy x
I meant the criteria often mention low grade fever - I've often wondered why although some of us have hot sweats briefly but I've never checked my temperature then! I know a few people who get ranging temps during a flare!
But that headache needs investigation. Sooner rather than later. Lots of things cause headache and some of them are not nice. If that amount of pain-relief hasn't touched it I'd be asking for medical advice. Even if it is only 111 and an OOH doctor.
What time is the Wales match? A&E will be quiet then...
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