Anybody with urticarial vasculitis help answer a few questions :)

[Betty4]

My son who is 9 has urticarial vasculitis only diagnosed last year after biopsy and still waiting the results of specialist bloods taken weeks ago, I wanted to ask if anybody with uv suffers from stomach pain and headaches, he is more frequently seems to complain of a soar tummy and soar head feels unwell, then the blood vessels on his face all burst! Also he always needs to go to the toilet, has always been bursting and only does a small pee, then not long after bursting and needs again! can this be related in anyway? I have another 3 kids and none of them have been like this, thanks any info. Would be appreciated

[Sarahjh2004]

Hi

i have a complex form of UV called HUVs. Part of the condition is facial and stomach lining swelling. During an attack there is the want to visit the toilet. Do you know if your son has had a blood test looking for anti c1q antibodies as these are a marker for HUVs. It is extremely rare so fingers crossed would come back negative but for the sake of a blood test you may get more information. The test is not routine, but i would request it to cover all angles. I was originally diagnosed with UV.

Oh, sorry forgot to me to mention that my face blood vessels break too.

My daughter is tested every six months as we have been told there is a high percentage of getting it as she already has urticaria but my son is fine.

Good Luck,

Sarah.

[KathyW]

Hi Betty4. I have had UV diagnosis for many years after several biopsies and loads of tests. Currently have a burst blood vessel in my right eye, which is common for me, I also get lesions on my face arms and legs when I flare. I get headaches and stomach aches too plus the urgency and frequency you describe, so I think maybe your son's symptoms are indeed all linked. However I believe Sarah is right in saying that you need to insist on more tests just in case they are not. There are very many forms of Vasculitis, even several forms of UV and the more you can find out about your son's particular case the more you will help him cope with it in the years to come. Good luck, one day they will find a cure but in the meantime there is plenty we can do to relieve the symptoms. Kathy

[Betty4]

Thanks for that, She said when he got his blood taken one was For a full blood count and called the other "exotic" bloods! So not sure if this is what she was doing or not looking for anti c1q antibodies. He has got worse over the years, now has swollen joints,glands etc along with flare ups. Hopefully we hear back this week so we know where we go from here. Thanks sharing, I thought it was linked but just wondered if any one shared. It's hard as its only women who seem to have it and I haven't heard of another wee boy

[RichardE Volunteer]

Hi Betty,

Like Sarah, I also have HUV. So whilst it is mainly women who are affected I am one of the male exceptions to the rule !

I've recently been working on a document about Urticaria Vasculitis that will hopefully go up on the new VUK website and give some more information about this particular type of Vasculitis. But in the mean time, as has been said above, your son's symptoms do sound like they may all be connected and I would definitely recommend that you bring them all to the attention of your consultant.

Some of the blood tests they might try are :

"C-reactive protein" (CRP) and "Erythrocyte Sedimentation Rate" (ESR) which indicate inflammation in the body.

Testing for C1q, anti-C1q, C3 and C4 complement components. As Sarah says, these are indicators for HUV.

They may test for Anti-Nuclear Antibody (ANA) levels. An indicator of the Lupus autoimmune disease that is closely associated with HUV.

They may also test the "Glomerular Filtration Rate" (GFR) which shows how well the kidneys are functioning.

They usually also "dipstick" test a urine sample for evidence of blood and protein.

The consultants should consider all of these tests together with any biopsy result(s), the general symptoms and an overall view of how "well" the patient is before coming to a decision on diagnosis.

My final thought is that if your son is on some sort of medication such as a steroid like Prednisolone or maybe an immunosuppresant then these can have unpleasant side effects too. In particular, the need to go to the loo frequently could be a number of things but I'd definitely mention this to your consultant.

Good luck with everything, and as I'm sure you've discovered, half the battle is to get the medical professionals to listen to you and to get a decent diagnosis before the correct treatment can begin.

All the best,

Richard.

[Betty4]

Hi Richard thanks for this, I still haven't heard back this week although I do know she has his results and is consulting with someone! Hopefully we get to see her sooner rather than later and I will take this list of things with me. The only medication she has put him on at present is cetrizine antihistamine! Which only makes him sleepy! Thanks again

[RichardE Volunteer]

Ah, I see. Cetirizine certainly helped me with the Urticarial rash but ultimately it only masks the symptoms. Hopefully once the results are fully analysed they'll know exactly what they are dealing with and whether more agressive treatment will be needed. Let us know how you get on.

All the best,

Richard.

[Betty4]

Hi we still haven't been told the results of Codys blood tests etc, however this morning I've received a letter of referal for him to go and see a rheumotologist! I take it she will be giving us the results, for him to have been refered on I'm assuming they have discovered more?

[RichardE Volunteer]

Hi Betty. I'd certainly see this as a positive step forwards and hopefully they will have some news on the diagnosis and treatment for you.

But I'd recommend making a list of questions that you want to ask and taking it with you when you go. I find it's often easy to get distracted and forget to ask about something you desperately wanted to know about. Which reminds me, I see my consultant this week and I still need to complete my own list

All the best, Richard.

[Betty4]

Thanks Richard, have an iPad full of photos and will defo. Have a notebook full of questions, pleased we are getting somewhere at last, just pray she doesn't fob me off!

[hugs84]

Hi everyone. I know this thread is old and i hsve posted this else whete but im desperate for answers. I had a look through and couldn't find specifically what I'm looking for but you all seem to have some experience and know what you're talking about.

This is going to be a bit long winded so please bare with me.

I became pregnant with my second child in late January last year, and by 8 weeks had developed an eczema-ish rash over my entire face.

The intensity of it came and went,with specific flushing of my chest,cheeks and the bridge of my nose. I was told it was the mask of pregnancy and pregnancy "plaques".

At around 30 weeks the rash came back with a vengeance,was thick and purple over my entire face,neck and chest. I had nocturnal diarrhoea and severe breathlessness. I was told it was a mixture of hormones and anxiety. (These symptoms continued for the whole of pregnancy)

I had reoccurent unshiftable UTI'S that developed into a kidney infection.

I then developed flushing,swelling and tracking down my left arm and across my chest and lymph nodes in my arm pits,left breast and around my collar bone. Chest xray revealed nothing. Scans for pulmonary embolism all clear xray for sarcoidosis clear.

I had my baby and 1 week post partum developed a massive swelling of the big toe joint on my right foot and high uric acid. Was told I had gout.

Was sent to immunology who ruled out carcoidosis and lupus but said blood tests showed raised esr and raised IgA.

Developed severe joint pain in my wrists and thumb joints, muscle pain and upperbody weakness and severe fatigue. Began getting numbness and tingling down both arms and loss of fine movements in my fingers. I already have raynauds, and developed painful blisters on the ends of all my toes which I was told were chilblains.

Sent to rheumatology who said gout is extremely unusual in pre menapausal women and that he didn't feel I was symptomatic of a rheumatic condition and that I should take a "holistic approach"with diet and exercise.

Went to neurologist who is sending me for scans of my head and neck re: numbness. I have swam every night but the pain and weakness in my upper arms is getting worse.

Which brings us up to this week.

I received a letter that I was copied into from the rheumatologist to my g.p.

The letter states that I have raised IGA, ESR "and with the presence of anti C1q antibody urticarial vasculitis is extremely likely".

I know nothing of this disease and my g.p has admitted she isn't particularly knowledgeable but has said there are 3 different categories depending on the levels of complement proteins.

I'd really appreciate if someone could decode it all for me as I'm not sure which "type" I have. An overview of my y blood tests are as follows:

Anti c1q antibody (high)

C3 within normal range

C4 within normal range

Iga raised

Esr raised (14)

Uric acid now normal

Aswell as this I have underacrive thyroid wirh hashimotos but my levels are stable. I have a high TPO antibody.

I have raynauds,and reoccur enter severe coccyx pain with no known cause.

I have reoccurent stomach problems and was diagnosed with non coeliac gluten intolerance.

I had childhood alergies and asthma. I have a family history of R.A and SLE.

Also,the rheumatologists suggested treatment was antihistamines. Is this a long term solution? My next appointment isn't until May so any answers I can get before then would be really helpful. Thanks in advance. Xxx

[Hidden]

Is anyone out there?

We are beyond frustrated with this disease. My boyfriend has had it since 2013. Even though, before he started breaking out with those terribly bruised hives, he has had blood work done and for some odd reason, his WBC was always higher than average, by about 1,000 to 5,000 higher. He could have started this disease earlier with no signs of hives. Who knows? In 2012 he complained of the worst stomach cramps and had terrible BMs. Doctors could never figure it out, I betcha it started then. Right now he's 43 years old, and he keeps telling me he feels like he's 70, I wish we could find a better doctor. He's been on high dose of prednisone of 80mg the tapper, was on Plaquenil for a week, Zyrtec, cetirizine, singular, Allegra, even tried methylprednisolone. That made the hives even worse, his legs swelled up and bruised 10 times worse. Now he's on 100mg dapsone and it works most of the time unless he becomes ill. Stomach ache, cold, stress aches, any time of back pain the dapsone is less effective and he breaks out on his face and torso until the sickness goes away or he goes back on 30 mg of prednisone. I also want to know if smoking or drinking beer makes it worse. He's been eating better than he used to but he's been smoking more than he used to. He used to only smoke 5 ciggs a day now he's up to a pack/pack and a half. I told him to stop, but he's so stressed out from this disease he says "why quit? maybe it will kill me faster because I don't have the balls to kill myself. I wish this disease would just let me die." He drinks more than he used to also, he used to drink 6-8 beers after work but he would take like weeks or a month break away from it. He's giving up.... we need help! I love him so much. Please, someone, help me find a better doctor.