Frustrated with Urticarial Vasculitis

Posted , 5 users are following.

I was diagnosed one year ago.  Where has the time gone?  Oh wait!  I know. It was spent in Drs offices and labs and lounging on the couch.

It's refreshing to read others have similar symptoms.  However, it also seems none of us are getting real answers as to the core of this sometimes debilitating disorder.

Mine starts with hives on my head that travel down and typically settle in my eyes.  Imagine the stares I get especially when out with my 6'4" beau.  

Yes, lots of facial swelling, and don't get me started on the bruising!  Then it moves into my shoulders, down the spine and across to the hips.  My back cannot be touched for about 36 hours.  Once that subsides, it shows up in my butt and down my legs.  

I can't leave out the most interesting symptom yet...liver hematoma.  You want pain?  That was excruciating! Not that my back doesn't knock me over but that organ pain was awful.

So, yes, I, too, have internal bleeding with no induced trauma.

Really?  What the hell is going on here?  Why?  How can I relieve this pain when ibuprofen is off limits?

I've done steroids for months at a time.  Drs don't want me on it for any length of time and I'm in agreement.  

There's talk about starting a form of chemo but I know nothing about this and need to do some research.

What I do know is there isn't enough info on UV.  I'm learning a lot by what I've experienced thus far.  It's painful & ugly.  

I used to have beautiful skin.  Now, I have red butterfly rash, dry, flaking skin whenever in a flare (more often than not), and bruised swollen eyes upon waking.  That was some fight during the night.  I wonder what the other girl looks like. 😂

 I can't do anything strenuous because they're afraid of more internal bleeding.  Wrap me in bubble wrap!

The latest is pain behind and in my eyes which caused the blood vessels to break making me look like a zombie on Halloween.  The pressure was horrible and came forward yesterday making me look, once again, like I'd been in a bar room brawl.  I turn to Rocky and say, 'Cut me, Mick!'

How many times before I have permanent damage to the optical or retinal nerve?  What about the pressure on the eye?  Hello ophthalmologist!

It's like it affects every bit of my body one area at a time, from day to day.

Trying to enlighten those around me is difficult because they don't always see the symptoms and I feel I come across as a drama queen when I can barely walk some days.  

Ugh!  Ok...I'm going to get some good rest and fight the good battle again tomorrow.  

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  • Posted

    Hi Tricia

    I am so sorry to hear what you are going through.  Do you live in the United States?  I have a wonderful doctor that has helped my Chronic Urticaria and gave me back quality of life.  She is at Johns Hopkins in Baltimore Maryland.  I had to go on Cyclosporine for a time and she needed to add Prednisone just to take away the hives then VERY slowly taper me down on  the Prednisone 1mg at a time staying on that for a few weeks then going down another 1mg for a few weeks and so on.  I am down to 1mg Prednisone then if hives stay away I will take 1mg Prednisone every other day until I completely go off....Lord willing. I also take an Allegra and Montelukast at night.  I have been off Cyclosporine for over a year now.  My CU was so severe nothing worked and went to two different doctors with no help even went on Xolair injections but that did not work for me so last doctor recommended that I go to specialist doctor at Johns Hopkins.......so grateful that she gave me my life back.  Yes....having to go on low dose of Prednisone but nothing else worked.  I was in such agony with the hives as I was unable to sleep as so painful and itchy.........a horrible disease!  I'm just hoping I will be able to go into remission without taking meds. 

    I hope you will have a better day.  Please keep us posted.

    best Regards,

    Wendy

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    • Posted

      Hi Wendy,

      Aren't the hives awful!  You're right in that prednisone does work magic on them.  I just hate the side effects of long term use.

      I currently take Allegra in the morning with Plaquenil and then Zyrtec and  singulair at night.

      Is there a connection with stress levels?

      I'm ready to take Valium and call it a day. 😂

      I've been seeing a Dr at one of the top Boston hospitals.  He's been very helpful and listens but admits I'm an interesting case.  When my local primary had no answers, I hit up the big guys.  I'm lucky (like you) to be in an area with exceptional medical facilities at my fingertips.

      Today was a lot better.  It runs it's course and hopefully this is a short one.

      Lots of rest!

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    • Posted

      Hi Wendy, 

      Do you have the name of that doctor in Baltimore? Is it easy to get an appointment there?  I recently started having symptoms consistent with Vasculitis, and feel awful. The regular PCP does not know what to do at this point.  I feel weak, tired all the time, have difficulty breathing at times, Have neck pain, and I think the artery on my neck is swollen. I have a low grade fever almost every day now, and losing weight, since I cannot eat. I would appreciate, if you have any advice for me

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    • Posted

      Hi Olga

      Im so sorry that you are not feeling well.  I am very happy and grateful for my doctor at Johns Hopkins. She has helped me to be hive free with medication that other doctors were not able to do.  Do you have Urticaria ( hives?). I can try to private message you my doctors information.  Do you live near Maryland?  I am concerned about your symptoms and think you need to be seen by a doctor soon.  I'm not sure how long it would take to get in to see her.  I will try to private message you.

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    • Posted

      Hi Olga

      i sent you Private Message with doctors information.  Please let me know if you received message.  Shouldn't you go to an urgent care doctor over the weekend ...especially if you get worse.  

      Wendy

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  • Posted

    Hi sorry your going Through this. I have to do the dreaded School run so will reply properly when i Am back. Meanwhile have you cut out gluten in your diet if not id really recommend trying and see if that makes a difference. Take care, Jessica.
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    • Posted

      Jessica,

      Thank you for your suggestion.  I tried removing a lot of variables but an allergist wasn't confident that food was a cause.  I'm not in agreement there.  It was too coincidental that the hives started after eating certain foods.

      Monday I'm going to start the Whole30 plan and see how that goes.  I'm very cognizant of what I'm eating and try to be good. 

      I met with a nutritionist who wasn't very helpful in creating a plan.  Deciphering ingredients isn't as easy as one might think.  Hence the back to basics approach and steering clear of too many ingredients.

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