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Hi, I am new here and this is my first post. I also have come down with UV and would like to learn as much as I can from you all on this message board. I need to first read all the rules and learn the process of how to ask questions, etc, but I look forward to being part of your group. Thank you, Sandy
 

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Hello Pachysandra and welcome :)

As I mentioned in my PM to you, I moved your post to start a thread of your own. That way your post is less likley to get lost among the others.

I hope that you enjoy being here and I'm sure you'll find the message boards full of support and advice.

Don't worry about being lost, we all were to start with and look at us now!!

bye for now,
Katharine
 

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:welcome: Sandy,

Take your time looking around. There is a lot of very valuable information to be found on the site. Once you feel at home feel free to post any questions you might have.

Take care,
Lazylegs
 

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Sandy,
Hi and welcome to the site. It seems that most of us have problems with uv's and no matter what we do will never be able to enjoy the sun and fun like most do. I hope you find the site helpful and interesting. There is a chat room that I hope you will use and share will us some of your experiences. I hope you are feeling well and doing well.
 

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Hi Sandy and welcome :welcome:

There are a couple of people around here who have urticarial vasculitis as well as Lupus. If you do a search using those terms you will probably bring up some older threads with some information in them.

Hope you enjoy the site and all it has to offer :)

love
Lily
 

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Discussion Starter #6
New member introduction

Hi,
I found this Lupus site message board by searching the web for Urticarial Vasculitis. I've developed increasing hives for 5 years, having never before had any. My dermatologist did a biopsy and the report came back UV. I've been taking Zyrtec, Zantac, Ranitidine daily. Previously I tried Dapsone (which helped but lowered my hemoglobin and made me very tired) and then Colchicine (which didn't seem to help.) Only Prednisone can get rid of the hives, but I believe that is not safe to stay on for long. I was surprised to see UV listed under Lupus. Is it a type of Lupus, or is it related in some way? I want to learn everything I can here. I do feel that my symptoms worsen when I'm under stress. I'm wondering if there are any supplements to improve my immune function and reduce symptoms. Now that I found your sit, I want to call my primary doc and ask for a Lupus workup, so that I know more clearly what I have and can possibly get referred to a rheumatologist if that is necessary. I look forward to meeting and learning from all of you here.
Sincerely, Sandy
 

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Welcome to the forum Sandy !

There are two sorts of UV (urticarial vasculitis) depending on the role of a protein called complement which is an essential element of the immune system. Some people with UV have low complement levels so this sort is known as hypocomplementemic UV, HUV for short. Other people have normal complement levels known as normo complementemic. These people are less likely to have systemic symptoms compared with the HUV folk who often have lupus or lupus like symptoms and may even have vascular organ involvement and other systemic complications.

A lupus work up and full health check is definitely in order. Treatment is much the same as for SLE without HUV or UV, using Plaquenil and then other disease modifying drugs as needed. If you read through the related threads you will see what therapies people are trying and also if I remember rightly, various dietary and complementary strategies that might help with management. This is a highly individual thing, as with lupus.

With autoimmune diseases "boosting" the immune system is not advisable because, if it could be done, the harmful autoimmune disease activity would be boosted too. Our immune systems are not deficient or weak, they are malfunctioning so it would be like putting a higher octane fuel into a motor engine that wasn't firing properly.
In fact there are very few substances that are known to improve immune function. If there were, immunodeficient diseases and HIV/AIDS would be helped.
Of course sometimes there are real vitamin or mineral deficiencies such as anemia, or the risk of deficiencies from using some medicines, so supplements are taken to correct or avoid the problems

Here is a very good thorough article on UV. You might have to register (free) to view Medscape/emedicine but there are other good articles on the topic.

http://emedicine.medscape.com/article/1085087-overview

Please let us know how you get on and best of luck :)

Clare
 

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Hi Sandy,

I am glad you found your way to the Introduction section of the forum. Already you have been given good advice and a link that you can go to for more information on UV. I do hope that you can get this under control.

As for long term steriod use, a lot of us are on low dose daily steriods to help keep things at bay and control inflammation and flare ups. I think if you are monitored by your doctor then daily low dose is not so bad.

I hope to get to know you better and again, so happy you found us here. I have never had UV so I am of no help personally yet a friend of mine had it and got it under control with Prednisone taper does.

Good luck moving ahead.
 

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Discussion Starter #9
Thank you all for the welcome and for the great UV article. Tomorrow I will get to see a Dermatologist, because of a huge flare I'm having with difficulty tapering down from the Prednisone I had to take for a week while I was in Mexico on a trip. (I was very fortunate to get this short-notice appointment with the doctor!) I'm hoping they can help me. Also I'd like them to order some lab tests for a thorough work-up so I can get an accurate diagnosis. I'll be going in late afternoon Pacific time (California), so I will check with your message board to see if anyone has recommended any special tests or has any comments before I leave for the appointment. I feel tremendous relief to have found all of you, having the opportunity to learn here. I am quite awkward finding my way around your website, but hopefully I won't be so "computer challenged" as time goes on! With best wishes to all, Sandy
 

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Hello again Sandra

I suggest you make a health history and all more recent or recurrent problems plus a note of chronic health problems of close blood relatives

This list of the sorts of tests that could be done is from the article linked to in my earlier post below

Laboratory Studies


  • Check CH50, C3, C4, Clq, and antibodies to Clq. If these tests are positive, evaluate renal function and urinalysis to check for the effects of vasculitis on the kidneys.
  • If warranted, obtain antinuclear antibody and lupus serologies. Anti SSA and anti SSB may be seen in patients with Sjögren syndrome.
  • If the history suggests viral infections, obtain hepatitis B, hepatitis C, and heterophile antibody serologies.
  • Direct immunofluorescence may show deposition of vascular C3, fibrin, and immunoglobulins. A lupus band may be detected in patients with underlying lupus erythematosus.
  • Test results for antineutrophilic cytoplasmic antibodies are generally negative, and, if they are positive, the possibility of Wegener granulomatosis or microscopic polyangiitis should be considered.
Imaging Studies


  • Obtain chest x-ray films for patients with hypocomplementemia and pulmonary symptoms.
Other Tests


  • If the patient is hypocomplementemic and has pulmonary symptoms, consider ordering pulmonary function tests.
Procedures


  • Perform skin biopsy to confirm the diagnosis. Recent lesions, less than 48 hours in onset, are the best for biopsy. Biopsy of a lesion of less than 24 hours' duration is best for direct immunofluorescence.

It later states that if there is suspicion of SLE or it is the hypocomplementemic variant, refer to a rheumatologist.

Treatments options include most of the usual for SLE: hydroxychloroquine
( Plaquenil ), azathioprine( Imuran) which can especially reduce the need for Prednisone which should be taken at the lowest possible dose for as short a time as possible. There are reports of a drug called Cellcept being effective and even Rituxan if need be but there've been no widespread studies of these drugs for HUV.

This is rather a specialised subject and maybe your dermatologist isn't familiar with it. They and rheumatologists aren't always familiar with lupus either.
I hope this info will help you to get the best for yourself and also gauge your dermy's competence. It is a good sign when a doctor has a treatment plan and is willing to discuss your case and options with you. And of course does the necessary testing !

Please let us know how it goes

:)
Clare
 

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I forgot to mention that we can help you re the website if you can say what particular difficulties you are finding.
If it is the common problem of finding your own posts, click on your name and you can see a list of all your posts.
The Quick Links at top right can show all latest posts since you last visited which can be useful

:)
Clare
 

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Discussion Starter #12
I want to thank everyone and especially Clare for her last post to help me with a comprehensive list of lab tests to request. The doc I saw today (plus 2 residents who interviewed me 1st) are very open to discussing treatment options and doing a good thorough workup. I'm being tapered off the prednisone, under their guidance for a 3 week period. I'm so relieved to be getting support with this. I guess when my results are back, I'll know more to say. But I have a follow-up appointment 3 weeks from today, and have 3 direct phone numbers to call if I need any help in the meantime... the attending Dermatologist, the resident physician, and the RN clinic co-ordinator.
So I came away feeling very positive today and much relieved!
-Sandy
 

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I forgot, also, to thank Clare T. for the help navigating the website. I have indeed had trouble finding my own posts and the replies that were made to them. But finally I did- and I'll now review all that you write to hopefully figure this out! Thanks very much!
-Sandy
 

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Clare I also want to thank you for posting such a comprehensive list for others to benefit by as well.

I think you went to The college for Lupus and got your 4 year degree there.:lol:

How does anyone retain so much information??? Your a amazing woman!!!!

From all of us............HUGS AND THANKS!;)
 
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