Question:

Fred, I had very severe hives, but they were not really hives but vasculitis, and prednisone every other day at the lowest possible dose to control them was effective. Plaquenil was also effective. There are types of hives that are genetic and caused by complement abnormalities. If diagnosed some can be treated with injections of complement. Lynne – Hide quoted text — Show quoted text -Komsant Frederick wrote: > Hello to All, > Has anyone having hives found a better fix than > benydril/antihistamine??  I have constant hives all over my body > except for my face/head/neck region.  It’s worst around the torso and > when I get up from sleeping or when I’m really tired….I’m taking 100 > mg+ just to stop itching!  HELP! > Fred

Response:

You might try ATARAX or hydroxiine(generic) it’s the only thing that helps me because benadryl doesn’t help at all.  God Bless.  Cindy

Response:

Have you tried Atarax? It helps with hives, itching, rashes, etc and doesn’t make you nearly so sleepy.>Has anyone having hives found a better fix than >benydril/antihistamine??  I have constant hives all over my body >except for my face/head/neck region.  It’s worst around the torso and >when I get up from sleeping or when I’m really tired….I’m taking 100 >mg+ just to stop itching!  HELP!

Krystie Rose

Response:

Hey family! Krystie, I have experienced severe vasculitis to the point of nearly having to have two fingers amputated one on each hand due to possible gangrene.  My doc explained that not only does this condition have an outward manifestation but it also can occur internally which often will account for the unexplainable abdominal pain, tenderness and soreness.  When the skin tissue dies, you can visibly see the wound but internally there is no way of knowing until after the damage is done and the risk of infection is the greatest.  That is not to say this is what happens in your case.  I can only pass on to you the way this has manifested in my body.  The pain is sheer torture.  My hands were wrapped up in huge gauze bandages and changed daily. The size of the bandages were bigger than those clumsy boxing gloves which means I had to have constant help in dressing, bathing – living with no hands for a season.  Even the air caused agony when the raw spots were exposed so medicine and fresh bandages could be applied.  I visited my dermatologist daily for over a month.  Luckily he is a compassionate man and did not charge me for each visit.  High oral doses of prednisone, coupled with believe it or not, a specially compounded mixture of betadine liquid and granulated sugar, no kidding, that was applied topically, to the open wounds,  helped hasten the healing process which even after six years or so I still have numbness and pain and tenderness in the healed over spots. In regard to the severe itching.  I am passing through a season of this now. The lupus has manifested severely in my liver and caused a condition called primary biliary cirrhosis.  (Another severe attack and I will probably be placed on the UNOS wait list for a transplant.  Problem is, it has also done major damage to my heart and I will more than likely be required to have a dual organ transplant heart/liver when the time comes.  There were about 12 of these surgeries done in our country last year.  So it will be a critical time for us.  There are several medications we have used to help the itching.  Oh yeah, for me the liver enzymes like alkaline phosphotates elevate and do not pass through the filtering process of the sick liver and pass on out of my body then through my skin tissues – no you cannot see them –  My limited understanding is that they are little crystalline substances and they irritate the skin, hence the crazy frenzied urge to itch.  I keep a hairbrush at my bedside for scratching my body.  Well, it is what I do.  You’d be surprised at how desperate this gets.  In fact, this is the number one symptom that pbcers have that often leads to attempted suicide, no kidding, it is that bad.  Ok here are some of my remedies that have worked for me and some that haven’t worked.  Hope this may help your itch problem. 1.  There is a powder prescription medication called Questran, I think the generic is cholestyramine that you mix with orange juice and this works as a bile acid to bind with the enzymes that are circulating in your system so that you can elimiate them through the bowels.  This can really constipate you big time but it is mainly prescribed for lowering cholesterol but it really does provide relief from the itching as well.  I developed a sick aversion to the taste for a season and had to stop using it due to vomitting.  In small quantities it will help with chronic diahreah as well. 2.  These anti-itch over the counter lotions and potions have not worked for me and I have spent countless dollars on them. 3.  I did switch to Arm and Hammer brand laundry soap at my docs suggestion. 4.  Atarax has been my lifesaver for several years now.  I put socks on my hands when I sleep because I scratch in my sleep and make raw bloody sores that look like chicken pox all over my body.  My bedsheets are spotted with blood from this every morning.  I avoid hot hot baths.  I have varying dosages of atarax. From 25mg to 100mg.  Generally, three 25’s daily will keep it controllable so that I am not making sores but like last night, I also had to take an additional 100mg before I got some relief.  I also do not take it if I am not itching.  I have also been wheeled off to the ER on two occasions for injections of Vistiril to bring relief. 5. I avoid nylon like the plague and I use clinique brand and l’oreal makeups.  Stay away from cigarette smoke.  I have white round scars all over my body from the sores look like I burned myself with cigarettes.  Keep my nails trimmed way down most of the time. 6.  When I get cluster rashes that I can see, I use a prescription strength cortisone topical cream to help speed healing on those particular spots.  Of course, I report all this to my doc and we work together as a team. These are some of my coping strategies I am sharing with you.  You might want to visit the pbc homepage at pbc…@aol.com as they have some excellent reading about dealing with chronic itching that you may be able to use.  I am in no way implying that you have liver disease that is causing your itch and hives.  I am trying to share with you one of the many faces of lupus in my life in hopes of bringing help and encouragement to you. As you can see by mine and Linda’s responses, there are hardly no similarities in what works for each of us.  Maybe by our sharing, you will get some relief or at least some inspiration to keep on keeping on. My doc reminds me from time to time that is why we call this thing, Systemic Lupus Erythematosus….it is treated systemically as symptoms occur….there is no blanket cure yet(widely accepted, etc.) and what works for one may or may not work for another.  Just don’t stop hoping.  I care.  Many do. United we will stand.  Divided we will surely fall. 7.  OH!  I left out the most important one.  Get your husband to believe that back scratching, bottom of feet scratching, behind the knee scratching, etc., etc., etc…. is one of the greatest techniques of foreplay he could ever use to seduce you.  Mine falls for it every time!!  ;})))  Just kidding around.  Hope you don’t mind.  Judith – Hide quoted text — Show quoted text -Linda Crawford wrote in message <36DB7EFC.BCE0F…@bellsouth.net>… >Krystie, >If the manifestation of your hives is vasculitis, as it was in my case, >Plaquenil may help. >I had severe hives, and blood tests, including complement tests, determined that >I really had vasculitis. I was treated initially with prednisone that was >tapered to every other day and then gradually tapered off completely when the >Plaquenil began working. Plaquenil did control the vasculitis and hives. >Taking large doses of Atarax, Benedryl or other antihistimines did not do >anything for me. >Lynne >LadyKrysti wrote: >> Have you tried Atarax? It helps with hives, itching, rashes, etc and doesn’t >> make you nearly so sleepy.>Has anyone having hives found a better fix than >> >benydril/antihistamine??  I have constant hives all over my body >> >except for my face/head/neck region.  It’s worst around the torso and >> >when I get up from sleeping or when I’m really tired….I’m taking 100 >> >mg+ just to stop itching!  HELP! >> Krystie Rose

Response:

Hello to All, Has anyone having hives found a better fix than benydril/antihistamine??  I have constant hives all over my body except for my face/head/neck region.  It’s worst around the torso and when I get up from sleeping or when I’m really tired….I’m taking 100 mg+ just to stop itching!  HELP! Fred

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