xyzal

Wendy;  I'm still on Prednisone every day, 10 mgs.  I have tried to get off, but anything less than 10 mgs and my hives are not bearable.  I am not hive free, but at least they fade within a few hours every morning.  I am also now taking the Xolair injections, but have only had them one month.  So, far, they have not improved my condition.  I am not sure what Cyclosporine is but if it's a common OTC antihistamine, I'm sure I've tried it too.  Thanks ~ 

I had SEVERE Urticaria 2015 and tried everything!! All OTC drugs as well as Xolair that did not work for me....And went to 3 doctors until I found doctor that knows how to treat Urticaria. I am in the US and my doctor is in Johns Hopkins in MD.  Cyclosporine is not OTC.  It is prescription.  I slowly went up on the Cyclosporine Modified ........some patients had hive free when they got to 100 mg but mine was so severe I went up to 200 mg and doctor had to add Prednisone 60 mg to be hive free ( such a relief ). I took that dose for couple weeks then she had me go down 1 mg at a time for a couple weeks...so 59mg......couple weeks......58mg....couple of weeks......57mg and so on. Then very slowly went down on Cyclosporine...took a couple of months.  The Prednisone took longer until I was down to 1mg every other day then due to a family stress I had a minimal breakout of hives so doctor raised Prednisone up to 20mg then when hive free she had me go slowly down again 1 mg at a time.....that is the key.....very gradual off the Prednisone.  I am now down to 7 mg still hive free..next week I will go down to 6 mg....etc.  are you in the US?

i hope this helps Meemaw.  Perhaps your doctor can contact mine to help you.

i Also take Allegra a few times a week only 1 a day when I take it.  Claritin and others were not strong enough.

i hope this helps.

Wendy

Wendy, yes this helps me a lot.  I am in Missouri, USA.  I've had hives for over 4 months straight now, with only a few days clear. I have consulted a physician in STL who said that my case is the worst he has ever seen.  So, as far as severe, yes, I am right there with you.  I see my dermatologist next week for the second set of Xolair injections.  I will ask him about the Cyclosporine. I'm really discouraged today about it.  My chiropractor suggested Gluten free diet...been doing that for 2 months with no change.  As of this week, he added all dairy, tomoatos, bananas, peanuts, sweeteners, chocolate and wine as well to avoid.  That doesn't leave a lot except unprocessed meats and fresh vegetables...of course I can't season them with any butter.  I can't tell any improvement by giving up so many foods either and I miss my glass of wine  - some days it's my "liquid xanax".  Thank you for your response.   

Hi Meemaw

I was seeing an allergist at first, she had me try the Xolair after I tried everything else....when the 3rd injection did not work she said to stop as it should have worked by then...then she had me go to the specialists at Johns Hopkins as she was not able to help me ( scary when a doctor can't help you ).

when nothing else works then the Cyclosporine is started ( it is prescription only).  A friend of mine from the U.K. only needed half of what I needed and did not need the Prednisone added.  She was only on the  Cyclosporine for about 6 months then slowly went down.  She is still hive free unless she has wine then she will break out some and will require Allegra.  Meemaw, if after you try everything and cannot achieve being hive free with quality of life I would be happy to give you the name of my doctor at Hopkins so your doctor can contact her.  Just private message me.  Good advice from your doctor eating healthy.....so important!  Stay away from processed foods.  Try to eat grassfed meats and wild caught fish.....lots of vegetables.....and yes stay away from alcohol and wine....I LOVE chocolate but I have to consume very little........helping our gut is so important.  It takes time for change of diet. fermented foods are also good.  Fortunately I like sauerkraut and think pickles are good. Try hard to avoid stress!!!

I wish you well Meemaw....to get hive free!  I did not have quality of life!  I am now 65.  I had Urticaria two other times in my life and was able to keep hives away with Claritin then but lasted 2 years each time with decades of no hives in between.  The Claritin now no longer worked.....Allegra has become my best friend when I had that minimal breakout due to stress!!  Please try it.

let us know what doctor says.  And YES.....so important PRAY that the Lord will give the doctors wisdom.

blessings,

Wendy

I take 3 Claritins every morning with my 10 mgs of prednisone and am still breaking out.  At Sams, buying two bottles at a time, the cost of the Xyzal is about the same and that's why I thought I would try it!  Do you take Doxepin too by chance to help you sleep at night?  

Yes, I take 100mg of Doxepin, 50mg of Benadryl and an occasional  Xanax to help with itching and sleep. I don't know what I would do without the Doxepin, because it really helps with sleeping. 

Excellent -- thank you for your reply!  I've only been taking Doxepin a few nights but I can tell, it really does help me sleep!  God bless! 

I couldn't take it without the prayers of so many family and friends!  

I have another question...forgive me, but this is still new to me overall......I'm in my 5th month of the journey.  I seem to be getting frequent cold sore break outs too.  I've fought them for years, but never as frequently as they are coming now and when I get one, I seem to get another and maybe even a third before they finally clear up.  Do you know if that is common for people fighting with hives?  I do have prescription medicine for them, so they don't get horrible, but still I'm concerned about why I am getting them so frequently.  

Hi Meemaw,

Unfortunately, if you currently use or have used prednisone (or any steroid), it suppresses your body's ability to control the HSV, a virus which usually stays dormant in the CN V/Trigeminal nerve. THis is why steroids and other immunosuppresants like cyclosporine (Neoral, Sandimmune, Gengraf) or azathioprine (Imuran, Azasan) are bad news when used long-term b/c they leave you susceptible to other infections; however for many of us, we need those medications to supress the immune response in hives, rheumatoid arthritis or organ transplant. 

You might need to be on daily vancyclovir or other -acyclovir for 1 yr or more to continuously suppress outbreaks so discuss with your providers.

I should have thought about that myself....duh....I feel like i have learned so much about this chronic condition but am learning that I still have much to learn.  You are absolutely right and spoken like a true expert or a physician yourself.  Thanks much!  When I go back to my doctor next week I will talk to him about the Vancyclovir..... 

Hi Meemaw

Please let us know how your appointment goes with your doctor next week.   Yes, I wish we did not have to take Prednisone as it's not the best thing for our bodies but it is a blessing for many of us to have quality of life.  Fortunately low dose seems to keep hives away.  Healing naturally is the best way to treat though....  Eating right ...healing our gut......and less stress are all so important.  I am starting to go down to 6 mg Prednisone today for a week or so before going down to 5mg. Doctor also wants me to take Allegra one a day.  I will keep you all posted.

Have a good day!

Wendy