Living with hives x 2 months- my story
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The sx are controlled with tapering doses of prednisone bid, nonsedating-antistimines 5mg levocitirizine and 20 citirizine bid, Montelukast 10mg qd, and ranitidine 300 mg bid. I also take alternating doses of hydroxizine 50 or benadryl 50 q4-6hr prn itching/hives and nightly. After 2 episodes of breakthrough hives while tapering on prednisone, my allergist added doxepine 25 mg 2 weeks ago. No more hives for 1.5 wks but the fear or anxiety is there due to difficulty weaning off steroids. I hate the steroid side effects of a desire to eat without feeling content, mini-mania episodes- I just go fast, and feeling a pounding heart beat all the time. The damage to my skin on prednisone is interesting. The lowest dose of prednisone was 25mg qd before the hives returned mild-moderately. Currently I'm taking prednisone 15mg bid and lowering by 5 mg q 2days. I have never wanted to quite a drug more.
Essentially, I am an RN and am getting my MSN/FNP soon, but the condition sucks and really makes me appreciate good health days. There is just this underlying fear 
of waking up itching, which is how my sx present. It's why I always take OTC 1st gen-antihistamines prn while weaning off prednisone. I can accept that this may be a life-long problem, but I hate it 
. I am likely to be put on hydroxychloroquine or Plaquenil next week.
I wish everyone out there the best in their journey with this condition 
.
0 likes, 2 replies
hope4cure January20
Posted
Hi January,
What a wonderful nickname. Great way to bring memories into the new year every day.
I am am so sorry you have been thru this is so miserable.
i was tapered of steroids for the same issues. It always came back.and steroids can cause a variety of mains episodes. They make me very hyper I can't sit still. Then other times I become frustrated over the littlest things. Mood swings were a constant.
I read clinical studies that as many as 10 percent to 50 percent of people with chronic idiopathic urticaria also have an underlying autoimmune thyroid condition called Hashimoto’s thyroiditis. This condition is a form of hypothyroidism (underactive thyroid).
Have you had thyroid levels checked?
i have finally found answers and controlled this thru meds for hyperthyroidism.
I also read that plaquenil is a very good medication to take . It's a decision only you can make . Try for another opinion until you feel comfortable. I'm sure your dr knows your history and can refer you to a rhumey. Or an internet.
Take care
January20 hope4cure
Posted
Hi Hope4Cure,
Your user name is interesting as well. Being in the medical field, I'm extremely comfortable with my allergist and my plan of care. I have access to all the lated research/data bases/journals/clinical guidelines since I am in grad school as well a professional RN. It is helpful to know that others are out there. As an RN and former medic w/24 yrs in healthcare, I have never dealt with any patient having this condition in the inpatient or outpatient setting so initially I felt very alone. I joined this site for support.
Thank you for your support.
I will start Plaquenil 200 mg qd tomorrow and was told it takes approx 2 months to be effective so I'll stay on prednisone 15 mg daily initially for the next 2 weeks then gradually taper by 5 mg increments to 0 mg.
Currently, I am tapering my evening dose only from 15 to 10 mg then will stop taking it all together this week. It is the night/evening (after 4p) dose of steroids that reeks havoc with our bodies natural cortisol production, which is highest in the am upon waking and tapers down in the evening. My allergist really wants me off the evening steroid. I can only hope the hives don't return
. The less steroid I take the more 1st gen antihistamine I take like q4-8 hr prn.
To answer your question- I had an initial workup for hives the 1st or 2nd week I saw the allergist (Complement, ANA and other autoimmune diseases, IgE, etc., etc.)- everything was negative, including numerous stool samples. I had also just had an annual physical with CBC, chemistry/CMP, lipid and TSH levels- all normal 2 months earlier. Today I had repeat and new labs for antithyroid antibiodies/TPO, complement and other tests. Pretty much what the American and National Allergy & Immunology community recommends. The plaquenil can accumulate in the retina so I got my eyes/retinas checked last week and told the optometrist about the planned plaquenil- I liked that she knew why the drug could be problematic, esp at certain dosages. My sister has hypothyroid and she's 4 yrs older- she has not had hives. My dad had hypothyroid but later in life > 60 yr-old and no hx of hives.
Best,
January20