PLEASE READ IF YOU ARE SUFFERING FROM HIVES

That is fantastic! While it may not work for everyone, you gave us a glimmer of hope! I am doing extensive research on these meds but since I can't take Aspertame (In singular), I may have to go another route.

My other route is not just fixing the symptoms, but addressing the whole immune system. Much slower in terms of results, but no medications. Since chronic idieopathic urticaria is usually caused by an autoimmune dysfuction (once a person has one autoimmune disease s/he might well get another - this is my second) , I have just started on the "autoimmune protocol/paleo" diet, on which I am doing a great deal of research. In one week my bloomings (as I call them) are not quite as intense and I have gotten thinner. I may take 2 months or more to get really good results and it means giving up foods I love as well as fully sharing social occassions - at least for awhile. It causing huge emotional upheavals at this point, but I WILL settle into it.

I suggest that all sufferers look into this as a long term option. Most people who have this are younger than I (76) and have a lifetime to look at. The book I recommend at this point is "The Paleo Solution" by Sarah Ballantyne. Very dense science for 1/3, but you can absorb that gradually. The rest addresses the problem clearly and doably. Look forward to a lifetime of good health.

I'm really happy you have found some relief. Enjoy it! The side effects of Doxepin do get less with time maybe apart from the acid reflux / indigestion and of course the weight gain. Once things settle down, you might be able to find that taking doxepin every other day, twice a week or even once a week works for you. My hives and pruritus got better from the 1 year mark and 2 years on seems to be going away. I think removing the stress of the discomfort with doxepin helped the recovery. But you might find that life can be slightly tough going with doxepin. You will be drowsy, disinterested / unenthusiasic, low in energy, hungry all the time, dizzy / clumsy, outgrowing your clothes etc... There are lot of unpleasant and inconvenient side effects. But they are worth it in the short-term to get relief from the extreme suffering on urticaria / pruritus. But I do regret not trying to taper the doxepin dose earlier. In hindsight, 3-6 months in, I could have taken half, quarter or less often and still been fine while having more of a life / career. At the moment I am off doxepin completely for about a month. In the end I found taking doxepin regularly at approx. quarter doses twice week at 7pm (so I would not be so drowsy in the late morning). I'd often be asleep by 9pm though.

The past 2 weeks I am trying Paroxetine, an effective SSRI. So far, the hives and even mild rashes / flushing have completely dissappeared. I take fexofenadine in the morning and half an atarax at night. You are right about taking H1 and H2 anti-histamines helping. Montelukast seems to help many but not me. It didn't even help my asthma strangely! But seretonin is another factor in itch. I suspect it is partly the effect on seretonin that makes Doxepin and now Paroxetine effective in my case and probably others. The effect on reducing anxiety is probably helpful too in getting you back on your feet and not over-focusing on the CU which can become all-consuming as it ruins your life.

A low-histamine diet and recently a high pro-biotic and high pre-biotic diet has helped get me back to feeling better than I have since this started over two years ago. I've been avoiding sea-food, fish, most processed foods, aubergine, strawberries, citrus, hard / mature cheeses, wine etc... For pro-biotics I did a course of VSL3 (expensive!) and now just greek yoghurt. For pre-biotics it's raw leek salads, onion salads, asparagus, banana.

I think the anti-depressant has been helpful too, because if you suffer with this for years, it inevitably drags your mood down. Not enjoying the diarhea and early waking insomnia of SSRIs but it's nothing compared to itching.

I think a month away from outdoor after a knee injury helped too. Excercising outside in the pollen wasn't necessarily helping. I might think about switching from running to indoor swimming.

Hi folks! 

Just a note from a recovered CU sufferer. I'm still taking fexofenadine & Zantac, plus quercetin in the mornings. (Very helpful herb which stabilizes the mast cells). But the big thing for me was fixing my vitamin D deficiency, which is one of the known causes of CU. 

Only some sufferers have an underlying autoimmune disorder & the ones they have can vary. Other known causes are a thyroid problem and a vitamin D deficiency (mine was quite severe, due to no supplementation in recent years & steady use of sunscreen,). Very rarely,, CU can have a very serious cause (lymphoma). iIt's good to have the blood tests. For me, I happily experienced steady improvement with the vitamin D supplementation. Now I can even have wine with no problem!

Also, most cases do simply improve over time, though it is certainly one of the worst things one can experience. Good luck with the recovery to all sufferers.

 

re Quercetin--it was endorsed by my allergist here in NY.  Very impressive herb. But should be limited to a max of 500 mg per day.  I take a version with a little bromelain and some vitamin C.  I tried the low histamine diet for a while, but no longer need it and it excludes some very healthy foods.  So happy to be off it.  Am still avoiding aspirin and NSaids which can precipitate attacks.  Also found the hist-tame products very useful when ingesting a high histamine food (especially fermented products like wine and vinegar).  But no longer need that either!  Yay.

I elsewhere posted links to the studies on vitamin D and CU.  Well worth remedying any deficiency you might have (for CU and other problems that might have brought you).