Hi guys, I've been suffering with urticaria on and off for 7 years, nothing seems to work I've tried almost every anti histamine there is, been hearing alot about levocetirizine so asked my doctor if I could try it, has anyone else tried this with any success? If so how long did it take? I've been taking it for 2 days and not noticed any improvement.
Thanks for any info you can give me
Xx
Hi Laura
Do you live in UK, if so have you seen a specialist in urticaria? Anti-histamines on their own can only work on mild urticaria. I've not heard of what you are taking before but I've googled it and it works differently to anti-histamines. If it was going to work you should have noticed by now. Some other urticaria sufferers have spoken about a drug called Xolair which is administered by injection and they have had good results. I live in the UK and my specialist put me on Cyclosporine for 6mths alongside antihistamines. This has worked for me but I still get itchy if for instance I kneel down with out padding for the knees or itch a scratch etc. My triggers may be different from yours. If you do live in the UK there is a really good specialist on NHS workes at Sheffield Hallamshire Hospital called Dr Sabroe she is the top UK specialist and she is really good. GPs cannot really help people with Chronic Urticaria as it is a specialist condition. You need a referral.
Lorraine
I've not tried levocetrizine, but have tried almost every other antihistamine and none really helped. Doxepin worked but kills your life.
I'm going to see a specialist, Dr. Alexander Marsland to discuss my options. I want to talk to him about the possiblity of trying Xolair. I've had this for 2.5 years.
After dropping Doxepin, I tried the SSRI Paroxetine. The rash got worse without Doxepin. But Paroxetin definitely helped with the itching but I had a lot of problems with the other side-effects especially early morning waking with diahrrea and stomach cramps and nausea and motion sickness for over 9 weeks. I've switched to Sertraline and that's better in terms of side-effects but not as good for dulling the itch.
Failing Xolair, you could look into Cyclosporine. If Dr. Marsland isn't able to help me, I'll contact Dr. Sabroe. But be aware, there are two Dr. Sabroe's in that hospital. I take it that it is the female Dr. Sabroe who I think is a dermatologist?
I have been taking 300mg Ranitidine and 10mg Montelukast in the AM, and 300mg Randitidine in the PM. I have been taking this combo for over 6 months and rarely have outbreaks unless i forget to take my pills, and even then it's just minor until my meds kick in once i take them. Before being put on these meds, I was miserable. My lips, hands, feet and eyes would swell and my entire body was red, completely covered in hives. These two medications have completely turned my life around and I feel like my normal self again.
Hi Lorriane
As mentioned I am on both Xolair injections going on 4 months of shots and Cyclosporine 100mg. As the Xolair was not taking away my hives. Just the first couple of weeks then hives got bad so had to go on cyclosporine which is keeping most hives away....I just had to add Zyterc in the evenings as I started to "itch". My husband could not see any hives on my back but I was itchy ........You mentioned itchy as well. Is your skin itchy without the appearience of hives?
wendy
Yup, I know people that Montelukast has worked wonders for too. It didn't do anything for me, even for my Asthma.
For many people, just Cetrizine will sort it. But not me, unfortunately. Even Xolair / Cyclosporine doesn't work for some people. At least I have Doxepin to fall back on, but I'd rather not, it just has too many nasty side effects.
Thanks for the replys, I am in the uk and am under a specialist, I have heard about Xolair and will ask about it in my next appointment, just wish these would go away!! I've been in remission a few times but it's back again and more frustrating than ever! Xxx
It amazing how different drugs effect different people with Chronic Urticaria! Doxepin just made me sleepy taken at night which is good but had no nasty side effects for me.
wendy
Hi Wendy
Sometimes yes, don't know why either, I try not to itch and if I'm really twitchy I have another antihistamine, usually Loretidine, seems to help. I think sometimes every itch we have worries us and anxiety, for me, is a trigger so I try to be cool about it. If I'm busy outside, walking for instance it doesn't happen, or if I'm busy in the house. It usually happens when I have time to think. When my skin was really bad and an itch started I panicked - I don't want to be like that again and I'm sure you know what I mean.
Lorraine
Hi Desmond and Laura
I'm sorry Doxepin hasn't worked for you. For me it took me out of my depression and back to being me. The only side effect I think I have is loose stools but this may be caused by my body not processing food properly as I've had a problem with this since I had my gall bladder out. Yes you are right Dr Sabroe is in Dermatology and is a woman.
Lorraine
Hi Laura
I went into remission last year thinking that would be that and I stopped taking antihistamines. That was in April/May time and by September it was back with a vengence. I'm in remission now but am still taking antihistamines and Doxepin in the hope it won't return!!
Lorraine
Hi Lorraine
Oh you are so right about stress and anxiety....I have been the same way and need to keep busy more...when I feel worry coming on. Last night during the night I had a bad set back with the hives! Face eyes back legs and was unable to go to our daughters college today with my husband!! Which was so disappointing!! The past few nights I have been woken up by the itches which was concerning as I don't want to have to bump up to 150mg on the cyclosporine! During the night I took a fexofinadine that calmed the hives but we're still there this morning. I probably should have gone with my husband but did not want to have more breakouts with meeting her new roommate and her parents....embarrassing and didn't want our daughter to have to introduce her hives Mom to them........did your doctor try to keep you at 100mg. My first blood check came back with slightly elevated liver enzyme.......so pray that it doesn't get worse. Today I will try the Zyrtec this morning after my cyclosporine and take the fexofenadine tonight as it seems to work better and take the Doxepin. How many mg do you take for Doxepin? 50?
This is NOT fun! Any other advice is greatly appreciated! Oh and I may have a UTI if not that, then a female issue..........goodness!!
Best,
Wendy
Hi Wendy
I used to wake up with red itchy rashes. My lovely partner suggested using a silicon based cream or silicon lubricant to protect my legs and arms in bed because as we sleep our legs press against one another and so do our arms. I also had alot of problems of chaffing behind my knees as well from the cushion or seat I was sat on plus anything I wore that creased behind my knees, arms also along seams and in the bend of my elbow. The silicon does work very well and I try to sleep without putting my leg on top of the other.
Don't worry too much about the slightly elevated liver enzyme, cyclosporine did this with me and my specialist was not concerned. I take 75mg of Doxepin.
Our busy lives are full of decisions we have to make, disappointments hopefully occasionally and associated stress plus medical problems is it a wonder we get hives. I do hope you do not have these medical problems on top of everything else.
With sympathy
Lorraine
Hi Lorraine
Goodness, I feel like I am falling apart at my age of 63. Between Urticaria, UTIs, and Migraines!
i have to say I am so frustrated with the conflicting low and high histamine foods ........I have googled and there are so many conflicting foods that differ...I just don't know what to eat. I have already lost 5 pounds which I don't want to lose any more. What do you have for breakfast for example and lunch and dinner? Any cereals allowed? I think eggs are okay if cooked well..is Canadian bacon okay with very little fat? I don't know if you have that in the UK. The past couple of days I have had raw onions on lean burger cooked at home....I saw your info on cooking the onions needing to be cooked well...oops. I made burger to get some protein.
im going to do the 50 mg tonight Doxepin then bump it up to 75 if need be. I love prunes raisins chocolate but have been staying away from those. How about ice cream?
looking forward to hearing from you
thank you
Wendy
Hi Wendy
I went to a Nutrionalist and she gave me the following lists:
Foods you can eat:
fresh red meat and fresh fish
fresh chicken
egg (make sure whites are cooked)
fruit except strawberries
fresh (not canned) vegetables except tomatoes
cabbage, broccoli, green beans, carrots, parsnips, squash
potatos and sweet potato (so fries are ok - phew!)
grains - rice noodles, rye bread, crisp bread, oats, millet flour, pasta (spelt and corn based)
fresh milk and milk products
milk substitues - coconut milk, rice milk (not soya)
cream cheese, butter (make sure not rancid)
leafy herbs
non citric fruit juices
herbal teas
what not to eat/drink:
alcohol
pickled or canned foods - sauerkrauts
matured cheeses
smoked meat products - salami, ham sausages
shellfish
beans and pulses, chickpeas, soybeans, peanutsm mushrooms
nuts - walnuts, cashew nuts
cholocates (sob!) and other cocoa based products
most citric fruits - oranges, kiwi, lemon, lime, pineapple, plums, papaya
vinegar
ready meals
salty snacks, swetts with preservatives and colourings.
Surprisingly there is a lot left. I had my gall bladder out a few years ago and I had problems with my gut which is why its such a comprehensive list. I though I had leaky gut syndrome - anyway following this diet whilst taking the medication specialist gave me seemed to work.
I had porridge for breakfast made either with rice milk or oat milk. I could have chicken or meat in sandwiches for lunch and main meals with fresh meat, fish, chicken and veggies. I could have pasta but without the rich cheesy sauce, I added cream cheese which I could have. You can season with garlic, cooked onions, courgettes. Don't overdo the wheat products but I don't think you need to eliminate them. When my condition was really bad I couldn't eat cakes etc without getting lumps but I'm ok now. I had ice cream and I was okay so I'm sure you will be aswell but not chocolate or lemon or orange or strawberry I would suggest - its not too bad is it?
Just curious what part of US are you from and I can work out time difference for our chats?
Speak to you soon
Lorraine
Hi Lorriane!
You are the best! Thank you so much for your wonderful list....it is a great help! When you have chicken for lunch can it be leftover from the night before or does that have to be fresh too? Yay......ice cream! If I can't have chocolate which I know...how about coffee ice cream and can you drink coffee?
I live in Virginia on the East coast of the U.S. It's great to be able to communicate! I asked my doctor about Levocetirizine as it's fairly new. The Zyrtec doesn't seem to work very good at night so I thought I would try it. She is suggesting Fexofenadine morning Zyrtec in afternoon and Levocetirizine at night. I will give it a try. But need to ask her about Doxepin as well.....oh my gosh listen to all these drugs! When I'm off Cyclosporine I do want to try the Quercetin as it is a natural supplement and seem to work very well with a couple bloggers. Have you checked it out?
Well I need to get to the store..I guess it's night there now? If so have a good night!
Wendy
Hi Wendy
Yes its night time here nearly my bedtime. You can eat leftovers but I wouldn't leave them more than the next day. Forgot to tell you coffee is ok but black or green tea isn't, and thank goodness for that because I love my morning coffee.
I haven't heard of Quercetin what does it do? Don't worry too much about the amount of medication, my specialist doesn't count antihistamines as a problem but obviously the Cyclosporine and Doxepin are drugs you can't mess with.
Enjoy your shopping and I look forward to hearing from you again.
Goodnight
Lorraine
Hello Lorriane
i hope you are having a good day! Quercetin is a anti-inflammatory supplement that helps lower your body's histamine load...stabilizing histamine- releasing cells and lessening symptoms...check it out online and ask your doctor about it. Most doctors as you know deal will just drugs but there are some other healthy ways to combat this.
I forgot to ask you about reason you got off the cyclosporine after 6 months was it for safety or did your blood check indicate you need to get off it ? I just pray I will go into remission when I get off it too.
I saw on another list that pumpkin was on the no list? I just made pumpkin bread for our daughter to take to school....but the pumpkin was in a can......should I not eat it...:-( I tried the Levocetrizine last night...sure helped me to sleep and seem to help lesson the hives a little....we will see the next few nights.
take good care! Where in the UK are you?
wendy
Hi Wendy
Yes sorry I forgot pumpkin till I was in bed, try just a little of the bread to see if you have a reaction, you might not. I've not heard of pumpkin bread just pumpkin pie - sounds nice.
Cyclosporine is usually given to people who have had an organ transplant to prevent rejection as it suppresses the body's immune system. So its only given for short periods for that reason, did your doctor tell you not to go out in the sun? Thats because your immune system is depressed and your skin is not protected from skin cancers, I hope you were told this. You cannot eat grapefruit on Cyclosporine as well but I don't know why something in it I expect. Long term use can affect liver function which is another reason you can't be on it for long. Although its a nasty drug I was ok apart from headaches which is a side effect and my hives did go so I expect yours will too. I had regular blood checks for liver function and platelet count but was ok.
Have you seen the comment about Sulphur tablets? Someone called Barbara recommended them as they sorted her outbreak of hives and they are easy to get hold of and quite cheap.
I live in East Yorkshire, England. I've been to US three times to see your beautiful National Parks in Colorado, Utah, Arizona and South Dakota - absolutely stunning.
You take care too
Lorraine
Hi Lorriane
i sure hope I don't get headaches from Cyclosporine as I get Migraines. How often did you get the headaches? Did you start to get them from the beginning? I'll be on it for almost a month this Sunday. I did get a few days of headaches but sometimes do with weather changes. Hopefully you didn't get them everyday. My doctor mentioned just being on cyclosporine for 8 weeks........you were on it for 6 months. I wouldn't want to get off it too soon. I will get my blood checked again on Friday so will get results Monday.
I was able to get appointment at Johns Hopkins with a CU specialist August 31 for help and to get second opinion...my young doctor encouraged it as she is running out of options........isn't that scary!
Yes you have seen a lot of the beauty of our country.....Actually you have seen more than me!😄 I would love to travel to the UK...maybe someday! I'm so glad that we can communicate! I hope you have a good night!
Take good care!
Wendy