levocetirizine?

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

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 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

 

Hi Wendy

If you haven't experienced headaches now you won't.  I am prone to headaches, they are not migraines though.  I have slight arthritis in my neck and if I am tense (and hives makes you tense!) I get headaches so it might not have been the cyclosporine, sorry to have worried you.  Glad you managed to see a specialist, you have a good doctor who isn't frightened of saying she doesn't know everything, some do!

I loves my trips to the US, where we were people were genuinely very friendly.  We didn't go into any cities, we only drove through Denver to join the highway we wanted but it very very busy, a six lane road is  daunting, we don't have them in the UK.

I had a very good night and I hope you have one too.

Lorraine

 

Hi Loriane

I have been doing research on CU this morning.  Evidently a high dose of Vitamin C and taking the Quercetin has worked very well with patients that have CU.  I googled Vitamin C and Chronic Urticaria .  Have you heard of that or tried it?  Some have taken up to 6,000 mg a day Vitamin C to begin with and Quercetin 500 mg 3 times a day 20 minutes before a meal.  Might be something to look into.

Yes, since I have been on the cyclosporine for a month now I should be okay about the headaches......no worries!😊

i just cant cant wait to get off all these meds.....plus I'm getting the Xolair injections......and I still get breakouts...not bad as before though.  I look forward to hear what the specialist will have to say.

i hope you are having a great day!

Regards from Your hives friend from the U.S.,

Wendy

Hi Wendy

I take quite alot of vitamins already but I'll look into the extra vit C and Quercetin.  I've read some good things about Xolair on this forum for those people who antihistamines do not work well so I hope this works well for you.  I also hope your specialist is as supportive as mine is in the UK because its comforting to know that someone out there understands what we have and what we go through, don't you think?

I have had a lazy day today catching up on programmes I have recorded so I'll have to catch up on other things tomorrow.

Hope you have a hive free day from your Uk friend

Lorraine

 

Hi Lorraine

the Xolair shots worked great the first week of my first shot....so disappointing and upsetting that it is not working as I had hoped....although I'm not giving up yet, I go for my 4th shot next week....it's hard to know now what is keeping the hives back....my doctor says probably both😩shots and cyclosporine. Yes, dear friend it is so important to have a specialist that has compassion as well as knowledge to care for CU patients.  I'm so glad you have such a wonderful doctor and so good of you to recommend her to others that are in need in the UK.

Let me know what you think about the Vitamin C and Quercetin.

Have a good night.......and a busy day tomorrow😄

Wendy

Hi Wendy

The specialist you will be seeing may be able to answer your question better.  I have googled Xolair and it does seen to be appropriate treatment for patients for whom antihistamines are not working and taking alongside Cyclosporine.  Do try to get hold of sulphur tablets other people on this site have said it works for them when they have a breakout of hives and they are easy to get hold of.

Right, I'll get on with my jobs now, have a good night and speak to you soon.

Lorraine

Good Morning

while on cyclosporine did you lose hair??  The past few days I have been losing a lot of hair unless it's because I am on both Xolair and cyclosporine?  Not good on top of everything else!

wendy

Afternoon Wendy

Just googled Xolair hair loss? and it is one of the side effects not Cyclosporine.  I know you are due to have another Xolair jab and that antishistamines don't usually clear the hives for you.  How many antihistamines were you taking when they were not working?  You're aware I take Fexofenedine in the mornings and Loratadine in the evening before bed but my specialist is happy if I take more if I have to, so you could too if it helps.  Will you be bring this up with the specialist you are due to see soon?

If you wake up with a rash do you mind telling me were the rash is because it might be delayed pressure from how you are sleeping, for instance legs if you have them together or arms etc.  This happened to me quite alot and I had to get up in the night to dab with salted water.  My partner suggested a silicon based cream called Lanacane Anti-Chafing Gel and you can get it on-line direct from Amazon.  Its great I put it anywhere I might get chafing, during the day along the inside seams of trousers, sleeves, waistband, bra.  I also try to sleep without resting by legs on top of each other, arms too - its become a habit now.

I also turn all my underclothes inside out so I have flat seams next to my skin because I had alot of problems from the seams of my clothing. In fact I've sewn soft tape inside most of my trousers on the inside leg seams also anything with long seams, under arms. I take labels off the back of the neck of clothing - a nuisance but its been worth it for the comfort.  I check the softness of seams on any new clothes I buy as well.

I hope my experience in this can help a bit.

You can do without the hair loss problem on top of everything else so I hope your new specialist can help with your concerns about Xolair.

I look forward to hearing from you Wendy

Lorraine

 

Hi Lorraine

thank you for your fast reply. I have been googling all morning about cyclosporine and hair loss as well as too much hair.....I guess it reacts differently to each.  Many women have hair loss as well as unwanted hair gain on unwanted areas :-(.  I did not Google Xolair yet about hair loss......not happy to hear about hair loss with that too.  Did you have any hair loss of head hair OR hair gain on face, etc. with cyclosporine?

i tried the antihistamine route but hives were too strong.  My previous hive attacks in the last years I was able to control the urticaria with Allegra and Singulair.

Did the hair grow back okay after stopping  Xolair?

thanks

wendy

Hi Wendy

I did get some hair growth, legs mainly, nothing major and I am not sure if it wasn't something to do with coming off HRT last May which affected my oestrogen levels.  I understand some women do get hair growth as they lose oestrogen.  I have never been on Xolair but may someone else on this site can give you the answer.

The histamine route was fine for me the first time I had hives but I stopped taking them too soon I think which, amongst other triggers, may have kicked off my second bout which was alot worse like yours.  The cyclosporine should work but I'm not sure 8 weeks is enough time if you are getting break throughs because mine didn't disappear properly until I'd been on it a couple of months.

I hope someone comes up with an answer for you Wendy.

Take care

Lorraine

Hi.......I goofed I meant to say cyclosporine instead of Xolair.  I just sent my concerns off to my doctor that unfortunately she is gone for the weekend.

So no hair loss after you got off cyclosporine?  I am so glad for you!

its amazing that I am taking both Xolair and cyclosporine plus some antihistamines and I still break out!   Scary!

Anxious to see the specialist on the 31st!  I pray he will have the right answers and direction for me.....I sure need that!  Maybe I need to go off Xolair.........I guess we will see.

So...did you get a lot done today? 😄 sorry for my stress today!

have a nice relaxing evening!

wendy

Hi Wendy

No problem. There doesn't seem to be a problem with taking both drugs together but everyone reacts differently so your specialist might have more information than you can get on line.

Yes got a lot done thanks but more tomorrow😢

Speak to you soon

Lorraine

Any hair loss during or after cyclosporine? I don't think you answered that.....

wendy

Hi Wendy

No hair loss at all. Your loss may be stress do you think not medication? Just a thought as you are going through it at the moment and l know what that feels like, and it's not easy to get out of that cycle is it?

It will get better try not to worry too much.

Lorraine

Hi Lorriane

Stress? what's that? Me......no😄

Well it's because of so many having hair loss issues with Xolair some losing most of their hair..yikes!

however.........this girl is going to try and put that behind her!  Thank you for your patience with me today dear friend!

to answer your earlier question:

yes I do still wake up with the hives...some on my face.....behind my neck and itchy in my scalp......some behind shoulders......some in lower back of my legs  some you can't see them but it itches inside if that makes sense.

i hope you get your work done tomorrow....it's the weekend..time to rest!

have a good rest...Goodnight!

wendy

Hi Wendy

Hey none of us live without stress do we its modern life.  I know what you mean by hidden itchiness.  I have a particular patch on my left shin that can itch like crazy no redness or rash and it keeps me awake at night sometimes.  I dab with salty water and take another loretedine and hope to get to sleep.  My scalp and neck was really bad at one time, I make sure I use a sulphate free shampoo and limit the products I use on my hair.  If you can get hold of that Lanacane Anti-Chafing Gel put some of that on the back of your neck.  My hair was causing the back of my neck to itch as it rested against my neck.  The rubbing of the neck of my clothes caused little pimples to rise between my shoulders.  The gel helped with these irritations.  The back of your legs could be pressure from what you are sitting on.  I've had to put smooth cloths on the seat of the armchair I sit on to stop that and it does help alongside the anti-chafing gel.  I had to use the gel on my feel because when my hives was bad I had rashes around my ankles where the socks were and pressure rash on my feet from my shoes.  I was not a happy bunny!  The gel helped though.

Doing some gardening today so although its work I'll enjoy it.

Speak to you soon Wendy

Lorraine

Hi Lorriane

its just amazing what we have to go through just to get comfortable. Thank you for all your tips!  I will check my shampoo for sulphate.  I have used the same shampoo for years but I guess when we our bodies are attacking us with histamine....things change.

Last night I wasn't sure if I took my nightly medication Levocetirizine so I decided not to take it as I didn't want to take too many.......big mistake. Woke up Itching everywhere so took a fexofinadine as if I took the Levocetirizine during the night I would have had a hard time getting to sleep.....I also fixed fish last night not shellfish...but fish for the first time.......hummm. So starting this morning I took out all my meds for the day so I will be sure not to miss any. That is concerning though that with all the meds I'm taking including two big ones Xolair and Cyclosporine plus the antihistamines...if I forget ONE antihistamine....I break out big.

Did you have swelling under your eyes?  I do...feels like fluid...didn't have bags before..hopefully they settle down in remission.  My last remission lasted over 10 years!!

Sounds like you have a good day ahead of you with gardening!  I love to garden!!  Were you told to stay out of the sun with cyclosporine? I have been trying to so I garden in the shady areas 😀. I'm going to do some housework then head outside myself.

Enjoy your day!

Wendy

Hi Wendy

My specialist told me to take fexofenedine in the mornings as it is a non-drowsy antihistamine and loretedine in the evenings as it can have a drowsy effect.  I sometimes take cetirizine during the day if I have got a rash from chafing because again this is a non-drowsy antihistamine. From what I have read about levocetirizone it works differently than other antihistamines but can have a drowsy effect so it might be better to take these in the evening, it might help you sleep.  I organise my meds as well. I write Mon, Tues etc on the back of the foil so I know whether I've taken them or not.  I have them ready first thing I get up where I can see them and the same at night so I don't forget.'

Before I went into remission I did get a reaction when I ate salmon even though it was freshly bought, so if you eat in the evening have an antihistamine after you've eaten as a preventative, I used to.  I've just googled about your eye swelling up - something you could check with the specialist is angioedema urticaria which some people have alongside spontaneous urticaria and surprise surprise more women suffer than men.  Does the swelling go down within 24 hrs? Hope I've not caused you to worry mentioning this because it could be nothing to do with urticaria at all.

I didn't get swelling on my face but my specialist did think I might also have vasculitis urticaria because most of the breakouts I had was close to veins and arteries and didn't go away for days which is unusual if its angioedema or urticaria.

I think it might be a good idea if your pharmacist could tell you or find out if  xolair, levocetirizine, fexofenadine and cyclosporine are ok to take together, meaning is any of them contraindicative (working against each other).  I know my specialist was careful about this but you haven't seen yours yet and general practitioners are not chemists and from my experience do not always check this out prior to prescribing - some do some don't.

Gardening was out - the weather here is hot 27 degrees centigrade very hot for Uk.  I'll do my planting when its cooler.  Yes I was told to keep out of the sun because the immune system is depressed and anyone who has fair skin, blonde, auburn, freckled etc could be at risk of skin cancer developing. Luckily it was winter here during the six months I was on it and the UK is not known for sunshine. I'm glad you're keeping to the shade.  Does this cause a problem to you because the US has much better weather during the summer, far more sunshiny days?

Hope you enjoyed your day and I hope I've not worried you by some of my comments

Lorraine

Hi Lorriane

Yes, I take Cyclosporine in the morning, fexofinadine in the morning,

Citirizine afternoon, and the Levocetirizine I take around 8:00pm and it seems to relax me and helps me sleep.  I'll see how I do tonight if I sleep well and hives are not bad then that will tell me I forgot to take it and maybe was not the fish.  Yes, after last night wondering if I took meds I decided to organize myself this morning so I won't forget.  I think between all the meds and the hives I have been very forgetful☺️,

As far as the swelling under eye it started when I was on Prednisone toward the end.....I hope it goes away after I am off all these medications.....dare I say Remission!😊

Interesting about the vasculitis.  My GP doctor was surprised that my Allergist/Immonologist doctor did not think that was the issue....and thought I should have had a biopsy done....I had hives everywhere too and caused SOME of them to turn black and blue when they left. And my legs were a purple color when getting out of shower around the hives. weird!  My urticaria is mainly immune from anxiety and stress.  Sometimes I will get pressure hives just sometimes.  I have been wearing loose clothing.

I checked my shampoo that I have been using for a long time at it DID have the sulfate.  We went to the store today And did not find a shampoo without it of course there are so many products out there now especially at our Walmart!  I will go to our Whole Foods store where they have many organic type items and ask someone there.

its a beautiful day here today but will not go out in the sun for gardening.  Great timing for you while on cyclosporine 😃. By the way...what where you going to plant in August?  Mums maybe?  I do love Fall!

Well dear friend I better get some work done.....it's not sunny in the house😉. I would love to know some of the meals you make....it's so hard and have to be careful.  Thanks for the advice too with taking Fexofinadine after eating a NO NO!

have a nice evening!

Wendy

Hi Wendy

If you can't get any sulphate free shampoo where you live you can get it from Amazon on-line its L'Oreal Sulphate Free Shampoo, its what I use.

When my hives were bad I had to avoid using spices, pepper and chillies in any food I cooked.  I used sea salt to season and my partner added his pepper on his own plate.  So in the end I cooked braised meat either fresh red meat or chicken and fresh fish which I just added a knob of butter to the pan, covered and cooked on a low heat until it was done.  The beef, pork or chicken I browned in olive oil, seasoned with salt, covered andcooked for about two hours slowly so it was well cooked.

I steam all my vegetables and you now have a list of what is low in histamine.  Potatoes you can do as you please as long as you don't spice them up.  I thickened the gravy with cornflower and gravy mix.

I would try not to have too much wheat products but that doesn't mean you have to cut them out because I didn't and I was Ok.  Soya products are high in histamine so don't have them.  I could have pizza as well just not with spicy sausage or jalapinos.  Pasta was more difficult because of some of the ingredients like peppers, cheese etc. Sometimes I gave up bought a ready meal pasta for my partner and I had something else, it was too much bother.

My partner had sewn some border plant perenial plants in the Spring and they are overgrowing the tubs he put them in but they are flowering so I think I'll have to wait now until they have finished and plant them in the Autumn ready for bedding plants next year. He lost the packet he got them in so I don't know what they are called.

Speak to you soon Wendy

Lorraine

 

Good Morning!

thank you for all your helpful information! What else do you put in the pan after you brown either beef pork or chicken in olive oil and sea salt?  I would normally add a dry onion soup mix and water and slow cook the roast until very tender...but not sure of ingredients in the Lipton Onion soup mix if okay.

Not sure what is going on but I am breaking out more each day....my fear is that the meds are not enough and I'm breaking through....I cannot imagine that since I'm on both Xolair and cyclosporine and antihistamines! She mentioned about bumping me up to 150mg......just don't want to do that as I have had so many drug chemicals going into my body!

I can't remember if you have had these hives before your breakout in your lifetime.  What is your history with the Urticaria.?

I will look for the Loreal shampoo....it looks familiar.  Thank you so much.

I hope you are still doing well today.

talk soon!

wendy

Hi Wendy

My first breakout of hives was in February 2014 after two illnesses close together.  Antihistamines worked because I now know it was a mild breakout.  I stopped taking the antihistamines.  I was ok from April to August.  I had a bad cold in August then had carpel tunnel surgery in August and bang it was back with a vengence in September.  Really bad but I didn't get facial swellings. I did get the bruising that you mentioned in places where my veins or arteries are and I did get the lumps on my scalp, behind my ears and on my temples.  I did alot of research and some of it mentioned 'Leaky Gut Syndrome'. This is were extremely small particles of food find their way out of the body's digestive system into the blood.  This causes an immune reaction in the body.  At the time I had an excessive feeling of bloating in my stomach and my digestive system didn't feel to be working properly.  I got hold of a nutrionalist and was given a diet sheet and plan for mending my gut and to avoid certain foods.  Its quite radical but I think it helped alongside the drugs I was taking.  If you want I can give you the details in my next message. I lost 8lbs on this regime and you have said you've already lost weight.  I was overweight when I started on this diet, if you are now underweight it may not be ok for you to try it because its quite limiting.  My stomach feels good now.  She suggested that I take L-Glutamine which you can get in powder and tablets on line on Amazon, this helps mend the gut, plus a good Pro Biotic Balance (not yoghurt because there isn't enough live bacteria in it). I use Bioglan Biotic Balance which you can get on line with Amazon. I also was advised to get a good multivitimin.  She told me to avoid having the same foods each day because that is what the immune system can react to, eat food in rotation leaving approx 2 days between eating the same food again.  She gave me some menu ideas which I'll give you:

Breakfast ideas, eggs (well cooked), rye bread, rice crispies, cornflakes, porridge (not soya milk) dairy, rice, coconut or oat milk,fruit (low histamine ones), quite a variety really. What do you normally have?

Lunch - home made soup, not packet or canned, salad with chicken or pasta, potato jackets with soft cheese, sandwiches with fresh meat, not smoked or processed, soft cheese.

I've already suggested some main meals and she said coffee is ok. You haven't much time now before you see your specialist so I would think that would be the time to consider what drugs you are taking, whether they work well together and of course whether its prudent to up the cyclosporine which I know you are worried about.

I do hope some of this information is helpful.  I'm not sure what is available in the US where you live which is why I've mentioned Amazon so much because I know they operate in the US.  Let me know what type of meals you usually make and I might be able to tell you if they are okay or not.  The British arenot well known for tasty cooking, we have a reputation for blandish foods so I haven't had to change how I cook very

much!! I don't get complaints though

I look forward to hearing from you.

Lorraine

 

 

Hello Lorriane

Again....thank you so much..your information is a big help and is so appreciated!  This will be short as I need to get some things done...but will answer more later.

breakfast: I eat eggs cooked all the way usually with bacon but I have stopped that instead Uncured turkey bacon that is antibiotic free and no nitrates, raisin bran cereal (not good ?), sometimes pancakes, I'll get some rice crispies. 😄Coffee with hazelnut creamer (I guess not good)

lunch: I used to have a lot of spinach salads with grilled chicken, celery, red onions, carrots, artichoke hearts, shredded parmasan cheese, dried cherries with balsamic vinaigrette dressing.......I know most I can no longer have. And have not had this type of salad in several weeks. I don't have dressing without vinegar! Also sandwiches chicken or turkey (in packages) with lettuce and a little Mao.  Use to eat pickles and olives...not eating those.  Chicken salad with celery and Mao........

Snacking I used to eat prunes and raisins. A gluten free granola whole grain cranberry Almond clusters whole oats. Apples

Dinner all kinds:

pot roast, potatoes, green peas or green beans

spagetti with meat balls or meat sauce tomato sauce (haven't that in a long time)

Roasted chicken. Potatoes or stuffing, vegetables gravy

Meatloaf, potatoes or rice, green vegetable

these are examples

Do you have a good receipe for home made soup for us hivey folks?😄

Maybe we can do the personal Messaging on here and exchange email addresses.

talk soon

Wendy

Hello Wendy

From the information I have, foods such as dried fruits, any nuts (except coconut), spinach, peas, raw onions, parmesion cheese and vinegar, balsamic vinegar and pickled foods are high in histamine.  How about using a light olive oil as dressing or mayonaise.  I spilt some vinegar on my leg when my hives were bad and if I'd had a paint brush I could have played noughts and crosses on my skin with it. I had red itchy lines where it had run down my legs.

Yes I do have some ideas for soup for us hivey folks but I'll let you have them when you e-mail me - I've left you a private message and look forward to hearing from you.  Where you are in the US is about 5hours behind where I am.  Its 10.30pm here now so I think it will be about 5.30pm for you so I'll probably get you next message in the morning.

Goodbye for now friend.

Lorraine