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.
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 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.
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.
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.
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!
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.
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?
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.
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!
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.
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?
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!
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.
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.
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
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!
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.
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.