I have some simple remedies for the itching and chaffing that happens with CIU. Dab very salty water on rash, don't wipe off, keep doing it and the itching will ease if not go. Chaffing wheals caused by rough seams in clothes, arms, inside legs, waistline etc. Sew soft tape or ribbon along seams, alot of work but its worth it. Use silicon based creams or silicon lubricant on these areas to prevent chaffing, it works. I had a course of Ciclosporin (an immune suppressant) over 6mths which put my CIU in remission. I also was prescribed Doxepin (75mgs) which is an anti-depressant but has antihistamine also. CIU leaves you very down and in a bad place. A combination of the above and being careful not to eat too much food that is high in histamine has helped me tremendously - I hope it helps you too. I don't think I'll ever be free of CIU but as it is now I can live with it.
Thanks Lorraine, I hadn't thought of the clothes aspect. But I have noticed that the weals are quite bad when I go running along the rough elasticated waistband of my running shorts.
I also never gave ciclosporin much consideration. Though recently I've been considering trying to see an immunologist again to see about Xolair (another immuno-suppresant that seems promising).
I have a follow-up appointment with my GP today to discuss switching from the SSRI Paroxetin to something with less severe side-effects for me (early-waking insomnia, nausea, stomach cramps, restlessness). Paroxetin has been very effective at more or less dulling the sensation of itch. The rash is more present than on Doxepin but I don't feel like a Doxepin zombie who only wants to sleep and eat junk food.
thanks for the salt water for itching, ill get my son to try that
Thanks for sharing these tips!
Hi glad to share what I have discovered. I also have a problem wearing bras, I get itchy and sometimes a weal underneath bust. I have found if I use good anti-perspirant under bust before putting bra on helps. I think its pressure and sweat (I get hot flushes unfortunately). I can't wear underwired bras unfortunately, hope you're managing ok.
Hi Lorraine
i have been suffering from CIU for over a year now. Have been on Prednisone, Dapsone, antihistamine, etc. worked for a short time then the hives came back. After a long time on Prednisone and slowly went off I went into remission for over a month...so wonderful.....until I had to go into hospital for a migraine...unfortunately they gave me a Non-steroid medication that my Immunologist sai.d probably brought hives back :-( and came back in a very bad way. My doctor put me on the Xolair injections that worked beautifully and was hive free...such relief......unfortunately after a couple of weeks the hives started to return so I was taking some antihistamines to try to keep them away. After the second shot the hives were still with me so doctor is concerned the Xolair is no longer working for me. She has put me on Cyclosporine 100mg a couple weeks ago and seems to be working.....if I start to breakout again I will up it to 150mg. I also had my third Xolair shot so not sure what is helping...although the Cyclosporine already started to work before shot. How many mg are you taking...would love to know. I'm trying to get in to see a specialist. I will also try the low- histamine diet. I think my issues are immune with stress.
looking forward to hearing from you! Do you have to have frequent blood checks while on Cyclosporine?
Thank you
Wendy
Hi Wendy, I was on 100mg cyclosporine for 6months, I also took fexofenadine in the mornings and loretidine at night, plus doxepin as the urticaria had given be depression which also has antihistamine. I noticed a difference after about a week. Yes, I had regular blood taken during this medication as it can affect the liver, but I was ok. After the six months my specialist reduced the medication by 75mg x 2wks, 50mg x 2 wks and 25mg x 2 weeks. I had a small outbreak when I changed down but it wasn't much. I am ok now, I still take fexofenedine, loretitdine and doxepin and I dont't expect to stop. Stress is a big factor with me as you can see I had outbreaks after I reduced the cyclosporine more from worry I guess. If you've read my first input on this forum you will see I've put alot of effort into reduced what I believe are my triggers, mostly after illness and chaffing. I forgot to mention that for urticaria suffers anti-inflammatories (NSAIDS) are a trigger for urticaria sufferers and as I have a bit of arthritis I was on them at the times I began suffering. I am not on them now. Also Amitryptilene is a trigger for urticaria. I have a great specialist in Sheffield Hallamshire hospital called Dr Sabro. At the start of my urticaria my gut was in a bad way and I was advised to take L-Glutamine to help mend my gut plus a broad spectrum biotic balance capsules to help in the repair. I also like you try to keep to a low histamine diet. I have now began introducing more foods as my urticaria is in remission (not gone - I don't think it ever will be completely) on the advice of my specialist and I am ok.
Hope you can get referred to a good specialist or to Dr Sabroe.
Lorraine
Hi Lorraine
thank you so much for your reply. I sent out another reply to you this morning asking about the mg.....sorry..... our emails must have crossed. So much of what you shared sound like my issues. Definitely stress is my trigger. I am 63 and have had three breakouts of urticaria in my life with a decade in between with no hives...remission. The first two lasted 2 years each but were easily controlled with fexofenadine and Singular. This time extremely hard to control...much suffering. I pray the Cyclosporine and or Xolair injections will work and put me back in remission. She said if I start breaking out in hives to bump up to 150mg. I'm not taking Fexofenadine as they didn't seem to work when hives got really bad. The doctor also said I can only be on Cyclosporine for 8 weeks?? You were on it for 6 months....hum.....I'll have to ask her about why so short of a time.
thank you so much again for sharing your information! I am in the United States.
Have a great day....a great hive free day!! I love those!
best regards
Wendy
Thanks for all your edvice Lorraine. How do you know which foods are high in histamine?
You will find some lists online, but they tend not to be consistent. Here's some foods they do agree are high in histamine:
Seafood and fish if not just caught
Processed Pork (sausages etc..)
Wine (especially Champagne)
Hard mature cheese (parmesan, pecorino)
Strawberries
Spinach
Aubergine
Red Kidney Beans
Yeast
Hi, Desmond's right and I have a few more:
tomatoes, pulses (peas, lentils etc), chocolate (sorry!), black, green and fruit teas (herbal teas are ok), processed or smoked foods.
Its hard at the beginning, I lost weight which was a good thing. You can each fresh vegs with the exceptions mentioned. Any meats cooked fresh, eggs well cooked, no lightly boiled as runny whites not good. When you have your urticaria controlled or going like mine introduce some of the restricted foods slowly to see if you get a reaction.
Good luck
Lorraine
But...I eat ALL of those things you and Desmond listed but all in moderation...!
You can, like I did cut them out altogether until your hives have gone or you can ask for a comprehensive patch test to see what foods affect you. The NHS are reluctant to do this because it is an expensive test - I got it costed in case I wanted to do it and if you test for everything it costs over £200. My suggestion is cut them out along with the medication you are given see if your gut feels better and your hives reduce. Then slowly re-introduce one at a time to see which ones get a reaction - unfortunately for me I still get a reaction to chocolate!!
Good Morning!
Chocolate......my favorite food is NOT easy to let go but I know important to do so! Yes I noticed the foods vary in lists online for High Histamine foods. Spinach was a surprise so was green tea. I enjoy raisins and prunes but it appears they are on the list too. Lorraine did you notice a change when you changed your diet? Did the hives lessen? I would like to cleanse my gut naturally....any recommendations.?
have a good day!
Wendy
Is the L-Glutamine like a gut cleanse?
Wendy
Yes taken alongside live bacteria to replenish your gut and a good diet of fresh food, not processed food. I had my gall bladder removed for gall stones about six years ago which might be a reason my gut wasn't working so well.
Hi Wendy
Yes I did notice a lessening of my hives but remember I was taking medication as well. At the time I changed my diet I felt bloated and uncomfortable quite alot so the nutritionalist I saw advised this way forward and I have to say it did seem to help and the bloated feeling disappeared. I think a combination of things helped and it may be different for each person. Unlike some diseases urticaria is very personal to the individual, this was confirmed by my specialist as well. He said its easier to treat ezcema and psoriasis than it is to treat urticaria as it can present differently in each person. There appears to be no common trigger but I believe some things may be common, for instance: illness, stress, anti inflammatories (NSaids), anti biotics etc. What do you think?
Lorraine