My body is considerably a lot more itchy than usual

So just out of interest I haven’t taken my fexofenadine for 2 days. I wanted to see if I would come up with anything as I take them daily and haven’t had an out break of hives for 2/3 months or so.
On day 2, my body is considerably a lot more itchy than usual. I feel very irritable, and this evening.. The hives are back. The one on my wrist has been itching for hours and now one is coming up half way up my arm. I’m not going to take any meds. I’m going to ride through the next 24hrs as a test and see what happens. I was hoping I was going into remission after 3.5 years of CU but looks like no, I was just ‘under control’


Faye Ridlehoover-Pepper Check with your doctor, but maybe since you were doing so well, and then went cold turkey, you should have taken the withdrawal of meds slower. That’s what my doctor told me. Take it slowly. You might want to take the fexo again until you stay clear again, and then take 1 1/2 a day for a week or two. If still stays clear, cut back to 1/day. Do the same for week or two and then do 1/2 a day. If you stay clear, then take 1/2 every other day. Just go slow. I went really slow with my withdrawal of meds and haven’t had any problems. But, remember, we’re all different.

Sharon Patey Colbourne That’s what I was advised to do as well. Took me three months to cut back to just one hydroxyzine. I’m afraid to give that one up!

Samantha Jane Time out hey! Everyone needs it in life. Sometimes without realising. I’ve been working all weekend so no rest here, but tomorrow is my day off and I’ve promised myself to stay at home and just Potter about the house doing bits and pieces and more importantly relax the brain!

Paul Shumway Brain breaks, yes!!! Those are a must! I’ll usually throw on a record and just relax and listen to the music. That is, until that side is over and I have to go flip it over. Lol

Samantha Jane Lol brain break! Perfectly explained!!
Recordsâ The were the best but haven’t played vinyl in about 30 years 🙈 really showing my age now. I love music. It’s so theaputic. When I’m home I always have music on in the background. Cannot beat the hot tub too luckily I’m good with the hot tub, doesn’t upset my skin, so able to relax there too

Paul Shumway My uncle recently sent me all of his old LPs, and it’s amazing to hear the music on the medium it was intended for. And…I used listened to these records when I was a little kid. Kinda nice to be able to do the same for my own kids now! My daughter (8) love to dance around the kitchen listening to music.

Paul Shumway And “showing your age”? You look to be in your early 20s.

Samantha Jane Older music is so much better. I don’t have any set favourite, I tend to like lots of different stuff. I have a 7 year old.. She’s pretty much the same as your daughter.. Always dancing around!!
As for ‘showing my age I’m 37. I wouldn’t mind to be back in my early 20’s.. but then I wouldn’t be this educated on life so age has some benefits right? Lol. I have an 18 year old daughter!!

Paul Shumway With age comes wisdom, right? And back pain, and cracking joints, and headaches. Hahaha!

Samantha Jane Ahhhhhh yeah It sounds so appealing. not!! Cracking joints Definitely not looking forward to that one 🤔 headaches, everyday!
All I want is to be content, I’d be happy with that.

Samantha Jane I just realised there are lots of people from the states on here at this sort of time, but then I remembered you are 5 or so hours behind us here in the uk! It’s like 1am here!
39? You were far too young for cancer. Your such a positive person, it’s great

Paul Shumway Well thanks! I felt like a baby at the oncologist appointments. I was the only one in the waiting room under the age of 600. Lol! People kept looking at me like I was waiting for someone.
When the doctor said there might be a chance of nicking my vocal nerves, and that I might get a raspy voice .I asked him how much money it would take to sounds like Clint Eastwood. He was quite schocked

Samantha Jane 😂😂😂 under the age of 600! I get so anxious about all this medical stuff. Worries me so much sometimes.

Paul Shumway Remember what I said about sweating the small stuff? No need to worry so much about such things. If you worry too much, you’ll miss out on life

Samantha Jane I know 😐 thanks for your support Paul. I already don’t feel so isolated since joining this grou

Samantha Jane I’ve not taken them for 5 days before and only on day 5 I got a tiny hive. These are tiny compared to the patches I used to get. I’ve also got them on the back of my head and they are so itchy! I’m just intrigued to see if they come out on my trunk or legs. I was kneeling on the floor at work earlier and can feel 1 of my knees is swollen so by tomorrow will have a nice lump.
It’s strange because as soon as I take a fexofenadine the hives will start to go down within the hour.

Paul Bradburn i went through a change of presentation , it was after a corticosteroid injection , i had 3 months without anything . In the early years i would get a mix of welts and lumps , some like mosquito bites , some large raised patches , after the shot and the short remission they strarted to be like your wrist one , they bruise and are painful sometimes rather than always itchy and if left unchecked they turn into blisters but only on my wrists ???? go figure .

Samantha Jane Me too. When I very first got hives, they resembled bites. Then they looked more like a pin prick rash. Then I would get huge patches, dark pink/red ring around the outside and skin coloured or white in the centre, and they would be raised. Then I’d get clusters of smaller red rings. Now I’ve got bite looking hives again.
As the evening is going on I can see small patches coming up on my legs. I’m feeling to give in and take a fexofenadine as I know this will be very uncomfortable and by tomorrow unsightly. I would just really be interested to see what happens if I don’t take meds. Will I get them as bad as I used to

Paul Bradburn Do you get a feeling like your body is full of adrenaline , can’t sit still jumpiness ?? This always precedes my worst flares . Mine resembled bites that bad the first immunologist i saw diagnosed flea bites in a house with no pets ?? Then 8 biopsies later CIU diagnosis , i’ve had them all except the red ringed ones , i don’t react to heat in any way and they seem to be linked to food but then i can get caught up in work not eat all day and at 3PM i’ll start to flare and without meds i’ll be unable to sleep that night .

Samantha Jane Before I start to come out on hives, the only way I can discribe it is it feels like I have millions of ants crawling under my skin. It’s really not nice.

Ellen Frantzen I slowly cut mine down bit by bit. I used to get occasionsal break through hives sometimes but weaning of them bit by bit seemed to work. I’m now in just 1 tablet every 5 days.

Samantha Jane I gave in!! I took at fexofenadine before going to sleep. It wasn’t so much the hives, it was the itching and the feeling of ants crawling under my skin around my whole body. I laid in bed and the tingling and twitchy itchy feelings I was getting around my skin was unbearable. So I’m guessing if I hadn’t of taken the meds I would of broken out all over. My life is fexofenadine. I’m actually relying on them to have a half normal life

Samantha Jane And today I’ve had a session on the tanning bed… so we will see!

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