Definitely having a low today but figure you all get it

Day 270 of hive seige.

All the prescription antihistamines don’t work. Fought hard for Xolair assistance and have had 4 rounds- no progress Spent last two days with lips so swelled that I looked like a cartoon duck add the swollen eye for Popeye.
Begged immunologist for prednisone- set through a 20 minute lecture about how it could lead to hip replacement in 15 years. Had two painful biopsies of hives on Friday . Followed a low histamine diet for 6 months no change .
Finally got prednisone day 2 of 40 mgs and here I am covered in hives.
Definitely having a low today- but figure you all get it.

Discussion

Soren J Ateri
Try ldn next

Sharon Kiser Gillespie
Soren J Ateri my team of doctors will not prescribe that.

Soren J Ateri
Sharon Kiser Gillespie I would find a new doctor that will. It’s odd they will not try it.

Anne Camille Jongleux
I’m so sorry.

Brittanie Msbbtoyou Coleman
Sharon we sympathize with you. Im pray you find some relief.

Sharon Kiser Gillespie
Brittanie Msbbtoyou Coleman thank you !

Debbie Danford
So hoping you get some relief very soon 🙏. I’m on all the antihistamines, xolair and prednisone. Adding sulfasalazine to the mix has helped. Still get hives almost daily but they are tolerable

Sharon Kiser Gillespie
Debbie Danford thank you!

Alicia Casey
So sorry ♡♡♡ it’s so stressful and just takes everything out of you!! 🙏🥰💔🥰🙏

Sharon Kiser Gillespie
Alicia Casey thank you . It truly does!

Sharon Kiser Gillespie
Thank you all just having a moment. I strive to be upbeat and positive and push through. The last week has been brutal. I actually broke down in tears with immunologist. I know you all understand and am thankful for this safe place.

Sharon Kiser Gillespie
Probably the hardest part for me anyway is have dealt with this for over 8 years- took 5 years and countless drs to get to point of Xolair as an option.
Did 18 months of Xolair with improvements by round two- had 18 months no Xolair, no antihistamines and no hives- then you guessed it- they are back.
It has been 9 months now of terrible full on sleep with an epi pen hives.
My biggest fear Xolair not going to work this time.

Tamora Williams
Prayers for you!!!

Sharon Kiser Gillespie
Tamora Williams thank you!

Den Scorsh
Praying for you…we are all here for you. Sending you a hug and wishes that you will feel better soon.

Sharon Kiser Gillespie
Denise Conti Scorcia thank you!

Brittany Kelly
So sorry honey

Lisa Vetter
So sorry. It sucks.

Lisa Soravia
I am so sorry.

Chris Huff
Oh, Sharon, that sounds miserable! You deserve to “have a moment!” It sounds like you’ve been very strong. We’re behind you!💕💕

Sharon Kiser Gillespie
Chris Huff thank you!

Christie Farrow Johnston
Has dr ever given you prednisone in the past? Have you tried up dosing the antihistamines? Sorry if you have but no on told me including drs

Sharon Kiser Gillespie
Christie Farrow Johnston yes have been prescribed prednisone a lot.
I just did mega dose last month – thus the lecture from immunologist.
Yes also to upping antihistamines- I take Singulair, Zyrtec and Zantac and as many as 4 xyzal a day- all prescribed. I also probably drink two bottles of children’s Benadryl in a week. It is my go to when on my mouth- suggestion from ER dr Have had other meds in the past including doxeypin with no results. I really appreciate all the support and am always open to suggestions!

Christie Farrow Johnston
Sharon Kiser Gillespie I didn’t find prednisone to work at all the first time I had hives. This time round 10years after remission i did find it help somwwhat

Sharon Kiser Gillespie
Christie Farrow Johnston it is only thing that helps me.
The sad thing is I get maybe 4 good days.
I feel like in those 4 days I need to accomplish as much as I can at work and home until the wheels fall off again .

Stella Bethlehem Narin
Sorry for what you are going through but just a suggestion stop taking anything the reason when I had my last out break of hives all over I noticed every time I took my antihistamines I got worse so I stopped and strangely enough slowly the hives settled down so you never know but I noticed even with my regular antihistamines when I stop taking them my hives are less so….

Sharon Kiser Gillespie
Stella Bethlehem Narin I have considered this too.

Sharon Kiser Gillespie
Christie Farrow Johnston thank you

Sharon Kiser Gillespie
Christie Farrow Johnston thank you !

Renee Dixon White
I didn’t get any relief from Xolair for 6 months. And during that period I also did a long slow prednisone taper. Hang in there, hopefully relief is coming soon. It’s torture, I know.

Sharon Kiser Gillespie
Renee Dixon White thank you !

Kammy Eisenberg
I’ve done it all too. I’ve tried and failed Xolair ( although back on again out of desperation ) ,methotrexate and cyclosporine. I am now on cellcept into my third month and actually (cautiously optimistic ) seeing results. My rheumatologist has been my best advocate for stepping outside the box and trying something different.

Sharon Kiser Gillespie
Kammy Eisenberg thank you. I hope it works for you too!

Janet Cesario Perry
Have you changed your diet, eliminated alcohol, sugar, gluten, dairy. The AIP diet really helps. Heal your gut. It is the center of your body chemistry.

Sharon Kiser Gillespie
Janet Cesario Perry yes did the whole thing for over 9 months
I bought the expensive juicer and did organic juicing- my hives were worse!

Trudi Falk
Janet Cesario Perry unfortunately for some of us with immune related hives. Diet, Cleanses ect, do absolutely nothing. My daughter is in year 17. Had a 3 year remission for no reason we can find, but back the last 2 years. She just turned 30. Has been on prednisone for most of the 17 years. Finally approved for xolair. Fingers crossed 🤞. I feel your pain Sharon, your dosage may need an increase. Hopefully you can get some relief soon

Sharon Kiser Gillespie
yes the immunologist is very confident mine are autoimmune so no rhyme or reason.

Patty Stuart Stach
Antihistamines never worked on me, predisone made them way worse. Dapsone worked fantastic for over a year then give free for 2 years. They came back Dapsone didn’t work. Tried acyvlivar worked for about 6 months. Then prograft worked for 2 years went off hive free 2 years. They came back non of the prior worked. Tried Xolair didn’t work went on cellcept no hives for 2 years. Came back nothing worked again. Now on ivg gammaguard have been on 3 years with 2 Allegra.

Petrie Gillian
Have you tried an elimination diet for other food chemicals? I’m sensitive to histamine but more so saliscylates. Accupuncture helped a bit too. I’ve been on prednisilone for 7 months mainly for asthma which is triggered , like the urticaria, by saliscylates. I know about the side effects but if you need you need. He could even give you a short term course for a week or 2. Shocking.

Sharon Kiser Gillespie
Petrie Gillian I have . I am still careful with what I eat even when the diets or protocols made no difference.

Petrie Gillian
Can you try other types of antihistamines too as those ones are not working? I tried 3 before loratidine which helps. Of course you probably tried them all 😥

Sharon Kiser Gillespie
Petrie Gillian I have and continue to do so!

Petrie Gillian
Sharon Kiser Gillespie I’m so sorry. It’s awful. I really hope the xolair starts working or another biologic. Someone here previously suggested low dose naloxone to me, apart from that I can’t think of anything. Hope someone more knowledgeable can help you.

Tamra Strowd Devine
I’ve had CIU for over 12 years. I get so miserable sometimes I feel like giving up. I recently started talking cyclosporine. I can tell that it is helping me. My Dr. is still adjusting my dosage and I am hoping for a miracle. I have read that it puts a lot of people in complete remission. Maybe it could help you too.

Sharon Kiser Gillespie
I will ask my immunologist! Thank you

Rabiya McKeverne
I’m so so sorry you are going though this.

Lynn Sands
Hi, this sounds awful. I am sending healing hugs. Have you asked your doc about immunotherapy eg, methotrexate?The side effects may put you off, however they monitor you closely and it might just give you a break from this hell you’re suffering xx

Megan Littlejohn
Stick with the xolair. It took 9 months to help me.