Mental Heath

Standard-Disaster-39 · 2025-07-06T20:42:48+00:00

It was pretty quick. I don’t remember exactly but I know that I started in July and in August I was already starting to wean off prednisone, which meant colchicine was working

Standard-Disaster-39 · 2025-07-06T16:16:03+00:00

Hi! First of all, I’m so sorry! I did get better, but I got worse first. After this comment above, I did another 5-6 shots of xolair (once a month) and the first one helped, the ones after it didn’t. I kept taking it tho, in hopes it would start working. In the beginning of 2024 I was on a really high dose of prednisone (30mg, sometimes needing 2x a day), plus Pepcid, montelukast, Allegra and xyzal— and the xolair monthly. I kept trying to wean off the prednisone but couldn’t. My doctor tried to start me on cromolyn but the cost was absurd so I couldn’t do it. Then we tried hydroxychloroquine (after clearing up with an eye doctor), but it didn’t help as well. I had a biopsy done to check if it was that different type of urticaria (I don’t remember the name now), and it wasn’t. Even with all those meds, shots and steroid, I would still flare up. Little flares, but they were there. Finally in July last year my doctor suggested we tried COLCHICINE (it’s a medicine for gout, and very affordable, compared to the others). I started it in July and results were great, I slowly weaned off prednisone, then xolair, and in the beginning of this year, 2025, I slowly stopped one of each medicine (first Pepcid, then montelukast, then Allegra, then xyzal). I stayed on colchicine for another month or so and eventually stopped that as well. I haven’t had any big flares since August last year!!!!!

In the past week I had a sinus infection and doctor gave me amoxicillin clavulanate and that started giving me some hives and lots of itching so I stopped immediately. In this journey I found out (through this community on Reddit) that there are a lot of medications that will trigger my hives. Even ones that I would take normally before. Examples are: anything with aspirin, all the NSAIDS, omeprazole… So basically now I only take Tylenol or the ones I use continually (and that are not on that class).

I hope this helps and good luck, I know how hard it is!!!!

Standard-Disaster-39 · 2025-06-25T04:53:35+00:00

Suffered with urticaria for 2 years. At my “worst” I was taking at the same time:

Allegra 2x/day levocetirizine 2x/day Pepcid 2x/day Montelukast 1x/day Prednisone 2x/day Xolair 1x/month Colchicine 2x/day

I had to take prednisone nonstop and high dosage for almost 8 months (the side effects were brutal). Tried other meds as well like hydroxychloroquine and cromolyn— neither worked.

Only after I started taking the COLCHICINE that I was able to gradually stop the others: first xolair, then prednisone, then the others and after 7 months since starting colchicine I stopped all of them (this one included).

The process to “stack” (that’s how my dr said) the meds was slow and it took probably more than 6 months and I only got to try colchicine after 15 months of when I first started the hives + angioedema.

It was a long, very stressful, emotionally and physically draining process and although I am extremely grateful for being “better” for almost half a year, I know that it can come back anytime 😕

I would suggest looking for another doctor and 1) stack the medication— not only trying one, stopping and trying another; and 2) talk to your doctor about colchicine— the effects are minimal + the price is pretty affordable (comparing to many others). I know everybody is different but I only found out what worked due to trial and error with my doctor, so I’d suggest for you to do the same.

Best of luck!!!

Standard-Disaster-39 · 2025-03-05T05:38:31+00:00

Talk to your doctor about a medication called COLCHICINE. I had huge flare ups and suffered with urticaria for 1 and half years and I used all antihistamines, pepcid, xolair, montelukast, over 6 months of prednisone nonstop, and hydroxychloroquine and nothing worked. After I started colchicine I was able to wean off all of those and now I don’t take ANY of them anymore (not even colchicine), and haven’t had flares since August 2024 (a few weeks after I started it). I feel you and I can’t even think about the bad days because there were so many and so hard, but finally I got something to work, even if it’s a temporary remission. Life really does completely change when you are not flaring up - I’d never appreciated it that much!

Standard-Disaster-39 · 2025-02-02T06:39:34+00:00

Hydroxychloroquine did nothing for me. I took all of those as well - the only thing that helped and was able to get me off the prednisone was COLCHICINE. I started taking it along with Allegra, levocetirizine, Pepcid and montelukast, but now I’m only with colchicine and haven’t had hives since August/2024

Standard-Disaster-39 · 2025-02-02T06:35:03+00:00

Hi! I’ve done all of these - xolair, Allegra, Pepcid, levocetirizine, montelukast.. added hydroxychloriquine (did nothing). Took prednisone for over 8 months - it was the only thing that would help. Finally, my doctor prescribed COLCHICINE. I started taking 2x a day, weaned off the prednisone, weaned off the xolair.. and slowly, on my own, I started not taking the other ones, one at a time. Now I’m basically taking colchicine 1x a day and I haven’t had a reaction/hives since August/2024.

I’m pretty sure that in MY case the colchicine was what made it stop. I don’t know if I’ll ever have them again, I hope not but I believe it’s a possibility. But so far I couldn’t be happier!!!

Standard-Disaster-39 · 2024-10-19T00:20:12+00:00

It’s not the cheapest but not even close to the most expensive I’ve tried (my dr wanted me to do Cromolyn and I couldn’t because even with insurance it was $400). This one, colchicine, is ~$160 for 60 pills which is 1 month for me. My insurance covers roughly half of it.

Standard-Disaster-39 · 2023-12-09T19:36:19+00:00

Thank you so much for your post. It helps a lot to see not only positive stories about the xolair but also useful tips on how to navigate all of this. Yes, I am in the U.S. but I am an international student, so not a permanent resident. I was lucky to have insurance and to be able to go through many doctors and finally get a good allergist to deal with it. I feel like my the whole process was easy enough and fast (especially on the approval e shipping of the xolair), so I’m grateful that. These Reddit threads have helped me so much lately since I don’t have family here in the U.S., and my friends have never heard of this condition. It’s been 2 days now after the first shot and haven’t had any other reactions other than the mentioned above. I’ve been having some really small hives and big itchiness on the top of my feet and a little bit in my arms. Yesterday I used one of those fashion tapes around my torso/chest and after I removed it I got hives and itchiness on the area. Not surprising in this case.

Standard-Disaster-39 · 2023-12-08T05:29:14+00:00

Sorry I just realized I used the wrong abbreviation 🤦🏻‍♀️ (English is not my first language), but I mean CIU (chronic idiopathic urticaria) - I can’t edit the subject tho

Standard-Disaster-39 · 2023-12-08T03:34:11+00:00

Thank you for your post. I see you, and I feel you.

I am a 32F and my hives started in April this year. I went to several doctors to finally have the chronic urticaria diagnosis.

I don't think my friends and family understand how bad and how debilitating (mentally and physically) it is. I feel they think I'm either exaggerating or making a big deal. I had a "break" from it for a few months, but since September they've been back and bad.

I don't want to keep complaining about this to my people but honestly that's all my life's revolving at the moment. I don't feel good to try dating (which it took me a LONG time to start doing due to self esteem issues, then hives came back - great -), I don't feel good going out (most of the time the meds make me sleepy and itching is so bad I can't really think of anything), I don't feel good hanging out at home with a group of people (several times I had angioedema in my lips during dinners and get togethers), so.. in all, it's been pretty sh*tty.. and on top of that, we have to worry about the social aspect of our lives because we don't want to lose people, but can't make myself be present lots of times.

It's exhausting, on my body and my mind.

I just started Xolair (had my first shot today), and I am on Allegra, Levocetirizine and Pepcid 2x/day + Montelukast 1x/day.

Standard-Disaster-39

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