Anyone on LDN find that it’s not working for them – makes their hives worse

Any words of wisdom or similar HIves experiences

Anyone on LDN find that it’s not working for them – makes their hives worse? Since I’ve been on it my hives have been rubbish and when I up my dose the next day is hive city. I fasted for the last 3 days Because it has been so bad and I needed a break. Yesterday (day 2 of my fast) I was totally clear. I upped my LDN every Sunday and did so last night. This morning my leg is covered in hives and I’m on a totally fasted belly. This is not normal for me. I’m actually thinking of giving up. Any words of wisdom or similar experiences?

Discussion

Milan Solarz
LDN made me worse before I was better. Every time I would increase a dose, I’d flair for at least a few days to 2 weeks. Aside this period, it has definitely helped me

Elise Rappoport
Milan Solarz thank you so much for commenting. I’m at 2.5 as of last night and wondering if i should drop back to .5 and increase every few wks very, very slowly.

Milan Solarz
Elise Rappoport i dropped down when I felt I had went up too much. Unfortunately it’s a game of patience

Elise Rappoport
Milan Solarz ok. Thank you so much. I’m going to take it right back to .5 I think and see how that goes. I posted on the LDN group but our specific condition is it in the majority. I just needed to hear from my hivey brothers and sisters.

Milan Solarz
Elise Rappoport haha I understand ofcourse. This garbage causes so many hiccups and problems that it’s necessary to ask others what to do. Good luck

Kammy Eisenberg
So sorry Elise Rappoport! I’m in my third month of cellcept and (knock on wood) currently hive free. Have you tried Cellcept?

Meredith League Pretzie
Kammy Eisenberg what side effects have you had from cellcept? Are you on a low dose?

Elise Rappoport
Kammy Eisenberg no I’m not allowed to because I have non cancerous liver tumours and I can’t do xolair because I have genetic thrombophilia and the clotting risk is too high. So glad something is working for you.

Jan Maher
My hives are better but I have found that I can’t increase my dose without risking very bad leg pain. I’m sticking with 0.5 for now. So my suggestion would be to take a day off LDN and when you start up again, do it at the lowest dose you’ve tried that didn’t seem to make things worse.

Lizanne McAdams-Graham
My Dr. wanted me to start at 1.5 but after reading peeps here starting at the lowest .5 dose, I asked to do the same. I have not increased the dose since two weeks ago because I’m having good results. I also take one day a week off.
It’s not been perfect results, I had hives last night and this morning but I accidentally ate something with dairy and dairy really triggers me.
I agree, take a day off and start again slow.

Elise Rappoport
Lizanne McAdams-Graham and Jan Maher thank you ladies 🙏

Lizanne McAdams-Graham
Elise Rappoport I also remember the LDN group I’m with,
advised me to give it two months trial before making a decision. Also, they said and so did my Dr. that it could get worse before it gets better. Another reason I decided to start out low and slow.

Nicole Stromath
Could it be the filler? Fillers make me worse if it’s the wrong one.

Betsy Starrett DeVore
What is LDN?

Jan Maher
Low dose naltrexone.

Elise Rappoport
Morning everyone – thank you all so much for your comments. You’ve all helped me work my head around this. I introduced veg juice and vegan smoothie yesterday after my 3 day clean fast keeping it low cal and in a fasting mimicking time window of 12-6pm, and I skipped my LDN. No hives this morning. I’ll be talking to dicksons my dispensing pharmacy about fillers in the liquid today. It certainly looks like the LDN is stirring my hives up and making my immune system a bit too active. I will try again at 0.5 after talking to the specialist pharmacist. So glad you’re all here to bounce things off. 😊🙏

Elise Rappoport
Just a wee update. I’ve spoke to Dickson’s dispensing pharmacy in the UK. They agree with the above plan and suggested sticking at 0.5. They also sent the ingredients over and one of the fillers is red dye & that is something I think may be causing an issue. I can’t look at a skittle and if I see a red velvet cake I take a very wide berth. Very interesting. Worth looking at those fillers if you’re having problems.

Lizanne McAdams-Graham
Elise Rappoport….red dye is a big trigger for me as well. Hope you find the right LDN and it helps you.

Elise Rappoport
Lizanne McAdams-Graham going to try the sublingual drops – they only contain glycerol, water and LDN, the caps contain gelatine which is another trigger for me.

Lizanne McAdams-Graham
Elise Rappoport, great and I sure hope that works for you. Good to know about gelatin and Thanks for sharing the info.
why is red dye in your capsules by the way?
Crazy disease.

Elise Rappoport
Lizanne McAdams-Graham I’m on liquid – it’s not in the gel caps, just in the liquid. 🤷🏽‍♀️

Lizanne McAdams-Graham
Elise Rappoport oh, ok.
I’m taking .5 capsules and don’t seem to be bothered by the gelatin in the capsules assuming it’s in them. I didn’t check the ingredients and got it from Austin Compound Pharmacy. The pharmacist is so knowledgeable and helpful to me.

Elise Rappoport
Lizanne McAdams-Graham love Austin. I made a film about million dollar champion rodeo cowboys back in 2001 and was based there during the edit. I’m back in the UK now. Such a fun city. I have old family friends there too and hope one day to visit with my kids and husband.

Lizanne McAdams-Graham
Elise Rappoport now that’s pretty cool. What is your position in the film industry?
Would love to meet you if you visit and if I’m still here.
We have only been in Austin a year. Moved here from Denver and really missing Denver.

Jan Maher
The compounding pharmacy I get my ldn from uses olive oil. I don’t get why so many pills and capsules have red dye added to them. All it does is create problems for many of us.

Elise Rappoport
Lizanne McAdams-Graham I’m a producer. Are you in the industry too?

Lizanne McAdams-Graham
Elise Rappoport very cool😎
I’m in dance but have worked in the film industry as a dancer. My son is also an actor in NYC.

Elizabeth Gerardi
Wondering if your still on LDN and if you’ve improved? Considering trying it but nervous cause the results seem to be different for everyone

Elise Rappoport
Elizabeth Gerardi so I came off and hive wise done much better. However, i am going to go back on the sublingual drops, which don’t have red dye filler. I think this may have been the issue. Like Jan, I’m going to keep it at 0.5 for a few weeks before

Elizabeth Gerardi
Elise Rappoport okay thanks for responding hope it works for you! I joined the LDN support group and I’ve read multiple people who said their hives got worse before they got better so maybe it’s just a matter of waiting it out for the body to adjust. Hopefully the new filler is helpful I know red dyes are not good. Do you respond to antihistamines? Can they be taken with LDN?

Elise Rappoport
Elizabeth Gerardi mine definitely got worse – I attributed to filler and also it seemed to make my immune system a bit more active. I don’t think I need to go higher than 1. Things definitely took a turn for the worst when I upped beyond 2 – perhaps it was too quick but I followed the guidelines. I get a bit of relief from antihistamines and montelukast. The things that help me most are diet and fasting. LDN seemed to make my fasts more effective.

Jan Maher
I’m on 0.5 LDN again after having gone up to 1.0 and 1.5 and running into problems with leg pain (mild arthritis discomfort suddenly became raging sciatica until I dropped my dose). Hives aren’t gone, but I’m able to go 4our or five days between hydroxyzine doses now, and the hives I do get are much less itchy. So it seems to be working for me. Filler is olive oil. (I avoid red dye like the plague, too.)