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Has anyone gained weight from antihistamines and xolair shots.. I have awful joint pain, hair loss, and a rapid weight gain.. like 7 lbs in two weeks.. But the hives are a lot less but at what cost with all these drugs.. any one out there experience this?? What did you do ??
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bill38855 jana94738
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jana94738 bill38855
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jennifer21476 jana94738
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Meemaw29 jennifer21476
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Jennifer; my insurance refused to cover it too. My doctor applied for assistance directly from the pharmaceutical company to provide samples free of charge. In exchange I may be asked to update my condition from time to time. The only thing that I pay for is my monthly charge to receive the injections from my doctor. I too have gone the holistic route and high doses of very expensive supplements. Couldn't tell that it make much difference and frankly, when I feel stressed and/or are broken out, the last thing I want to do is give up the comfort food that make me feel better like chocolate! Good luck...it's a journey, but we are all in this together!
jana94738 jennifer21476
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I have tried cutting out food and nothing seemed to help much except gluten free seemed to calm down the itching. I cant have any allergy testing until i am hive free without meds for 6 weeks.. not sure when that will happen ,I am fortunate my insurance pays for my xolair shots completely.. But I know they do have programs to help if ins doesnt pay.. and yes i gained weight like that but my allergist said it is the antihistamines and not the xolair .. I am trying to be off all antihistamines now so we shall see.. But when i am stressed I find myself stress eating .. but that would not account for this weight gain...The xolair works for me I will be having my 7th shot but I do have joint pain and not sure if the shot is causing this also.. but it does say it is a side effect.. and when i say it works for me I mean I am only getting a few hives and they small but they do itch but they come and go , no rhymn or reason .. I would say yes try the xolair it may work great for you and no side effects... It is better than the horrible hives i had before from head to toe.
Julesy01 jana94738
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I have joined the urticaria party now having these awful outbreaks for the last 5 months. I am currently taking the highest dose possible of antihistamine and the doctors have introduced an extra tablet called "montelukast". This seems to be helping but my concern is that i haven't been able to decrease my dosage at all without the hives reappearing. I have just started noticing an increase in drowsiness, weight gain, hair thinning and loss and have also started to get really bad headaches which I am not usually prone to.
The doctors have spoken to me about the Xolair injection that i am only able to qualify for if all other methods fail. I am not keen to be taking any of it to be honest but feel like I have no control and no choice. These hives are taking over my life.
jana94738 Julesy01
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Hi
I too tried everything and have been taking xolair for over 2 years.. I still do get itchy occassionally but no breakouts and sometimes i think it is gluten and sugar as when i cut that out I seem to be itch free.. When i first started to take xolair my joints hurt like crazy and it was hard to get going when i would get up to walk.. I also gained weight and lost some hair.. The painful joints are gone and my hair has grown back a bit but the weight is difficult to come off but then again i take thyroid meds for my thyroid and these symtoms could be partly due to those pills.. the only way to determine the headaches is start to eliminate some of the drugs.. I have had to do that with some of my pills infact a thyroid drug gave me the worse occular migraines.. I know for a fact antihistamines cause weight gain as well .. but with all the side effects of xolair I m not willing to give it up as i could not function with the daily horrible hives...
tish99161 Julesy01
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Hi Julesy
I am in South Africa but totally understand - I also haven't met anyone with this terrible condition and not many understand what we go through i.e the unbearable itch, the scratching and hyperpigmentation, the debilitating effects of these hives and the change in quality of life!
Here in SA; limited information available, shortage of trained Allergists (maybe 10 in SA), very expensive consultations and expensive medication (also Xolair is not covered by medical aid/insurance)
I was taking quadrupled dosages of antihistamines along with 10mg montelukast, but now have included cimetidine to it and for the last week appear to have only one or two baby hives with minimal itch.
How did you attempt to decrease the dosages of your antihistamines? was it just trial and error? i would like to try this weekend (too afraid to try during the week due to work ).
Julesy01 tish99161
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Hi Tish!
I feel for you having such limited resources there..fortunately our public health care system covers all specialist visits and the xolair injection now that I have been approved for that.
The reason i am moving onto this next phase of xolair is due to the fact that I am still taking a quadruple dose of antihistamine also and haven't been able to successfully decrease my meds at all without breaking out again. I did try a couple of times but as soon as my breakouts came back a little more, i would go straight back on the full dose as I was so afraid it would come back completely.
I have now been on the full dose since early September and along with the montelukast, I have been able to "manage" my hives however it definitely hasn't resolved the problem - just kept them at bay. I discussed with my doctor, this is not the way I want to live my life and we decided the injection would be the last resort. Just waiting on my script to arrive and then i can get started.
It sounds like you have your breakouts under control so maybe try to take one of the antihistamines away for 4 weeks, another for 3 weeks and then another for another 2 weeks and so on...just make sure you take yourself off gradually to give your body time to adapt. It is such a high dose to be reliant on you don't want to shock your body. I made this mistake the first time I went off them and they came back with full force! Good luck! Let me know how you go with it. x
tish99161 Julesy01
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Hi Julesy
Thank you for your response. Much appreciated!
Really glad that your public health care system covers it. I have private medical aid/insurance here in South Africa and Xolair is still not covered by it (each injection is super expensive- R10000).
Unfortunately, in South Africa there is no financial assistance for the Xolair as well as the Allergist firstly has to determine if it is severe enough to warrant Xolair and we then have to pay cash for the injections.
Glad that you were able to "manage" your hives with your high dosages as some people sadly are unable to do so with antihistamines- I was only able to manage it for the last week after adding cimetidine to my high dosages and cocktail of pills but I am so grateful.
Thankfully, it is the first week of relief after trying so many different types of antihistamines and I am hoping I can continue managing it until the hives disappear altogether ( i had read that The main focus of treatment is trying to alleviate symptoms while the urticaria slowly “burns” itself out and eventually clears – a process that may take many months or even some year- different for everyone!)
I will continue with my high dosages of antihistamines and slowly try to eliminate montelukast and then slowly drop dosages of antihistamines as well (just wish there was more info on how to wean ourselves off) I am hoping and praying that mine will go away soon as well. I have read that chronic urticaria lasts 1 -5 years and sometimes longer (praying that we will all be hive-free soon though).
Please also keep me informed on your journey with Xolair. Wishing you all the very best as well. May you be hive-free soon soon! Take good care 😃
Julesy01 tish99161
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Hey Tish,
Sounds like you are gaining some normality back and not seeing as many wheels occurring each day which is great and definitely the first step to weaning yourself off the medication. I would suggest keeping the montelukast the same as you take 1 of your other tabs away for a couple of weeks at a time. This process will be painfully slow but your body will need to adapt to it gradually. I think the montelukast is actually the medication that has the most successful impact on eliminating the hives so I would leave that until you are on very minimal dose of antihistamine before taking that away. I think we are all extremely used to being patient as we have been left with no choice as Urti sufferers! As long as there is a positive outcome at the end, it is worth the wait.
All the best with your journey Trish. We will keep each other posted!
Maro1973 Julesy01
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I'm in the same position as you are right now without the montelukast.... Doctor keeps increasing my dose with the antihistamine... next step will be Xolair... however I was worried abut the cost and now reading all the comments I know I can receive financial aid...
Julesy01 Maro1973
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Ive had 2 injections so far. Straight after my first injection, I actually had more wheels than usual then they all disappeared after a few weeks. Now only have a few left but I have still been instructed to stay on the max dose of antihistamine and montelukast. I am only able to decrease that dosage once ive been completely free from any sign of the hives for at least one full week.
Its a very frustrating and long process and you have to be patient.
I would advise trying the montelukast tab...i got amazing results almost immediately from those tablets added to my full dose of antihistamines. They just never completely went away so it was holding mine at bay but not curing me.
May work for you!
Best of luck with everything!
Maro1973 Julesy01
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Has anyone tried a low histamine diet, NO medicine at all....
What about acupuncture or natural medicine??
Julesy01 jana94738
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where are you all from? I am from Australia, NSW and would love to chat to anyone close by. I haven't met one other person who has had this terrible condition. Its quite difficult to get people to understand who have never been through this before.
jana94738 Julesy01
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jules I am in the US.. There are many ppl here with the hives unfortunately..
kye1089 Julesy01
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hi Jules,
I'm on the Gold Coast, Qld
I have had CSU since 2013 and just went onto Xolair in January 2021. it has certainly stopped the hives and angioedema, and helped control my Asthma, but joint pain is one of my main concerns. How are you doing now?
kye1089 Julesy01
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I have also had CD (Coeliac disease) since 2013 as well So I am 100% gluten free with my diet