Xolair not working
Posted , 6 users are following.
Hi all
Thought I would provide an update on my progress.
I've had my 3rd Xolair injection 2 days ago (300mg). The previous 2 injections didnt help and I was told clinical trials show best results after 3rd dosage. Well....2 days after my 3rd Xolair, I have woken up with a massive breakout!
So that's it...no more Xolair. In SA, it costs R10 000 per injection - thats the price of a home mortgage repayment. For nothing. Zilch. Nada.
The ONLY thing that keeps it under control is a low daily dosage of Prednisone (10mg). Which costs R10 for a months supply.
Next step is to consider immuno suppressants - but I will need to weigh up the side effects of that vs a low daily dose of prednisone.
And so the joy continues....wish the medical fraternity could find a cure for this already instead of making us pay tens of thousands of rands for stuff that doesnt even make the slightest difference!
#frustrated #Iknowmybodybest
0 likes, 13 replies
wendy62425 vera47921
Posted
If you have read other blogs of mine. Xolair did not work for me either after 3 injections. Doctor then put me on Cyclosporine very slow going up to 200mg then doctor needed to add prednisone...that combination made me hive free and gave me quality of life back after a long suffering time! The key is to stay on dose for a couple of months when you become hive free... then doctor had me go down extremely slow on both meds. It has taken me a year to go off the cyclosporine and I am down to 3 mg of Prednisone which I will be on for another month or so then the doctor may drop to 2mg or maintain low dose. She would have me go down 1mg at a time with Prednisone for a couple to few weeks before going down another 1mg and so on. This seems to be the key.....VERY slow taper!! Otherwise the hives will come back in a vengeance........that happened to me with an earlier doctor.
i have a friend in the U.K. That was able to get her hives under control with only 100mg of Cyclosporine with a very slow taper without needing Prednisone. Mine was more severe so needed it. Also we both take L-glutamine each day and take a very good probiotic as well. Drink a lot of water. Try not to stress as that affects your immune system. That was probably my trigger to having Urticaria again.
Also...I was glad in a way that the Xolair did not work for me as it caused me to lose hair.
i hope this helps you Vera. Please keep us posted. I wish you well!
Best regards,
Wendy
vera47921 wendy62425
Posted
Thanks Wendy, that is very useful. My doctor is adamant I must go off the prednisone - so maybe its time to find another doctor. I'm keen to try the Cyclosporine as well.
Ive been tapering off 2.5mg of prednisone per day (which i thought was slow) but obviously I must go slower. We only seem to have 5mg tablets here so i break it in half - must see if i can get 1mg tabs.
If my doc is not open to the prednisone and cyclosporine combo Im going to find another doc as Xolair is not the answer.
Is your urticaria due to auto-immune disease?
wendy62425 vera47921
Posted
Hi Vera
it appears to be an auto-immune disease. I have had this twice in my lifetime before this bad breakout. Both other time is was able to control the hives with Claritin and other time Allegra and the like and lasted two years then hives just left with decades in between with no breakouts!! This time I am older 64 so maybe age gave me such a problem as nothing was working except Prednisone.....but earlier doctor did not do this VERY slow taper.
Yes the Prednisone does come in the 1mg which has been a blessing...my doctor ordered about 300 the first time and I thought wow I'll never use all that........well.....I did!😊
These meds are not great to have to be on but to achieve quality of life...they are a blessing! I have been very fortunate as I didn't have side effects. You should take some calcium for your bones.. I have osteopenia but others have that at my age without meds.
wendy62425 vera47921
Posted
vera47921 wendy62425
Posted
Thats very helpful thanks. Im convinced mine is auto immune as well as my mom has bad rhematoid arthritis which she got when she was 40 (Im now 42 - feeling 95!!)
No Im in South Africa and the understanding here of the disease and of treatment is basically non existant.
As you rightly say, its not great to be on cortisone but without it one has no quality of life!! Im on probiotics, omega 3, vit D; thyrosol and other vitamins for the gut. Ive also had no side effects from prednisone.
Im going to adopt your approach of cyclisporine and prednisone and will keep you updated.
Thanks so much for the info! Xxx
wendy62425 vera47921
Posted
Chronic urticaria here in the United States seems to be difficult for our doctors to treat as well. I was so fortunate that when my immunologist doctor could not help me anymore she referred me to Johns Hopkins and found a doctor that was able to help me. She said it is very difficult for doctors to treat......I wish they would do more studies on how to cure this horrible disease!
wow......you are taking all the good vitamins ........what is Thyrosol? Taking care of the gut is so important! Look up L-glutamine. Someone awhile ago said Quercetin was good for her.
I live in Virginia, USA.
i hope you have a very nice day!
blessings,
Wendy
rose00110 vera47921
Posted
I really feel sorre for you where do you live? That's horrible. Can't wait to see what they will try on me because i can't live like this anymore i can feel that i will have a breakdown if the specialist doesnt help me. I pray for you that you will finally find a solution. Here in canada it's free where do you live ?
vera47921 rose00110
Posted
Thanks for your kind words. I live in South Africa. Xolair is frightfully expensive here - probably only about 1% of the population here would be able to pay for Xolair themselves (as the medical aids dont cover it for urticaria). Luckily I can afford it but its not working, so a total waste of money!
Vera
rose00110 vera47921
Posted
Your welcome i've spent alot of money so far to. Doctors don't do anything so i went to a naturopath for 3 mnths the insurance paid the first 500 dollars but i had to pay another 500 dollars out of my pocket and nothing he did worked on me. Guess we are lucky here in Canada. I don't want to spend anymore money on this. All the best to you.
starbreiz vera47921
Posted
Ugh, that sucks. My Xolair injections took about 3 months to begin working. It is a life changing drug for me. I refuse to take prednisone any more after getting Cushing's syndrome. Good luck!!!
wendy62425 starbreiz
Posted
what is Cushing syndrome? How long were you on prednisone?
thank you
wendy
dy70 starbreiz
Posted
I've had 2 shots with no relief (150). How long after the third shot did you get relief? I'm going crazy.. Quality of life has gone down the drain.
justine_23155 vera47921
Posted
I've had 3 years of immuno suppressant and still have to peel my bedsheets from my skin every morning where my blisters have crusted . I'm at a loss now. All my tests for causes come back negative. If it weren't for the fact that my skin is now a massive weeping sore the medical profession would say I'm perfectly healthy!! What's going on??? Are there any answers out there?