omalizumab

[Loveducks]

Hi, has anyone tried the above injections. I have been approved for this as I have allergic asthma and EILO. I'm currently permanently on Prednisone as inhalers do not work for me and hoping with these injections to be able at some point come off Prednisone. Any feedback would be greatly appreciated. Thank you

[eleanordigby]

I’m on them & saw a fantastic improvement after 2 doses. Life was magical! Unfortunately, I have several lung conditions which have got worse over time & it’s no longer as effective, but that’s just me, my consultant says nearly everyone who improves on it stays that way.

[Loveducks in reply to eleanordigby]

Hi, thank you for replying. I'm sorry they are not as effective especially as you state after 2 doses it was magical. Hopefully they are working on things all the time and will find something that will work better for you.

Take care x

[My_fairy in reply to eleanordigby]

not really as it stopped working for my daughter after 4-5 months. Good luck

[Starstream]

I have been on bendrazmabs for 20 months now and have been able to wean down to 3mg per day prednisolone. I currently have a plan to wean off altogether, if all goes well it will take 5 months, it's very slow.

[Loveducks in reply to Starstream]

Thank you so much for replying. That's brilliant 3mg of prednisolone, I'm desperate to come off them and even better if you can come of them altogether. Let me know how you get on and I wish you all the luck of coming off Prednisolone. Thanks again

[Starstream in reply to Loveducks]

Thank you, hope the injections are good for you too 😀

[Bwv945]

Hiya, Go for it! They have been a game changer for me. My only side effect has been fatigue following the injections but the benefits far out weigh the consequences.

Good luck xx

[Loveducks in reply to Bwv945]

Thank you so much. To be honest I'm used to fatigue at the moment where I'm so out of breath all the time. I'm going to go for it, I have nothing to loose, it's just getting there now. Would a B supplement or Magnesium help with the tiredness?

Thanks again xxx

[hilary39]

Xolair has been pretty good for me. I have zero side effects but I still have somewhat constant exacerbations. I think I'm an unusually severe case of allergic asthma though.

I did have a good test case recently. My doctor had me try another biologic Dupixent and I had a bad reaction so I went back on Xolair. By the time I restarted it, it had been almost 3 months since my last shot and I noticed an instant improvement, literally within an hour or two of getting the shot.

So I do think it's working well but I still need courses of pred 4-5x a year. That's on top of the 20 mg of hydrocortisone I take daily because I developed adrenal insufficiency (AI) after so many years of prednisone use.

If you taper down from your prednisone, be sure to get constant cortisol blood draws. A lot of us on here developed AI from being on prednisone.

Take care and keep us posted on how it goes for you!

[Loveducks in reply to hilary39]

Thank you so much for the in-depth reply. Mine is severe allergic asthma as well. I've been constantly on Prednisolone now for over 6 years and trying to reduce them now because of weight issues but have to take 240 fexafenadine which is helping a little bit but waking up with a really dry mouth.

I'm having my bloods done soon so will ask for an AI test, I'm going to look that up actually as I have been trying to lower my steroids but feel a bit rubbish if I'm honest.

Do you think you will be able to lower the 20mg or is it permanent AI? Sorry to ask the question, I hadn't realised long term steroids can do that, I hate how they make me feel I'm on a real roller coaster ride with them with regards to emotions, but at the end of the day they keep me alive.

I will let you know how I get on with the injections.

Thanks again for your time and take care x

[hilary39 in reply to Loveducks]

I think many if not most people who develop secondary adrenal insufficiency have it for life BUT definitely not everyone does!! There are some people on here [like Lysistrata an admin] who have seen theirs reverse.

I've had it for four years and my cortisol has stayed super low so my adrenals so not seem to be waking up and I am stuck at 20 mg a day of HC. Are you seeing an endocrinologist? Do you have an ID bracelet and emergency injection? Those are two critical things. And you know the sick day rules right?

addisonsdisease.org.uk/newl....

[Loveducks in reply to hilary39]

Thank you. No I'm not under a endocrinologist and to be honest I just had to look that up. I am having bloods soon and will check that they are going to test AI as I just looked up some of the symptoms and apart from no weight loss (I wish lol) I do have the other symptoms yet that could be for other reasons.

I was looking at the ID Bracelet but at the moment I don't leave the house. Emergency injection, is that the same as an Epipen? I only found out about the sick day rules about 6 months ago and that was to double my steroids when I become unwell so I'm taking it that's what you mean?

I think it just becomes such a way of life that you learn to just plod on by and live with it which is why I decided to join this forum to see if there were any tips people share that can improve things. Don't get me wrong I am under a brilliant hospital but where it is so far away then Covid hit and I had to shield I try not to make a fuss but I'm not going to lie I have been struggling a bit with this heat which a lot of people are and I have a video link in July with the Hospital and I am going to be totally honest with everything.

I'm my own worse enemy, I try so hard to wean myself down on these steroids where I don't feel brilliant on them side effects wise, I did up them slightly today to see if it helps.

Thank you again, I do really appreciate the information

[hilary39 in reply to Loveducks]

If you have been on pred for that long and your cortisol is low, you may have secondary adrenal insufficiency for life in which case you should either find a GP who knows a lot about it or an endocrinologist to follow you as it is a very serious condition. Even when you take your 5 mg of pred or 20 mg of HC a day, your cortisol can drop for all kinds of reasons ranging from extreme emotional stress to the stomach flu. Adrenal crises can be life-threatening so it is really important to know how to avoid them.

I've had SAI for four years and have had four adrenal crises already. The first was before I was diagnosed (so before I was on HC), the second was from traveling to a very different time zone (I hadn't realized you need to updose for that because your circadian rhythm gets all wonky), the third was when I had the stomach flu (this is a very common cause of crises because your stomach can't absorb the meds), and the fourth was last summer due to a very stressful situation.

We are supposed to keep 100 mg of hydrocortisone and a syringe on us at all times in case of an emergency (e.g. car accident) so we can self-inject.

Sharing a few things I wish I'd known about SAI earlier as it's taken me years to learn all this! Hope it helps xx

==============

Splitting your doses: following circadian rhythm dosing is huge because HC wears off after a few hours. Splitting the dose helps keep the level consistent in your blood. I take 5 mg when I wake up, 5 mg at 8 am, 5 mg at noon, and 5 at 3 pm. Here's a great pamphlet with more info. chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/cahisus.co.uk/pdf/CIRCADIAN...

Preparing for crises: Someone suggested keeping crisis instructions in my wallet from my endo which made a huge difference the last two times I had to go into the ER.

Knowing which vitamins to take (and which ones not to!): I am good about taking magnesium and vitamin D now (and learned to say no to ashwagandha which my one well-intentioned friend keeps pushing on me because it lowers cortisol 🙂 ).

Drinking electrolytes and salt water: I drink electrolytes daily and salt water whenever it's hot, I've exercised, or I am having low cortisol symptoms.

Exercising: I had been feeling lightheaded and sometimes had low cortisol symptoms after exercising without understanding why. Then someone posted a chart in my support group showing our bodies can't adjust blood sugar during exercise very well. I've started snacking 30 min before exercising which has helped a lot.

Treating steroid-induced rosacea: After three years of trying so many creams, antibiotics, essential oils etc., someone recommended Soolantra on one of my posts in a different SAI group and ten days after I started using it, my rosacea was mostly gone.

[Loveducks in reply to hilary39]

Hi thank you sooo much for this information. Ironically I was taking ashwagandha tea the beginning of the year, but think I read that somewhere and stopped it thankfully. I'm taking magnesium and a B Complex, I'm meant to take vitamin D as I also might have MS, but when I tried taking it, awful stomach issues.

I always have extra steroids on me at all times but do not have a syringe, although I can't tolerate above 50 really awful problems. I do need to look further into this. Splitting the doses totally makes sense as well, I was always told by my GP funnily enough to take them around 10am due to our bodies natural cortisol peaking at this time, but sometimes especially in this heat I can't wait that long. I was experimenting splitting the times with a Flutiform inhaler but I feel the inhaler really played with my moods and have stopped it again at the moment.

Thank you for the link I had a quick look at it which was really informative and have saved it to read it again. I'm meditating at the moment due to the fact I have really bad stress which I know doesn't help things which is another reason I need to research this more.

Do you make your own electrolytes?

Thank you so much again for your time with this, I really do appreciate it. Take care and have a nice weekend x

[Lysistrata Administrator Community Ambassador in reply to Loveducks]

Hi, Hilary has given you some great information and I can't add much, but just wanted to agree re the split dosing and to say that it can be quite individual.

10am is way too late for a first dose though for most people, assuming you're getting up a few hours before most days. I used to feel rubbish all day if I took the first dose past 8am! (I used to set an alarm for 6, take it and go back to sleep lol). The first dose generally needs to be the largest. Your GP was not wrong about more demand for cortisol, but the 10am thing is weird, especially as it tends to peak earlier than that for most people and the testing is usually done at 8-9am to catch the peak.

I found I had to educate myself about adrenals, because a LOT of medical people seem to have scary ideas about AI and wanted to push really unsafe things on me in hospital (one thing they often forgot was that hydro is not as strong as pred and 20mg hydro is about 5mg pred). I had an amazing endo nurse which really helped and she was great at teaching me - though I forgot her advice in my one adrenal crisis, which was brought on by RSV infection which then triggered my asthma. It turns out brains really need cortisol to function, so it took me ages to notice I was having a crisis and inject myself - but I managed it!

I think Hilary has covered most things but you may find this post I wrote helpful: healthunlocked.com/asthmauk...

[Loveducks in reply to Lysistrata]

Hi thank you so much. Maybe I misunderstood him as I was really unwell at the time, he definitely said 10ish and possibly felt that was because your natural producing cortisol drops then, who knows, where I am feeling rubbish I have been taking them earlier. My husband gets up at 5.30am so going to take one then from now on.

I'm going to be totally honest, because they give me mood swings and the weight gain I had tried to very slowly taper down to 7mg and yes I feel so rubbish. I tried increasing by 1mg to see if that would help and now 10mg. If I'm really truthful I probably feel much better on 20mg asthma wise but mentally wise not great. Already on 10mg I'm feeling hungry but even if I don't eat I still weight gain. I'm going to keep increasing by 1mg to see if I can get a happy medium without reaching 20mg. I used to feel hyper on Pred but now feel exhausted all the time, but I'm at that age with menopause and possibly MS so it's really hard to work out things now.

I am due when I can master up the courage for a visit to my Asthma Hospital where I know they will run the full tests on me. Since Covid it has all gone by the wayside but I know I need to get back on top of this, which is why I stopped burying my head in the sand so to speak and joined for the first time this forum to start educating myself more and hear other peoples experiences.

I read your link and really appreciated the time you took to write this to help others. I will get a med bracelet sorted as I have a severe nut and latex allergy as well.

Thanks again for taking the time to message me, have a lovely weekend

[hilary39 in reply to Loveducks]

Oh good I'm so glad all the info we're giving is helpful. I found that circadian dosing pamphlet to be one of the most helpful things I've seen so far in my time researching AI! Dr. Hindmarsh is great and all the materials on his website are super useful.

I buy my electrolytes from Decathlon or online.

Keep us posted on how you're doing!

[Tree20862]

I have been on it for 5.5 years. The first year was the worst asthma year of my life. Once I had had 6-7 doses of the Xolair though, we had successfully weaned me off prednisone. I had never been on prednisone that long before (6 months straight). My exacerbations have become less often, less severe, and require less prednisone to break. The last time it was only a 3 day course at 30 mg.

This year, doc has started decreasing my other meds, successfully so far. 🤞🍀🤞🍀

[Tree20862 in reply to Tree20862]

I am a severe persistent asthmatic with environmental allergies.

[Loveducks in reply to Tree20862]

Thank you, I am exactly the same along with EILO and ILO through breathed in allergens and inhalers do not work only steroids. That's brilliant news, I've been on steroids for so long now I really want to get off them. Is it working in this weather and hay fever season just as well?

I'm so pleased your decreasing your other meds as well, it's great not to feel like a walking chemist lol. I will keep everything crossed for you. Thanks for taking the time to reply to me x

[Tree20862 in reply to Loveducks]

I increase my antihistamine at the beginning of the the season, an go back down.

I have a sick plan that I use if I get sick or if anyone I live with gets sick.... Just in case I catch it. It worked this past winter and I did not get sick🤞🍀🤞🍀.

This year is the first year we have tried decreasing maintenance meds. We will see if I can stay off. I had to go back on the one inhaler because of a sick plan but went off after the sick plan was over. Now I am a week off of zyflo 🍀🤞🍀🤞

[Loveducks in reply to Tree20862]

Hi

That's what I'm having to do at the moment, I never knew until recently on a video chat with my consultant I can take 2 180mg Fexafenadine (think I've spelt that right) twice a day, so I'm taking it first thing in the morning and just before bed. It does seem to be helping as I was really struggling with the heat and hay fever but I wake up with such a dried mouth and my nose at first feels blocked does that happen to you?

I've got online physio tomorrow as well as most of us do I've developed an incorrect breathing pattern so they are trying to fix that for me and show me an exercise to help with the out of breathless.

When I get sick I'm told I have to double my steroids which I do to some degree as I can only handle a certain limit, but I can't take antibiotics but everything crossed this does seem to work and I reduce them as quickly as I can. I'm currently looking at my diet as well to see if there are any foods that help or hinder.

It's nice talking to you and I really hope it all works out for you x

[Tree20862 in reply to Loveducks]

Fexofenadine does dry out the nose a lot.

My allergist suggested a gel in the nose at bedtime. I found it at the drugstore by the Saline spray.. It might worth looking for.

Good luck to you.

[Loveducks in reply to Tree20862]

Thank you so much, my nose today is a nightmare to the point I haven't taken another Fexofenadine where is it so blocked. I'm about to try a saline nasal rinse to see if that helps. Will definitely look at the gel as I had never heard of that and maybe look at a different anti histamine.

Sorry to sound dumb, does the gel act like an antihistamine or just controls allergens in the facial area. The only reason I have upped my Fexofendine it wasn't just the hay fever I have developed heat lumps on my legs from the sun, doesn't matter what factor I put on them as soon as the sun looks at them, I come out in red lumps but not on the rest of my body, it's really weird but a double dose of Fexofenadine does seem to help clear it.

Thanks again I really appreciate it x

[Tree20862 in reply to Loveducks]

Gel helps hydrate the nose so it doesn't get so dry.

[runcyclexcski]

I was on it 2007-2014 and 2021-2023. No hospital visits on it. They switched me to Fasenra (the "if it aint broke do not fix it" rule was broken) 3 months ago, and I am now back on square 1 (hospitals and prednisone).

[Tree20862 in reply to runcyclexcski]

😥

[Loveducks]

OMG, sorry to hear that. I wondered why they changed it seems madness if it was working. I haven't heard of Fasenra will google it shortly. Hopefully you will be able to go back on it and start to feel well again. Take care x

[fallon12]

Hi, yes I’ve had this injection and 2 others. They didn’t work for me as I had side affects that I couldn’t cope with. Saying that they did improve my asthma while I was on them but they had to stop them. I do know a few others that have got on great with them . I think it’s worth trying as it can work so well. Good luck

[runcyclexcski in reply to fallon12]

>>>They didn’t work for me as I had side affects

Fallon, what were the side effects with Xolair? No worries if you don't want to say.

They now tell me that there are two more mAbs -- Dupilumab (anti IL4/13) and Tezepelumab (anti-TSLP). Need to read on them.

Xolair was the first mAb on the market. The first paper is from ~1991, it was approved in ~2006 AFAIR (I got it in 2007). It is supposed to bind to all IgE (antibodies against allergens). So it is sort of a "kill them all" molecule. I believe the more recent mAbs are meant to be more specific (Fasenra is anti-IL5 etc) and are more targeted. I guess the idea was to have less side effects. But then it appears they may not work for some, since asthma has multiple pathways involved (e.g. not just IL-5).

[fallon12 in reply to runcyclexcski]

please remember we all react differently. My side effects with Xolair were hair loss, severe headaches , sickness , fatigue. Dupilumab Didn’t give me any side effects but it also didn’t help my asthma. Tezepelumab really helped my asthma but it made my joints would swell and become painful. They said I probably had arthritis already in my system and the biologics just speeded up things . But they should explain everything to you before you start. I really wished I could have stayed on them as my asthma really improved.

[runcyclexcski in reply to fallon12]

Thank you, Fallon!

[Tree20862 in reply to fallon12]

Migraine headache with aura? Or headache alone?

[fallon12 in reply to Tree20862]

Headaches alone. No aura. Hope this helps

[Tree20862 in reply to fallon12]

Thank you.

I have been having more migraine headaches with aura for the last few years. I was wondering if I needed to look at a different cause.

[fallon12 in reply to Tree20862]

I’ve been getting migraines and vertigo for about 3 years now. Not sure I can connect them to biologics. I hope you get some help with your migraines x

[Tree20862 in reply to fallon12]

I have been working with my PCP. Next month, neurologist.

[Loveducks]

Hi, exactly I have nothing to lose, I am going to go for it, I have to stay there for the first 3 doses for 4 hours just to check I don't have any allergic reaction, I'm going to keep all my fingers crossed as I am a bit like you, I have a lot of side effects with things, I've always tried to do things naturally because of it so taking steroids isn't my ideal situation but I wouldn't be here without them so I have to look at them as a good thing, but it would be great if I can get off them.

Thanks for replying and honest answer, take care

[Tree20862 in reply to Loveducks]

I had to stay in the office for 3-4 hours for the first few doses as well. After that it was 30 min, I think?

After 5 years I got permission to give them to myself. I had education at the office during one of my appointments then the next visit, I gave my injections to myself, in front of the nurse.

I am also a nurse. They have only had 2 patients do this.

[Loveducks]

Oh I'm lucky then, maybe it's because of the distance but they have said I can inject myself after the first 4 or they will even show my husband. Apparently it's not as bad as an Epipen, fingers crossed

[Tree20862 in reply to Loveducks]

Good luck to you.

I only live 12-15 minutes away from my MD office so maybe that's why I went so long to the office.

Do you know if your dose is one injection or 2? I have to do 2...I am on 300 mg, 2 of the 150mg syringes.

[Loveducks]

I don't know yet, I think I have a video link with them next month and hopefully can discuss it then with them. My only problem now, since covid I have developed a phobia and don't go near people let alone walk into a building, so having to work on that at the moment. They have been really understanding about it, the only thing is every time I have to have a set of bloods done which only last for a year, the last ones a nurse come to the house in September to make sure I still qualify and I do but my GP wanted me to have some more bloods due to my white blood cell count and I have been brave and finally got the nurse coming middle of July so hopefully that will cover what the Hospital needs as well. My goal is to beat this thing and hopefully start them in October. From this site now I understand why they wouldn't let a local nurse come in especially as I have allergic reactions to a lot of things but even letting the nurse in is a massive thing for me I have a complete panic attack and have to try and calm myself down. The brain is a complex thing, I would never have thought something like this would happen to me but I am determined to conquer it

[Tree20862]

Peace vibes.