I'm at a bit of a loss

[libbie142]

Hi everyone,

Sorry this is going to be a bit of a long post but I'm at a bit of a loss as to what to do. I'm 21 and have brittle asthma and have had 13 admissions to intensive care and god knows how many 'normal' admissions over the past 3 years. I'm currently taking fostair 100/6 , spiriva, salbutamol, montelukast, phyllocontin, fexofenadine, and have had repeated courses of prednisolone until about January this year when my consultant decided to keep me on 30mg maintenance dose.

None of these meds seem to make a great deal of difference. They keep me well for a certain length of time but I still have frequent admissions and it feels like the side effects of the meds are starting to outweigh any benefits - my bone density is low thanks to the steroids which is not an ideal situation for a sporty 21 year old and I've already had a few fractures. My consultant said she's tried everything which is easy to give in the community but wants to step treatment up to reduce my dependency on steroids and just generally improve my quality of life because I'm so fed up with it all now. She wants to start me on methotrexate and see if that brings any improvement before starting me on xolair injections.

She did warn me that methotrexate is not a nice drug to be on but its steroid sparing so is necessary. Is there anyone else who takes methotrexate or xolair for their asthma? Have you found any benefit from either of them? I'm just nervous about taking methotrexate at the age of 21 and the kind of implications it could have. I just hate the fact that it's come to this and don't really know what to think about it all anymore.

Thanks in advance for any advice

[Karjade]

My husband and sister in law are on Methotrexate for rheumatoid arthritis but I did not realise it could be prescribed for asthma. It stops the immune system from being too active but you have to have regular blood tests - at first fortnightly and then monthly. He takes two tablets once a week. He has never had any side effects on them but everybody is different. The hospital monitor him regularly but the tablets can weaken the immune system so that is why they give him regular blood tests to check liver, etc. and also regular eye tests. My husband has been on them for four years and he has been fine and all his tests have come back good.

[Mark-f]

Hi libbie .... Sorry to here your struggling ATM ... I'm still waiting to see if I'm compatable to start Xolair have been waiting for 12 months ! I'm currently on 20mg maintenance of preb but to be honest it isn't enough and I have to keep going back up to 40mg (8 tabs) I too have had thinning of the bone confirmed after dexa scan !!

It's certainly a roller coaster, can't help with the methotrexate !

Keep fighting !!! 👍

[Jokir152]

Sorry to hear your having a tough time, sadly it appears asthma can make you feel like your on a bit of a rollacoaster. Sadly. I have been struggling for a year. After having controlled asthma for 20yrs.

5 months ago I started an antibiotic called Azithromycin which you take 3 days a week(mon,tues,we'd) thought when it had kick in, I was able to start walking around without the constant coughing. Hey sorted! Not the case . You can continue on this med long term.

I have home nebuliser as backup, and use ipratropium together with ventolin was using this 3/4 daily but was able to reduce this after taking antibiotic.

Sadly came down with a cold thought I could control with nebs but not the case as sadly almost back in hospital. Bed rest for week and high steroids and it seems to be slowly kicking in. So frustrating trying to know best thing to do as your so right steroids are deadly drug. But sadly at times a needy one. Hope you use a peak flow as a good gauge of when things start to drop. As in future this is when I'll start to increase my meds with steroids next time. Sooner rather than later. To prevent myself having a lapse which I to feel I don't have a life at mo. Iv had allergy testing bloods show damp/mould allergy which hasn't helped.

I hope you have good support with asthma nurses and clinic, not sure where your located, im in London suburb. But my thoughts for myself if I haven't got to grips with meds by Autumn I'm going to get referred to The Brompton in hope they maybe have more helpful knowledge who knows .

Good luck keep positive how ever hard it feels to control its a case of getting the correct balanced for meds. The darn weather hasn't help us this year that's for sure.

[Gino39]

Hi there,

Sorry to hear that you are struggling so much with your asthma. It is horrid when it gets that bad. I don't know if this will help but apart from taking all the meds it is important to look at all the possible triggers that may be causing it. I know this is basic but so many things around us could be making it worse for you. In my own case my GP kept upping my asthma meds when it was instead a problem with food intolerance to dairy. As soon as I self diagnosed this my asthma problem dissappeared. Other common causes, dust, pets, plants etc should be looked at too..

All the best with it....

Gino

[Dizdog163]

I have brittle asthma and I use methotrexate (but in injections as I couldn't tolerate the tablets) in an attempt to reduce my maintenance steroid dose. I also use clarithromycin antibiotics (same antibiotic group) but twice daily in addition to subcutaneous terbutaline and all my other regular bits and pieces . Im not particularly allergic type asthma so don't qualify for xolair.

Methotrexate does have a nasty list of side effects but is monitored closely with regular blood tests etc. I get on ok but it has made a few of my liver function tests out & I have very low immunity. I think it's helped keep things more stable (I don't seem to be having to whack my maintenance steroids up quite so often) in combination with my other medications but I've not yet been able to reduce my maintenance steroids below 25mg. I've heard it can work well for some.

There are also other immunosuppressants that can be used I've tried mychphenalate (sp?) but did not get on with that at all & have reservations about trying cyclosporine or etanercept.

[WheezyAnne]

I am hoping that you don't have any pets at home, and do not use aerosols or scented products. You mention fexofenadine as your antihistamine. I used to have that, now take ceterizine 2 a day, as 1 does not work for me. Have you had Brittle Asthma all your life?

[RBea]

I've had great success going to asalt room for therapy

[diana-stoyanova in reply to RBea]

Did it really change anything? I did a lot of research on that - I don't see any actual reason for it to help for anything other than a cold.

[Coastwalker]

Look into getting your vitamin D levels checked out libbie142, or look into taking a good (safe dose) of vitamin D3 which is known to help Asthma. vitamindcouncil.com for newer, higher, (safe,) up to date doses.

Also if you get your vitamin D blood levels checked do ask for your results and check them against the vitamindcouncil.com charts don't accept 'Normal'

85% of us here in Uk are either low or deficient in vitamin D and do not know it.

Vitamin D is the 'sunshine' vitamin.