Searching for the Magic Wand

I know there are several of us really struggling at the moment with frequent admissions, total instability and suitcases full of drugs. I thought it might be an idea to have a thread where we can talk about some of the more advanced/tough/invasive treatments and share experiences, and possibly come across things we can speak to our consultants about. Maybe the illusive magic wand does actually exist!

10 Replies

  • Im on 17 drugs at present, and still totally uncontrolled. I cant tolerate theophylline, suffering severe migraine and sickness on it, but its been suggested I try it once a day not twice. Has anyone tried this? Im not sure how it would work as surely Id never get to theraputic levels? We are also considering methotrexate and subcut, both of which sound quite scary but Im desperate now! And if I stay on high dose pred much longer Ill be the size of a house, at least methotrexate reduces appetite!

  • Hi

    I started sub cut a few months ago & touch wood this has been the best thing for me out of everything else tried. Yes you could argue it is invasive but it soon becomes part of your routine & I'm really surprised how well I took to it although could be because it's doing something useful & a positive experience? Might have felt differently if it wasn't doing anything useful

    Whilst I was waiting for the funding for sub cut (my consultant had to fight long & hard but got there in the end) tried a fair few of the immunosuppressants & for me personally didn't have much effect. Everyone's experiences are different but I didn't tolerate methotrexate, mecofenolate didn't work & azathioprine (imuran) didn't seem to do much either! I didn't discount anything & was willing to try them all.

    It's early days but on the sub cut I have just started to reduce my maintenance steroids (lots of touching wood) & seem to be able to do more.

  • I think everyone is very different with theo. im on 800mg/mcg (cant remember) a day, and finding out if im FINALLY theraputic today - but im sure there is someone on here who is theraputic at something like 100mcg a day, if you were getting horrendous side effects at low doses then that may be becuase your levels were actually toxic and so you could still become theraputic at a lower dose. for me it has deffo made a difference. HTH!

  • I agree, I wonder if you were toxic. I get toxicity symptoms rapidly and am only on 60mg twice a day to get a therapeutic level!! Everyone metabolises drugs differently, they had to start me on tiny doses with a view to increasing it but bloods results said otherwise. That's the dose recommended for paediatrics. No wonder I was in such a mess when my old hospital put me on 200mg twice a day, I was probably gunning for a stroke LOL.

  • I was started on 60mg twice a day, which was undetectable in my blood, but made my heart a bit fast. When it was increased to 120my I developed a severe headache which got increasingly severe unti I had a full blown migraine, couldnt speak, was sick, the works! This was the 2nd time I have tried and the 2nd time its happened, so I am extremely reluctant to try it again.

    Dizzydog, I am intending to push for subcut I think (being admitted Wed for however long it takes to make some progress) as like you say, I think I could accept the procedure of doing it etc if its actually making a difference. I feel like I have no quality of life at present and need to get some back. Surely thats not asking too much?

  • Hi Sparkly, theres a big jump between 60mg and 120mg! Like you, on 120mg I was in so much pain I thought I was gonna have a stroke - plus the vomitting, its horrid. I dont blame you for being reluctant to try again. Good luck with your admission, hope it improves things for you :)

  • I'm therapeutic at 600mcg a day of uniphylline. When I first went onto it and then when the dosage was increased I felt so ill. It took longer to stop having side effects after the increase, but it seems that I've got used to it now and don't get them much any more. So it might be worth increasing more slowly if its something they want to try?

    Hope your admission gives you more control!

    Laura xxx

  • I'm on Bupivacaine Nebs at the minute. They're actually the anesthetic used in epidurals but my consultant is trialling them with me to see if they help control my asthma. It's a bit of a pain, and they taste minging, but I am really finding them helping. I'm hitting peak flows of 600-650 when I'm doing good.

    I've been on 2 different kinds of theophylline. Originally I was on Slo-Phyllin but they found out that I wasn't therapuetic on it (after 8 months....) and was put onto Uniphyllin 400 twice a day.

    I have home nebs aswell and am semi controlled at the minute. I still have regular serious attacks, but between attacks am quite well.

  • Thats interesting elephant, I hadnt heard of that before. I am making a list of things I have heard about and not yet tried so I can remember them when I see the consultant. Keeping everything crossed for a bed tomorrow now Ive got myself psyched up for it!

  • Good luck in costa sparkly, hope it helps!!!

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