Sorry to be full of bad news, but I'm feeling a little down today.
As you may know, if you have been following the blog, I have been trying over the last few months to get off my seretide inhaler, as it contains steroids. Having failed too many times to count, I went through a very slow withdrawal, dropping puffs very slowly over a period of many months.
I got to the point where I was only taking every fourth puff of steroid, with no bad effects. I decided to take the quantum leap to being steroid free and stopped the inhaler altogether.
For a week, everything was great. I had no ill effects from stopping the steroid and my lungs felt strong.
Until a few days ago.
After a week off the steroids, I noticed a little tightness in my chest. I dismissed it at first and just used my blue salbutamol (non steroid) to open my airways and get relief.
The I found I was waking up with a rattle on my chest. It was the same weird rattle I used to get as a kid when my asthma was bad. Still I puffed on the blue inhaler and tried not to think about it.
It got very bad very quickly. I was soon taking the blue puffer every 4 hours, day and night, I was waking up wheezy. I went to visit my mom and on the journey home, could hardly breathe. I could also taste blood when I coughed. it was getting scary. Still, I dug my heels in. I was desperate to remain steroid-free.
Last night, I went to bed and took the blue puff before bed at 10:00. I woke up at 1:00 a.m. all wheezy and rattling. I took 2 more puffs and tried to get back to sleep, but I kept coughing. I woke again at 4:45 gasping for breath.
Enough was enough.
I gave in and took the steroid inhaler.
"Magically" my asthma symptoms vanished instantly. My brain may want to minimise steroid use, but it seems that my lungs crave them.
I am shattered and exhausted after having broken sleep for the last few nights.
I am doubtful if I will ever manage to get off the steroid inhaler completely. Maybe the best I can hope for is to drop it down to the minimum level I need to survive, maybe one in four puffs again.
This is like a kick in the gut to me. I hate being so dependent on steroids but I need them to breathe, so what's a girl to do?
Anyway, after that miserable tale, here is some good news. My skin is actually doing well! I will post some photos when I get the chance. My face is clearing nicely from the last flare.
Also, please check out these AMAZING healing photos from a lady who healed after 9 months of steroid withdrawal (I'm so jealous!), luckily, she didn't have many years of steroid cream use, so was able to withdraw relatively easily. The pictures are wonderful.
Check them out on this site:
http://klinestopicalsteroidhell.blogspot.co.uk/2013/04/sweet-nina-is-healed.html?showComment=1364894821088#c4849833140608082609
9 comments:
Louise do u think the inhaler is prolonging our healing? Kline wheezes bad now, ne'er did before tsa....and he takes albutarol now but I am so Afraid one day he will need a steroid inhaler? What do u think? So sorry your lungs like that crap so much! Xxoo love u!!!
Your not our healing.....
Hi Loren,
Its hard to say. Dr Rap seems to think we should stop all steroids if we can, but Dr Fukaya says that inhalers don't affect TSW.
Remember I used the creams for over 15 years, so I guess I'm gonna take longer to heal than most.
Its difficult for sure, as I am scared it means I won't heal completely. I guess I will just have to wait and see.
Hi Louise , I am sorry about your inhaler. I have been off mine for 3.5 months now However it is just starting to be springtime here in Canada and I fear that when the pollen starts to fly I may have to resume the steroid puffer. This may just be the way it is. I don't believe a low dose should affect us as it is very localized deposition...there will always be a tiny amount that makes it into the systemic circulation. I have had great luck with singulair(montelucast) instead of the inhaled steroid thus far...have you trailed singulair yet? :)
Thanks Rick.
I spoke to the asthma nurse about singular, but she seemed reluctant to prescribe it.
Will take the steroid as needed, but I'm going to try and use it as little as possible. Actually, I noticed that there is a lower dose seretide, so I may ask the nurse if I can try that. I also rinse my mouth after a puff, so that the medication only goes where it is needed.
Hello Louise:
Here is my experience:
I had ever suffered from "allergic rhinitis" since the puberty. And doctor prescribed with the steroid nasal spray.again and again, I found I can't breathe easily without the steroid nasal spray. During the puberty, every time,I suffered from nasal congestion, I would apply the spray to my nostrils until graduation from senior high school. Last year, I graduated from university, although I didn't use spray for a long time, I always suffer from nasal congestion. It seems to be the addiction. And the nasal congestion always cause the headache. After knowing the disadvantage from the website,Itsan, I decided not to see the doctor as the congestion and headache happened, and I chose to take a rest for a few days. Magically, as I overcame the symptoms, the situation of congestion and headache seems to ease off!!!
BTW, at that time, the headache let me vomit and bedridden and freezing.But I am sure that it wasn't the flu!!! soon or later I will create the blog and post the more detail.
Louise
I'm so sorry you are having such a tough time with your lungs. Maybe it's best you complete the topical withdrawals and then tackle the inhalers at a separate time. My dad used a steroid inhaler from childhood through his mid thirties. He slowly weened himself off of it by making diet changes and taking a couple of herbs, I have to ask him what. I think he drank slippery elm tea a couple times a day and possibly Red Clover to help his circulation. I know you have probably tried a lot of things too, so that info may not help you. I'm excited about the Children's Book! Hang in there.
HP
www.eczemancipated.com
Hello...I am trying to come off the seretide too...I am having the same symptoms as you and its awful. I have been on this inhaler for so many years that I have become dependant. I actually believe I never had asthma and that the inhalers have given me astma symptoms all my life. X
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