Inhalers stopped until next year

[healthmu]

My ventolin has been stopped until next year. I've been getting inhalers regularly all year and they have advised that I up my Kelhale - which when I do, I need more ventolin because it irritates me, they know this but now my ventolin has been stopped until january next year.

I don't know what to do because I am running low and I need to order more.

I have been in a state of stress for many years due to them stopping inhalers for both me and my son randomly, and the stress exacerbates my asthma. I can't live through winter without an inhaler....

[hilary39]

Did you get this figured out?? This sounds unsafe and stressful. Can you keep bugging your GP or call the asthma hotline?

[d2read]

I'm in the US, and am clueless about how to work the UK system, but agree with hilary39 -- this sounds potentially unsafe as well as stressful. It also doesn't make sense. If it's a matter of you having used up the Ventolin that should have lasted through the end of the year too quickly -- that's a problem that should have been flagged by your physicians and dealt with before you reached this point. But since neither Ventolin or Kelhale are steroid inhalers (I understand both are beta agonists, which work on the smooth muscle that we asthmatics have trouble with), I would think it wouldn't be potentially life-threatening or anything -- BUT I'M NOT A PHYSICIAN!

Anytime there is a problem like this, a disconnection between what you need to manage your asthma and the support you are getting from your physician, specialists (consultants) and other medical support staff, like nurse-practitioners or respiratory therapists, it is up to YOU as the patient to be persistent until you get the information you need. Stay calm, be polite, but very firm. Make notes of the names and times and exactly what you are told by each person you speak to about your situation. And work the system -- go from the person you interact with most to the next, then the next, and on, until you get what you need. Each time, ask specifically what they are going to do to address your current problem NOW ... WHY ... and HOW. If they insist that you revert to a treatment that isn't effective for you, or has side effects you can't tolerate, tell them that, make a note of what they say in response and what their alternative is as a result.

That being said, I'm going to tell you a personal story. When I was a child, they put me on one of the first "rescue" inhalers developed for kids. Of course I carried it with me everywhere, using it throughout the day, and often waking during the night to use it. I thought it helped a lot. My parents loved that there was something that could help before symptoms got so bad I had to be rushed to the emergency department. And then they discovered that the drug was causing substantial heart damage, and they immediately stopped its use.

And I went through withdrawal -- laying on the cool tile of the bathroom floor in between bouts of horrible vomiting and diarrhea, crying because it felt like my skin was being eaten off by insects, unable to sleep or eat. For a WEEK! And all my parents could do was try to keep me comfortable -- or as comfortable as possible. And the entire time, I felt as though I was going to stop breathing any second. Wheezing, coughing as my body was insisting I give it more of the drug it was accustomed to. It was one of the most horrific experiences of my life.

Why am I telling you this? Because at other times in my life since I have found myself dependent on one of my medications -- NOT addicted, the way I was physically to that inhaler, but psychologically. Because the medication seemed to make a pivotal difference in controlling my symptoms and allowing me to stay out of the emergency rooms. And each time, my physicians have either been concerned because my symptoms weren't being controlled, or were worsening, or they observed something else, and they moved me off the medication onto a different medication.

My point to you is that if they are trying to get you off of the Ventolin because they are concerned about a dependence on it, at least give their concern a fair hearing. It's always upsetting to hear, but it's worth it to avoid ending up where I was as a child.

Good luck. Please write back and let us know how you do.

[healthmu]

Hi, just to say the Kelhale is my steriod inhaler and my docs know I'm sensitive to it and need to take ventolin with it. I've managed to buy some ventolin privately and I still haven't gone to my doc yet due to the stress of having to beg for medication, the receptionists really treat me poorly. But this problem has been going on a long time. My son gets a free prescription and he often gets his inhalers stopped too. In fact, I've had to give my ventolin to him because they won't give him one giving me a whole host of excuses: that he hasn't had his asthma review, that he is too old to have me get his medication (he was 15) and needed to order it himself, that he needed photographic ID (again, he's 15). So I just gave him mine when I could. Its been many years like this and now with covid I'm just at my wits end with it. 😢 I will talk to them this week and get back to you guys... thanks for your support.

[d2read]

Thinking of you -- and hoping you are doing better. I know we don't always have an alternative to the physician we see. But you can ask for what you need of the doctor, or (are you in the US?) talk to your insurance company or primary care physician.

In the US, for example, if you are receiving Medicaid (it sounds like your son might qualify for the children's version) then he is entitled to assistance from a social worker to help him get the medications he needs.

(You also should be really careful about giving him anything prescribed for you. While steroid inhalers are largely safe, they can have some side effects, and in a growing teenager, there might be other factors you are unaware of -- not to mention that it puts you in danger. What if you have a bad asthma attack and have to go into the hospital or are unable to care for him because you are too sick for weeks?)