Sodium cromoglycate

[Stephxmx]

I have just received a letter from my consultant saying they are going to ask my GP to start me on sodium cromoglycate inhaler and uniphyllin. I am currently in bricanyl syringe driver due to being taken off uniphyllin 18 months ago as my stomach no longer digests and I vomit tablets up. This consultant hasn’t obviously read my notes. I’ve left numerous voicemails with their secretary and had no call back. I’ve never had sodium cromoglycate and was wondering if anyone has had it and your reviews on it please. I’ve read that it’s for allergy driven asthma which mine isn’t. I don’t have allergies to nothing. Mine is because o only have one lung and my heart is on the wrong side. Thank you

[Js706]

Sorry to hear that you're having problems at the moment getting treatment sorted!

I've been on a sodium cromoglicate inhaler for the last year and a bit. I've not had any side effects other than it tasting pretty gross compared to my other inhalers! I have allergy driven asthma and I wouldn't say it was a miracle improvement but it did help to improve things a decent amount. The only thing worth mentioning though is there have been massive supply issues for months that are expected to go on until at least November I think - so it may be worth ringing your pharmacy once its prescribed to check they can get hold of it again before you go to collect it.

With the uniphyllin - are you able to take liquid forms of medications? I don't know about uniphyllin specifically but think there are liquid versions of some brands of theophylline available, so that could be a possibility if you're able to take those?

[Stephxmx in reply to Js706]

I have all my medication as liquids like steroids and antibiotics that I’m always on, they did tell me there’s no liquid form available for uniphyllin and that’s why they started me on the bricanyl pump. This new consultant now wants me off the pump as they said there is no scientific evidence to prove it works, even though I haven’t had lots of flair ups since being on it. I was having at leave 8 hospital admissions a year and This year ive only had 3. I read a bit about the inhaler but it does say allergy driven asthma. My allergy test was fine. I did also read about them not having any till mid November. I just constantly feel like I have to fight with the new consultant

[Js706 in reply to Stephxmx]

Ah that's really annoying. I do remember one of the brands of theophylline was stopped recently so it may have been that one that had a liquid form - but it might be worth asking your GP if a different brand has a liquid version?

I know what you mean about feeling like you have to fight for things I hope the secretary gets back to you soon! I guess the inhaler could be worth trying in the meantime? Hopefully it might still help a bit!

[Stephxmx in reply to Js706]

I will do thanks, hoping I get some joy from the secretary tomorrow 🤞🏼Thank you for all your help

[Poobah]

Hi Stephxmx. I understand your frustration. I looked up the use of sodium cromoglycate for the treatment of intrinsic asthma and the research shows that this medication is better for those with extrinsic asthma (allergy led). So it does appear to be puzzling why the new consultant wants to try this inhaler when research gives no clear green light for intrinsic asthma.

As for uniphyllin, it is available in liquid form in some countries. Probably best to have a chat with your pharmacist and then talk to your GP so that they can prescribe the liquid if it's available in the UK specifically for the treatment of asthma.

Did the consultant's letter follow an appointment or did it come out of the blue? If it did follow an appointment then it really is unacceptable not to discuss the new treatment with you so that you understand the thinking behind it and to give you the opportunity to explain any probable hurdles.

I'm wondering if you spoke to the hospital switchboard that they could put you through to the respiratory clinic so you could talk with one of the clinic nurses instead of trying to chase the secretary? I've had to telephone my hospital respiratory team in the past and always contact the nurses, who are very helpful. You may even find a different contact number by Googling details of the hospital services.

All the best, I hope you find a resolution.

[Stephxmx in reply to Poobah]

Thank you for your reply. The respiratory team I have only aloe us to leave a voicemail and they get back to you. I left a voicemail on Friday and Monday. I got an appointment through for the 19th February. It’s frustrating the fact that a 5 minute phone call to myself before typing this letter up would have saved all this time of trying to contact them. I did enquiry when they stopped the uniphyllin in hospital about a liquid form but they said they don’t have it in the UK as there was a suppository one too (not the best thing) but the UK don’t have that either.

It has really frustrated me that the letter last week said no allergy’s from the blood test but want me to start the new inhaler. I am happy at the moment with the medication I’m on as it’s made me more stable that what I’ve been in the past, but they are try to change the steroids I’m always on 20mg to none and take me off the bricanyl syringe driver as they say there is no scientific evidence it work 😩😩

[Poobah in reply to Stephxmx]

Sometimes it appears to us patients that when doctors say something does or doesn't work they are talking about anything other than our experience. We say, "but it works for me. Look I have less hospital admissions and feel better than I did." I've had some challenging conversations over the years in order to explain MY experience, be it good or bad. Even when I think we've agreed a way forward, I have received a letter saying something completely different. Fortunately, I was able to telephone and discuss the residual problems.

I find some consultants are better at listening and digesting information from patients than others. But this doesn't help you right now. I'd be quite happy to phone them everyday until they responded. And if, after a week, I would leave a message explaining that I will now make a complaint to PALS about their inaction. You should be able to speak to PALS and details about their contact details will be on the hospital website. Follow up any verbal complaint in writing.

theguardian.com/healthcare-...

[Stephxmx in reply to Poobah]

Thank you for your reply. I found an email address so I have emailed them too hopefully I will get a response now that I have evidence of contacting them. If I have no joy I will go to pals.

[Triobolium]

When I started seeing a consultant in my thirties he took me off the sodium cromoglicate because it was for allergic asthma. I am on Seretide 125 and Montolutekast