Confusing advice

[Wheezycat]

Hi! Since my first experience ever of ending up in hospital for some days with an asthma attack 15 months ago, I have been really in good form. During this time I have had a chance to learn what affects me (smoke, fragrances, certain chemicals like oil paints, damp etc),and though I have learned what I don’t like it hasn’t been too bad, really. I have managed pretty well with Symbicort SMART regime. It seems to suit me. But then less than a week ago, I finally succumbed to a cold and was pretty shocked how fast my peakflow levels etc reduced, needing prednisolone and generally needing to up my game. My pf at worst has dropped to a about 60% of normal, and I now struggle to get it up again, though the deterioration is not continuing either. It has kind of plateaued. Just today I have been prescribed my second lot of prednisolone, a good thing as it slowly helps, but also frustrating as it really affects my sleep (there is only so much Nanny McPhee I can watch at 3am when sleep just isn’t going to happen).

But I had another experience I found somewhat confusing and frustrating. Our GP now belongs to one of these large groups. In so far you normally can get hold of someone when you need urgently it it works reasonably well, but you often don’t know the person at the other end of the line. So the other day I rang to ask for some advice how best to manage my SMART under these circumstances. And this gp told me something very different, not the usual SMART regime, which I found confusing. I decided in the end to use my own common sense so just for now I use a combo of hefty Symbicort in twice daily (allows me four spare doses if I need them) as well as salbutamol, which luckily I did have. This gp also said that it was unusual to have pred for more than 3 days. The asthma uk nurse had advised me before specifically to try to make sure I had a backup as many need 7-10 days.

I found all this confusing and a bit concerning. I feel sort of OK about it as I have now got a script for more pred, and I am using SMART slightly differently just now from how I usually go about it. I know many on here have unpleasant, unhelpful experiences, so it is not unusual, but what this gp said is not what it says on written advice. Has anyone else had this experience?

[lhorne4]

Hope you get better soon. My asthma was uncontrolled I had repeated infections and was on three to four nebulizer treatments a day. Along with singulair, albuterol, and advair. Several rounds of predizone. I was on symbicort and it made my asthma worse. Have you heard of Liposomal Vitamin C? You should go to the nbci website and look at this. I have been diagnosed with severe persistent asthma and I started this and wow I have done so much better. This has lessened my asthma symptoms giving my lungs a chance to heal. My peak meter flow has never been better.

[ChrissieMons]

Oh dear! Confusing advice is no help at all really! I think trusting your instincts is not a bad way to go here, but I should see a GP asap and get a consultant. Call the nurse at Asthma UK in the meantime to see if she can explain things to you.

[Wheezycat in reply to ChrissieMons]

Yes, I have seen a gp twice, and it has been straightened out. I am happier, and, I think turned a corner. As I have been pretty well for an extended period I think that is sufficient for now. I may call asthma uk nurses again. They tend to be brilliant I know, and it was a call to them that prompted that interaction.

[Hidden]

Not that this really answers your question, but might it be a good idea to report what happened to your usual GP to try and prevent this sort of thing from happening again. Did you get the name of the Doctor who gave you this advice?

[Wheezycat in reply to Hidden]

No, I don’t have his name, it wasn’t one I recognised and I don’t remember it. I do have a good asthma nurse, I decided to always aim for her, as my experiences have been mixed, even if it causes a wait. I will likely mention it to her. I also saw one of the good GPs yesterday, and briefly mentioned it. Apparently my asthma nurse lectures at the uni about asthma, so she is a good’un.

Anyway, I think I have turned a corner. I have been prescribed a second lot of pred, another 5 days, and that feels right for me, and I have upped taking 4xsymbicort, twice daily, which is the amount I was told to take with my last asthma attack, 15months ago. It is within the max 12 doses per day, and seems to work.

[Wheezycat]

Hi! Thank you for responding. I don’t have severe asthma, but about 15 months ago after several months of struggling to recover from a viral chest infection, and being under medicated (i didn’t realise myself that I was), I ended up in hospital. Though I don’t want a repeat it was good in so far that medics, me and others realised I had more of a problem than previously recognised. Symbicort hans been good for me as I have stayed well for 15 months. But then I got this cold etc. I will look at that vit C tablet. But I was more concerned about the confusing, contradictory advice. Still, it looks as if I may have turned a corner.

[Qunza]

Hi Wheezycat. I've only just joined this group and can't help with advice about your asthma and medication but I might have a solution to your insomnia (something I've struggled with for many years)!

Through my GP I've been put on an online therapy site and I'm finding it really working for me. It's relatively new and called Sleepio and you can join yourself but I think it's a bit pricey or ask your GP to refer you to Talking Therapies.

Most of it is based on Cognitive Behaviour which has never worked particularly well as the patient is lucky to get an hour a week with the therapist. This way, you do most of it online and begin by completing a sleep diary for the first two weeks and then I think they do a sleep deprivation system for a few days which helps get your body and sleep pattern back to where it belongs. There's loads of support on there too - even an animated professor and his dog who provides you with a thorough interactive session each week. There's a forum on there, reading material that might help and live chat with one of the Consultants at least once a week when you can ask questions.

It must be working as the number of people who are achieving success is pretty large now and I've also noticed they are offering a similar service for folk with mental health issues.

Just a (rather long) thought I wanted to share with you as I'm really impressed and benefitting from it. It's very accessible and never intrusive and I like that. Anyway, I'll leave it with you to have a look at and see if you feel it might help improve your sleep.

Best Wishes

[Wheezycat in reply to Qunza]

Thank you for your suggestion. I will check that site out. It is interesting to know of.

But my current issues is because of taking prednisolone. It is a well known side effect, but once you stop it goes away. I have another 5 days of it. As I know the cause, and as I am more concerned about being able to breathe, I also feel quite philosophical about it. It is just for a short period.

[Qunza in reply to Wheezycat]

Aah - that's good to hear and I hope you get you sleep pattern back very soon.

Best Wishes

Maria

[Wheezycat in reply to Qunza]

Thank you, Maria. I am still interested in that site. These resources are good to know of.

But I also find that as we get older our sleep pattern often changes. There is a theory that we are not really meant to sleep a solid 7-8 hours in one go, but rather, say, like cats, do it in shorter periods, and more than once in 24 hours. That I find really inconvenient, as it does not fit in with a north Europe work/life style pattern. But I think it may have some validity.

When I was younger I used to worry much more about not sleeping (I have also had insomniac periods). But these days though it can be tiring when it happens, it doesn’t generally wind me up. And I am good at catnapping. Much to the amusement of others.....but if it makes them smile, do I care?