Not being able to tolerate steroids without very debilitating side effects, I'm still looking for something to add to the Uniphyllin 400 & Ventolin (plus just one small dose of Seretide 50).
Asthma never bothers me through the night, and I'm fine until I start moving around too much ...more energetic housework, going upstairs, attempting a walk ...that sort of thing - so mostly exercise induced. (I can get wheezy and sinus problems with dust, pollen, and volatiles, plus stress though).
I keep looking at the other mast cell stabilisers such as Sodium Cromoglicate and Nedocromil Sodium inhalers (which I believe can have brand names of Intal and Tilade).
I'd like to at least try one - preferably the Cromoglicate - and despite hearing that these have been discontinued, I see them on the bnf.nice.org page listed on the right hand side bnf.nice.org.uk/treatment-s...
Does anyone use either of them?
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I started Intal a couple of weeks ago - my consultant did want to put me on Tilade but none of the pharmacists in the hospital had heard of it and he said it was so old it was virtually off the formulary now!
Places don’t tend to stock it as standard but it’s definitely not been discontinued!
I’m not certain yet but I think it’s starting to help, my lungs don’t seem quite as reactive to the very high grass pollen counts as they have been previously (and I’m still getting quite bad other hayfever symptoms so assume it must be the inhaler making a difference!)
The only thing I will say is you have to take it four times a day which can be a pain getting used to and it does taste pretty gross! 😂 although that’s quite a minor complaint really 😜
Thank you! Glad to hear that these drugs are still around.
They may not be enough on their own, but I think that some of us may find them at least helpful.
I don't mind using it four times daily if it means my life resembles normal again. I sit still for long hours to work, but used to love walking with the dog, trying to get fit with a water rowing machine, and general household/garden stuff. That all stopped this time last year!
I already take a colitis remission maintenance drug, and the Uniphyllin twice each day, so I'd only need to remember an extra two: one on rising, and another at my evening meal.
I'd like to try Intal - Tilade has nausea mentioned on the side effects, whereas Intal does not, and I've just had three months of nausea during the time I slowly increased the dose of Uniphyllin up to the 2x400mg I'm prescribed. (When I first got the dose increased from 200mg to 400mg, I took a whole tablet and spent the next three hours in bed feeling very sick and disorientated!) Just about tolerating it now.
The nurse had me trying Spiriva Respimat as an add-on, but it had the same bad side effects that I'd suddenly got after a few months of Braltus: nosebleeds, headaches and stomach, bone & muscle pain waist to ankles, so stopped using it last week.
She's due to ring me to see how I am with Spiriva, and arrange a blood test for the Uniphyllin level, so I'll ask her about the Intal. So glad to hear that at least one is still available, so thanks!
Yeah, I’ve found that I haven’t had a drug be the “wonder drug” for me yet, but each one added has provided a bit of extra benefit!
I’m used to taking it now (was already on various bits 3 times a day) but definitely found it helpful to set reminders while I got used to it.
That doesn’t sound fun with the uniphyllin! I don’t tend to suffer particularly badly with drug side effects but I’ve not noticed anything at all with the Intal
Sounds promising - thank you ...I just have to get some now!
Thanks to people here, I was able to see that for some people who do get the side effects with Uniphyllin, perseverance can help get through the side effects, and for some they do subside eventually - it did feel like seasickness along with terrible headaches and gastric upsets, but I did persevere, and spent weeks gradually working the doses up one at a time, bit by bit. This time, it seems it may be worth it. Think it's 3 months now, so fingers crossed.
I had no idea that I was so sensitive to drugs until I got asthma ...thank goodness the colitis drug works for me with no bad effects! I did get bad side effects with the huge doses of steroids when I had colitis, but was surprised to find the relatively low doses with asthma had the same unpleasant effect.
Glad you're happy and have direction. I use Intal and find it particularly helpful. It can take a few days of use to get it's full effects, so relax while that's happening, but it also takes the same kinda time frame for it to wear off so there is no panic if you miss a dose. It seems really gentle, innocuous was how a professor described Cromolyn to me.
Be careful there are no triggers in your home and workplace ie pet dander, DUST, MOLD, BACTERIA, VIRUS (those 4 cohabitate together!!!!!!!), rodent matter, pollen) they will all exacerbate breathing difficulties incredibly. Mold sends me to anaphylaxis in a great enough dose.
Glad to hear that Intal can be so useful, yet not 'dramatic'.
I stopped using Spiriva a week ago, and am only just seeing the final side effects start to go. (I could swear the asthma is marginally better without it!). Just using Ventolin & Uniphyllin now.
I do remember asking my GP about these two drugs (Intal and Tilade) this time last year, and she said they weren't effective enough ...but perhaps now that she and the nurse know that I still need an add-on to help, yet can't tolerate steroids much, they may agree to it this time.
I know that the same drug in milder form is in the Opticrom eye drops that I use, and that is very effective for sore and itchy eyes ...which I've often had since we moved here in '93! I'm using it for pollen problems just this past few weeks.
(I suspect my sensitivities began with the large amounts of plaster dust etc. in this house when we bought it - there was pinkish dust throughout the house and it took months to get rid of it).
We do have have plenty of things that will irritate: pollen, dust, and my work materials. We live outside town, and it seems much dustier than when we lived in town! I think it rises on warm town air and disperses on the semi rural areas around.
We have two dogs, but they're a non shedding breed. No rodents etc.
I am be careful with my work materials such as varnish etc., but airborne things are sometimes hard to deal with.
My asthma nurse has been a great help, and very patient with me getting such unpleasant side effects from drugs we've tried.
I'll ask her for some Intal when she 'phones to check on progress ...probably in the coming week.
Be wary of chemical exposures at work. They will increase the reactiveness of airways to other allergens. Ultimately whatever antigen you come across, mast cells degranulate and release inflammatory mediators. Intal, Opticrom etc are mast cell stabilizers.
Really look closely at whatever that dust is. If there's microbes in as building that require testing to see if it's hazardous or not, as DUST sample is collected. Dust, mold, bacteria, virus and even pollen particles all stick together. You don't want to be breathing that.
There's a company called Air Oasis who has a good system that takes particulate out of the air, you could try it. It relieves my breathing definitely.
Don't have any damp or wet around, use accelerated during and keep humidity low to help reduce microbial activity.
I work at home - artist - many of the things I've used for the past 40+ years have potential hazards and allergy properties.
Most of the substances that could cause allergies are only a problem when used over larger surface areas, and while still drying as they give off volatiles. But, I mostly use small amounts and on small areas each time.
The worst times being on initial all over lay-in of underpainting, and during the final varnishing in the garage (for which I use a mask), and then go into another room while it dries indoors (20 minutes max.)
I usually do a lay-in of a new painting late in the day, and close the door letting it dry overnight. Good ventilation and/or a Bionaire purifier are used whenever there's any hint of fumes.
These are all parts of my work that I can't change, but I am careful.
I only got asthma last summer, and prior to that it was the house dust and pollen, plus household cleaners that would affect me with eyes, sinus, throat and sometimes, a cough.
I haven't been very active since autumn 2015 due to U. Colitis and Sepsis, which took a very long time to recover from, and then within a few months developed asthma, which is taking some time time to find the right drugs to control.
As a result, housework and proper tidying has been greatly neglected. My husband does a fair bit, but nothing like as much gets done now.
If I can get the asthma better controlled, I may get to do some clearing and cleaning, and probably get a lot of dust removed! As things are for now, I can't even walk my dog without getting really out of breath, and energy is very low. I think the Uniphyllin has helped (hard to tell with the side effects from Spiriva just going) so if I can get the Intal, things may be a lot better.
Apart from when there's damp weather, there's no damp in the house, and no fusty smells either.
I found the Air Oasis, and it does look good - I only bought the Bionaire a month ago though, and bought one specifically with an on/off function ioniser in it (I had one with ioniser before and it screwed my computer inside up with dust) - this room is my studio, and the computer is a large desktop with a big screen for image editing & website management, so can't be in a separate room.
I probably don't switch the air purifier on as often as I should though ...hate the sound for all it's fairly quiet. I'll try to remember switching it on every time I leave the room!
I found the Air Oasis, and yes, it looks good. I only got the a
You've described chemical sensitivity to a tee. As you know dust and pollen affect you. Mold, bacteria and virus cohabitate with dust so when you show a reaction to the dust, there's bacteria and virus also present so it's equally possible your body is actually reacting to that rather than the actual dust mite litter.
I'm sorry you've not been well and therefore I must really recommend this. Don't do the cleaning yourself! You don't need a heightened exposure right now. You don't need to be the person stirring up the microbes, aerosolizing them and breathing it all in. I told this same thing to a friend with asthma, she did not listen. After she finished the clean she lost her sense of taste. That's a neurological impact!!!! The microbes messed with her brain function!!!! Just collect up anything valuable that would bother you to leave, take it out with you or put it in the room you stay in with the air purifier and have some cleaners in. It won't cost much, plenty of these companies and at this stage in your life you're better to take the help. The money is no good when you're gone and it's not worth compromising health. You're worth it, get help from others and you'll help them in the way they need. It's a good exchange. xxxx
Apart from the fact that my weariness and days of feeling unwell prevent me from producing as much work as I need to (and earning as much), we have a problem with the house since after the very hot summer last year that needs dealing with (I hope our insurance covers it!).
As such any plans for decorating, and the new carpet I'd planned had to be put on hold while we waited to see if things improved. I haven't done anything yet ...partly because I've been too weary to bother with it, but will soon.
As such, I did think of getting at least the downstairs cleaned properly, but realised it would likely be just as bad if we have work done, so thought not to waste money.
Still, you could be right, and I'd be better for it ...a nice clean and tidy environment is good for a sense of well being as well as removing the physical presence of dust etc.
I have too much tidying up to do upstairs before I'd let anyone even think of cleaning up there. Our bedroom is fine, as is the main bathroom, but I store all manner of work things in the spare rooms: canvases, packing boxes, props etc., and our younger son still has some of his things here too, even though he's been gone for some years now.
I do seem to get troubled with asthma more during the day, mostly with any exertion, and at this time of the evening when I seem to get wheezy. Once settled in bed, I'm fine, and asthma doesn't wake me.
I'll give some serious thought to the cleaning - for myself, it's more or less a no brainer, but my husband isn't keen on 'strangers' in the house! (Before he retired, I did have a cleaner for two hours each week for floors, bathrooms, windows etc. - she was great).
Thanks for the nudge ...too easy to ignore things when weary! X
I don’t know you or your husband but after reading your posts here and understanding how ill you are / have been, I would also say: get the cleaner! Pay someone who is a friend of a friend or a friend’s cleaner, if that helps your husband get over his awkwardness about the person being in your house. And stay out of the house while the cleaning is being done! A clean house is a healthy house for someone in your (or my daughter’s) shoes.
Thank you ...it does sound even more tempting now (I had a first and very unpleasant 'proper' asthma attack on Saturday with paramedics here for over 2 hours). Not feeling well enough to sort a cleaner out yet, but I will.
Husband has been doing so much since Saturday, I fear he'll be ill next, as he's had no more sleep than I have! As such, he may be more agreeable to the idea.
He did a lot of vacuuming, and dusted skirting boards etc., just today. Drop in the ocean I know, but he is trying.
Am so sorry to hear you had an attack. That sounds horrendous. Are you on different medication now? How are you feeling?
I didn’t mean -in case there it came across in that way- to point the finger at your husband for not cleaning enough! You mentioned he had retired so I thought he might actually appreciate the help, once it was in place. My in-laws only started having a cleaner once my MiL was really ill and it meant that they had one less thing to worry about what with everything else going on. But of course funds, preferences for having people in the house etc are so personal / unique.
Anyway, keep in touch here and tell us how things go.
Hell no - I didn't take it the wrong way ...you're all so very helpful.
My husband started doing more at home when he retired because I work at home, but he didn't like having a cleaner. Been OK until I got colitis and now asthma, and I just don't have the energy and time to keep on top of house stuff all the time now. It all mounts up though, and some things really do need more than the usual quick clean.
I'm lucky really because he cooks, and does some of the cleaning when he can, looks after the outside and garden too. I look after laundry, some vacuuming, and the general running of things, plus work.
Just need a bit more help now, so will definitely get something done about it.
No different medication yet - speaking to the nurse tomorrow. Husband just dropped off a letter & ECG print-out for the asthma nurse before I speak to her, so that it saves time.
I think I do need something extra as I can't walk far, so can't walk my dog or do much housework anyway. Before Saturday, I may have tried to push on a bit and try harder, but daren't now. Be much easier if I didn't get so many side effects from drugs!
So, we'll see what she says tomorrow - she's very good, and I do trust her. She understands me well too.
I was afraid to go to sleep last night, and woke up four times worried that if I slept it would happen again, but I did sleep and was fine until 10am. Bit light headed, but BP and breathing both OK for now. Just mostly sitting quietly.
I've had a number of different drugs - Montelukast was one that didn't really agree with me, and didn't make much difference either. It just sent me to sleep all day which was useless for work.
I had an asthma attack on Saturday, and it was bad.
I seem to have developed some sort of reflux too as I've been nauseous, sick, and had pain under the sternum and around my back ever since it happened. Seems to make things worse.
Just got Gaviscon today to see if it helps, but speak to the nurse on Wednesday.
Thanks - it was horrible and I hope it never happens again. No-one should have such terrifying experiences.
I think the reflux/acid ...whatever it is, is causing me more discomfort tonight than anything else. Muscles still painful after Saturday, but it also hurts to breathe due to discomfort/distension in my upper abdomen.
I'm in colitis remission too, so need to be mindful about that.
I can sit still to keep breathing calm, but also feeling nauseous and uncomfortable isn't nice. Can't eat anything much either - not that I'm hungry.
I'd have been able to see someone at the surgery right away this morning, but neither my nurse nor GP were there today, and I didn't have that helpful form filled in that Emma has until this afternoon. Couldn't raise the energy to start explaining it all to another doctor or nurse.
I'm not a good patient I'm afraid, and tend to trust certain professionals over others - my nurse and doctor know about that and why, so will help alleviate fears as much as they can.
Just hope I get a bit better by tomorrow. All I want is a comfortable night of sleep!
Js706 absolutely correct - 3 pharmacies didn't have it, but got it within 24 hours ...just had my first dose a couple of hours ago! Fingers crossed!
Spoke to the asthma nurse yesterday, and she wanted me to see the doctor right away and made an emergency appointment.
Just walking from the car park made me exhausted again, but the doctor was very nice ...laughed when she checked my PF and said 'that's rubbish'. Said, it'll take a while to get my breathing to settle down and energy to return, and asked me to double the Seretide 50 just until things improve as it'll be gentler on me than steroid tablets, plus she agreed that Intal could be a good idea! (She hadn't known quite what it was until I explained and she looked it up).
She gave me a prescription for it, and also some Lansoprazole 30 for the reflux that happened after the asthma attack. So far, the first of those tablets has worked and I've had a proper meal for the first time since last Friday ...so far, it's stayed put!
I see the asthma nurse on Wednesday unless ill beforehand.
I do feel a bit better today, and slept last night because I did reduce my night Uniphyllin dose, and didn't wake up in pain during the small hours! I was a bit out of breath going upstairs, but a dose of Ventolin gradually eased it. I'll use some Intal tonight and see how that is.
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