|
Spiriva
Jun 1, 2014 10:00:55 GMT -5
Post by barb7330 on Jun 1, 2014 10:00:55 GMT -5
I think I read that some of you have had problems with spiriva. I have been feeling terrible for 3 weeks. nausea, hearburn chest and throat feel tight. Dr. changed by stomach pill a week ago. No better. Was back last Thursday and she sent me for chest x-ray, ECG and I go for upper GI tests the 24th of June. I mentioned to her ask if my inhalers could be a problem, my spiriva she said not likely but you can go off it if you want. I said well I should have something other then symbicort. Anyway I don't think my Dr. is very educated on COPD. I haven't used any spiriva since last Thursday and all my problems seem to have got better. I am going to call my respirologist tomorrow and see what he thinks.
|
|
|
Post by sandy07 on Jun 1, 2014 10:12:48 GMT -5
The Spiriva made my chest real heavy and tight a few minutes after using it. This Tudorza has started to do the same.
What are you using instead? Atrovent is what I use but it's 4-6 times/day.
I never thought the Symbicort would be a problem but I'm starting to wonder about it as well. It seems the longer we deal with this the more drugs we need but the fewer drugs there are to help.
If you're wondering about the doctor , check with the pharmacist about what's available. then take the list with you to the doctor with the pharmacist's comments.
|
|
|
Spiriva
Jun 1, 2014 10:20:42 GMT -5
Post by barb7330 on Jun 1, 2014 10:20:42 GMT -5
Thanks Sandy. The only thing I'm using now is symbicort and ventolin if needed. Will check with pharmacist and hopefully will get some answers from my respirologist. Will let you know what he says....
|
|
|
Post by judi on Jun 1, 2014 11:32:44 GMT -5
I have had the same problem with tightness with Spiriva, I still can't figure out if its airway tightening or the muscles in my chest wall. I have had stomach problems as well and as far as we can determine some of that may have been the Spiriva and some gastric irritation from swallowing inhaled steroid (I do use a spacer). I agree with Sandy that Symbicort can cause a little tightness too at times.
I wouldn't recommend this to anyone without doctor supervision because I don't know your condition and it might be harmful to some people but here is what I have done.
I think the problem is that some of us may be what they call 'slow metabolizers' and we do not clear the med at an average rate or some people just get sensitized after taking them for so long.
I use Symbicort and Spiriva how I need it. I only have a 80/4.5 mg Symbicort which is the asthma dose but it is still too much. I start to get an upper respiratory infection, sinus infection or a fever if I use a full dose. So I generally use one puff AM for 2-4 of days and then 2 puffs AM for 1-2 days. I usually use one puff at night. I just play it by ear depending on how I am breathing and how the side effects are doing and try to find the just right "goldilocks dose". Pulmo said this was not ideal but ok.
Spiriva can inhibit peristalsis in your stomach and just kind of slow things down. I know someone whose gastro doc told her inhalers can cause reflux because they relax the esophageal sphincter the same as they do airways which makes sense. I take Zantac (per doctor) when I need it but haven't lately. I wish I could take Spiriva a little more but I have been using it every 4 or 5 days. The half life on it is around 5 days which means it takes that long for it to totally leave your system. I just tried every other day again which was too much for me so guess I will try every 3 days and then every 4 days or something. My doctor wouldn't give me any Turdoza because he said I would have the same problem but I may ask him again and see if he has a sample. There is someone on one of the US forums who uses Spiriva Mon/Wed/Fri as instructed by her doctor and that works fine for her. Using Spiriva that seldom doesn't give me very good bronchodilation for the last couple of days but it keeps any congestion I get pretty much gone. I don't have much mucus and that probably would not work on someone with a lot.
Something else which has helped my stomach tremendously is that I started drinking good quality organic 2% milk. I put about 1/2 milk in my morning coffee so I'm not putting coffee and inhaled steroid in there at the same time. I think the fat coats and sooths it and I am hoping my cholesterol doesn't go through the roof. I hadn't drunk milk for years and thought I had developed lactose intolerance in my old age but the organic stuff is doesn't bother me. I started the milk and salmon because I have so many problems with inflammation and I thought the fatty acids might help me grow healthier epithelium (internal skin), I think they have, the airway inflammation I get from inhaled steroids seems to be better too. Not cured but better.
I believe I would breathe better if I could take my meds normally but I can't and this is the best I have done for about 3 years so will continue unless pulmo comes up with a better solution. I do turn my O2 down quite often at night because my sats are higher than they were before I started this. I wish there was a better solution but I don't know of any.
Sandy I wanted to ask you if you also got foot cramps from Symbicort? I just wondered if there was any relationship between airway tightening and muscle cramps.
judi
|
|
|
Spiriva
Jun 1, 2014 13:04:03 GMT -5
Post by David on Jun 1, 2014 13:04:03 GMT -5
I can say I get foot cramps and hand cramps when I use Symbicort. I stop the cramps stop. I start the cramps start. Generally takes about 3 days for the cramps to start.
I don't like the powdered Spririva. It doesn't seem to do anything. I use the liquid Spiriva (Ipratropium Bromide) in a nebulizer. I use Albuterol Sulfate and Ipratropium Bromide in a nebulizer every 4 hours.
I still use Symbicort off and on.
|
|
|
Post by sandy07 on Jun 3, 2014 10:27:44 GMT -5
David..... Iptrotropium bromide is Atrovent. Tiotropium bromide is Spiriva. They basically do the same thing as anti-cholinergic bronchodilators. Atrovent is 4+ times a day. Spiriva is once/day.
If the Spiriva(Atrovent) didn't do anything it was likely because it didn't go deep enough. If you are nebbing it will go deeper.
My next test is for Onbrez. It may be an add-on. I need to check.
It's so hard to find drugs that work for us. Then if they do they only work for a few years and we're searching again. Luckily, my husband has a drug plan and I can experiment. Good luck.
|
|
|
Spiriva
Jun 3, 2014 21:16:33 GMT -5
Post by David on Jun 3, 2014 21:16:33 GMT -5
Thanks Sandy, I did Spiriva for 6 years. It seemed like the last couple of years it wasn't as effective.
|
|
|
Post by barb7330 on Jun 4, 2014 7:06:51 GMT -5
Yes because I couldn't reach my Dr. till next Tuesday I decided to try spiriva again. I have been using it before supper instead of morning with Symbicort. Only used it Monday and Tuesday so will continue to see if it affects me the same way after a couple of weeks.
|
|
|
Spiriva
Jun 14, 2014 22:28:26 GMT -5
Post by ronwtor on Jun 14, 2014 22:28:26 GMT -5
barb. there is new prod. bye novartis number1 seller inuk ihave used it 6months its called. seebri50mcg spireva had med. trials it lasted only 18hrs not24hrs.as it states
|
|
|
Spiriva
Jun 15, 2014 11:23:15 GMT -5
Post by barb7330 on Jun 15, 2014 11:23:15 GMT -5
Thanks Ron for the info. I wonder if it's covered under our provincial health care or is it even in Canada.
|
|
|
Spiriva
Jun 16, 2014 8:42:24 GMT -5
Post by Deborah on Jun 16, 2014 8:42:24 GMT -5
If he's referring to seebrei it is available in Canada. My respirologist switched me over to it in February. I think there is a separate thread on seebrezi.
Good luck!
|
|
|
Post by barb7330 on Jun 16, 2014 10:49:09 GMT -5
Thanks for info Deborah. I started to use my spiriva at night instead of morning. Seemed to work for a few days and then the nausea started again so haven't used any spiriva since Saturday. Just using symbicort and oxygen when needed.Will talk to my Dr. at next appt and see what she thinks.
|
|
|
Spiriva
Jul 17, 2014 6:48:43 GMT -5
Post by ronwin on Jul 17, 2014 6:48:43 GMT -5
they did clin. trials on spiriva proven not to last 24 hrs it only lasted 18.i use seebri breezhaler by novartis
|
|
|
Post by ronwin on Jul 17, 2014 7:09:41 GMT -5
ihave moved from tor to new brunswick i known jackie and phil cap.ihad a tims last year ihr. drive from me we met at truo.n.s. i live in shediac n.b.
|
|
|
Spiriva
Jul 17, 2014 7:27:55 GMT -5
Post by hugahusky on Jul 17, 2014 7:27:55 GMT -5
Welcome to the Maritimes, Ron.
i was on Spiriva for a couple of years but found it did not last the 24 hours and I was waking up in the morning gasping for breath. I then started nebulizers 4 times a day using Ipratropium and ventolin. It seemed to work well but was inconvenient when I was out, even with the portable nebulizer. I felt like I was always watching the clock. When Tudorza was approved in Canada, I began using it in January and so far have not had any problems.
|
|
|
Spiriva
Jul 17, 2014 7:41:24 GMT -5
Post by jim on Jul 17, 2014 7:41:24 GMT -5
Thanks for the information Ron, I take Spiriva in the morning and Symbicort at night and some nights I wake up short of breath and have to use Brycanyl.
I hope you have a good day.
|
|
|
Post by shelley on Jul 17, 2014 8:27:06 GMT -5
Interesting how we are respond differently to meds and I think that concurs with all the research which has found how very different COPD patients are, which of course, leads to confusion not only in the prescribing of meds but also in the research to find a cure. It is such a can of worms. Meds are more art than science. If it works for you and your doctors concur, off or on label, go for it!
|
|
|
Spiriva
Jul 17, 2014 8:39:05 GMT -5
Post by skate4life on Jul 17, 2014 8:39:05 GMT -5
Also interesting how these meds that were touted to last 24 hrs never lived up to their hype! At first the pulmy docs didn't believe patients, but now they do. The problem is what meds to use until the next maintenance dose is due without running into the competitive receptor site and having to wait greater than 2 hours......
|
|
|
Post by mary57 on Jul 17, 2014 11:33:17 GMT -5
Ron thanks for the info, I thought you had moved east. You did a lot of trials, I'm sure Westpark will miss you, I too am a northwest tor dweller.
|
|
|
Spiriva
Jul 17, 2014 14:01:19 GMT -5
Post by ronwtor on Jul 17, 2014 14:01:19 GMT -5
n.b. very diff. no rehab.you are allowed 30 pred. true fig. on copd 472 u.k.copd 28mill.americ. 1.85mill can.
|
|
|
Post by sandy07 on Jul 18, 2014 8:34:16 GMT -5
I'm done with the Spiriva years ago...switched to Atrovent...now taking Tudorza. Things are great so far. Now I'm getting rid of Symbicort. I'm trying Onbrez and after 3 days I feel it's helping more than the Symbicort. I have another drug in line if the Onbrez doesn't work.
When I told the doctor Symbicort wasn't working too well anymore he told me just to USE more, much as I wanted. Well, I did, and it got me by but I still didn't feel good. I think I'll be okay now with these two new ones.
What I'd like the drug companies to tell us is if their drug is meant for severe...very severe...etc. or if it matters. Maybe very severe would just take more.
Ron....I don't understand your shorthand. Sorry
|
|
|
Post by shelley on Jul 19, 2014 11:24:57 GMT -5
Sorry Ron, I didn't understand your shorthand either. Please elaborate, if possible.
Sandy, we've discussed the issues with Spiriva and I tried going back to Atrovent but it didn't seem to make it any better and then I tried Turdoza. Within 3 days both times, I was severely short of breath.
I'm still using Symbicort which has both a bronchodilator and a corticosteroid and I was using Oxese (the bronchodilotor in Symbicort) as breakthrough once or twice a day, as per the instructions from my respirologist. When Onbrez came out, I did give it a try to take the place of Oxese as Onbrez is a broncodiltor ONLY. For a while it worked but then I found I was using Onbrez around noon and then Oxese around 6. I take Symbicort when I wake and just before bed. I also take 600mg of Theophylline per day and have been for as long as I can remember. I cut back the Onbrez totally and went back to just Oxese for breakthrough and got more consistent relief.
Now, before everyone gets all worried about using Oxese as well as Symbicort, as was mentioned, these meds are just not standing up to their "time active" promises and my respirologist fortunately has figured that out. In addition, when Oxese and many other puffers were tested, they were tested at much high usages than what is on the box. So, yep, I'm using it off label with my doctor's approval. As I said, at this point, it's more art than science.
Once again this all speaks of how very different we all are and I don't think the pharmas are really testing for efficacy against the different Gold Stages with maybe a couple of exceptions. However, to that point, research is finally being done on receptors and our individuality, to try and you might say, prescribe a cocktail that is directly formulated for each individual based on our personal chemical make up. May not help me at this point, but for those who are in the mild to moderate stages at this point, I believe, they will, with even the knowledge that we have now, probably live a normal lifespan with only moderate progression and in all probability will live to either see the discovery of either a cure or something that halts this disease right in its track.
My current question is whether the drug newly discovered for IPF would be of any value to those, like myself, who have strictly emphysema, which is very similar to IPF. In addition, they are testing how the anti-inflammatory properties of ibuprofen act against lung function. This is something I have first hand experience with. At least 5 years ago, I told my respirologist that every time I took either ibuprofen or naproxen for a muscle ache of some sort, my SATS went up quite nicely. She told me I was loopy. Well......now they're testing that same thing. The results may in fact show that I'm loopy but, you never know. It wouldn't be the first time that a med was discovered hiding within a far simpler and different product.
|
|
|
Post by purple on Jul 26, 2014 8:44:43 GMT -5
Spiriva was prescribed along with Symbicort in March when I had the second of the two 'unable to breathe' events which stopped my denial and got me to accept the copd diagnosis, so I tried Spirvia first and after a week the headache and coughing got so bad I stopped taking it and it did nothing for my breathing anyway and I still needed Ventolin every 3-4 hours. I gave myself a week to get it out of my system then tried Symbicort and was astonished that I went without Ventolin for the whole night so I used it in the morning and felt like a new person no Ventolin required and I was breathing better. My GP doctor gave me a trial of seebri but after the Spiriva I was reluctannt to try it. After my first visit to my respirologist she said that I would probably have the same result as Spiriva so to just continue with the Symbicort. I asked if there was something similar that wasn't powder and she gave me Zenhale as a trial at a lower dose to try and it seems to be working well so far.
|
|
|
Post by sandy07 on Jul 27, 2014 11:44:43 GMT -5
Hi Purple
It quite often takes a few weeks before Spiriva kicks in. You wouldn't have needed to wait before using Symbicort as they are 2 different types of drugs and are usually used together.I used them together for years. It really helps to get familiar with the different kinds of drugs. Such as the steroids and non steroids etc. On the COPD CANADA Mainpage is a link to drugs. I've printed it off for myself and often refer to it. I've just changed my inhalers myself. Spiriva(and its' alternate Atrovent) and Symbicort aren't working for me anymore. You'll get more comfortable with different drugs as you read about them from folks here. My doctor is not surprised anymore when I walk in and ask for a drug he hasn't heard of yet. I also make sure to let him know how it's working. In the beginning the drugs may be different, as to doses etc. then change as time goes by. I hope you find the right mix for YOU.
|
|
|
Post by helen on Aug 3, 2014 11:52:53 GMT -5
Well, yes it is different for everyone. I have been on Symbicort only, for many years until about 9 months ago. Lung spec. prescribed Spiriva (Handyhaler 18 ug) once a day before taking Symbicort, because Spiriva widens the upper airways (bronchiai? I'm a Dutchy and don't know the correct English word for it) and Symbicort widens the lungs as well as reducing inflammation. The Spiriva worked overnight. No heavy legs anymore when getting out of bed, but the side-effect was that I slept less and less hours per night. So I started taking it once every two days, which was better. Told my specialist and he advised me to take Spiriva Respimat, 4 ug on the other day. Now I tend to forget to take the Symbicort in the mornings, but it does not seem to have any affect on my health, so I try not to fuss about it. My body seems to be able to cope without it, strange isn't it?
|
|
|
Spiriva
Aug 3, 2014 14:25:09 GMT -5
jim likes this
Post by Deborah on Aug 3, 2014 14:25:09 GMT -5
Very interesting and so true that we are all different, as you and Shelley and Sandy and others have all said. Do you mind me asking what stage you are at? I am at the mild stage and I am interested in exploring different options with the OK of my respirologist.
|
|
|
Post by helen on Aug 3, 2014 17:45:03 GMT -5
I'm not quiete sure, but I think it is Gold II.
|
|
|
Spiriva
Aug 3, 2014 21:26:24 GMT -5
Post by sandy07 on Aug 3, 2014 21:26:24 GMT -5
Hi Helen. Spiriva usually doesn't work right away. I think it says not to expect it to fully work for up to 2 weeks. So, I'm surprised it worked overnight for you. The opposite is also true....it doesn't leave your body very quickly either, which is why you don't seem to miss it on the days you don't take it. That doesn't explain why missing the Symbicort doesn't bother you. Crazy. We are all so very different. It's quite annoying really. It's always great to find something that works.
|
|
|
Post by helen on Aug 4, 2014 6:20:14 GMT -5
I think it just shows that we are all unique persons.
And I also think that no one knows your body like you do. So, if my body says I don't like this, I will try something else.
Something may work well for most people, but I am not "most people".
Just my opinion and certainly no offence meant to anyone else.
|
|
|
Post by sandy07 on Aug 5, 2014 11:08:56 GMT -5
We need to get the health professionals educated about our "differences". They always insist on nebulizing me when I go to the ER with an exacerbation. And every time it doesn't help. They are never very happy with me but I've been there often enough that they ask me now. I usually just need a doctor to write a prescription. I suppose there's a standard they have to follow.
To the new folks out there: it takes a while to figure these things out. You can get advice from us here and then you can try them and hopefully one will work. BTW..that's not just for COPD. We offer our opinions on the color of your socks too. image002 or how to shower with oxygen.
I shouldn't call them opinions.....let's call them ideas and suggestions.
|
|