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Post by Deborah on May 23, 2012 0:55:01 GMT -5
Very funny, Chris! Made me smile.
My doctor put me on the Singulair substitute montelukast after being on Singulaire for only a month. We don't talk much about my drugs and alternatives and what they are supposed to do and what are the side effects and so on. I am waiting to see the specialist and when I do, I will be going over all my meds (and vitamins) with her/him.
Thanks for the great discussion on this thread - some very interesting points for thought are coming out for me, at least.
Deborah
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Post by sandy07 on May 23, 2012 9:02:43 GMT -5
Has it really been a month already? I guess so.
Well, in short. ;D...I feel better without Spiriva than I did with it. On Spiriva I never knew when I sucked the stuff in if I'd be having a good day or a bad day. The last 6 mos. or so that I took it I was bad most of the time. I could feel it hit my lungs and lock them up. Now, with the Atrovent, I know I'm going to be good most of the time. The one thing that hasn't changed is that my breathing gets bad in the late afternoon and stays that way. I don't know why. Taking more Atrovent doesn't help. But it was that way on Spiriva as well.
I'm hoping something new will come out soon. It's a pain having to take Atrovent 4 times a day. It means I need to take all my inhalers with me. It just adds to the weight of my purse.
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Post by annabob on May 23, 2012 9:42:11 GMT -5
I use atrovent as well as spiriva. Still on Ventolin and advair. As I said earlier I will be seeing my new respirologist next week. I will have a discussion with her and see what her views are for me. I know some medications work differently on some people. Maybe what works good for me might not work well for others.
Sandy I as well have a bad time breathing late every day. Usually starts about 4pm. Dont know why.
I find it odd that I can have a couple pf good days followed by a couple of bad days. I thing the weather has something to do with it. If I could figure all this out I would be rich.
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Post by sandy07 on May 23, 2012 10:17:32 GMT -5
Ann....like I said when I talked to you.....I'm pretty sure you shouldn't be taking Spiriva and Atrovent at the same time. Please, please make sure you talk to the Respirologist about this.
Am I right or wrong about this people? Help me out...and Ann too of course. I'll happily be wrong if I am.
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Post by Deborah on May 23, 2012 10:57:20 GMT -5
Love the pun!!!
My doctor put me on the singulaire-substitute a few months ago - much more reasonably priced. I seem to recall there was a lot of controversy when the federal government changed the rules on drug patents in Canada. I must admit I haven't looked for any neutral studies on whether the changes accomplished their purpose, or whether they just increased the costs to the people and the medical system.
Very interesting discussion!
Deborah
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Post by ronwtor on May 23, 2012 11:27:35 GMT -5
westpark was paying 40 dollars for respimant. get your facts right before some one makes a comment. also my resp. was paying 75 dollars for trial on sp[irvva.i do not post something with out facts
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Post by ronwtor on May 23, 2012 11:40:13 GMT -5
wetpark is doing 3 year study on respimant until trial is finished and sent to f.d.a. for app. youwill not see any thing posted. all the trials i did was for resp dr. durzo there are currently 4 resp. doing combo trials.
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Post by sandy07 on May 23, 2012 11:41:00 GMT -5
Okay.....I think we have a problem. People seem to be confusing the 2 drugs..Spiriva and Singulair. The thread got off track and became confusing for some...me included. Maybe we should end this here and start a new one for each?
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Post by Blossom/Jackie W. on May 23, 2012 12:35:38 GMT -5
We can do that Sandy and we should.....but I do want to make mention of something since you asked the question re: Ann and taking Spiriva AND Atrovent. As I recall the issue did come up here once or twice before. And; it's my understanding that Yes; there are "some" Dr's who prescribe both in "some situations" (I won't add my personal opinion on this however The only thing I can/will add/say on this Ann; and considering your problems of late with fainting and the like..... please specifically ask him/her about this combo becasue it is "not the norm" for many COPD patients. I'm not saying it isn't the right choice for you.... (Again; it is done for some patients from my understanding) Just please question the rationale of taking both.
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Post by annabob on May 23, 2012 13:32:34 GMT -5
Thanks Jackie. I am going to discuss this with my respirologist next week. Just a note here: Atrovent was not added to my list of copd meds until after I had been admitted to the hospital last visit. So I dont think it has anything to do with my fainting. But I am still going to check it out. I have a long list of questions. Hope to get some answers. I have both a cat scan and an ultra sound scheduled for July . I will find out what they are for.
It seems to be taking an awful long time, but I do think I am feeling better, maybe just a little. But every bit counts.
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Post by Deborah on May 23, 2012 15:03:59 GMT -5
Oops! I couldn't find my earlier post so I repeated myself. I never noticed there was a second page! Silly me. Sorry for the duplication.
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Post by ronwtor on May 26, 2012 10:35:21 GMT -5
hi .blossum. they are reg. clinics that pay you each time. when you agree to do a trial you have to sighn a16 page forms not to disclose imfo. on trial
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Post by ronwtor on Jun 16, 2012 21:52:31 GMT -5
if you combine spirva and indactoral you would have the best copd product on the market.spirva is trying to do it.when i did novartis trial.iwas the only one using both .we did a 24 hrs.time study pft testing every 6hrs at the end my fvi increased 30%.
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Post by Blossom/Jackie W. on Jun 17, 2012 9:19:42 GMT -5
This gets confusing with some of these meds.... O.K. Indacterol is Onbreze, recently approved in Canada and yes; they have done studies I believe with taking Spiriva AND Indacterol. O.K. Ron...... what I want to know from you is whether you were taking any other breathing meds i.e. Symbocort or Advair (other than your blue resuce puffer) WHILE you were doing this trial. Exactly what meds were you on DURING the trial? Also; when you say your FEV 1 rose 30%..... do you mean it went up BY 30%... or went TO 30%. And if it went TO 30%, what was your FEV 1 at the beginning? Thanks, J
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Post by ronwtor on Jun 17, 2012 22:25:10 GMT -5
hi blossom. i took advair..spiriva. indactoral .ventolin on the pft test.fvi increased30%.the resp. sent results to novartis .same thing with nyco med they have all my med. records.i had to sighn a release note for nyco med. 18 months on daxas no sickness
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Post by izzie on Jun 19, 2012 12:51:07 GMT -5
I can only speak for myself, but I had major problems with Spiriva and found that if I didn't maintain a high protein, low carb and adequate soluble fibre diet......it would cause me even more grief. I only take it as needed now, and on the days that I exercise or go for a long walk with my trusted and loyal dog Chikatitah. I know the drug company says Spiriva is a once daily dosing, but I found it was way too much for me. I'm sorry, but in my opinion.....one size does not fit all and I am just a small woman.
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Post by Blossom/Jackie W. on Jun 19, 2012 13:14:28 GMT -5
the water gets muddier it seems.....
Izzie; what happens if you don't maintain a high fibre and protein and low carb diet?
Ron; I'm having a bit of trouble grasping your FEV 1 rasied by 30%! That's a SIGNIFIGANT increase...... no small potatoes! What was it at, then change to during this trial?What is your FEV 1 now?
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Post by izzie on Jun 19, 2012 14:09:39 GMT -5
Hi Blosson, Gosh you are full of questions, but I will do my best to answer. Both Spiriva and Uniphyl can cause a loss of appetite, and Uniphyl sometimes will cause Insomnia for me....so maintaining a high protein, low carb diet can be challenging at times. Sometimes I will eat 5 or 6 small meals versus 3 larger meals....the fuller the stomach the harder it is to breathe. Here are the really bad side effects of Spiriva that I was experiencing: Fast and irregular heart beat. Blurred vision and pain in the eyes. Difficult and painful urination. Skin rash and hives. Tightness of the chest and or bronchospasm Swelling of the face, throat and toungue Upper sinus infection Urinary tract infection When I called the drug company, they advised me to stop the drug immediately and see my doctor asap. They complete a Health Canada report and send it to my doctor and my doctor is not happy about having to do extra paper work, so my doctor is right.........I am probably to high maintenance for him. Spiriva contains lactose which is needed for it's delivery system and I am highly allergic to Lactose, it also contains tiotropium bromide monohydrate.....which is a salt derivative. Salts can be hard on soft tissue and yes it helps clear away mucous, but if you have no mucous....what is it doing to the soft tissue in your lungs?
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Post by izzie on Jun 20, 2012 4:06:09 GMT -5
Hi Sandy07, How long have you been on the Spiriva? I was on it for a little over 2 years before I started encoutering difficulties with it and talked to my pulmonary specialist regarding my concerns. But because my FEV was better on it, than off it........he insisted I continue using it. Yes, my FEV was better, but I felt terrible taking it on a daily basis. I actually had better success with just plain saline solution in my nebulizer and it pretty much gave me the same result without making me feel like crap. I live in Calgary, Alberta and we are situated at a very high altitude and I think Edmonton is at an even higher altitude. Altitude makes a difference in how much medication I need to manage my symptoms. When I go to Victoria, B.C. to visit my friend, I actually need less medication because Victoria is situated at Sea Level or Level Zero as I call, . Spiriva is a once a day daily dose, but I found it was just too harsh on my very delicate physical eco-system. At first, I thought it was a wonderful drug because it cleared away the mucous, but our bodies produce mucous on a daily basis for a very good reason.........it helps contain and clear away the toxins, viruses and/or bad bacteria that sometimes gets into our very delicate physical eco-system. I haven't seen my pulmonary specialist since last Nov/2011 and I don't really want to see him either, but if he calls me......I'll tell him that I only take Spiriva sparingly. I truly hope you will find a solution for yourself as well. Good Luck and my Best Wishes are always with a fellow COPD sufferer.
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Post by sandy07 on Jun 20, 2012 10:22:10 GMT -5
izzie...I was on Spiriva for 4 yrs. before I quit. I was going to start on the Spiriva again this week. It needs to build up in the system before you get the full effect, so I was going to let it build up for a few weeks before I decided anything about it. I don't know how much will build up for you if you only take it once in a while. I also found it took a while to come OUT of my system. I was great the first day after I quit. I was using Atrovent instead. Then every day after that I got a little worse...not much...but a little. I'm back to where I was with the Spiriva....some good days , some bad days. Still having the Spiriva in my system and then using Atrovent seemed to be the best....that's why I'm thinking of 2 wks. on and 2 wks. off. I'll just have to try I guess. The doctors and RTs were surprised about my troubles with Spiriva. They seemed to think Spiriva could do no harm. I think more people are having problems as time goes on.
BTW....Calgary, being closer to the mountains, is at a higher elevation than Edmonton. I found that out when I was checking our elevations with Colorado elevations for a trip we were going on.
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Post by izzie on Jun 20, 2012 10:44:30 GMT -5
Hi sandy07,
I just had to respond to your post.......according to my internet research, it takes 5 to 7 days for the effects of Spiriva on the kidney to be completely gone from our very delicate eco-system and even less time for the lungs to be completely free it.
Check with your doctor, if you have a good one..............I unfortunately had a doctor that didn't even realize that Spiriva contained lactose, of which I am very allergic too. Anyway, as I said.....I only take the Spiriva sparingly and typically between the first and fifth day of my last dose. It really helps to keep a daily diary of my meds..........at least, that is what I have found.
Wishing well as always............PS, I use to live in St. Albert, just outside of Edmonton(beautiful city).
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Post by sandy07 on Jun 20, 2012 11:09:19 GMT -5
izzie.. "between the first and fifth day of my last dose?". Sorry, don't understand this.
BTW...we lived in St. Albert in 1986/87. I think Blossom (Jackie) lived there years ago as well. I liked it there. I go thru there now when going to the specialist.
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Post by izzie on Jun 21, 2012 10:48:42 GMT -5
Hi sandy07.
What I mean when I say between the first and fifth day of my last dose of Spiriva is.....let's say I take Spiriva on a Monday at 9:30 in the morning, my next dose is actually due to be taken on Tuesday at 9:30 in the morning, but if I am not too mucousy or phlegmy, I won't take it. I will typically wait until I feel that my bronchial tubes actually need some help from Spiriva. Sometimes I am only taking it every 3rd or 4th day, but I have gone 6 days without it, as well.
I try to avoid the foods and beverages that will make my digestive system and gastro-intestinal tract all mucously and phlemy. Our digestive system begins at the mouth where we ingest things and it goes on down to the stomach, large intestine, small intestine and colon and well you know the rest. Dairy products, most sugars, overly salted and oily products tend to clog up my very delicate eco-system, so I try to be careful about not consuming too much. Because I am lactose intolerant, I avoid dairy products completely......milk, some cheeses, cottage cheese, sour cream, whipped cream. Almond milk and rice milk is a better choice for me for my cereals, and porridges that I like to eat. Sugars are also very upsetting and mucous forming to my gastro-intestinal tract, except for honey, brown sugar and beet sugar. Oils are slow to find their way through my digestive system, so I avoid unsaturated fats as much as possible.
Spiriva is very hard on the kidneys and lower intestinal tract and I read on the internet that it takes 5 to 7 days to completely clear out of our system, but the salty substance likes to hang around too long in our kidneys. For those of us with a salt-restricted diet, this is not a good thing.
Anyway, there are other ways to clear out the mucous in our esophogus and bronchial, like drinking hot lemon water with a little honey or you can have it chilled as well. Boiled ginger root tea is another favorite of mine, and lastly........I really like chilled cucumber water. I peel and slice a cucumber and let it sit over night in chilled water and all the flavors of the cucumber release into the water....combine it with metamucil(soluble fibre) and you have a refreshing and healthy beverage. But it's all about what tingles your taste buds and keeps the mucous production under control.
Spiriva has caused me so much grief in the 3 years that I've taken it on a daily basis.............now I use it sparingly and restrict my diet a lot more.
Hope this helps..........looks like we are going to have a nice sunny day in Alberta today. Happy rays of sunshine to you all and God Bless.
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Post by sandy07 on Jun 21, 2012 11:26:21 GMT -5
Okay...now I understand. I think I'll be trying something like that as well. I still haven't started back on it. Soon tho.
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Post by ronwtor on Jun 21, 2012 19:42:09 GMT -5
hi blossom. my fv1 is 32 itwas before idid trial fvi 24.during we had a booklet from norvartis with peak flow meter. we had to record it every mine was 240-230- 240.240-235-240. 245-235-240
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Post by Deleted on Jun 21, 2012 23:01:00 GMT -5
This is a very complicated thread so I will toTRY be brief...if I don't make sense thats my excuse. . You aren't alone in your doctor problems Izzie, I think both of mine would prefer not to see me permanently. I was just reading about some new (as yet unpublished) research by a reputable university that said there may be as many as 5x the number of side effects associated with meds than are commonly assumed. Hopefully that will trickle down to the providers and there will be some alternatives to offer. I have most of the SE you do and I've wondered about the lactose as well. I seem to have developed a greater sensitivity to it over the past few years, I can't drink milk anymore. I don't know if an 'as needed approach' to taking Spiriva iwill work but there is an indivvvidual who is very knowledgeable and active in COPD issues on a national level in the US who takes it 3 times per week with her doctors blessing. Annabob, do you actually lose conciousness when you faint or just get dizzy and fall? I don't know if this has any relation to what you are experiencing but I've had some problems as well. I didn't faint but I couldn't get out of bed, every time I sat up I fell over '. I went to pulmo and he didn't seem concerned, I suspect he thought I was overreacting to postural hypotension but I've had that tendency my whole life and what happened was different. It continued and I went to my primary care doctor who wanted to treat me for Meniers Disease (inner ear issues). I knew it was related to meds because it varied so I just cut down Flovent and Albuterol and it resolved in a few days. I mention this because I see you are also on Advair. I dont remember if I was taking a full dose of spiriva then or only one puff per day as I am now. I was really dizzy during that period but I didnt lose conciousness, just fell over like I'd been shot. I don't know if Spiriva and Atrovent in combination could cause it but dizziness is a listed SE of that too. Ive wondered if some of the evening SOB is just pollutants buildng up during the day. Rainshadow
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Post by Blossom/Jackie W. on Jun 22, 2012 8:48:02 GMT -5
This HAS become a confusing thread. (it's as clear as mud)
Before anyone posts anything else, please stick with the thread topic which was/is Spiriva Problems. Anything else should go under another topic or..... start a new thread please.
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Post by izzie on Jun 22, 2012 23:12:02 GMT -5
rainshadow....When I last seen my family doctor, I told him that I was having bronchiospasms, chills, and dizziness and I thought it was from the Spiriva, he ran out of the room like a frightened puppy.
I told him that I was highly allergic to the lactose in milk and that Spiriva has to use lactose for it's delivery system. Yes, only a small amount is inhaled into the lungs, but still it ends up in the bloodstream. Our bodies are continuously cleansing themselves of environmental toxins, bacteria, viruses, etc.
Anyway, my body reacts to lactose as though it were a toxin, but the medical community looks at it as just a side effect and what is better the side effects or not being able to breathe. The little insert that we get with Spiriva warns consumers to talk to their doctors if they are lactose intolerant, well I did and he ran out of the room. My search continues for a doctor who is courageous and a bit more knowledgable.
I continue to use the Spiriva, but I wish there was another alternative. Advair, which is a corticosteroid also uses lactose in it's delivery system....so I'm getting a double whammy of the stuff that's caused me so much grief all my life.
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Post by stormygal on Jun 26, 2012 20:30:23 GMT -5
Ok, Chris, I'm glad your such a comedian You did give me a smile for the day. Thanks
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Post by sandy07 on Jul 11, 2012 14:51:10 GMT -5
I took Spiriva again today. It didn't seize up my lungs so I'll continue taking it, for a few weeks anyway. I'll let you know how it works out.
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