|
Post by sandy07 on Apr 24, 2012 13:46:00 GMT -5
Since december my breathing has slowly been getting worse and worse. Blamed it on allergies and air pressure. But I also noticed that my lungs would bother me after taking Spiriva. I kept on taking it until this past Sunday. When I inhaled the stuff it felt like it turned my lungs to stone. I could hardly do anything all day. So on Monday (yesterday) I didn't take it. I felt wonderful all day. I had some Atrovent so used it instead. Today I did the same and feel good again.
The RT from the oxygen supplier came today and seemed concerned when I told her I'd stopped the Spiriva but was okay when I told her I was seeing the specialist next week.
I know that we're told when we first start Spiriva that it will take a while (week or two ?) to get the full effects. So, I'm thinking that may be true in reverse as well. I'm wondering if I'll feel better or worse in a week or two when it's all gone from my system. The problem is...it may have helped in part. I guess I'll know by the time I see the specialist.
When I looked up the side effects again I paid more attention. These are the few on the list that I've experienced.
common side effects: blurred vision and indigestion
Severe side effects : difficulty breathing, tightness in chest and new or worsened breathing.
It's the severe that are bothering me the most. The RT was surprised when I said the stuff turned my lungs to stone....but there it is on the list.
I've been suffering for months. Only when it got to the point that it couldn't be ignored any longer did I do something about it. It almost sounds too easy. Hope I still feel this good a week from now.
|
|
|
Post by skate4life on Apr 24, 2012 15:06:54 GMT -5
I too had problem with Spirva = tight chest and increased cough. Learned I am sensitive to all anticholinergics. Can't to DuoNeb or TessePearls for the same reason. Stopped the Spireva and waited 4 days and tried again, same problem. Waited another 4 days and still had problem. Told Pulmy doc and he agreed i was just one of those ultrasensitive people. He changed me to Brovana (bronchodilator by nebulizer) and Budesibude (nebulizer steroid.) The combo works great for me. I went on Medicare, age 65, in December and these are under Part B.
Tell your doc about your reaction and see if he can avoid an anticholingeric med.
|
|
|
Post by skate4life on Apr 24, 2012 15:07:31 GMT -5
I too had problem with Spirva = tight chest and increased cough. Learned I am sensitive to all anticholinergics. Can't to DuoNeb or TessePearls for the same reason. Stopped the Spireva and waited 4 days and tried again, same problem. Waited another 4 days and still had problem. Told Pulmy doc and he agreed i was just one of those ultrasensitive people. He changed me to Brovana (bronchodilator by nebulizer) and Budesibude (nebulizer steroid.) The combo works great for me. I went on Medicare, age 65, in December and these are under Part B.
Tell your doc about your reaction and see if he can avoid an anticholingeric med.
|
|
|
Post by ronwtor on Apr 24, 2012 22:45:27 GMT -5
hi sandy. there are all kinds of clinical trials being done on spirva
|
|
|
Post by shelley on Apr 25, 2012 11:56:00 GMT -5
This is really interesting as I've been on Spiriva for a long time now and for the past year have been complaining that it feels like it shuts down my lungs about an hour after I take it. I take my Symbicort when I wake up and things are pretty good and then about an hour later, use my Spiriiva and WHAM! Food for thought.
|
|
|
Post by sandy07 on Apr 25, 2012 12:16:02 GMT -5
I just checked with the pharmacy to see how long I've been on it. It's been since Sept. 2007. Doesn't seem that long but that's what they said. Seems strange almost that it's bothering me (us) after all this time.
Another thing I checked was my oxygen while sitting. It's 93. It was 89 or 90 a week ago. The only way I could move around was with oxygen. I've been on o2 24/7 for 6 mos. I'm going to keep checking while moving around to see how long I last before it drops to 88. Maybe I won't need oxygen all the time anymore.
|
|
|
Post by Blossom/Jackie W. on Apr 27, 2012 7:57:31 GMT -5
I've watched this thread a bit and I hope I get to see/read the posts and experiences of others. I can't say that I have an "opinion" yet but I know that people can certainly develop sensitivities and allergies to things that they never had before... Anyway; for the heck of it, I ran search on Health Canada's Adverse Reaction (reported) database. I'm gonna put a link here though I'm not sure it'll "hold" Anyway; just scroll down the page a bit and you'll see them There was 435 filed reports btw. Keep in mind that these are only "filed" reports not anything else. On the far right, you'll see the symptoms or situation created, or reported. On the left of each case you'll see a report number. If you click on the report number, you'll see who reported it... ie.e a patient, A dr, a pharmacist. They also rate the seriouness quite often as well the sequel/outcome. You'll figure out how it works quick enough... Anyway.... here it is... webprod3.hc-sc.gc.ca/arquery-rechercheei/previous-precedent.do?lang=eng&page=2
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on May 3, 2012 11:35:17 GMT -5
I'm still lurking around sometimes. I was so happy to see this thread, thats been happening to me too and I've never seen anything about it. What I have done is only take one puff instead of the prescribed two and it helps but I don't think it entirely solves the problem. I have noticed my sats are better with less too.
I'm still grousing about my meds in general, have had shingles for weeks, not a bad case at all it but waxes and wanes in relation to my steroid dose.
rainshadow
|
|
|
Post by Blossom/Jackie W. on May 3, 2012 13:15:41 GMT -5
Rainshadow... are you talking about "Spiriva" or "Symbicort?" Two totally different types of meds.
As for the shingles.... I'm sorry to hear that. They can be so darn painful! I saw my friend go through it the first time. Not nice at all.....
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on May 3, 2012 23:06:34 GMT -5
I mean Spiriva in relation to the stiffness, I still take Flovent too but a lower dose than I used to.
Has anyone ever noticed muscle stiffness in general or feeling of numbness with Spiriva? I thought it was stiff muscles in the chest wall but I don't know. It feels like my chest just locks up.
I couldn't get the link to work.
Rainshadow
|
|
|
Post by ronwtor on May 4, 2012 12:07:47 GMT -5
spirva lasts 18 hours. they are doing clinical trials they are doing combo meds onit there are 4 resp. doing them. dr durzo. dr. chapman. dr anna day. one trial is spirva and indacterol
|
|
|
Post by Blossom/Jackie W. on May 4, 2012 12:50:28 GMT -5
Hey Ron; so what is it they're studying and for what purpose? I know that you're quite active in trials and the like at West Park; maybe you have a link or name of the studies we could have a look see at?
|
|
|
Post by ronwtor on May 4, 2012 23:20:00 GMT -5
pfizer kows they have prob,, with spirva. the purpose of these trials is to make there prod last 24hrs. these trials have another 6months to go. i am working doing clinical trial with dr.durzo
|
|
|
Post by chrisw on May 5, 2012 11:23:22 GMT -5
|
|
|
Post by sandy07 on May 5, 2012 11:30:11 GMT -5
When the RT from the oxygen supplier was here she said people were telling her it was only lasting 12hrs. It must depend on the person or maybe the severity of the COPD. I found that over 4 1/2 yrs. it was becoming less and less till it wasn't working at all anymore and was, in fact, doing more harm than good.
I can't remember when it first came out. Has it been just 6 -7 yrs. ago? maybe some of the problems don't show up till you've been on it for a long time.
|
|
|
Post by ronwtor on May 5, 2012 21:51:26 GMT -5
chris.we have abook from spirva we have to check our breathing with peak flow meter every 6 hours.and record results mine in morning 249-230-240.last one at 9pm reads 170- 160 -17o
|
|
Deleted
Deleted Member
Posts: 0
|
Post by Deleted on May 6, 2012 1:08:22 GMT -5
Wow, this is really a help. I've been having a horrible time all winter with evening bronchospasms, I almost ( and probably should have) called Emt s a few times. Pulmo and I both thought it was Flovent, he finally lowered the dose and it did help but I've noticed I still get them if I take a full dose of Spiriva, they just aren;t quite as severe. I've wondered if the Spiriva levels dropped just enough after 12 hours to cause rebound constriction or something.
Rainshadow
|
|
|
Post by mumsie on May 6, 2012 1:25:49 GMT -5
I was really surprised to come across people having problems with Spiriva. Here in the UK it is standard treatment for COPD, along with Symbicort. I don't know of anyone having problems with it other than minor issues such as dry mouth. Perhaps it reacts differently depending upon which variety (phenotype) of COPD you have. Also I guess with any medication one can develop an allergy or an immunity to it over time. I was told at pulmonary rehab that the drug lasts for around 30 - 36 hours and have to say that if I am a few hours late in taking it I don't notice any lessening of effect. With Symbicort however, I notice pretty quick if I mis a dose - usually within an hour or so. I did wonder, seeing ronwtor's mention of peak flow measurements, if it behaves differently in those with a large asthmatic component for instance, seeing as it was originally meant for COPD? All any of us can do though is be aware of how things affect us personally and act accordingly. Oh - I do also get the husky voice now and then but was never sure if that was down to the Spiriva or the Symbicort.
PS. I am assuming that we are all referring to the powder capsule type Spiriva and not the Spiriva Respimat?
|
|
|
Post by ronwtor on May 7, 2012 13:47:43 GMT -5
there is another year of testing of respimant.i do not think it will pass f,d. a. approval. i have gone off spirva to do diff. trials. years ago
|
|
|
Post by Ernie on May 8, 2012 5:48:10 GMT -5
Hi I live in the UK & I have problems with my water works due to Spiriva & I have irregular heart beats & blurred vision with Symbicort,but I have to take both meds to try to keep my breathing under control. If anybody can tell me of any meds that would be better for me I would like to hear from you. My GP told me there is no other medication for Emphysema.
|
|
|
Post by ronwtor on May 19, 2012 22:08:44 GMT -5
answer me chriss why pfizer is spending millions onclinical trials. these trialsare combo clin.in fact one clin . combo spirva and indecterol under another name also there is a usa.co. forest hill trying to match pfizer pro.
|
|
|
Post by Blossom/Jackie W. on May 20, 2012 9:31:30 GMT -5
|
|
|
Post by chrisw on May 20, 2012 14:47:00 GMT -5
Ron -
We tend to assume that the drug companies are trying to produce drugs that will be better for us. however we need to remember that these companies only exist to make money for their investors, drugs are merely the products they use to create that profit. They see some of their 'cash cows' coming to the end of their patent protection and are all jockeying for position desperately hoping that it will be 'their drug' that is the next blockbuster.
Many of the 'new' drugs are really variations on a theme of the old drugs such as combination products (one inhaler to solve all your breathing problems!!) or 24hour variations on '12'hour long-acting beta agonists (only have to remember once a day to take your meds!!).
Occasionally a novel drug such as roflumilast (Daliresp) crops up that is now unique in the market as a PDE-4 inhibitor (but, for those pricking up their ears, this is only for those with chronic bronchitis, a lot of phlegm and exacerbations. Unfortunately, although it seems to work well for some, the side effects result in many people stopping to use it.
Very occasionally a gem of a drug that is already generic is found to have very real and lasting benefits for COPDers - an example of this is azithromycin prescribed for long term regular use (daily or every other day or similar) which is taken mostly for it's immunomodulator effects (prednisone is an immunomodulator we all know about) and not for it's anti-biotic effects. Note that this also is mainly for chronic bronchitis to minimise exacerbations. I don't see any drug companies paying for million dollar trials to prove that this drug works!
|
|
|
Post by ronwtor on May 20, 2012 16:56:52 GMT -5
chris. novartis did 3 years on indacterol.daxas spent 3yrs. respimant spent 4 years. when i did clinical trial 26 weeks i made 25oo.oo dollars.respimant paid 8000.oo for 4 yrs.ihey do these trials to get f.d.a app.
|
|
|
Post by Blossom/Jackie W. on May 22, 2012 8:54:14 GMT -5
Ron; you must have been participating via a private clinic to get paid here in Canada because when you go through a Resp clinic affilitated with a hospital there's no pay except perhaps to cover your parking and lunch etc. Right now there's a big push (and has been) as some of these drug companies patents are/will be expiring and; they sure didn't/don't develop meds strictly out of concern or the goodness of their hearts. I'm in agreement with Chris on that one! To give you an idea how the Pharma industry is being hit in many ways (financially) not just from patent issues, take a look at Astra Zeneca, one of the largest drug companies in the world (they also make Symbicort ) AstraZeneca to cut another 7,350 jobs as patents expire www.independent.co.uk/news/business/news/astrazeneca-to-cut-another-7350-jobs-as-patents-expire-6316125.htmlAs for Daxas....... it changed hands at least twice (as having bombed for what it was "originally" intended for) before being bought (3rd time sell and purchase) by Nycomed who has, since approval of their product, now crawled into bed with Takima (sp?) They all do what they have to do to make a buck and satisfy investors. Chris is right re: "remakes" of "most" of the current products and I'll tell you what one of my "pet peeves" is....... MOST of the drugs they test are tested against placebos..... If a product is the newest, best and latest, as a "remake" of a product or in competition with a current drug etc, then bloody Hell, test it against a specific product! Go head to head!
|
|
|
Post by Blossom/Jackie W. on May 22, 2012 13:43:07 GMT -5
|
|
|
Post by sandy07 on May 22, 2012 13:48:36 GMT -5
Jackie...it's off already...been a few months. The generic is Montelukast, right? It says the U.S patent comes off in August. Canada's must have been different.
|
|
|
Post by annabob on May 22, 2012 15:42:36 GMT -5
All this med. talk is starting to confuse me. I go to my Respirologist next week. I think I had better have a discussion with her.
|
|
|
Post by Blossom/Jackie W. on May 22, 2012 18:04:02 GMT -5
I think maybe we got off topic here and I'm guilty as well.... And Ann; this is just "generic" talk ( no pun intended ;D )
The thing is we talk about meds, treatments, living/dealing with COPD but also other health issues (comorbidities) than can be associated with this disease; and.. even beyond or outside of ....
We learn from sharing and I know that I've learned a lot over the years from what others have shared. Things I'd not thought of or considered and even put to use. We pick or think about; when we relate, to a certain situation that's relative to our own; at any given time. What might not be applicable to me, or anyone else today; might be tomorrow.
Bottom line... you sift through and pick out for your situation as it currently is and just sorta keep your ears open to other things. You never know when the info will come in handy for yourself or a little something will tweak as a reminder when you want to help someone.
But.... getting back on topic which was Sandy's ceasing of Spiriva and her rationale of same etc; and the input of others.......
It's now been a month Sandy.....
Would you update us please on what you've felt/discovered?
|
|
|
Post by chrisw on May 23, 2012 0:35:04 GMT -5
Really off topic here - when I read Jackies post of this morning, what I SAW was AstraZeneca to cut another 7,350 jobs as patients expire It really made a bit more sense when I re-read it ;D
|
|