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Post by sandy07 on Feb 26, 2011 21:29:45 GMT -5
Gosh...hope this passes quickly Shelley.
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Post by hourlibourli on Feb 28, 2011 12:56:01 GMT -5
I now have been using Daxas for 5 days. No side effects up to now. And I alresdy seem to be less SOB! These meds were given to me (no cost) by my pneumologist. I am anxious to se the results after a few weeks!  |
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Post by susanny on Feb 28, 2011 23:42:55 GMT -5
Glad to see you jump right in! That's great that you have had no side effects and are already seeming to feel an improvement. Will be exciting to hear how your test results come out. hope you will keep us informed as it's very important to hear what's happening with real people, not just study reports. IMO, of course.
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Post by shelley on Mar 1, 2011 12:18:55 GMT -5
Day 8 - nausea is gone but am having difficulty sleeping through the night; keep waking at about 3am and totally wired. Started to get incidents of feeling like my blood pressure is hitting the floor a couple of days ago, ie: feels like the rug is being pulled out from under me and I'm walking on air but no dizziness and no headaches. As for breathing, don't really know. The proof of it will be my PFT at the end of March.
As I do not have a chronic cough or mucous it is possible that this med will not do anything for me. If it takes my meager FEV1 of 23% to something markedly higher (23-27%) after my PFT I'll start to believe in it. The secondary test will be whether or not I get less lung attacks over a one year period.
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Post by shelley on Mar 1, 2011 13:03:51 GMT -5
Can anyone who is getting this covered in anyway by their insurance company let me know which company. I'm having difficulty with Manulife. Thx
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Post by valerie on Mar 1, 2011 14:53:39 GMT -5
Yesterday I had my usual 6 month revision with the Lung specialist, and I asked him if Daxas had hit Spain yet. He showed me a packet which he had in a drawer. Unfortunately, he doesn't seem keen on precribing it until time passes and he has feed back. Most probably doctors are nervous about the side effects, but for someone suffering from bad phlegm this attitude is unfair. Stick with it Shelley, and hope the side effects calm down in a few days.
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Post by chrisw on Mar 1, 2011 14:59:50 GMT -5
Forest Laboratories Inc. and Switzerland's Nycomed said Tuesday the Food and Drug Administration approved the drug Daliresp to reduce symptoms associated with a severe lung disease, despite a negative recommendation from experts last year.
Daliresp, also known as roflumilast, is now approved to reduce symptoms of chronic obstructive pulmonary disease in patients with the condition
associated with chronic bronchitis. COPD symptoms include reathlessness,
chronic cough and excessive production of phlegm. The drug is specifically
aimed at preventing exacerbations, or a significant worsening of symptoms.
Merck currently has rights to the drug in Canada and the European Union,
where it is approved and sold under the name Daxas.
www.msnbc.msn.com/id/41844902 |
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Post by chrisw on Mar 1, 2011 15:07:29 GMT -5
Valerie,
Did you ask whether you could be the one to try it and let him know how it works ;D ;D
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Post by sandy07 on Mar 1, 2011 15:44:49 GMT -5
Shelley....I think someone said SunLife was covering it.
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Post by hugahusky on Mar 1, 2011 16:25:13 GMT -5
Hi Shelley,
Yes, Sunlife will cover the cost. My GP is hesitant about prescribing it for me as well, however, I see my respirologist in May and perhaps he will. I am keeping my fingers crossed.
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Post by valerie on Mar 1, 2011 19:33:58 GMT -5
Yes, after the doctor said he was going to wait to get some more positive facts before prescribing Daxas, I offered to be his Guinea Pig and he laughed but repeated that he thought it was best to wait
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Post by hourlibourli on Mar 1, 2011 20:17:32 GMT -5
Day 6: I had diarrhea this morning and a bit nervous. I talked to my pneumo and he said to stop it tomorrow if I have more diarrhea till then. Otherwise to continue talking Daxas one more day and see.....
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Post by valerie on Mar 2, 2011 8:57:52 GMT -5
I am not taking Daxas but it could be that all we have read and heard about it's side effects is making the taking of it very apprehensive and unnerving, especially the part about suicide. Maybe if headaches, nervousness and diarrhea are experienced , to stop taking it would spoil any chance of knowing if our bodies would get used to it in time and thus be very benficial. I remember taking my medicines for the fist time and for a long while I had bad side effects, especially with Symbicort and Theolair. The doctors too must be very jittery about Daxas and it's side effects.
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Post by shelley on Mar 2, 2011 11:13:37 GMT -5
Well the nauseau is back big time but I'm going to stick with it for awhile and see if it calms down as when I researched the side effects; it was noted that they went away with time. That is the same about a lot of meds. The only other thing I'm a bit nervous about but my respirologist is not, is that I'm on theophylline 600 mg/day and the insert does say that it has not been tested with it. As for my breathing, if I keep it up we'll know at the end of March as I have a PFT at the transplant clinic here in Toronto. Also found out that Manulife does cover it 100% for me; my pharmacist was wrong.
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Post by hourlibourli on Mar 2, 2011 14:20:37 GMT -5
Day 7 on Daxas. No quick trip to the bathroom today! :-) And no other adverse effect. I still feel that my breathing is better. I woke up in the middle of the night; measured my saturation: it was 98%! Unbeliveable. It usually is 93-94%. All this without O2.  |
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Post by shelley on Mar 2, 2011 14:35:27 GMT -5
The nausea is really getting to me. Living off gravol now. Has anyone else had any difficulty with nausea and if so what did you do about it
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Post by valerie on Mar 2, 2011 14:49:50 GMT -5
I know what you mean about the theophyline. I had to cut down mine because of the meds I take for my heart. Could you not check it with the doctor again.
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Post by hourlibourli on Mar 4, 2011 10:57:09 GMT -5
Day 8: no adverse effects. Still breathe better.
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Post by susanny on Mar 4, 2011 11:32:59 GMT -5
Shelley, I take Zofran 10 mgs for the severe nausea that I have. It is used for patients undergoing chemo, etc.., and it is working great for me. It blocks the seratonine which stops the inpulse for nausea and vomiting and has been a true lifesaver for me. I hope you feel better soon, I soooo know what you are going through with the nausea.
Sue
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Post by shelley on Mar 5, 2011 15:11:57 GMT -5
Well, I have to tell you....day 12 and I now have an all new empathy for those on chemo! I am nauseous beyond belief, I've had 2 1/2 days of diarhhea worse than when I had C difficle years ago. I am so weak I can barely stand and I'm pushing fluids to try and keep my electrolytes balanced. I've contemplated cutting the pill in 1/2 to see if I can handle it, I've contemplated just not taking it....at the moment, for me, this is the drug from hell. All that said and done; yes my breathing has improved noticeably; which really ticks me off. Really don't know what to do. Oh and by the way, not a whole lot of sleep.
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Post by maryaz on Mar 5, 2011 22:35:15 GMT -5
I am still watching this drug use some. I am not interested for me at this point. Shelly, I wanted to agree with Susan on Zofran. If you can, try to use it. My husband uses it for Chemo and works well. He gave me one recently and it worked for me just for nausea.
Maybe you are the same person cause seems odd. I just read on the CI board that someone on this for 12 days has quit. They joined the board 6 years ago and have only posted 27 times. They gave up. Sounds like your post because of similar problems. If not you, you might want to check it out. Big coincidence if not because they also live in Ontario.
You can also let me know if I am reading one and the same or not. If you keep taking it, get the Zofran if they will give it to you.
How long are most doctors going to want people to suffer with this before giving in. I am sure when you are in a severe stage and breathing improves, it is hard to give up. Some may be pushing this too far.
Please everyone be careful trying it. Maybe we will soon hear more success stories. Take care,
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Post by hourlibourli on Mar 6, 2011 11:58:36 GMT -5
Day 10 with Daxas.
No side effect and breathing better!
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Post by shelley on Mar 6, 2011 13:02:35 GMT -5
Yes Mary, you were reading my post elsewhere. I'm not sure what Zofran is or whether it is available in Canada w/o a script. Yeah, I had to give up and the real kicker is that my breathing was better on it; noticeably better and at this stage of COPD, having spent the last 20 years on every med you can think of for it, I truly did not believe that anything on this earth could make my breathing better. Holy moly it did! But, I just couldn't tolerate it. I have to wonder about starting on a lower dose (which they don't make) in order to build slowly to the effective level as is done with other meds. I know that I absolutely cannot go near SSRIs w/o major gastro problems but they finally got me on one by starting me on extremely small doses over a period of time and building slowly; even then I take 1/2 of the recommended dosage for adults b/c that's all I can take and it is as effective for me as the higher doses for others. I am going to call Nycomed tomorrow and see what they say about splitting the pill as I have 3 months supply. However, I am also weighing the risks of this medication; some are pretty darn serious and I wonder if we're going to be looking at some heavy probs down the road. Don't think I'll be around by the time that happens but miracles do happen. I also know there are other meds of the same nature as Daxas coming down the tubes and they have fewer side effects and risks. Daxas, for me, is a wolf in lamb's clothing but gee, my lungs sure liked the wolf.
hourlibourli, I'm so glad to hear that you're able to tolerate this stuff. I'm jealous because I do know how much better I felt. As with any med, some with have the side effects, others won't; fortunately you are one that is not having probs. The only advice I would give you is to make sure your family doc keeps an eye on your liver function. Like Theophyline (Uniphyl) it is really hard on the liver. I've been on Uniphyl longer than I care to remember and my doc does liver functions & ultrasound tests annually.
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Post by hourlibourli on Mar 6, 2011 15:02:23 GMT -5
Thanks Shelley for the suggestion. According to the Daxas monograph, less than 1 in 10,000 had liver problems during testing. So I keep my fingers crossed!
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Post by susanny on Mar 7, 2011 0:54:02 GMT -5
Shelley, Zofran IS a prescription drug, and I think it's to your benefit to get a hold of it if you can, esp. if you are thinking about restarting the Daxas at a half-dose. I have met my deductible so didn't have to pay a co-pay for the prescription, so don't know what the cost is. But then at the point I was at I would have paid anything. COPD and vomiting don't work well together. I was afraid I would inhale and choke and die by myself in the bathroom. Very scary for me.
Has the nausea gotten any better since stopping the Daxas yet?
I am very happy for you, hourlibouri. Pray it continues for you.
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Post by zar on Mar 7, 2011 4:30:05 GMT -5
When Daxas was first used it was for the studies of it curing emphysema in mice. Since then it has now got a piggy back ride on top of the normal drugs that we take but only if you have bronchitis?. The FDA refused to permit it to go on the market in the US a few months ago,because of the side affects including suicide(there were only 3).But now without ANY more studies they have granted it?. Before taking this drug there are three(3) questions I would like to ask the FDA(1)What made you change your mind?.(2)I know that copders need better drugs to help to control their copd.but after 10+years why all of a sudden is there a hurry.(3)Why now copders who have not signed up for a study being used as guinea pigs for this drug. After following thie drug for a long time I have my own views on this Daxas® is generally well-tolerated and can be given concomitantly with inhaled COPD maintenance treatment. In clinical studies, the most commonly reported adverse events were diarrhoea, weight decrease, nausea and headache, which were experienced by a small percentage of patients.1,2 The majority of these were mild or moderate, occurred within the first weeks of therapy and mostly resolved with continued treatment. It is important to inform patients about the possible side effects associated with Daxas® (in general and in individual cases). www.daxas.com/roflumilast/faq.aspx#Inhibition of cyclooxygenase-2 prevents adverse effects induced by phosphodiesterase type 4 inhibitors in rats. Peter D, Göggel R, Colbatzky F, Nickolaus P. Boehringer Ingelheim Pharma GmbH & Co. KG, Biberach an der Riss, Germany. Abstract BACKGROUND AND PURPOSE: Phosphodiesterase type 4 (PDE4) inhibitors such as roflumilast are currently being developed as anti-inflammatory treatments for chronic airway disorders. However, high doses of PDE4 inhibitors have also been linked to several side effects in different animal species, including pro-inflammatory effects in the rat. Here, we analysed PDE4-related toxicological findings in a rat model and how these side effects might be therapeutically prevented. EXPERIMENTAL APPROACH: Wistar rats were treated orally once daily with 10 mg·kg⁻¹ roflumilast for 4 days. Macroscopic changes were monitored throughout the study and further parameters were analysed at the end of the experiment on day 5. In addition, the effects of concomitant treatment with cyclooxygenase (COX) inhibitors were assessed. KEY RESULTS: Supratherapeutical treatment with roflumilast induced marked body and spleen weight loss, diarrhea, increased secretory activity of the harderian glands, leukocytosis, increased serum cytokine-induced neutrophil chemoattractant-1 (CINC-1) levels, and histopathological changes in thymus, spleen, mesentery and mesenteric lymph nodes. All these toxicological findings could be prevented by the non-steroidal anti-inflammatory drug (NSAID) and non-selective COX inhibitor, diclofenac, given orally. Similar protective effects could be achieved by the COX-2 selective inhibitor lumiracoxib, whereas the COX-1 selective inhibitor SC-560 was generally not effective. CONCLUSIONS AND IMPLICATIONS: Treatment with an NSAID inhibiting COX-2 prevents the major effects found after subchronic overdosing with the PDE4-specific inhibitor roflumilast. If this effect translates into humans, such combined treatment may increase the therapeutic window of PDE4 inhibitors, currently under clinical development. © 2010 Boehringer Ingelheim Pharma GmbH & Co. KG. British Journal of Pharmacology © 2010 The British Pharmacological Society. www.ncbi.nlm.nih.gov/pubmed/20846137 |
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Post by Blossom/Jackie W. on Mar 7, 2011 13:09:41 GMT -5
I want to thank e'one for their continued input on this thread. There's a lot to be gained by many with your experienced feedback. Just look at the number of people who have "viewed" this topic thus far. I think I speak for all of us when I say we look forward to yours, and any new, addional 1st hand experience.
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Post by maryaz on Mar 8, 2011 14:24:48 GMT -5
Hi Jackie, Since I am here I might show you all what I just posted on another forum. They were discussing daxas/roflumilast just like here. Below is what I posted. My subject line that I referred to was "Daliresp, Roflumilast and Daxas". They had a few different topics going and not just one: "Just IMHO, I feel we have too much reading here on the drugs mentioned in this Subject line. I think some people will be getting confused.
Please be aware that Daliresp, Roflumilast and Daxas are all the same drug and just different names.
For the most part it is being called Daxas in other countries and the USA is approving it under the name Daliresp.
Nothing like trying to confuse the public."Now it has a third name.  |
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Post by Blossom/Jackie W. on Mar 8, 2011 15:20:31 GMT -5
I was aware of that Mary.... thank you for posting it here for our members as well. Roflimilast is the "Generic" name. You're right; all the same drug.
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Post by super grandma on Mar 9, 2011 8:26:13 GMT -5
Shelly I was reading your post about the side effects of the drug Daxas. I tried it in the beginning of Jan. and I had the headaches and the nausea really bad so I stopped. I started back on it and I am on day 10 with a few different side effects this time. I am usually constipated but the daxas has helped with that, not that I have diarrhea, but just keeping me more regular.
I am having alot of difficulty with sleeping it almost feels like I am on Predisone but I sure am getting a lot of work done.
I think my breathing has improved a bit its hard to tell yet.
This time I had no headache or nausea so you might want to try it again in a couple of weeks.
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