Guest guest Posted August 13, 2011 Report Share Posted August 13, 2011 I stopped LDN after my most recent MRI. It's not doing anything to slow the progression of my MS. There's a few tests associated with Gilenya. The one I remember for sure is that one has to be monitored for six hours after the first dose. They have to see if one experiences a decrease in heart rate. The most commonly reported side effects with Gilenya include headache, flu, diarrhea, back pain, abnormal liver tests and cough. Women are strongly advised to use contraception to avoid pregnancy while taking Gilenya - and to continue contraception for two months following the discontinuation of the drug. The makers of Gilenya also strongly advise against breastfeeding. Adverse events with Gilenya include: a reduction in heart rate (dose-related and transient); infrequent transient AV conduction block of the heart; a mild increase in blood pressure; macular edema (a condition that can affect vision, caused by swelling behind the eye); reversible elevation of liver enzymes; and a slight increase in lung infections (primarily bronchitis). Other infections, including Herpes infection, are also of concern. A number of precautionary steps have been put in place to minimize risks and enable doctors to better evaluate and treat any possible adverse events. Within six months prior to starting Gilenya, patients should be given a baseline evaluation of any issues with the heart, lungs, liver, eyes and vision, as well as white blood cell count (which may indicate an existing infection). Present medications also need to be considered. Vitals (blood pressure, pulse, etc.) should be taken at baseline and periodically while on treatment. Since the drug causes a reduction in circulating white blood cells, individuals considering Gilenya also need to indicate if they have had chicken pox or a chicken pox vaccination recently; if so, they may need to wait before starting the medication. Individuals who test negative for the chicken pox virus may need to be vaccinated and delay starting Gilenya. Patients will also need to avoid vaccinations with live viruses. When beginning the drug, patients must be observed at a medical facility for the first six hours following the first dose. This is necessary as Gilenya may slow the heart rate, with the most significant drop usually occurring within the first six hours. While taking this drug, patients need to contact their doctor immediately if they experience any symptoms such as dizziness, tiredness, slow or irregular heartbeat, breathing difficulties, visual changes, or signs of an infection or liver problem. A Risk Evaluation and Mitigation Strategy (REMS) has been approved to provide information to patients as well as healthcare professionals on how to use the drug safely, along with possible risks that may occur. Novartis will conduct a five-year observational safety study to further evaluate any adverse events. They have also organized a voluntary registry for women who become pregnant while taking or within two months after discontinuing Gilenya to document possible effects. Dan U dao_nguu@... To: MSersLife From: wobbletowalk@...Date: Fri, 12 Aug 2011 16:37:43 -0700Subject: Re: DAN....Re: started Prednisone today Are you still taking LDN? Poor Whisper having to live with DOGS. lol I hope they get along well. What kind of testing has to be done for Gilenya? hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2011 Report Share Posted August 13, 2011 Wow, Dan. Does it worry you to take this drug? It would worry the heck out of me. I was on Avonex for 5 years but haven't been on any other crab type drugs. I'm not trying to dissuade you. Okay? I'm just sharing my fears.hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: mserslife Sent: Saturday, August 13, 2011 11:25 AMSubject: RE: DAN....Re: Gilenya I stopped LDN after my most recent MRI. It's not doing anything to slow the progression of my MS. There's a few tests associated with Gilenya. The one I remember for sure is that one has to be monitored for six hours after the first dose. They have to see if one experiences a decrease in heart rate. The most commonly reported side effects with Gilenya include headache, flu, diarrhea, back pain, abnormal liver tests and cough. Women are strongly advised to use contraception to avoid pregnancy while taking Gilenya - and to continue contraception for two months following the discontinuation of the drug. The makers of Gilenya also strongly advise against breastfeeding. Adverse events with Gilenya include: a reduction in heart rate (dose-related and transient); infrequent transient AV conduction block of the heart; a mild increase in blood pressure; macular edema (a condition that can affect vision, caused by swelling behind the eye); reversible elevation of liver enzymes; and a slight increase in lung infections (primarily bronchitis). Other infections, including Herpes infection, are also of concern. A number of precautionary steps have been put in place to minimize risks and enable doctors to better evaluate and treat any possible adverse events. Within six months prior to starting Gilenya, patients should be given a baseline evaluation of any issues with the heart, lungs, liver, eyes and vision, as well as white blood cell count (which may indicate an existing infection). Present medications also need to be considered. Vitals (blood pressure, pulse, etc.) should be taken at baseline and periodically while on treatment. Since the drug causes a reduction in circulating white blood cells, individuals considering Gilenya also need to indicate if they have had chicken pox or a chicken pox vaccination recently; if so, they may need to wait before starting the medication. Individuals who test negative for the chicken pox virus may need to be vaccinated and delay starting Gilenya. Patients will also need to avoid vaccinations with live viruses. When beginning the drug, patients must be observed at a medical facility for the first six hours following the first dose. This is necessary as Gilenya may slow the heart rate, with the most significant drop usually occurring within the first six hours. While taking this drug, patients need to contact their doctor immediately if they experience any symptoms such as dizziness, tiredness, slow or irregular heartbeat, breathing difficulties, visual changes, or signs of an infection or liver problem. A Risk Evaluation and Mitigation Strategy (REMS) has been approved to provide information to patients as well as healthcare professionals on how to use the drug safely, along with possible risks that may occur. Novartis will conduct a five-year observational safety study to further evaluate any adverse events. They have also organized a voluntary registry for women who become pregnant while taking or within two months after discontinuing Gilenya to document possible effects. Dan U dao_nguu@... To: MSersLife From: wobbletowalk@...Date: Fri, 12 Aug 2011 16:37:43 -0700Subject: Re: DAN....Re: started Prednisone today Are you still taking LDN? Poor Whisper having to live with DOGS. lol I hope they get along well. What kind of testing has to be done for Gilenya? hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2011 Report Share Posted August 15, 2011 Well, all these drugs have their side effects. I was on Copaxone for several years and it had the least side effects but it didn't slow the disease progression at all. I'll have to see if the Gilenya benefits outweigh the side effects. Apart from the MonSter, I'm in relatively good health (normal blood pressure, don't smoke or drink, exercise six tmes a week). So, I would think I can tolerate the Gilenya. May main worry is further fatigue. I get tired out easily enough as it is. And, Gilenya could make it worse. Related to Gilenya, I was scheduled to have an appt. at UCSF this morning to take evaluation tests for the drug. But, the doctor is out today. So, I'm re-scheduled for Aug. 24.Dan U dao_nguu@... To: MSersLife From: wobbletowalk@...Date: Sat, 13 Aug 2011 19:24:49 -0700Subject: Re: DAN....Re: Gilenya Wow, Dan. Does it worry you to take this drug? It would worry the heck out of me. I was on Avonex for 5 years but haven't been on any other crab type drugs. I'm not trying to dissuade you. Okay? I'm just sharing my fears. hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Quote Link to comment Share on other sites More sharing options...
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