one month later…

Posted: November 21, 2013 in Tecfidera Blog

Been off tecfidera for about a month now and the painful blisters under my thighs have gone away and healed over… no doubt in my mind a reaction to tecfidera… also the daily migraines have gone away… no doubt in my mind also a reaction to tecfidera… so the jury is out on resuming tecfidera… those two reactions had a major impact on my quality of life and that, coupled with a lack of substantive evidence that it was halting progression, do not bode well for a return to tecfidera any time soon… plan to let the holidays play out and decide after first of new year… stay tuned…

tecfidera holiday…

Posted: October 29, 2013 in Tecfidera Blog

Been taking tecfidera for five months now and have decided to take a timeout to check a few things… while i have not had any flushing or gastric upset like many others, i have noticed two possible tecfidera reactions… first i have a marked increase in headaches… while i have always had weekly migraine episodes, since taking tecfidera they now seem almost daily… second i have noticed an irritation on the under sides of my thighs… small insect bite looking pustules with intense burning when sitting… have had this for months now and have tried many skin care products to no avail… think both are perhaps tecfidera related as i have read of these things from other tecfidera patients on facebook… only way to check these concerns is to take a “tecfidera holiday” to see if either abates… stay tuned…

blood test results…

Posted: September 20, 2013 in Tecfidera Blog

Been taking tecfidera for nearly four full months now and just got some new blood test results… my white blood count (WBC) was 6.7… up from 5.6 when last checked in july… normal range is between 4.0 and 11.5… my liver enzymes (ALT) were 55… much improved but still slightly elevated… they were 69 when checked in july… normal range is between 0 and 50… my doctor said my liver was “adjusting” to the tecfidera… both results better than expected and will check again in four months… stay tuned…

zippo… nada… nothing…

Posted: September 1, 2013 in Tecfidera Blog

Three months ago today I swallowed my first dose of Tecfidera not knowing how my body would react to this new and promising drug for multiple sclerosis… and today I am happy to report that I have not had any adverse reactions… zippo… nada… nothing… no flushing… no gastro upset of any kind… zippo… nada… nothing… while I have had some minor improvements in my day to day struggle with multiple sclerosis, it is not anything of significance… it is so very important to manage my expectations and not let myself get caught up in any placebo effects… will return to doctor this month to again check white blood count and liver enzymes… hopefully they will be within normal limits… while I am still hopeful that Tecfidera will improve my day to day quality of life, I will be quite happy if it simply puts the brakes on the progression of this insidious disease… all in all, I am pleased with my progress for the first 90 days… stay tuned…

some positive changes…

Posted: July 25, 2013 in Tecfidera Blog

Day 55 here and I am noticing some positive changes in balance and leg strength… nothing major mind you, but we all know how we notice little changes positive and/or negative… managing my expectations but still quite encouraged to notice even minor improvements at this stage… still no flushing or gastro upset… take with breakfast and dinner… apprx 7am and 7pm daily… stay tuned…

liver enzymes elevated…

Posted: July 19, 2013 in Tecfidera Blog

Just got a call from my doctor’s office saying that my liver enzymes (ALT) were slightly elevated at 69… normal range is between 0 and 50… nurse said the doctor wants to check it again in 6-8 weeks and that this is to be expected with tecfidera… so my white blood cell count (WBC) is down slightly and my liver enzymes (ALT) are up slightly in my 7th week of tecfidera… both clearly expected and to be followed more closely… stay tuned…

excellent doctor video…

Posted: July 19, 2013 in Tecfidera Blog

Here is a video link from the National Multiple Sclerosis Society where two Neurologists discuss Tecfidera… lots of good information… well worth watching… http://www.youtube.com/watch?v=FLgP4JuVUVY&feature=share

white blood count…

Posted: July 18, 2013 in Tecfidera Blog

Just got the test results from my primary care doctor and my blood count was within normal limits… a closer look at my white blood cell count showed that it was 5.6… down from 6.5 a year ago… but the range of normal is between 4.o and 11.5… so yes it is down some, perhaps from the tecfidera, but still within normal limits… now in my 7th week taking tecfidera and still no adverse reactions… still no flushing… still no gastric upset… have not really noticed any changes in my daily struggle with this physical challenge called multiple sclerosis, but continue to feel positive about long term possibilities… time will tell… stay tuned…

starting week six…

Posted: July 6, 2013 in Tecfidera Blog

Today is the start of week six for me… still no side effects… have not been taking aspirin… no flushing… no gastro upset of any kind… anxiety now fully gone… still take each dose with food but not as much food with morning dose… take evening dose after dinner… still feeling good about long term possibilities… wish there was more to report but it has now just become part of my day to day life… stay tuned…

starting week five…

Posted: June 28, 2013 in Tecfidera Blog

Starting week five and nothing noteworthy to report… made it through the much talked about week three and four with but one nauseous episode… most likely from not eating before the morning dose… now fully off aspirin… no flushing… no gastro upset of any kind… suppose this puts me in the 60% of patients who do not experience side effects with tecfidera… the anxiety is now gone and taking my pills with breakfast and dinner is part of my daily routine… still have appointment with primary care doctor next month and will get white blood count at that time… still watching for improvements but to date nothing significant to report… it does, however, feel very good to perhaps be finally taking something that could possibly slow down progression and result in some symptom improvement… stay tuned…

week four update…

Posted: June 23, 2013 in Tecfidera Blog

two days into week four now and have had but one reaction since starting… a nauseous day at the end of week three probably was caused by not eating fully before my morning dose… although I restarted the aspirin after the gastro upset, I do not think that was the reason and will stop the aspirin again tonight to try to prove it to myself… also received my next month pills via two day federal express a full week before running out… overall have not noticed any changes good or bad… have an appointment with my primary care doctor next month and will have my white blood cell count checked at that time… stay tuned…

week three changes…

Posted: June 21, 2013 in Tecfidera Blog

Just finishing up week three today and having first gastro reaction… feeling just a tad nauseous this afternoon… could be any number of reasons… first, many have reported on facebook that week three and four have been when gastro upset has hit them… second, did not eat much food before taking morning dose… and finally, have weaned myself off the aspirin this week (started with 325mg – titrated to half a 325mg pill – then to 81mg – then to nothing)… did notice some heartburn and acid reflux as week progressed but did not think much of it… today is first time feeling nauseous in three weeks… plan is to eat dinner and take aspirin before evening dose… stay tuned…

starting week three…

Posted: June 15, 2013 in Tecfidera Blog

Finished my first week of 240mg bid maintenance dose without incident… no flushing… no gastro upset… started week three today… have read a few facebook postings that have said week three and four have been tough for some… so yeah I still have some anxiety even though I have gone two weeks with zero side effects… will be taking half of a 325mg aspirin with each dose for the next few days and then titrate down to 81mg with each dose for two days… hope to be back on my 81mg qd aspirin regimen which I have taken for years by this time next week… only other thing noteworthy is dryer than normal skin… not sure if this has anything to do with tecfidera as it is not mentioned in possible side effects… treating topically with lotion but will pay closer attention over next few weeks… will continue to blog my progress… stay tuned…

maintenance dose…

Posted: June 8, 2013 in Tecfidera Blog

Started the 240mg bid maintenance dose today… continued my routine of taking with food and 325mg aspirin… other than my anxiety of starting a higher dose there were zero problems…  no flushing… no gastro side effects… most of us know that the clinical trials showed that approximately 40% had some reactions and that makes us wonder if we will have reactions… add to that some of the stories you can read on facebook of bad reactions and it can make you crazy… but it’s important to remember that if 40% had reactions then 60% did not have reactions… my anxiety is still there but beginning to think that the 60% group is where this tecfidera patient may land… should know in a week or so… stay tuned…

starter dose done…

Posted: June 7, 2013 in Tecfidera Blog

just finished the tecfidera starter dose… 120mg bid for seven days… took doses 12 hours apart… 7am and 7pm… took 325mg aspirin half hour before each dose… also ate some food before each dose… went entire week without any reactions… no flushing… no gastro upset… nothing… nada… zippo… start 240mg bid maintenance dose tomorrow morning… will blog progress again tomorrow… stay tuned…

day two went well…

Posted: June 2, 2013 in Tecfidera Blog

Day two went very well… ate before each dose… took the 325mg aspirin… waited half hour… then took the tecfidera… and had zero reactions… zero flushing… zero gastro upset… plan to continue taking the aspirin for the rest of the 120mg doses and then for the first week of the 240mg doses… if all goes well, the plan is to stop the aspirin with the start of my third week on tecfidera… call it placebo effect but it sure feels good mentally to be taking a medicine that may be helpful with little to no side effects… stay tuned…

day one – dose two…

Posted: June 1, 2013 in Tecfidera Blog

After successfully navigating my way through dose one this morning, it was time to get on with dose two… was still a tad anxious… had a very slight tingling first dose… wondering if it would happen again… had some dinner… took another 325mg aspirin to possibly help with flushing… waited half hour… then took dose two… three hours later ZERO reactions… let me repeat that… ZERO reactions… so the threshold was crossed and a new journey with a new medicine began today… need to find ways to share progress with others… hear their stories… knowledge is power… so my tecfidera blog will continue… the good… the bad… and the ugly… and today was all good… stay tuned…

day one – dose one…

Posted: June 1, 2013 in Tecfidera Blog

Woke up this morning just a tad anxious about my first dose of tecfidera… my mind traveled back some thirty years to what, in retrospect, was my first symptom of multiple sclerosis… clonus in my left ankle while building a sandbox for my kids… fast forward through years of chemo infusions, crab injections and angioplasty procedures… and now another threshold beckons me… a promising, albeit expensive, little green pill… having consumed everything available about tecfidera on the net, it was time to swallow my first dose… had some breakfast… took a 325mg aspirin to possibly mitigate flushing… waited half hour… opened the bottle… took the pill… and drank a 16oz bottle of water… about three hours later started to feel a very slight tingling in my face and arms… but did not feel hot… did not feel uncomfortable… and it did not last but a few minutes… temp, bp, pulse all normal… not sure it would have even been noticed by me had it not been anticipated because of things read on the net about possible reactions… no gastro reactions thus far… stay tuned…

the little green pill…

Posted: May 31, 2013 in Tecfidera Blog

bg12 pillWell my two month journey to get this little green pill is complete…

There were ups and there were downs… and lots of waiting while working through the process…

It all went well considering the tens of thousands of multiple sclerosis patients starting this new medicine at the same time…

Tomorrow, June 1, begins a new chapter in my 30 year fight with this insidious disease and all the challenges it presents…

Have tried many treatments over the years and must say this one seems to me to offer the most promise with the least risk…

FedEx delivered the tecfidera today… the starter pack… four intriguing boxes… four small bottles… one for the 120mg bid dose for 7 days… the other three for the 240mg bid maintenance dose… 7 day doses with 14 pills in each bottle… plan to start saturday morning… plan to take pills after breakfast and dinner to minimize possible gastro side effects… and plan to take a 325mg aspirin a half hour before to minimize possible flushing side effects… doing all this with no expectations… but will continue to blog my progress and my tecfidera musings… the good… the bad… the ugly… about this new $55,000 a year pill for multiple sclerosis… stay tuned…

Made a call to US BioServices (877-654-7810) first thing today… got though right away… no waiting… spoke to another very nice representative who, after asking me my height and weight and drug allergies, told me that they would be sending tecfidera at no cost to me through end of year… they said it would ship fedex from texas today and should arrive in two days… another totally amazing unexpected outcome…

After waiting patiently for ten days, missed a call from US BioServices (855-755-9413) early this Saturday morning… the three day Memorial Day holiday weekend… they left a very short message to call back on Tuesday… could not believe they called on a holiday weekend and that my iPhone was upstairs while eating breakfast downstairs… guess this just adds another three days to my tecfidera journey… stay tuned…

After waiting ten days with no response, decided to call MS Active Source (855-474-3065) for an update… was on hold for 30 minutes before getting through to a representative who again pulled up my file on their computer… they said that they have been overwhelmed with tecfidera cases and that they were doing their best to process them… after asking me a few basic financial questions, they said they would forward my case to their research team who would get back to me asap… the explanations all seemed reasonable so my tecfidera journey is on hold until they call me… stay tuned…

Got a call from Accredo Pharmacy (800-803-2523) with co-payment information… was told my co-pay for the 30 day tecfidera starter pack would be $2200… after picking myself up off the floor, they explained that it was 120mg bid for 7 days and 240mg bid thereafter… as my head was crunching the costs, they told me of a co-pay assistance program from MS Active Source (855-474-3065)… decided to hold up the order and call about possible co-pay assistance… after three calls, with waiting times of 5 minutes – 10 minutes – and finally 20 minutes, got to speak with a representative who pulled up my file on their computer… after asking me a few questions, they said that, given my insurance plan, they would start a process to get me the tecfidera at no cost through end of year… after picking myself up off the floor again, they said they would get back to me in a few days… a totally amazing unexpected outcome…

Got a call from insurance company saying that my prior authorization request for tecfidera had been received from my doctor and had been approved for payment… if it was possible for a multiple sclerosis patient to do back flips that is what would be happening right now… amazing outcome… 24 hour turn around time… doing the happy dance… called Accredo Pharmacy (800-235-8498) with the news and was told that they would re-start my request in their computer… they said it would take 3-5 business days to get the co-pay information before they could send me the prescription… my tecfidera journey continues…

Called my insurance company and spoke to a very nice customer service representative… they confirmed that tecfidera had recently been added to their formulary for multiple sclerosis patients… they explained the co-payment structure of my pharmacy plan… 33% during phase one… 16% during phase two… 5% during phase three… phase three being the catastrophic phase… and 55K annual tecfidera cost puts me there rather quickly… they then opened a prior authorization case for me and gave me a case number… they said they would fax the prior authorization to my doctor and would respond within 72 hours of receiving the needed information from my physician… after thanking them for their help, it was time to call my doctor to let them know a fax would be coming from insurance company… the nurse assured me they would handle it promptly… all in all a better than expected outcome… stay tuned…

Spoke with a support person from Accredo Pharmacy (800-235-8498) who told me that my claim was rejected by my insurance company because it did not have a prior authorization… will now need to contact my insurance company and find out what needs to be done to obtain a prior authorization… my tecfidera adventure continues…

Been a week now with no call back from Biogen, so took some time today to check on progress… talked to a support person from Accredo Pharmacy (800-235-8498) about tecfidera order… they apparently fill the orders for Biogen… was told my order had been assigned for processing… they are checking with my insurance company about coverage… said they will get back to me asap… the waiting game continues…

Called Biogen to confirm receipt of fax from doctor for tecfidera… they acknowledged receipt and said it is in queue to be processed with many other requests… they said someone will call… happy with my progress just two weeks post FDA approval… stay tuned…

Got a call from the neurologist’s nurse this morning to tell me the doctor agreed to prescribe tecfidera for me… asked nurse if I could drop off the forms that needed to be faxed to Biogen and she said yes… dropped what I was doing and delivered the forms to the office… nurse will get doctor to sign and fax them to Biogen… next step will be to get insurance to cover the costs… 55K yearly… thus far it is not on the formulary but it was just approved by the FDA… the journey continues…

Sent an e-mail to the neurologist today… said now that the FDA had approved BG12, I would like to try tecfidera… said I knew it was approved for relapsing remitting but the clinical trials showed some impressive improvements for some really bad off patients… told doctor that I had been waiting 30 years for a medicine like this, the first to have little if any side effects and no box warnings… said that I had downloaded the paper work from the Biogen website that needed to be faxed to get the process going and have the prescription shipped from a specialty pharmacy… wanted to make sure my doctor knew I was serious about this request… waiting to hear back from neurologist… stay tuned…

Got a call back from the neurologist’s nurse saying that the doctor said tecfidera was not approved for my type of multiple sclerosis… She said it was approved for relapsing remitting not primary progressive… Told her I knew that and to tell the doctor I still want an off label prescription for tecfidera… Waiting for call back from doctor…

Stopped by neurology desk today, after a primary care doctor appointment, to get the ball rolling and make a request for a tecfidera prescription… Hope to hear back from doctor in few days…

After years of successful clinical trials, the FDA has finally approved BG12 for multiple sclerosis… now known as Tecfidera… and available at $55,000 a year… let’s get started…