Finally I think some pressure is being put on drug manufacturers to manage costs. There was a recent report out of the UK saying that the cost benefit analysis of everolimus, a new advanced breast cancer drug, led to the decision by the National Institute of Health and Clinical Excellence (NICE) to not recommend its use.
Then another study in the US shows that the cost of drugs for Hepatitis C and Rheumatoid Arthritis account for more than 50% of the costs to treat those patients.
"In the first study, researchers found that despite the overall decrease in Hep C specialty drug use from 2008 to 2011 (17.2 percent vs. 14.1 percent), the Hep C specialty pharmacy total cost of care compound annual growth rate (CAGR) was 15 percent from 2008 to 2011. Specialty drug costs accounted for 35 percent ($13,332 of $38,055) of the total cost of Hep C care in 2008 and was substantially higher at 52.6 percent in 2011 ($30,415 of $57,799), with a CAGR of 31.8 percent.
In the second study, researchers found that although RA drug use remained steady from 2008 to 2010 (34.6 percent vs. 35.4 percent), the total cost of care CAGR was 7.3 percent from 2008 to 2010. All other medical costs were $11,252 in 2008 and increased to $13,710 in 2010, with a CAGR of 10.4 percent. Combined RA medical and specialty drug costs accounted for $16,218 (54.7 percent) of $29,652 total cost of care in 2008. In 2010, total cost of care was slightly lower at 53.0 percent ($18,098 of $34,163), with a CAGR of 5.6 percent."
'"As the pipeline of expensive specialty drugs continues to grow, we need to stay alert to cost of care trends to make sure patients and plan sponsors receive the best value and can manage the increasing cost burden these treatments bring,"...'
We can't expect insurance companies to pick up the costs of these expensive drugs. Everolimus was priced at twice the amount of Herceptin. Nor can we expect patients to pick up increasing portions of the price. One of my drugs is $95/month co-pay.
This is an issue which warrants more investigation and pressure. Drug manufacturers have blamed research costs for their increasing product pricing. But has pressure been put back on them to reduce their costs in production of drugs. Perhaps they need to take a long hard look at their business practices. As more studies reveal the cost benefit discrepancies, somethings need to change. And it should not be at the expense of quality of life or of the lives of patients.
Showing posts with label prescriptions. Show all posts
Showing posts with label prescriptions. Show all posts
Oral Parity And What Its All About
Oral parity is (in my non medical person, layman English with a touch of chemobrain and fibro fog) where an insurance company covers an intravenous medication as a hospital visit but in a pill form covers it as a pharmacy benefit and only covers a smaller portion - $2300/month co-pay in one example.
The insurance companies like it this way because its one less thing to cover. From the doctor and patient perspective its a barrier to patients receiving needed treatment. There is a big "who-haw" going on about this in the insurance world as well.
I have never understood why pharmacy benefits are so different and so separate from other medical coverage. And don't get me started on vision and dental care. These aren't optional things in maintaining good health and should all be covered equally.
But this oral parity thing should not be lumped into the same category as other medications. It highlights the problem with the pharmaceutical industrygouging over charging the American patient to 'cover their research costs and high salaries and huge employee perks still offered to all of their employees'.
If you get a new brand name prescription drug, it comes in lovely little packaging, probably has a massive marketing campaign attached to it. I had one that came with the pills were color coordinated (or vice versa) with the bottle's labeling. Another one, have more designer time put into packaging that was needed. Finally, I have one that comes with a 20 minute instructional DVD on how to apply and dispose of the patch in your introductory package from your doctor which includes a coupon to cover the copay on your first month's treatment.
In the marketing world, this is all part of branding. A new product is introduced and all parts of its packaging, positioning, pricing come into play. A marketing plan includes four P's - product, price, place, and promotion.
A target sales price tells a lot about a product. If a prescription cost $5 retail, do you think - why is it so cheap? Does it work? If a brand name orange juice is $3.99/gallon and another of the exact same product is $1.00/gallon. Would buy the cheaper one simply on price or do you think it must be lower quality and read all the packaging to see if its from concentrate? If a prescription costs $5000/month do you think 'It must work really well if its that expensive!'. Pricing implies a lot.
Next is packaging. If that orange juice comes in a carton where you can't see the product vs one in a fancy glass bottle, what do you think? Is there settling in the glass bottle that is hidden in the carton? Do you want to see the juice? Is the fancy glass bottle making it 'greener' or give more value? Same with pills, are they in a jar or those stupid blister packs (that are hard to open with RA)? Is the box with the blister pack or the jar packaged in a nice little box with all sorts of packaging and promotion and benefits of the medication as well as the warnings.
Finally, positioning is where do you want the product to have the appeal? If they show women of all ages and races in their ads for a bone density product or should they only show little old ladies who don't have the 'dowager' hump because that is what the product is supposed to avoid. They make the packaging and price and add it with the positioning to make the branding to make the high price bearable.
This takes us back to the huge problems inherent in the medical world where insurance companies and providers are making decisions. Oral parity is only a symptom.
The insurance companies like it this way because its one less thing to cover. From the doctor and patient perspective its a barrier to patients receiving needed treatment. There is a big "who-haw" going on about this in the insurance world as well.
I have never understood why pharmacy benefits are so different and so separate from other medical coverage. And don't get me started on vision and dental care. These aren't optional things in maintaining good health and should all be covered equally.
But this oral parity thing should not be lumped into the same category as other medications. It highlights the problem with the pharmaceutical industry
If you get a new brand name prescription drug, it comes in lovely little packaging, probably has a massive marketing campaign attached to it. I had one that came with the pills were color coordinated (or vice versa) with the bottle's labeling. Another one, have more designer time put into packaging that was needed. Finally, I have one that comes with a 20 minute instructional DVD on how to apply and dispose of the patch in your introductory package from your doctor which includes a coupon to cover the copay on your first month's treatment.
In the marketing world, this is all part of branding. A new product is introduced and all parts of its packaging, positioning, pricing come into play. A marketing plan includes four P's - product, price, place, and promotion.
A target sales price tells a lot about a product. If a prescription cost $5 retail, do you think - why is it so cheap? Does it work? If a brand name orange juice is $3.99/gallon and another of the exact same product is $1.00/gallon. Would buy the cheaper one simply on price or do you think it must be lower quality and read all the packaging to see if its from concentrate? If a prescription costs $5000/month do you think 'It must work really well if its that expensive!'. Pricing implies a lot.
Next is packaging. If that orange juice comes in a carton where you can't see the product vs one in a fancy glass bottle, what do you think? Is there settling in the glass bottle that is hidden in the carton? Do you want to see the juice? Is the fancy glass bottle making it 'greener' or give more value? Same with pills, are they in a jar or those stupid blister packs (that are hard to open with RA)? Is the box with the blister pack or the jar packaged in a nice little box with all sorts of packaging and promotion and benefits of the medication as well as the warnings.
Finally, positioning is where do you want the product to have the appeal? If they show women of all ages and races in their ads for a bone density product or should they only show little old ladies who don't have the 'dowager' hump because that is what the product is supposed to avoid. They make the packaging and price and add it with the positioning to make the branding to make the high price bearable.
This takes us back to the huge problems inherent in the medical world where insurance companies and providers are making decisions. Oral parity is only a symptom.
I am not a patient patient
I am not a patient patient at the best of times. Overnight delivery has spoiled me (and most Americans) to expect instant gratification. To quote Violet from Willy Wonka, "I want it now!"
On Friday I went to see my pain doctor who is in charge of relieving me of pain, as opposed to cancer cootie detection and other specialties. The biggest news I could share with him was that my rheumatologist, to whom he referred me, is leaving the hospital to go to another one.
He suggested, his usual poking, prodding and contortions (does it hurt when you do this?), that I should increase my dose of my pain patches back up to 10 mcg/hr and then suggested I see him again in six months. I made a face and he changed it to four months. (Who says you can't make faces at your doctor or that I might be too old for it?)
There are issues with increasing my pain patches back up to 10 from 5. The upside is less pain. The downside is: the price. Can you say $95 for a four week dose? Ouch.
I was getting the patches through mail order because I used to be able to save money and pay $95 for three months. But the law has changed here and they in the evil addictive/street value class and I can only get one month's worth at a time. I understand the principle behind it that people can be addicted, blah, blah, blah. But it hurts my wallet with the copay. I have a friend who gets the 20 dose and she pays around $20/month.
I do have very good health insurance but every so often I get dinged by something like this. For instance my insurance did not cover a chemotherapy wig. But I have a $5000/year out of pocket maximum which does not include pharmacy expenses. But it means I will not go bankrupt paying medical bills. In the end, I will be paying over $1000 to be relatively pain free each year. But I think its worth it.
There is another downside to these pain patches. I have a reaction to the adhesive. Of course I do. I don't know if its an allergy or what. I have to put on cortisone anti itch stuff on my skin before I can put on a patch which means waiting an hour.
I have gotten completely off track of my being a patient patient so allow me to haul my train of thought back. When the doctor asked which pharmacy I wanted my new prescription to go to, I said the local pharmacy so I could go fill it that day. BUT IT WAS OUT OF STOCK. Being a weekend it won't be there until after 2PM on Monday. I want it NOW! I'll just suck it up and live on Tramadol until then.
On Friday I went to see my pain doctor who is in charge of relieving me of pain, as opposed to cancer cootie detection and other specialties. The biggest news I could share with him was that my rheumatologist, to whom he referred me, is leaving the hospital to go to another one.
He suggested, his usual poking, prodding and contortions (does it hurt when you do this?), that I should increase my dose of my pain patches back up to 10 mcg/hr and then suggested I see him again in six months. I made a face and he changed it to four months. (Who says you can't make faces at your doctor or that I might be too old for it?)
There are issues with increasing my pain patches back up to 10 from 5. The upside is less pain. The downside is: the price. Can you say $95 for a four week dose? Ouch.
I was getting the patches through mail order because I used to be able to save money and pay $95 for three months. But the law has changed here and they in the evil addictive/street value class and I can only get one month's worth at a time. I understand the principle behind it that people can be addicted, blah, blah, blah. But it hurts my wallet with the copay. I have a friend who gets the 20 dose and she pays around $20/month.
I do have very good health insurance but every so often I get dinged by something like this. For instance my insurance did not cover a chemotherapy wig. But I have a $5000/year out of pocket maximum which does not include pharmacy expenses. But it means I will not go bankrupt paying medical bills. In the end, I will be paying over $1000 to be relatively pain free each year. But I think its worth it.
There is another downside to these pain patches. I have a reaction to the adhesive. Of course I do. I don't know if its an allergy or what. I have to put on cortisone anti itch stuff on my skin before I can put on a patch which means waiting an hour.
I have gotten completely off track of my being a patient patient so allow me to haul my train of thought back. When the doctor asked which pharmacy I wanted my new prescription to go to, I said the local pharmacy so I could go fill it that day. BUT IT WAS OUT OF STOCK. Being a weekend it won't be there until after 2PM on Monday. I want it NOW! I'll just suck it up and live on Tramadol until then.
Coping, cooperating, and crankiness
I have had enough of serious blog posts on financial stuff and now am back to my normal (whatever that may be) level of zaniness in the crazy world of my health.
Monday I had a regular six month check up with the dentist. Something I hate/fear/detest more than almost anything - its right up there with those little medical adventures that might make me feel a 'twinge'. At the appointment, it was decided that I need two bonds which are relatively painless and quick and could help prevent future issues. I am all about my long term health (or what is left of it) so opted to have them. It was also pointed out that I have two older fillings on a single tooth which are stressing the tooth and cause it to start to crack. It was also decided it was in my best interest for what's left of my long term health to have them removed and replaced with a new white filling. Lo and behold, the dentist actually had a cancellation for yesterday morning at 830. I rearranged my schedule for yesterday morning and went for the appointment.
That was one of the worst dental appointments I have had in decades. First, I needed Novocaine on the top right and top left front, as well as the middle top right. Novocaine went in and the dentist got called away to check on another patient. The assisting tech decided to be proactive and put the clamp on my tooth to get ready for the rubber dam. Well that hurt/was uncomfortable/made me cringe and my stomach hurt. Not a good start. She took it off and tried a second one. The dentist returned and said to wait until the last minute. That's okay I was stressed already.
Then the old fillings took forever to drill off. Even the dentist said it did. She started explaining in detail that I didn't need. When she was done drilling, then she started putting in little wedges to rebuild my tooth and held it all in place with another clamp. She then moved on to the bonds but the drilling fun had taken so long I needed more novocaine. Then I went to work, with a stressed out stomach, feeling like I had a frozen face. When I got to work, I was told I didn't look very good.
That was on top of the continuing fight to get my new (old) pain patches for my RA/fibro. I was on the 5mcg pain patches but my doctor thought I should increase my dose to 10mcg because of my pain levels. The 5mcg ones I got from the mail order pharmacy for 3 months at a time with a paltry co-pay of $95. My doctor sent in a new prescription for the 10 mcg which showed up in a one month increment for the same paltry co-pay. I called the mail order pharmacy and was told they needed a new 90 day prescription. Then I called my doctors office and asked them to change the prescription to a 90 day supply.
Then I had an allergic reaction to thedamn pain patches. When I took off the patch, I had a perfect rectangle of rash which lined up exactly with the patch's adhesive. I called my doctors office again and asked them what were my options and was told to either try going with out the patches (which doesn't work unless I want to live on pain pills) or putting cortisone cream on my skin ahead of time to prevent the reaction.
I waited for thedamn rash to go away and tried again with the cortisone lotion. So far its working. Then another prescription showed up in the mail with its paltry $95 co-pay for one month of patches. And a note that said state law prevents them from sending more than 30 days at a time. I called the pharmacy again and was told it was by law but they weren't sure if why I had received 90 day supply of the 5mcg patches. I called my doctor's office again and asked for the 5mcg dose in a 90 day supply. Then I received another email saying a new prescription had been processed and will be sent to me. All I know is that it will have a $95 co-pay (that would be #3 this month) but I hope its for 3 months of the right patches that won't give me a rash.
In the meantime, back at the ranch so to speak, I have been coping with increasing pain, fatigue - where getting into my pjs at 7 pm sounds like a good idea, and trying to live a 'normal' life.
All this has led to some crankiness. And with my new RA meds, I have had to give up alcohol so I can't even have a glass of wine to cope. Crankiness is ensuing because the scale has not cooperated in making me a skinny alcohol free pain patient.
Monday I had a regular six month check up with the dentist. Something I hate/fear/detest more than almost anything - its right up there with those little medical adventures that might make me feel a 'twinge'. At the appointment, it was decided that I need two bonds which are relatively painless and quick and could help prevent future issues. I am all about my long term health (or what is left of it) so opted to have them. It was also pointed out that I have two older fillings on a single tooth which are stressing the tooth and cause it to start to crack. It was also decided it was in my best interest for what's left of my long term health to have them removed and replaced with a new white filling. Lo and behold, the dentist actually had a cancellation for yesterday morning at 830. I rearranged my schedule for yesterday morning and went for the appointment.
That was one of the worst dental appointments I have had in decades. First, I needed Novocaine on the top right and top left front, as well as the middle top right. Novocaine went in and the dentist got called away to check on another patient. The assisting tech decided to be proactive and put the clamp on my tooth to get ready for the rubber dam. Well that hurt/was uncomfortable/made me cringe and my stomach hurt. Not a good start. She took it off and tried a second one. The dentist returned and said to wait until the last minute. That's okay I was stressed already.
Then the old fillings took forever to drill off. Even the dentist said it did. She started explaining in detail that I didn't need. When she was done drilling, then she started putting in little wedges to rebuild my tooth and held it all in place with another clamp. She then moved on to the bonds but the drilling fun had taken so long I needed more novocaine. Then I went to work, with a stressed out stomach, feeling like I had a frozen face. When I got to work, I was told I didn't look very good.
That was on top of the continuing fight to get my new (old) pain patches for my RA/fibro. I was on the 5mcg pain patches but my doctor thought I should increase my dose to 10mcg because of my pain levels. The 5mcg ones I got from the mail order pharmacy for 3 months at a time with a paltry co-pay of $95. My doctor sent in a new prescription for the 10 mcg which showed up in a one month increment for the same paltry co-pay. I called the mail order pharmacy and was told they needed a new 90 day prescription. Then I called my doctors office and asked them to change the prescription to a 90 day supply.
Then I had an allergic reaction to the
I waited for the
In the meantime, back at the ranch so to speak, I have been coping with increasing pain, fatigue - where getting into my pjs at 7 pm sounds like a good idea, and trying to live a 'normal' life.
All this has led to some crankiness. And with my new RA meds, I have had to give up alcohol so I can't even have a glass of wine to cope. Crankiness is ensuing because the scale has not cooperated in making me a skinny alcohol free pain patient.
European drug pricing
I almost titled this post 'European Drug Dealing' but thought it might have some bad connotations as I am not that kind of girl. Creative drug pricing is flourishing in Europe due financially strapped health care systems. These European countries are forcing drug companies to compromise their pricing structure. Hmmm.... so guess who still pays those prices? The US.
"Many of today's complicated pricing arrangements have their origins in pioneering work by Britain's National Institute for Health and Clinical Excellence (NICE), which was set up in 1999 to systematically assess the cost-effectiveness of new drugs.
Its refusal to accept some pricey products has angered patients, and the tough line has forced drugmakers to find novel ways to make medicines affordable - either by offering discounts or making payment conditional on measurable benefits.
It is an approach now being adopted from Spain to Poland, resulting in a patchwork of schemes that can cause frustration among doctors struggling to assess the true cost of treatments."
I strongly believe that drugs needed to be assessed for their cost effectiveness but not in the sense that they should be with held from patients because of their cost but instead so that drug companies restructure their pricing costs. Yes I understand research is expensive but the pharmaceutical industry still offers incredible hiring packages and perks to employees (I have friend who just got a job in biotech and her salary and perks are amazing in today's standards - they are reminiscent of the free spending 1990's.) But I digress.
Drug pricing should not be the problem of the patients or the insurance companies or state run medical organizations. Pricing should be the problem for the manufacturer.
""The 10,000-foot view is that we just follow the science and do what's right for patients, and then figure out a commercial model that can work," Hal Barron, head of global product development, said in a recent interview."
If the science takes them to the right direction for the patient, the drug companies also need to figure out how to make it commercially viable and accept that there need to be price ceilings for drugs. Something that costs $10,000/month, even though it might be lifesaving, is out of line.
I have two recent examples where I got brand name drugs and was appalled at all the packaging and design that went into them. My brand name Femara came in a little bottle which a fancy label and the bottle was the exact color of the pills. I am sure there were several marketing programs done to figure out what color the pill and bottle and label should be. That's not necessary. Just give us plain pills that we can distinguish from our other pills in a regular prescription bottle and we will be happy.
This summer I was switched to Butrans pain patch which provide a week relief from pain. It came with a DVD with a 20 minute video on how and where to apply the patch - on your skin near your collar bone - they could have done it with a little diagram. Each months' supply consists of a 6"x6"x1" cardboard box which contains the four patches, a giant folder of discard packets, and 1/4" think folded up instruction/side effect sheet. Why can't they send me 12 patches with one folder of discard packets and one instruction/side effect sheet for three months instead of three big boxes? Packaging!
Tools to manufacturers in setting pricing are packaging, image, product, and more. Each product has an image they want to project and it is defined by pricing, packaging, promotion. Drug manufacturers do this as well as most other manufacturers. I don't think they need to waste money on that. They should focus their efforts on putting the products out as quickly as possible with the lowest possible costs.
So now we have an entire continent forcing drug companies to make deals to sell their products. We need some of that here. More change is needed in the health care system to change problems such as this one of drug pricing.
"Many of today's complicated pricing arrangements have their origins in pioneering work by Britain's National Institute for Health and Clinical Excellence (NICE), which was set up in 1999 to systematically assess the cost-effectiveness of new drugs.
Its refusal to accept some pricey products has angered patients, and the tough line has forced drugmakers to find novel ways to make medicines affordable - either by offering discounts or making payment conditional on measurable benefits.
It is an approach now being adopted from Spain to Poland, resulting in a patchwork of schemes that can cause frustration among doctors struggling to assess the true cost of treatments."
I strongly believe that drugs needed to be assessed for their cost effectiveness but not in the sense that they should be with held from patients because of their cost but instead so that drug companies restructure their pricing costs. Yes I understand research is expensive but the pharmaceutical industry still offers incredible hiring packages and perks to employees (I have friend who just got a job in biotech and her salary and perks are amazing in today's standards - they are reminiscent of the free spending 1990's.) But I digress.
Drug pricing should not be the problem of the patients or the insurance companies or state run medical organizations. Pricing should be the problem for the manufacturer.
""The 10,000-foot view is that we just follow the science and do what's right for patients, and then figure out a commercial model that can work," Hal Barron, head of global product development, said in a recent interview."
If the science takes them to the right direction for the patient, the drug companies also need to figure out how to make it commercially viable and accept that there need to be price ceilings for drugs. Something that costs $10,000/month, even though it might be lifesaving, is out of line.
I have two recent examples where I got brand name drugs and was appalled at all the packaging and design that went into them. My brand name Femara came in a little bottle which a fancy label and the bottle was the exact color of the pills. I am sure there were several marketing programs done to figure out what color the pill and bottle and label should be. That's not necessary. Just give us plain pills that we can distinguish from our other pills in a regular prescription bottle and we will be happy.
This summer I was switched to Butrans pain patch which provide a week relief from pain. It came with a DVD with a 20 minute video on how and where to apply the patch - on your skin near your collar bone - they could have done it with a little diagram. Each months' supply consists of a 6"x6"x1" cardboard box which contains the four patches, a giant folder of discard packets, and 1/4" think folded up instruction/side effect sheet. Why can't they send me 12 patches with one folder of discard packets and one instruction/side effect sheet for three months instead of three big boxes? Packaging!
Tools to manufacturers in setting pricing are packaging, image, product, and more. Each product has an image they want to project and it is defined by pricing, packaging, promotion. Drug manufacturers do this as well as most other manufacturers. I don't think they need to waste money on that. They should focus their efforts on putting the products out as quickly as possible with the lowest possible costs.
So now we have an entire continent forcing drug companies to make deals to sell their products. We need some of that here. More change is needed in the health care system to change problems such as this one of drug pricing.
My incompetence has reached new levels
I am a mental midget sometimes and I am very aware of this. I know I am incapable of somethings without assistance. There are many things actually - parallel parking, dealing with crawly things, opening new bottles, reaching tall things, understanding the things under the hood of the car, and the list goes on. The biggest one on the list is taking my pills properly. Yep, I have counting and memory problems.
I clearly can claim chemo brain but that is only good for the past 4.5 years of my life. Prior to that I took my thyroid medication daily for 2.5 decades. I started having those little conversations daily with myself - 'did I take my damn pill?' I was probably 80% accurate at that point. Then I discovered the joys of the daily pill box where I could combine all my pills into little daily segments easily compartmentalized. Then I was told I could not take my thyroid pill within three or four hours of my calcium pills and it had to be taken 1 hour before eating. Then things started to get complicated.
I started adding more pills - more vitamins, take calcium three times daily, take some pills at night and some in the morning an hour after taking my thyroid pill. This has varied over the years. I had two pill boxes for a while. One for morning and late morning and one for evening. My current configuration is one pill box with two little pills to take inthe morning and then take the rest sometime between dinner and bed.
This system works well if I sit down on Saturday afternoon surround by four prescription bottles and five vitamin bottles and one OTC medication plus my husbands additional prescription and extra vitamin. If I do not sit down on Saturday I have to do it all when I am groggy on Sunday morning so I prefer the Saturday option.
Last Saturday I forgot. Damn. Sunday morning I realized this upon waking up. I grabbed my two prescription bottles that I needed to take. I know I took one but can't remember if I took both. Oops. Wednesday morning I realized I forgot to take Tuesday night's pills. That happens. I have lived through that. Friday morning I realized I was some how on Saturday pills. Friday's compartment was empty. I have no idea. I must have taken a double dose - including the morning pills for Friday at the wrong time.
Now it is Saturday morning and I just took my two prescriptions out of their bottles because I took Saturday's on Friday. But I still have pills to take tonight. I meant to take Tuesday's pills last night but forgot. So I am a day behind on some, a day ahead on others, and maybe equal on one. But I didn't kill myself (so far) by messing these up. I did have a day this week where I was incredibly sleepy so maybe that is when I double dosed my self. One of them has sleepiness as a side effect. If I miss a day on all of them its okay. Double doses are not a good idea but okay. But if I double dosed and then forgot I am even.
So maybe we will had management of prescriptions and other medications to the category of things where I am incompetent.
I clearly can claim chemo brain but that is only good for the past 4.5 years of my life. Prior to that I took my thyroid medication daily for 2.5 decades. I started having those little conversations daily with myself - 'did I take my damn pill?' I was probably 80% accurate at that point. Then I discovered the joys of the daily pill box where I could combine all my pills into little daily segments easily compartmentalized. Then I was told I could not take my thyroid pill within three or four hours of my calcium pills and it had to be taken 1 hour before eating. Then things started to get complicated.
I started adding more pills - more vitamins, take calcium three times daily, take some pills at night and some in the morning an hour after taking my thyroid pill. This has varied over the years. I had two pill boxes for a while. One for morning and late morning and one for evening. My current configuration is one pill box with two little pills to take inthe morning and then take the rest sometime between dinner and bed.
This system works well if I sit down on Saturday afternoon surround by four prescription bottles and five vitamin bottles and one OTC medication plus my husbands additional prescription and extra vitamin. If I do not sit down on Saturday I have to do it all when I am groggy on Sunday morning so I prefer the Saturday option.
Last Saturday I forgot. Damn. Sunday morning I realized this upon waking up. I grabbed my two prescription bottles that I needed to take. I know I took one but can't remember if I took both. Oops. Wednesday morning I realized I forgot to take Tuesday night's pills. That happens. I have lived through that. Friday morning I realized I was some how on Saturday pills. Friday's compartment was empty. I have no idea. I must have taken a double dose - including the morning pills for Friday at the wrong time.
Now it is Saturday morning and I just took my two prescriptions out of their bottles because I took Saturday's on Friday. But I still have pills to take tonight. I meant to take Tuesday's pills last night but forgot. So I am a day behind on some, a day ahead on others, and maybe equal on one. But I didn't kill myself (so far) by messing these up. I did have a day this week where I was incredibly sleepy so maybe that is when I double dosed my self. One of them has sleepiness as a side effect. If I miss a day on all of them its okay. Double doses are not a good idea but okay. But if I double dosed and then forgot I am even.
So maybe we will had management of prescriptions and other medications to the category of things where I am incompetent.
I really need more math
I had a doctor's appointment yesterday that resulted in the need for more math. I am currently weaning off one back pain medication.This is a six week process. I used to take one pill twice a day but to wean off it:
(I am a little confused where I am in this but I think I am switching from half a pill every day to half a pill every other day.)
This is in addition to my thyroid pills where I take a whole pill every day but Mondays and Fridays when I take half a pill.
So my doctor yesterday said in two weeks when I am done with the half a pill every other day of the one I am weaning off, I should add a new medication and start weaning off another medication where for a week I take one pill a day instead of two.
I am confused. I need to take notes. I put reminders into my phone. I use two daily pill boxes to keep track. I spend time every Saturday afternoon filling my pill boxes.
Maybe I don't need math. Maybe I need a brain.
- I have two weeks of one pill once a day
- then two weeks of half a pill once a day
- then two weeks of half a pill every other day.
(I am a little confused where I am in this but I think I am switching from half a pill every day to half a pill every other day.)
This is in addition to my thyroid pills where I take a whole pill every day but Mondays and Fridays when I take half a pill.
So my doctor yesterday said in two weeks when I am done with the half a pill every other day of the one I am weaning off, I should add a new medication and start weaning off another medication where for a week I take one pill a day instead of two.
I am confused. I need to take notes. I put reminders into my phone. I use two daily pill boxes to keep track. I spend time every Saturday afternoon filling my pill boxes.
Maybe I don't need math. Maybe I need a brain.
I did not get the math class
I did not get the thyroid cancer math class. I am sorry. I can't remember it all. I get confused. I fake it and pretend I understand. But I don't.
I am blaming a combination of chemo brain and the fact that when I had thyroid cancer the world was different my doctors just gave me a Synthroid (synthetic thyroid hormone) dose and never explained numbers. Every so often they would look at my blood test results and say 'hmmm, let's adjust your dose'. Part of that was because that back then Synthroid was not available in a million different dose levels. I think it was just 100 mcg or 200 mcg. Now its available in doses of everything from 37.5, 50, 75, 87, 100, 125, 150, 175, 200 mcg and many more.
At my last appointment with my endocrinologist, my TSH level was a little too low. It was .22 and should be at the low end of the normal range of .35 to 4.5. So instead of taking 1/2 a pill once a week my dose was reduced by another 1/2 pill a week and as a result my TSH level went up to .53 which is in the acceptable range. When they decrease your dose, your levels go up - just to make it confusing.
My doctor pulled out a calculator to figure out what the dose should be. Should I go down to 125 mcg with a half pill once a week or go with 137 mcg and take a half pill twice a week? This way I am getting an average of 117.4 mcg each day. If I went to 125 mcg and took 1/2 a pill once a week I would be at 116.1 mcg which she thought was too low. She asked me if I used a daily pill box before deciding what the dose should be.
Then there are T3 and T4 levels that need to be monitored and kept to barely detectable levels so I don't remember those numbers either. These are monitored because if they are detectable it could be a sign of recurrence (I think).
If you go to the thyroid cancer message boards there are all these people asking about changing TSH, T3, and T4 levels and another test that I cant remember. They ask about why they go up and down, should they change their drug levels or change their doctors or change something else. What happens when you gain or lose weight or get pregnant or go vegetarian or all sorts of things. And its all about the numbers. I never comment on those discussions. I read them and think 'some day this will all make sense'.
But it appears it will never make any more sense than professional football rules to me. I have both explained to me a million times and I still don't get it. Back when I was in my 20's. I would get together with a friend for drinks often on Monday nights. We would sit at the bar and the bartender and some nice men would always explain foot ball too us. We lied and pretended we understood but never really did.
I think I am okay with this. I get my blood tests. My doctors explain them to me. Its one less thing to worry about.
I am blaming a combination of chemo brain and the fact that when I had thyroid cancer the world was different my doctors just gave me a Synthroid (synthetic thyroid hormone) dose and never explained numbers. Every so often they would look at my blood test results and say 'hmmm, let's adjust your dose'. Part of that was because that back then Synthroid was not available in a million different dose levels. I think it was just 100 mcg or 200 mcg. Now its available in doses of everything from 37.5, 50, 75, 87, 100, 125, 150, 175, 200 mcg and many more.
At my last appointment with my endocrinologist, my TSH level was a little too low. It was .22 and should be at the low end of the normal range of .35 to 4.5. So instead of taking 1/2 a pill once a week my dose was reduced by another 1/2 pill a week and as a result my TSH level went up to .53 which is in the acceptable range. When they decrease your dose, your levels go up - just to make it confusing.
My doctor pulled out a calculator to figure out what the dose should be. Should I go down to 125 mcg with a half pill once a week or go with 137 mcg and take a half pill twice a week? This way I am getting an average of 117.4 mcg each day. If I went to 125 mcg and took 1/2 a pill once a week I would be at 116.1 mcg which she thought was too low. She asked me if I used a daily pill box before deciding what the dose should be.
Then there are T3 and T4 levels that need to be monitored and kept to barely detectable levels so I don't remember those numbers either. These are monitored because if they are detectable it could be a sign of recurrence (I think).
If you go to the thyroid cancer message boards there are all these people asking about changing TSH, T3, and T4 levels and another test that I cant remember. They ask about why they go up and down, should they change their drug levels or change their doctors or change something else. What happens when you gain or lose weight or get pregnant or go vegetarian or all sorts of things. And its all about the numbers. I never comment on those discussions. I read them and think 'some day this will all make sense'.
But it appears it will never make any more sense than professional football rules to me. I have both explained to me a million times and I still don't get it. Back when I was in my 20's. I would get together with a friend for drinks often on Monday nights. We would sit at the bar and the bartender and some nice men would always explain foot ball too us. We lied and pretended we understood but never really did.
I think I am okay with this. I get my blood tests. My doctors explain them to me. Its one less thing to worry about.
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