That proposed new cholesterol drug

No I don't have high cholesterol (one ailment that I do not have) but I have been reading the stories on the new recommended cholesterol drug. On one hand it makes sense that other cholesterol drugs are needed besides statins. Not everyone tolerates them, about 10% don't in fact. And some people have genetically high cholesterol.

Fine, I get it. But this new drug doesn't impress me. Why?

1. Because it is an injection. 
2. Because it is expensive.

I hate injections. My husband does my weekly methotrexate injection. It would be much easier if it was oral. Needles are a pain to deal with. And I hate needles. And disposing of them and getting shots and just icky poo!

Also, cost is a real issue.

"If the new drugs are approved, it is estimated they would cost between $7,000 and $12,000 a year per patient. In comparison, statins cost between $48 a year (for generic forms), up to between $500 and $7,000 a year (for brand-name drugs)."

That's a big increase. I realize that it won't be as cheap as a generic but what about developing an affordable medication? And an oral pill for $48 or one or twice monthly injection for $7000-$12000? Seriously?

However, "if we [balance] the cost of these drugs over society and the cost to our health care system for caring for patients who suffer the consequences of vascular disease," Antman said, "it's possible that the calculus would suggest this could be a cost effective and attractive approach.""

Blah, blah, blah. The cost to society? Sure. I get it but what about the cost to the patient? And why should that be part of the pricing equation? 

In a normal world, not biotech or pharma, pricing is done for a lot of different reasons. Everything from market placement ('if its expensive it must be good' is a real thought process) to basic cost and supply and demand. In the dream world of medication pricing, these basics are evidently thrown out the window. 

Anyway, I think I will consider new medications as news when they are affordably priced. And I need to stop whining about medical costs, I know but the whole issue just pisses me off. And if I whine about them, I can avoid thinking about my own medical crap.

A Human Pincushion

My upper back h as been bothering me for a while. I haven't been sure if something new is going on, if it is referred pain from elsewhere in my body, or the pain was hidden by the horrible pain I had in my lower back until the successful procedure where nerves were killed off in my lower back in June.

Last week I broke down due to back pain and called my pain doctor. I thought I wouldn't be able to get an appointment before October because it usually takes that  long. They said 'how about next Tuesday'. I said 'sure'. So I went.

We have never treated my upper back before because it has not been a problem. Its not rheumatoid. Its not cancer metastasis (the first thing that jumps into any cancer patients head). It could be fibromyalgia. It could be myofascial pain. Or it could be something else.

The doctor, after pushing on my back to make it hurt, suggested trigger point injections where he makes a series of intra muscular injections on my back in the painful areas. He has done this before on my lower back and they relieved a fair amount of pain.

There were five measly injections which he said would cause a pinch... and they were followed by deep pressure pain causing me to breath slowly out of my mouth instead of crying.  The nurse came in to check my vitals after (they do that so patients don't pass out as they leave). When I got to my appt, my blood pressure was 123/78. After the injections it was 103/66.

I nixed the trip to Kohls and the trip to the gym after that adventure and came home to sit with my giant ice pack. I gave my husband two choices for dinner - he cooks or takeout. The delivery guy showed up on time with dinner.

So today I feel like a human pincushion. The doctor did say to take it easy for a day or two. I will see how it goes today at work. I am supposed to meet a friend for a walk this afternoon but it may be one of those days where I can't walk. But I hope that when the shots stop hurting, they will make my back stop hurting.

A needle free future

I am elated, no, overjoyed, on cloud nine, jumping up and down with joy (as much as I can jump up and down these days) at this news. Companies are now trying to figure out ways to deliver drugs WITHOUT needles.

I hate needles. I see no need for news programs and commercials to show people getting shots. If I have to have a needle near my body, I tell the doctors and nurses that I hate needles and can't look at them. When I had injections under my kneecap (I get chills up and down my spine just writing that), they were very good at distracting me.

I have a coworker who is so petrified of needles he gets freaked out by doctor appointments. I am not that bad but still me and needles do not get a long. Every time I need blood work (every two months now) I tell them I hate needles,  have tiny veins, and they have to use my right arm which has the tiniest veins so they use little kid needles on me. Which still pinch!

When I started chemotherapy I told my oncologist that there would never be a day where I would inject myself with anything. Then with rheumatoid, my doctor muttered something about injectable options and I let her know my opinion of needles. I am still on oral medications but my RA is not under control so that may need to change. (My husband has since agreed he would give me the injections if it came down to it.)

When our cat had diabetes, I refused to learn how to give the injections. Then one day my husband was sick and slept through the injection time so I had to give the cat the injections. He never even  felt them but it was traumatic for me.

Now these brilliant, brilliant people are coming up with ways to deliver drugs orally instead of through injection. It involves capsules, micropatches and all sorts of technical things that sound expensive but they do not include needles so I am happy. Its just two or three years away from clinical trials.... So I will try to be the patient patient for now.

Medical (mis)adventures

Yesterday I had such a wonderful day I needed chocolate ice cream at the end of it. Why was it such a wonderful day you ask? Well I am signed up for more medical (mis)adventures. I am so (un)excited.

I had an appointment with my back pain doctor, also known as the doctor who prescribes the good drugs. He told me that I looked in good shape, and didn't comment on my high blood pressure reading that concerned the nurses. He told me that I have pain from my facet joints (the little joints along the side of your spine), my right sacroiliac joint (the long joint along the side of your tail bone next to your hip bone), and from greater tronchanteric bursitis in my left hip. All the previous treatments/injections have worn off and I need to start over again.

He insisted on squeezing me in on Wednesday (as in tomorrow) to give me an injection under fluoroscope into my left hip. I am not sure why he didn't want me to wait but I'm happy to have some pain relief coming. But then they gave me the instructions for the procedure which say: "The doctor will numb your skin with a small needle, which will sting a bit. It is important to hold still and let us know if we are causing you discomfort. Next the doctor using an x-ray machine (fluoroscopy) to guide the needle into the correct spot. Local anesthetic and steroid are then injected through the needle and the needle is removed." The parts that I am so (not) looking forward to are the sting a bit and causing discomfort, and the big needle in my hip.Or all of the above.

Next after that we will schedule a repeat of the radiofrequency denervation in my right SI joint. That is in the top three of the all time most painful medical adventures I have had. I asked if it is likely to be as bad as last time and he said most likely. But it is the only way to relieve the pain (which is similar to that of an ice pick into your back). I can't wait.

Finally, we will repeat the facet block injections. These are no fun. They give you three injections on each side of your spine - twice. The first with anesthetic and the second with steroid. Oh, and even though you are sedated they hurt - each one. I really can't wait. But that will probably not be for a couple of months.

I just have to get through today first. I finally broke down and called my primary care doctor yesterday about my shoulder. I bruised it in late July and it got better for a while. This weekend I ended up icing it several times. My concern is that it is my lymphedema shoulder. If it wasn't, I would probably suck it up and give it until October when I have an appointment to see my PCP. I am not entirely sure what they can do because I have range of motion and don't think anything is really damaged - only bruised. But the lymphedema aspect is more concerning.

Three days, three doctor appointments/medical adventures. What a way to start a week.

Knee pain and cures

I wasn't going to blog about medical studies because I have written so much about them recently but then I read the news this morning and this is what I found:

• "Exercise may boost stroke risk"


• "Why happiness may not always be good"


• "Low Salt Diet boosts heart attack risk"
  

So now I want to eat a piece of bacon and sit on my butt and pout. (I am not picking on CNN but they did coincidentally happen to list all three of these today.)

Do you see how confusing medical research can be? I am done reading them but amazed what I can find even when I don't try.

But otherwise, I am fine. I am ignoring all these (confusing) studies. Today I am amazingly over scheduled. I don't know how I do this to myself (but it means I wont have time to sit around and pout).

Well, maybe I am not so fine. I have back pain, knee pain, ankle pain, and my annual mammogram and physical next week as well as a bone density scan and a visit with my pain doctor. This week my knee doctor recommended a series of injections into my knee to relieve the pain - which work 60-70% of the time (and I am going to assume they are completely painless). Otherwise, the only thing that will relieve the pain is knee replacement and I would rather discuss that in another 20 years.

I just looked up the knee injections. They are called Synvisc injections. My personal rule is you can't have an ailment or treatment unless you can spell it and pronounce it. Then I made the mistake of reading the procedure they follow to do the injections. That was a big mistake. A new personal rule - never read procedures before they happen.

But all these doctor appointments mean homework. I need to make a list of questions for my new primary care doctor as I enter the contest to be the least healthy patient of the year. And how many more doctor appointments will I get as a result? I seriously believe I am a professional patient. This is year number five of doctor visits numbering over 50 annually. But that's next week. Today I will just get through my busy day.

Sometimes I need to ignore what they say

Next Tuesday I have an appointment with my pain doctor. I have been hoping he will deem me okay for another cortisone injection in my left hip - so I can walk with less pain. I have already had numerous injections in different areas. Sometimes just one injection works but other times it takes 2 or 3 in a specific area. If they don't work, we get to move on to the wonderful radiofrequency denervation which is NOT fun but is supposed to kill nerves. I have mixed feelings on this so far but I like the cortisone injections. They have done well for me so far.

Then they come up with the theory that cortisone injections aren't as good as they thought they were - they have only been used since the 1940's so you think they would have had long enough to figure this out so far.

I was concerned when I read the article headline that they might make things worse, not better. Then I decided that this is not meant for people like me - they are referring to injury caused inflammation like tennis elbow where the injury will heal up if left to itself. My case is different. My pain causes are not injuries that might heal. They are unhappy nerves being squished some place along the way because the degenerating disks in my spine are no longer holding up their share causing squishing of nerves (another technical term). So obviously they aren't talking about me so I will happily go beg for an injection next week.

Three additional comments on my back pain: With each treatment, they are hoping to resolve the pain in that area for at least a year so they don't have to go back and treat it again. Sometimes it takes two or three treatments to get it to a level where it is stable for a year or more.

Also, when each area is treated, they need to wait six weeks to see the result and let the area recover from the injection and see if it has the expected result or needs additional treatment.

Finally, as each area is treated, more areas of pain seem to surface. So I am supplying a never ending source of pain to be treated. How lovely.

Now gimme the damn shot!

Mental note to self: it pays to ask questions FIRST

Yesterday I got to spend quality time at the hospital. I had a back injection scheduled for 930 am but had to go with my husband first thing in the morning, which means I got there at 715. I did plan to visit a friend who works there, another friend who volunteers there, have breakfast, and get my bloodwork that is scheduled for two weeks from now done. The advantage to getting my blood work done ahead means that the doctor will have the results when I see her an hour later.

First stop blood lab - where the only blood work in the system for me was for a single test which is very odd. Usually my oncologist wants a full set of blood work before I see her. The blood lab thought it was odd as well and said we should check with the doctor first but it was too early to call the doctor's office. They said try again another time. Second stop, visit my friend the volunteer. She wasn't in yet. I gave up and said time for breakfast. I ate some healthy egg beaters and a not so healthy bagel. I tried calling my friend who works there and she wasn't available. Finally it was time to call my doctor's office where I found the doctor only wanted the single test (I bet that gets changed later and they want a complete blood count). So I went back to the blood lab and got my single test done. Then I went to visit my friend who was there. She was running late which is why she wasn't in when I stopped by before.

Then it was time for me to check in for my lovely injection. I did the usual waiting around and then they brought me in. They said (and they always double check - are we doing brain surgery or a knee operation - to be sure you know why you are there) 'do you know what you are having done today?' I said 'back injection'. She said 'actually a diagnostic facet block'. WHAT!!!! That's the most horrible, nastiest, painful procedure I had done last summer WHICH DIDN'T WORK! And it resulted in horrible pain afterward. (Why didn't I ask first? Why didn't I take an ativan before coming?)

I thought back to the last doctor appointment and he had confused me with diagrams and explanations. I thought I was getting a single injection. But no, another diagnostic block. First they use three needles to numb progressively deeper levels into your spine. Then they stick in three needles, one in each facet joint and put in nasty stinging pain medication. Then they stick in more needles, one in each of the three facet joints and inject really nasty medication. Then they go to the other side of your spine. So you repeat the procedure. 3+3+3+3=12 needles!!!! Ow, ow, ow, ow, ow, ow, ow, ow, ow, ow, ow, ow.

But then happiness. My back didn't hurt (in that area) for a few hours. I kept a pain log - and tried all sorts of things like walking, standing, cooking, gardening, computer work, and my back didn't hurt. The next step is to fax in my pain log (which is temporarily MIA, I am sure I put it in a 'safe' place and will find it someday) and see about a more permanent solution. The thing about this nasty procedure is that it is only for diagnostic properties and if it works, you get to have it again but with radiofrequency attack on the pain nerves to kill them off. But you get sedated for that. Gee I can't wait.

Anyway, I do feel this one was better than the other one - it was much higher up in my back. I will find and fax in my pain log so we can work on this area before progressing to the other areas of pain.

I'm not the only one who is confused

It is nice to know that the doctors and pathologists are often confused as well. Or do they just share their confusion with us patients? At any rate, it turns out medical tests are not necessarily black and white. I am sure there are safeguards and double checks built in to the system. I personally know that when I had a confusing pathology report on a recent test, my doctor discussed it with at least one other doctor. I know I discussed it with three of my doctors.

Now today I am off for another lovely back injection (can't wait - NOT). The actual injection is painful briefly but the results should heal that lovely spot in my back that jumps up to a pain level of 8 out of 10 if I stand or walk for more than ten minutes or so. (This morning it is twinging because I was bad yesterday and walked and cooked standing up for more than an hour.)

This also means that I need to get up and motivate as my husband is dropping me off at the hospital on his way to work. Originally he felt, we need to allow an hour for this. I'm giving him 15 minutes. That should put me there at 715 which is when he usually leaves for work and gives me over 2 hours to kill. But I have plans. I have one friend who is a volunteer and another who is an employee. I will stop by and see them both. I will read the newspaper and eat breakfast. I will get my blood work done which isn't due for another two weeks. I hope I can fit this all in before 930!

However I should be home by noon and then can get some work done and meet a friend for a walk. And hope my back will feel better in the next week or so.

Oh, Joy, Another Big Needle Scheduled

Yesterday I went to see my pain doctor's physician assistant to learn what else we can do for my back. I have decided that physician assistants can be very useful and this one was too. But when he walked into the room, I almost asked him if he was out of high school yet. He was a bit young. But we did have a good discussion about my back and he explained things, like why I can have degenerating disks in my lower back but have pains in my upper back.

This is called inflamed facet joints. These little bitty joints run along each side of your spine. If they get inflamed they hurt. They hurt a lot. Then we talked about my bursa pains in my hips. There was lots of ouching from me as the way to determine if something is inflamed is to push on it and find out what hurts.

So the plan of action is to start with what hurts the most - the lumbar facet joints and then go on to other things, like my hips. But they would only schedule one thing and want to see how it goes and then schedule the next thing. So a big needle in a few weeks again. Oh joy! NOT. They are actually relatively painful when they go in. But the result is less pain afterward so I guess they are worth it.

Today it has finally cleared out and stopped raining. I need to do some weeding and get rid of dandelions and little maple trees before they take over. I just wish the stupid rabbits and chipmunks would eat the weeds and not my crocuses.

A nicely non-eventful day

Well, it wasn't completely non-eventful but it was not traumatic or stressful, mostly. My husband delivered me to the hospital for my injection. As planned I was there early and had time for breakfast - yogurt and banana - before heading for my appointment. I told the nurse (both nurses remembered me - I think I am a frequent patient or something) before hand that I was hoping to avoid the previous outcome where the back of my leg hurt and I left in a wheelchair.

The injection itself is okay. They clean off your lower back and then inject a pain killer so you don't feel the needles. This can cause a little discomfort but not really. Then they stick in a big needle full of steroid which can produce amazing amounts of pain down the back of your leg and across your hip that goes away in about 20 seconds. Then they stick in a second needle full of synthetic cartilage which hurts briefly as it goes in. And then you are done. They bring you back out to sit and make sure no adverse reactions - in my case, I got to take a lap around the post op area - and they send you home with an authorized driver to bring you.

My sister drove me home and I took a recommended pain pill and did a little work before we took her dog for a walk. My (lack of) brain cells allowed me to set off the car alarm trying to get my cell phone out of the car, bring a shopping bag so I could buy cat food but forget any money to purchase it, and spend the balance of the day watching TV and crocheting on the couch. Eventually I made it back to Trader Joes for the cat food but that was it.

This morning I am relatively pleased by the lack of pain level in my right SI joint but it will take a few days. I am slightly displeased by the pain in the back of my leg but will follow the instructions and wait two weeks before calling them back with how I am doing. They want you to wait two weeks because the short term effects can be much different than the long term ones and those are more important. So I will go back to being the patient-but-whiney-patient for the duration.

Today I need to get my butt in gear and go to work this morning. I then have a busy afternoon of meeting a friend for a walk and then getting a manicure. I just need to decide what color...

Doctor shopping

Choosing a doctor isn't like shopping for shoes on sale. Nor is it a case where you just have to accept who you are assigned. Its more like dating. Yes really. Its the chemistry that counts. See 'Speed Dating Doctors'. No lie!

When my husband was dealing with his malignant polyp last fall, we were driving to the hospital to meet the surgeon for the first time and we were talking about the meeting. I reminded him that he didn't have to go with this surgeon if he didn't like him. On the way home, he said he liked the guy, his personality, and his style. This was very important to him.

My doctors are important to me. I need to be able to communicate with them. My primary care, who I have been with for about ten years, has been very verbal in telling me how to communicate with doctors. She says things to me like 'don't tell me you have a pain, tell me the story of your pain - what you are doing when it hurts, what you ate, how bad it was'. Her advice has served me well with my other doctors. My computers are littered with little notes for doctor appointments. Sometimes I just start writing my notes and then see patterns I didn't see before.

I think we have progressed beyond the doctor is a god thinking. Think of a doctor as a professional who you hire their services. If you don't like them, find another. If you take your car to the garage and feel like they don't give you a straight answer and talk down to you, would you go back? No. Same with your doctor. Find a new one. What is the point of paying for medical services and not getting the care you are paying for?

This is not a science and there is a little room here. One of my surgeons came highly recommended and I thought he was a bit of a stuffed shirt but okay. I figured that I was having him for one operation, not seeing him monthly for the rest of my life so I could deal with the attitude issue. In the end, I decided he was actually a nice guy. So maybe he wouldn't have passed the speed dating test but it worked out in the end. Sort of like the guy you go out on one date because he had awesome concert tickets and decide there will never be another one but you still got to go to the concert.

In the meantime, two days until my next big needle in my back routine. Can't wait! NOT! Actually if it has the same level of success as the last one, it should make a big difference. I still haven't called my ankle surgeon but think I will as I am sick of dealing with my stupid ankle pain. Stupid is because I did it to myself in a nanosecond of idiocy where I tried to look over my shoulder while walking... Otherwise, I am doing okay but need to motivate to go to work soon.