Wednesday, March 22, 2017

Cost of meds

I decided it was time to figure out what the cost of my asthma medication has been. I am lucky enough to be ensured by Blue Cross College Pension Plan so about 70% of my costs have been covered.

My total claims for the past 2 years were $45,826. About $40,000 of that was for asthma medication. (The rest was for dental.) This works out to $20,000 per year for asthma medication. Phew! Xolair accounts for about $9000. The other $11,000 is for symbicort, spirival. sporanox,and pulmicort, antibiotics, and prednisone for asthma plus a small amount for zopiclone and warfarin. This about $20,000 worth of drugs per year for asthma.  I think this is really a lot.

I am worried that I may soon reach my lifetime insurance maximum. I am currently trying to find out what my maximum is and how much I have left. From 2005 documentation, I think my lifetime limit is $250,000. I didn't spend nearly as much as I do now before my exacerbation began 4 years ago.  Also the costs basically doubled about 2 1/2 years ago when I started xolair.  Now that I'm cutting back on symbicort, pulmicort, sporanox and zopiclone, my costs should drop by about $4000 to about $16,000 annually. However, I noticed the costs of the meds I take are creeping up - Xolair has gone up $12.00 per injection or $150 per year since I started.   Assuming I have already used about $100,000 worth of coverage, I would have less than 10 more years of coverage left.

I am also trying to find out what relief I will get when my Blue Cross (Green Shield) coverage ends and I become totally reliant on provincial fair pharmacare. Will I actually get any? Green Shield will be our provider starting next month so I have sent them a query.

So, Mike and I are going to Ottawa in May as part of an Asthma Society delegation to advocate for clean air and universal pharmacare coverage.  My story is not too terrible - but it is bad enough. However a UBC study showed that one out of ten people do not take their prescriptions because they cannot afford them. Clearly something needs to be done.

Wednesday, March 8, 2017

PPP

Today I had my training session for a patient advisory group (PPP) to a pharmaceutical company.  People who are part of this PPP participate by giving the patient view of such things as drug protocols,  targeting, information handouts, etc. It is pretty confidential so I can't write much about it. An example might be that a protocol could have been written saying a patient needs to take calcium and vitamin D when they start megadoses of corticosteroids. Maybe I was told to do this and don't remember. Maybe calcium and vitamin D don't actually help = but you get the idea. On the other hand - maybe the protocol should have said that the patient needs a bone density scan when they show symptoms of having taken too much corticosteroids. Again - there are negatives to having a lot of scans so who knows. Hopefully I will be helpful to future studies because I have had some experiences -  both good and not so good.

Tuesday, March 7, 2017

Implants - maybe

I was feeling pretty stressed about my failed root canal and my newly discovered osteoporosis. I couldn't see how I could get implants if my bones are weak. This idea was stated graphically (though intended humorously) by my GP when he said the part of my jaw would come out if I had to have an extraction. Eeek - he is annoying that way.

So I went to see my dentist today to see what he thought I should do next. I told him I really dreaded having dentures and he said, "Dentures are not in your future!" Well, I was pretty happy to hear that - though I do not completely believe it.

His plan is that I should go and see an uber-specialist  periodontist in Courtenay who uses very advanced techniques for doing implants and who will probably be able to figure out how I can get 2 implants (to replace my bridge gap and the bridge tooth that did not have a successful root canal.) Apparently periodontists are now the most successful implant dentists - they use methods that work at the cellular level. A very interesting point is that success will depend on the state of my sinuses.   I think my sinuses are fine and will find out for sure on April 19.

He may also be able to give me the best advice for osteoporosis medication since bones are his area. So (donc) I won't go to my GP for this advice after all.  

So (donc again) - hope springs eternal once again.

So how is this part of my asthma diary? It's possible that my osteoporosis is the result of too many corticosteroids. It is generally believed that  prednisone in pill form causes osteoporosis if you take a lot for 3 months in a year. I did not do that. Inhaled corticosteroids should not cause osteoporosis. However, because I was taking so much symbicort and pulmicort that my face was becoming round and I had little blue bruises (symptoms of too much prednisone) it seems likely to me that the inhaled stuff may have been the cause of my osteoporosis. That plus a genetic predisposition and too little calcium and vitamin D I suppose.

Monday, March 6, 2017

Skating

Despite my osteoporosis I went skating today and was happy to be there. I am not a very good skater anymore but I can zip around the rink and I really love it. I think I will have to be a bit more careful about not falling - not something I wanted to do anyway. But I know exercise is really important for good health and I will keep doing it.

Oh no! Osteoporosis!

I have always known that prednisone and corticosteroids can affect your bones - in other words cause osteoporosis. People who have osteoporosis are more likely to have fractures for minor reasons - maybe no reason at all. In fact many people only learn they have osteoporosis when they fall and break their hip or their arm.

Of course it concerned me and I spent a lot of time trying to figure out whether or not to take calcium and vitamin D to support my bones. Sometimes I took them and sometimes I did not - depending on the latest research I had heard about. Too much calcium can hurt your heart and, because vitamin D is fat soluable, it is possible to have too much D in your body. Drinking 2 cups of milk, eating a cup of yogurt and kale or other greens should provide sufficient calcium. Going out everyday and getting some sunshine on your face for 15 minutes should provide enough D. For the last while I took neither and thought I was being smart.

A couple of weeks ago I had a bone scan to check my bone density. It was requested by one of my sinus doc's fellowes - the same one who requested the ultrasound that found my DVT. I thought it was just routine. I was feeling pretty fit from all my weight training  and the technologist was impressed that I was almost 75 years old and looking good. On top of that, I seemed to have grown half an inch - probably because of improved posture and a longer spine due to my exercise. On Friday, I went to see my GP. I was pretty shocked to hear that my bone density has decreased sufficiently to be called osteoporosis.  What me? osteoporosis! oh no! I have taken a huge amount of corticosteroids over the past few years to give me good breathing and sinuses - I'm pretty sure that is the cause of my deteriorating bones.

My doctor said take calcium and D so I immediately went to my favourite pharmacy and bought some. I am taking 500 mg of calcium carbonate and 2 vitamin D pills daily. I clearly need them but will they help? I thought I already was getting enough. I thought my bones would be strong given all the weight training and walking I do. Maybe I needed more because of the corticosteroids.  Next thing I have to do is decide which kind of bone density medication to take. There are basically 4 kinds and you can take them in different dosages - pills (weekly, monthly) and infusions (quarterly, annually). Both methods can make you feel a bit miserable - nausea with the pills and flu-like symptoms with the infusions. One type is for people who have bone loss from corticosteroids - I think that is what I need. I can't see my sinus doc until the middle of April or my asthma doc until May, so will go with whatever my GP and I work out together.

The somewhat complicating factor is that the same day I saw my GP, I also went to the root canal dentist. He worked away on my root canal but at the end he said he was doubtful about the results.  There was decay in the root that would be hard to remove - and not much would be left. In other words, I will likely have to have that tooth removed too. Since it is the end of a bridge, I will have 3 teeth missing in a row. Implants are possible - but maybe not as possible as I had thought given that my bones are not OK. One thing I always dreaded was having a denture. My mom had a denture and I thought it was the most miserable looking thing.

I am trying to view these set-backs as a learning experience that I can share with others. I will try to pass this info on to the Asthma Society and the drug company I am joining as a person with a patient perspective. Mike says that people should be given special advice about what to do to prevent osteoporosis when taking prednisone and other corticosteroids. I will try to find out if that is possible or if you get osteoporosis regardless.

Tuesday, February 21, 2017

Joining a new study

Today I signed up to join a new asthma study sponsored a pharmaceutical group. I had actually signed up before but failed to become part of the group because I was playing telephone tag with one of the researchers and never actually talked to anyone in the end.  I was a little leary of being part of a study sponsored by a pharmaceutical group. However, when I checked with my asthma doc he said I should go ahead. So I am now on board for a study on asthma and nasal polyps. I have nasal polyps - though they are not causing me any problems right now. In fact I am very well in every way and have no health complaints at all. My breathing is fine and I am sure my INR is OK.

I did my exercises this morning with Mike - mainly variations on squats, lunges, ball pushups, high plank, ball table, ball bridge, quadrupeds, bench press, bicep curls, triceps, band pulls and pushes, one foot stands and step ups. I really enjoy doing this sort of workout at home with a ball, bands and dumb bells and can feel myself getting stronger each time. My whole body is now involved with every exercise - because I am mainly trying to strengthen my core. We do our exercise routine about 3 times per week and follow up with a stretch for me. Mike warms up with 5BX and does some yoga and tia chi afterwards. I warmup by taking our dog for a walk.

Our poor dog is very cute and very sick. She has heart failure and we now have her on 4 meds which have to be given to her throughout the day. In fact we now have a little book to keep track of her meds and also her resting breathing rate - which is very high due to her heart problems. If the medication works it should bring this down to normal.  3 of her 4 heart valves are "blown." Unfortunately  she will likely only live about 1 more year before we will need to "put her down" because she will have pain - not in her heart but in her joints. She is only just turned 8. We rescued her 6 years ago and love her dearly.

Sunday, February 12, 2017

What about costs?

My asthma is fine. But I have a tooth problem and a sore back. I think my back problem is caused by a structural flaw in my left elbow. When I do a bicep curl, it feels as if a ligament is sliding around. It doesn't really hurt, but I think it sometimes (like right now) makes the nerves in my shoulder and under my shoulder blade hurt a lot. I am hoping to correct this by doing more strength training. On Tuesday I'm going to the kinesiologist for a weight training lesson. If it still hurts (which it will), I might make an appointment with the physiotherapist. I am having my bone density test in a week or so - maybe I'll wait til then.
My tooth gets looked at on Tuesday too. I either need a root canal or it is broken and has to come out. In either case it is unusually problematic because it is one of the supports for my one tooth bridge. If it has to come out I will get an implant to replace it. I'll also get another implant to replace the bridge. This actually sounds good. Does any of this have anything to do with asthma - probably not but maybe my bones and teeth were weakened by prednisone. I will know that better after my bone density test.

On a slightly cheerier note - I have joined the new ACMA Advocacy Committee and am going to Ottawa in May for "Hill Day." Mike is invited too-  to share the caregiver perspective. Our committee will go to Parliament Hill to advocate on behalf of the Asthma Society re. comprehensive access to pharmaceuticals and clean air and clean energy. These are both important causes for everyone - including me.

Right now my very expensive medications are covered by Blue Cross - but I have a lifetime limit of $150,000. My Xolair alone costs over $9000 per year, Symbicort is $100 per puffer. Sporanox is also several thousand dollars per year. I think the total is around $12000 to $15000 depending on dosage. On top of that there are dental costs - which could be quite high if I have to get implants. I think all this could be classified as "catastrophic costs." My income is pretty good - so when  Blue Cross runs out I won't be eligible for provincial coverage.  It's not really catastrophic for me but it's kind of annoying to think that when I am properly cured of asthma and sinus issues and can  go on a trips again, I may have to spend my trip money on medications and teeth.