Monday, November 28, 2016

Skating Again

We went skating again today. My skates are a bit tight so got advice to take them to a skate shop here in Nanaimo and get them stretched. I think it worked! It would be so great to skate without having sore toes.

Other good things - 
  • we gave our GP's office a cell phone number and they called with my INR results and dose with no problem.  I hadn't even checked the lab results myself. So - my INR is at 2.7 (down from 3.0 last week) and I need to get to 2.3 - 2.4 by next week so I can have my tooth extracted. If I'm not close enough, I just don't take any warfarin for a day. I will be glad to get the extraction over with. 
  • the technician at the lab said some people do only get their INR tested once a month.  That is my aim. I'd do it the same day as Xolair and my blood test for sporanox (anti-fungal). Then I could actually go away for a couple of weeks. 
  • Before that I have to cut back my sporanox and stabilize my INR. 
  • I have no asthma symptoms! Now I just have to deal with the after effects of all the good drugs I am taking. 
Tomorrow the Asthma Society is putting on a webinar on severe asthma and biologic asthma treatments - that means xolair and other biological drugs that I haven't heard of. It should be interesting. I might ask about the issue of the relationship between xolair and DVTs and other blood clots (i.e. heart attacks and strokes).  Otherwise I'll wait to talk to my asthma doc.


Wednesday, November 23, 2016

Skating!

Yippee! I went ice skating today! I haven't been since early March - just before my horrible asthma exacerbation/flu  which took me out of skating for the rest of the spring. Then my "fat feet" which meant my skates were way too tight and painful to try skating this fall. But today I finally got up my courage and went. I knew it would be tough until I got my skating legs back - so I started slowly with swizzles - both blades on the ice - gliding in curves from side to side. Eventually I got enough confidence to lift one foot off the ice - nearly fell. Then the other. Gradually I found I was doing basic skating around and around the arena. We skated for close to an hour and decided that was enough. Skating uses different muscles than walking and there is a lot of knee action - so need to build up the muscles and strengthen the knees bit by bit. That means more skating soon - probably not tomorrow as that is singing day.

Monday, November 21, 2016

INR may be stabilizing

I have been taking 8 mg of warfarin every day for the past 10 days and my INR finally seems to have stabilized in the high 2s. This seems like really good news. Nobody has phoned to tell me how much  warfarin to take for the next few days. I am OK with that because it is obviously 8 mg. Hopefully, if I keep my vitamin k intake consistent, it will continue to be that amount. Then I can cut back on my sporanox and and also get my INR down a bit so I'm ready for my tooth extraction.

I will be very glad not to have to keep going to the lab twice a week for a blood test. It is not always painless. I have never fainted like a guy in the next cubical did a couple of weeks ago. It took a couple of techs to calm him and get him back in the chair - though when he came to he seemed not to have noticed. But last Thurs, the tech hit a nerve and sent a tingle into my hand - only lasted seconds but was weird. Today, the tech could not get the needle in correctly. It hurt quite a bit as she dug around and she finally gave up. Another tech came in and found another vein that worked fine. The usual annoyance is the long wait - often an hour. People line up outside the door long before the lab opens at 7 am and the wait period lasts all morning. Most of the patients are fasting - so want to get in quickly so they can so they can go home for breakfast. I read my email and check Huff Post - so its not so bad - but still a big waste of time.

Asthma and sinuses are good despite having reduced symbicort from 16 to 9 puffs per day and pulmicort  to 5 days out of 7. My peakflows are normal and I have hardly any phlegm - none really. I would have gone skating today if the first tech hadn't messed up. It kind of shook me up. I know skating will be hard the first few times - so I need to start out feeling in control.

Thursday, November 10, 2016

Sporanox and warfarin

Here is something from the Drugs.com on the internet regarding the interaction between warfarin and sporanox:

"Itraconazole (sporanox) may increase the blood levels of warfarin and cause you to bleed more easily. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications." In other words, when you take sporanox you may need less warfarin to reach a therapeutic level (2-3). Or, when you reduce the amount of sporanox you take, you may need to take more warfarin to reach therapeutic levels.

Why does this matter. A couple of reasons:
1. My INR is still always on the low side. It did go a bit above 2 for a week, but on Monday, it was below 2 again - at 1.7. Today it was even lower at 1.6.  There is no pattern relating mye INR to the amount of warfarin I take. Is that because of the sporanox?



2. My sinus doc said I could cut back my pulmicort to 5 days out of 7. She also said I could reduce my sporanox dose to every other day. My sinuses and lungs are in such great shape that I may be OK on half my current dose. This is good news - it is better take less drugs if you don't need them -  especially a drug which can be sufficiently harmful to your liver to require having a blood test for liver enzymes  once a month.

3. Less sporanoxmay be better for my liver but it could lower the effectiveness of my warfarin every day I don't take it. I would probably need to take more warfarin on the days I don't take sporanox - an increase of 10%. If my INRs are chaotic now - think what might happen then.

I thought I should talk to my GP about all this but he has no appointments for 2 weeks. I asked the scheduling person to send me to a young, kind doctor.  She suggested a resident who everyone seems to like. You can't get much younger than that!. I will see him on Monday.

What does this have to do with asthma? Sporanox is my miracle anti-fungal drug that has completely eliminated all my symptoms of asthma or sinus  disease. It doesn't work for everyone but it works astonishingly well for me. But it does not go well with warfarin. I wish I had never had my DVT diagnosed. If no-one had looked for my DVT, it might  have just dissolved and I wouldn't be in this INR jungle. I go to the lab so often the technicians called me "a fixture" today.

Thursday, November 3, 2016

More on feet

Today I went to a physio therapist to find out what is wrong with my left foot and what I can do. The symptoms that got me started on this approach were my swollen feet and sore big toes (due to swelling making shoes too tight), the fact that I cannot spread the toes in my left foot as much as I can in the right foot, the pain I get in my left knee when I walk down hill after walking up hill for a few km, and the fact that I cannot do the child's pose in yoga because I cannot flatten my ankle enough to sit on my ankles.

The diagnosis is (1.)  I have high arches and mobile (flexible) feet which has resulted in the tendons and muscles in the front of my leg shortening to compensate for lack of stability in my foot - this is why I cannot flatten my ankles and (2.) my quadriceps are not strong enough to balance my hamstrings - at least in my left leg - this results in the knee pain going down hill.

The issue of my swollen feet was not really considered since my feet were not swollen at that point. My GP thinks they are/were swollen because of too much corticosteroids. I have been allowed to cut back to about half the symbicort and think this has helped a bit. If I put my feet up after dinner my feet are not swollen at bedtime or the next morning. On the other hand, if I sit with my feet on the floor (i.e.sitting in the audience at a concert), my feet do swell up a bit - but not as much as before.

So the cure is stretching my feet, balancing on one foo,  and building up my quadriceps with squats. The connection with asthma is pretty slim.

Wednesday, October 26, 2016

My heart is fine

The good news today is that my echo cardiogram was normal. I must admit I thought it would be -  so I am happy but not actually relieved. (though I also thought my DVT doppler would be normal and it wasn't.) The downside is that the cause of my fat feet is still unclear. It would be great if this edema is caused by corticosteroids because I am cutting back. Today was Day 6 of 3 puffs 4 times a day. Since my peak flows and small amount of phlegm have stayed the same all week and I feel fine, on Friday I can cut back to 3 puffs 3 times a day. That will be about half of what I have been taking. The other thing I am going to do for my feet is go to a physiotherapist to see if she can figure out how I can walk so my toes don't get bruised even when they are a bit swollen.

Monday, October 24, 2016

Waiting

My INR is back down to 1.8. It is not supposed to fall below 2. I called my GP's nurse.  On Friday, one of the nurses had suggested I call them so they could nag him. This was a different nurse.  First she said they didn't have the INR yet -  but I did. Then, after I babbled on a bit, she said she had sent him a reminder. So now I am waiting to hear what to take for the next 3 days.

To be truthful, I am also wondering if anyone will actually  get around to calling tonight. If  they don't, Elspeth says find a new doctor. Find a new a clinic.  This will be tricky since I have been going to this same doc for at least 25 years. His dad worked with my dad so, although he was way younger, I sort of knew him. Once before I got so mad with him that I changed to another doc.The new one was much nicer but, when I got my first DVT 20 years ago, my current doc was the only doctor available at the clinic - so I had to go to him. I thought he saved my life that time. I think he was more reliable then. Maybe he is just bored with me now that I am 1/4 century older.

If they don't call, I guess I will take 8 mg tonight and expect to get a call in the morning.

More directly related to asthma - my asthma doc sent me an email saying that I can try cutting back on my symbicort. I have been taking 4 puffs 4 time per day (for a total of 16 daily) which is way more than the normal dose. Presumably it was necessary before I started xolair and sporanox but it is giving me the side effects of actually taking prednisone - thinning skin, little purple bruises, my face is getting rounder, and even the swelling in my feet and ankles could have come from this high level of corticosteroids. (I also take pulmicort once a day for my sinuses - so it likely contributed too.)  Today is Day 4 of 3 puffs 4 times a day (for a total of 12). So far so good.  I am about the same as before. If all goes well, next week I will go to 3 puffs 3 times a day (for a total of 9 - basically half of 16).  I do hope this reduces my side effects or at least stops them from progressing.

Can't remember if I mentioned stopping drinking coffee. I feel so much better. I know it was making me really hyper and dizzy. Now the dizziness and fuzziness is going away. I can even drive the car again.

Tomorrow I have an echo cardiogram. This was requisitioned by my sinus doc's fellow - along with a chest xray and the doppler which found my DVT. I am presuming that my heart is fine - since the swelling in my ankles and feet are now being attributed to the DVT and the corticosteroids. Hopefully nothing is wrong. My current GP is supposed to deal with the results. This does no make me feel very confident. (Surely he will call tonight.)