Sunday, August 20, 2017

Biologics video

I am part of an Asthma Canada team working on a short animated video about asthma biologics. I am the patient contributor since I take xolair. We have had  our first phone meeting and I have learned quite a bit in the process.  First, there are many biologic drugs including penicillin. Anything made from a living plant or animal is a biologic. Second, there are two types of Severe Asthma - allergic and eosinophilic. Hence there are two types of biologic asthma drugs. I am hoping to find out more about this when I see my asthma doc on Wednesday.

And - Yeeks. I am having a colonoscopy in about a week.  Since it doesn't seem to have anything to do with asthma I won't go into details. To be on the safe side I have let my sinus doc and my asthma doc know this is happening. Hopefully it will all go smoothly.Nonetheless I am not looking forward to it.

Sunday, August 6, 2017


This summer has been very hot and dry in BC. The result is that, during July, there have been hundreds of forest fires in the interior of the province. Literally thousands of people have evacuated because their homes were in danger of being caught in a fast moving fire. The air quality in these communities has been far off the AQHI scale - basically very dangerous to breath. It is hard to imagine what a terrible summer it has been for them.  AND the wildfire season shouldn't have even started yet.

Unfortunately the smoke is now in the lower mainland and Vancouver Island. For the last few days outflow winds have been blowing the smoke through the mountain passes and into the lower mainland and Vancouver Island. Today the AQHI in Nanaimo is 7 out of 10 - quite bad. Mike and I decided that we wouldn't go outside unless the level was under 4. That means we are pretty much stuck inside for a few days. We have fans going because it is also quite hot and only open the windows when the smoke clears a bit in the evening.

Why are we staying out of the smoke - the tiny particles of smoke can easily get into a person's lungs and cause permanent damage. For people with asthma this is particularly dangerous - since out lungs are already damaged. So we still can't get doing any good summer stuff.

Sunday, July 30, 2017

Close to normal after oral surgery

I saw my periodontist on Friday and he took out the stitches. He said everything looked really good. Now I just have to keep on healing. I still must not sleep on the side where the bone graft is. I obviously have to eat on the other side. I have to keep my teeth as clean as possible but not brush the gum. I have to use the special mouthwash to help get rid of plaque.

I told him about my reaction to dexamethasone and got the impression that some people just have these reactions. Mine was probably worse and more prolonged because of the interaction with the sporanox (azole anti-fungal) I take for my asthma.  I also talked to the pharmacist about the dexamethasone-sporanox interaction. He pointed out that I might have a similar severe reaction to prednsisone if I am taking sporanox at the same time. Prednisone makes me crazy at the best of times so it is scary to think how I might feel if there is an interaction between prednisone and sporanox similar to the one with dexamethsone. My asthma doc said I will likely have future exacerbations which will require prednisone. I'll him what to do when i see him in August. Maybe stop sporanox for a bit - though the pharmacist said that might not work since I need sporanox to deal with my problem with fungus. Of course there is a chance that the sporanox will keep me from getting future exacerbations! That would be nice but I don't think I can count on it.

Anyway, back to my oral surgery. Assuming everything goes well, I will get the 2 implants put into my jaw in about 6 months - that's next February. Once the implants are in, I need three months for them to heal and then I can get the crowns. That means that if all goes well I will have my two new teeth before next May. This will be a great outcome - much better than the darn little bridge my dentist gave me when the first tooth cracked and had to be pulled out - about the same time as i had my sinus surgery..

I am feeling close to normal. We took a really good long walk in Linley Valley this afternoon. My sight seemed batter and my balance was normal. I could do all the rooty rocky bits and climb up steep banks and down the dry creek bed. I was pretty happy with how I did. I am still bit out of it and feeling a bit guilty that  we still haven't gone away - but I'm OK.

Mike's IBS has been acting up for the past few weeks - maybe  the stress of my reaction to dexamethasone - maybe we've lost track of the FODMAP diet and he is eating the wrong stuff without realizing it. He bought an ebook last night with lots of good hints and reminders. So he's starting again with a new elimination diet. That means no lactose, no gluten and no high FODMAPS for about a month. Also- smaller portions of vegetables and fruits and smaller meals with decent snacks in between.  We bought all the appropriate groceries this morning. Hopefully the elimination diet will give him some relief and the we will be able to get the FODMAP diet working properly again.

Wednesday, July 26, 2017

Nearly normal

Today I did not take sporanox and hope this is allowing the remaining dexamethasone to clear. I think I'm mostly ok. My sight is still not great but that could be the cataracts that I've had for awhile.  I thought they were bad before so maybe this is as good as it gets until I'm bad enough for surgery.  I had a hard time getting to sleep again last night even though I took my zopiclone.  I was awake until at least 1:30 but did finally drop off. This is really annoying. I haven't had any coffee for a week but still feel a bit manic. However my balance is good. I feel warm.  I know where my feet are.  We actually went for a bit of demanding walk - over a lot of rooty rocky bits around Cottle Lake and I did ok.  My appointment is day after tomorrow. Hopefully my stitches will come out and I will be able to get back to sleeping on whichever side I want and doing vigorous exercise. I have spent most of the past 2 weeks working on a large painting of the migraine aura I saw on the way home from the surgery and I think it is nearly done. It is powerful. Mike says it gives him a headache. I could call it dexamethasone.

Monday, July 24, 2017

About Pms0Dexamethasone 4 mg TAB side effects

My oral surgery is not quite wrapped up yet. The gums are not doing badly but I am still getting side effects from the little white anti-inflammatory dexamethasone pills the periodontist gave me. Sometimes I feel mostly OK - but I'm often still feeling a bit vague and my eyesight is much worse than usual. I hate it. I want to be normal and get on with summer. 

So I thought I would have a more careful check of the documentation for dexamethazone I got from the pharmacist. I guess I thought 4 tablets couldn't cause that much harm - and I am almost OK now - but I think they actually caused me a lot of grief  and it's not completely over

Side Effects
The side effects listed on the sheet that applied to me - headache, dizziness, trouble sleeping, vision problems, black stools. negative mental mood changes.
  • The headache was not intense but the dizziness and lack of proprioception was persistent and just would not go away. Sometimes I felt like pale blue beluga floatig in a pale blue sea.  Other times I couldn't feel my feet or my knees or the rest of my body and was very cold. When I finally began to feel my digestion, it was such a relief. The day we went to see Dr. Javer I was particularly without feeling - just floating along. I think this is slowly going away - but it hasn't gone completely. Sometimes I do feel warm. It's a good feeling.
  • My trouble sleeping was that I simply could not fall sleep - so went back to taking a full zopiclone tablet each night before bed. This was pretty disappointing because I had cut back to half and was hoping to get off them entirely by the end of the year - but I've done this for prednisoe in the past so just did it.
  • My vision problems were also pretty bad. Everything is still  pretty fuzzy and/or blurred. I still can't read signs I can usually read. I can hardly read a book. I put 2 pairs of glasses on on top of each other and finally could see the print. Reading the computer was sometimes completely impossible. This was very annoying since I was trying to start up Duolingo again and there were nights when I just could not see it. Right now, my distance glasses are almost completely ineffective but I keep on wearing them. Sometimes I can see through them very close up - like my jacket can look quite clear,  I can sometimes read what I am writing here - but not always.
  • Yes to black stools. At first they seemed grey and I was constipated. Now they a firm and black. Very weird. Like black plasticine tubes. Usually my poops are loose and brown. I thought they would be more that way due to the antibiotics - but not so far.
  • Depression and confusion. I was not myself - feeling so guilty for ruining our summer and such a whimp for not getting better right away. One evening, several days after I finished it, I was actually afraid I was becoming demented. I couldn't think clearly or remember basic things. I couldn't see. It was bizarre and scary and I know Mike was worried. But he has seen this before with prednisone (not the not being able to see part) so I thought it was the same. I think I'm mostly OK now.
  • I also experienced shaking and loss of proprioception (couldn't feel my body) and an overall sense of being cold and not really there. I haven't shaken for a few days.
  • This stuff is not just your usual old prednisone. It is pretty wicked though it didn't seem so at first. It built up over the 4 days and still hasn't completely gone away.
 Drug Interaction
The drug sheet also mentions drug interactions - including interaction with azoles (antifungals) which which affect the removal of the drug from your body. Sporanoz is an azole and a potent one at that. As far as I can see, the sporanox has greatly slowed the removal of the drug from my body so the side effects are still lingering. Though I am improving and went on a pretty nice walk today. I'm still a bit shaky.

I don't think the periodontist realizes what happened although I did explain to him on my 2 minute appointment on Friday. He said it was normal for people who are susceptible.

So - I think that was worth doing. I will share it with Mike.  I wonder if I should do anything else? I really hate the poor vision and black stools.

Much improved - my brain is back

Having my oral surgery was a lot more trouble than I expected. I actually thought I would be able to go boating the next day and get together with Albineers. No way - far from it. As the week went by I began to succumb to the anti-inflammatory Dr. Vince had given me. Aftet awhile I felt basically numb, cold and I had lost my sense of proprioception, I couldn't believe this could happen from 4 little pills. I suppose the actually extraction and bone graft might have had an effect.

My appointment on Saturday last 2 minutes - no - not better yet - come back next week. It takes more than an hour to drive to Courtenay - so it was a long way for an update. Also - don't sleep on your surgery side and don't do anything strenuous - but you can begin to eat more normal food on the other side. The next day, my eyesight was really crappy again - I had to wear 2 pairs of glasses on top of each other to read my book.

On the way home, Mike arranged that we stop in Lantzville to see the little art gallery. some of the painting were really good - a lot were not. BUT - there is a chance I may be able to show some pictures there. Wow! Excitement beyond comprehension. I might be an artist. I was so revved up with the  belief that I might actually be a meaninful person doing something recognizable I could hardly contain myself. (Much better than being physically and emotionally ill with asthma, sinus, rotten teeth, soft bones, brain deadness, weird blood and drugs). Oh please, please, let me come back and be warm, in full-colour, full sized and able to keep my balance.

The following day I continued to feel better - warmer and there were moments when I could feel my brain begin to think a few clear thoughts.  Yesterday we actually went for quite a demanding walk all down the beach and up the trail at Beach Drive. I was about 6 km - not too strenuous but enough to feel that your feet were on he ground and your muscles were working. I was actually feeling happy. It crept up on me. Happiness! I kind of flashed into full colour after having felt like a pale xray version of myself.

In the afternoon I painted away on my aura painting.. In the evening I got an email from a friend who had read my Portugal Blog. She really liked it. I know it was interesting and surprisigly had a plot. I hope we can do that again. I felt great!. Today - we had an asthma meeting which I could totally follow and this afternoon Mike and I are going for a walk up into Lynley Valley. I will take my stick and hope I am steady on my feet.

Friday, July 21, 2017

Dizzy, cold and just not right

It is a week since my oral surgery (extraction and bone graft). I am not feeling right. I am cold - especially my feet and legs, my sinuses feel numb, I'm slightly dizzy, don't have good balance, my arms are weak, I feel quite disconnected and a bit disoriented. I felt this way last October and blamed it on medicines - sporanox. xolaire, symbicort - plus coffee. Right now I am also blaming it on the prednisone like anti-inflammatory I took for 4 days for my oral surgery. Maybe also the gigantic penicillin pills I finished them yesterday. I do not have swollen feet - but I slightly worry that I could be getting blood clots again.

SO I'm making a plan.
1. Stop drinking any coffee. It's good for constipation but I think that issue is now OK. I certainly don't have any signs of diarrhea - which is a common effect. A bit odd actually but probably a combo of drugs. Cutting coffee should reduce dizziness - at least it did last fall.
2. If that doesn't do much - ask sinusdoc if I can reduce sporanox to every other day. Elspeth has been having symptoms from sporanox and sporanox withdrawal. It is a very potent drug. I was taking less a while ago - so I'll ask it I can try that again.
3. Keep getting exercise - not strenuous but solid. Do at least 10000 steps per day - which is not hard and I have actually not being doing too badly on that. I usually feel a bit better during a walk.
4. See Vince tomorrow and see if I can do other more strenuous exercise. Getting the blood moving might get me feeling more grounded - less cold and disconnected. Might even ask him about a doppler. Eeks - don't really want that. Will drink more and walk more and try to keep blood moving.
5. Go back to cutting back zopiclone - just a little chip off  to prove I am getting back to normal. (I have been taking one tablet since I started the anti-inflammatory and slept pretty well. But before the oral surgery I was donw to a half and sleeping fine - so I need to get there again - not just let myself take a whole one. I don't think it will change my symptoms but it might make me feel more mentally in control. I remember the ear specialist saying you can make yourself not be dizzy. It takes a mental effort - so that's what this is about.

On a more positive note - we had a GR Team phone meeting this morning about what to do next. I had prepared for it quite well and I made some good points about how we can learn more about possible solutions and how we can work together more effectively with other health charities. I felt as if I had not completely lost my brain.

Elspeth says its because I've been through a lot. It's true. I worry that I am getting older and less resilient. Got to get back to being strong.