It's been a couple of treatments since my last posting, and things appear to be on the up. I have formed the view that while steroids reduce side effects, they have an adverse effect on the primary condition itself. Having put in a measurement system for the strength in my fingers, I was very disappointed by the improvement in course I had five weeks ago.
So in this last one, we just used anti-histamines (phenergan), anti-inflammatories (nurofen), and regular pain killers (panadol), and these did a reasonable job of reducing the side effects. The most important thing I have learnt from the last two treatment courses is the value of rest! On each occassion I just went to bed and relaxed for 2-3 days, and that was more effective than any drug.
Of course, I would much rather pop a pill (or ten) than have to take 2-3 days off each month. But alas, it is now clear to me that lifestyle changes are required, and one is just to take it easy, and reduce the pace of my life; particular around treatment time.
This last treatment was after a gap of just one month, and the strength in my index finger is the best it has been for around six weeks. That part is very encouraging. Because of some travel plans, my next treatment will be after just a three-week gap, so I'm hoping that will act as an extra booster, and I can revert to a monthly schedule that is more pro-active with respect to the strength in my fingers.
I'm also now exploring some complementary medicine as a way of dealing with some of the limitations of western medicine, particularly relating to the side effects if IVIg. More to follow in future posts ...
Monday, June 8, 2009
Tuesday, May 5, 2009
Heading for the third round
I guess thinking that I was on a two-month treatment cycle was just me being the eternal optimist. Maybe that is why I get these waves of melancholy and angst? It happens when I actually schedule my next treatment course. Or when I suddenly start to feel pain doing an everyday activity, like pulling off a t-shirt. Perhaps these events trigger a challenge to my natural state of optimism about everything, and that in turn causes me to think about some of the negative aspects of my life with MMN. Or perhaps I am just still learning to accept my condition, and what I really need is to adjust my expectations.
So later this week it will be another two days of juice, after a break of 5 weeks since the last treatment. This is more typical of the treatment cycle for most people with this disorder. The hospital has a new guy in charge of the unit, and I'm told he's really good with putting in IVs. We are making some adjustments to the regimen - a different premedication that should hopefully reduce or eliminate the side effects, and slowing the infusion rate so each batch goes for five hours instead of three. Will have to stock up on DVDs, but the real challenge for me will be to actually get up with the IV in my arm, walk over to the bathroom and relieve myself at some point during the infusion. I managed to do that last time without even looking at the IV site - quite an achievement!
In the meantime, my "rig" (a al Mythbusters) is all set up. It consists of a plastic basket, some ribbon, and a series of weights (the weights were originally little bags of dirt, but I've gone all out and purchased some a calibration weight set). This allows me to regularly measure the strength in my hand (actually, each finger) and record it. Creating a spreadsheet and a pretty graph of the strength measures over time, and how they are impacted by the IVIg treatment is actually something I really enjoy, being a very analytical person.
This will be my third treatment, but there is not much point keeping count. Shortly, it will just become a contiuum, like monthly board meetings or business trips. Discussed the situation with my father today, and explained to him yet again that there is no known cure and that the treatment is ongoing. What I really need right now is a good cry. The emotions are welling up just beneath the surface, and I need to share them with someone who can understand.
So later this week it will be another two days of juice, after a break of 5 weeks since the last treatment. This is more typical of the treatment cycle for most people with this disorder. The hospital has a new guy in charge of the unit, and I'm told he's really good with putting in IVs. We are making some adjustments to the regimen - a different premedication that should hopefully reduce or eliminate the side effects, and slowing the infusion rate so each batch goes for five hours instead of three. Will have to stock up on DVDs, but the real challenge for me will be to actually get up with the IV in my arm, walk over to the bathroom and relieve myself at some point during the infusion. I managed to do that last time without even looking at the IV site - quite an achievement!
In the meantime, my "rig" (a al Mythbusters) is all set up. It consists of a plastic basket, some ribbon, and a series of weights (the weights were originally little bags of dirt, but I've gone all out and purchased some a calibration weight set). This allows me to regularly measure the strength in my hand (actually, each finger) and record it. Creating a spreadsheet and a pretty graph of the strength measures over time, and how they are impacted by the IVIg treatment is actually something I really enjoy, being a very analytical person.
This will be my third treatment, but there is not much point keeping count. Shortly, it will just become a contiuum, like monthly board meetings or business trips. Discussed the situation with my father today, and explained to him yet again that there is no known cure and that the treatment is ongoing. What I really need right now is a good cry. The emotions are welling up just beneath the surface, and I need to share them with someone who can understand.
Saturday, April 11, 2009
rock and hard place
Rock (noun): Deal with the side effects of IVIg using conventional, over-the-counter anti-inflammatories and pain medication, and just wait until they subside.
Hard Place (noun): Deal with the side effects of Prednisone, which rendered me angry, aggressive, hormonal, and bursting out of my skin.
After taking the Prednisone for two weeks, and been off it now for a few days, I've gained a deeper understanding about the nature of different types of headaches. Now that its effects have worn off, I can see Prednisone is reasonably effective in reducing the inflammation reaction to IVIg. Yes, the headaches and neck soreness have returned, so it's back to Nurofen etc to deal with that. Drugs like Excedrin don't work - there is pain, and there is pain. Because mine arises from inflammation, your typical pain killers (even strong ones) don't really do the job.
Being trapped like this between two sets of side effects has me in a bit of a down mood. Maybe I should take something for that?
Hard Place (noun): Deal with the side effects of Prednisone, which rendered me angry, aggressive, hormonal, and bursting out of my skin.
After taking the Prednisone for two weeks, and been off it now for a few days, I've gained a deeper understanding about the nature of different types of headaches. Now that its effects have worn off, I can see Prednisone is reasonably effective in reducing the inflammation reaction to IVIg. Yes, the headaches and neck soreness have returned, so it's back to Nurofen etc to deal with that. Drugs like Excedrin don't work - there is pain, and there is pain. Because mine arises from inflammation, your typical pain killers (even strong ones) don't really do the job.
Being trapped like this between two sets of side effects has me in a bit of a down mood. Maybe I should take something for that?
Tuesday, April 7, 2009
'roid rage?
I really hate Prednisone. I'm finally tapering for a bit longer after being on it for just over a week at 25mg, and this time, it's really messing with me. Hard to put words on it ... I'm "edgy", not tired at night, sort-of anxious, peckish. Have put on 4-5kg in just a few days, which has made me feel bloated. Is this 'roid rage?
Whatever it is, I can't stand it. It's making me something I don't like, and I can't wait for these side effects to fade away.
It's strange that I don't recall these side effects last time I took Prednisone. This time, we did it as a premedication before the IVIg, so the circumstances and the combination of things going on in my body are a bit different. They have helped to alleviate some of the IVIg side effects, but it has been a very unpleasant journey. In addition, the Prednisone does seem to have a negative effect on my hand strength, so the benefits of the IVIg are held back somewhat. This is something that also happened in my last treatment cycle.
The good news is that my consulting neurologist from Johns Hopkins suggested something different next time. The thought of having to fiddle with doses of Prednisone each time was really depressing me. Instead, he's suggested an IV cocktail of dexamethasone plus a couple of other "mixers" as a one-shot premedication. It's a much stronger form of steroid, and because it's a short, sharp dose, the side effects should be reduced. Anyway, something else to look forward to in a couple of months ...
Whatever it is, I can't stand it. It's making me something I don't like, and I can't wait for these side effects to fade away.
It's strange that I don't recall these side effects last time I took Prednisone. This time, we did it as a premedication before the IVIg, so the circumstances and the combination of things going on in my body are a bit different. They have helped to alleviate some of the IVIg side effects, but it has been a very unpleasant journey. In addition, the Prednisone does seem to have a negative effect on my hand strength, so the benefits of the IVIg are held back somewhat. This is something that also happened in my last treatment cycle.
The good news is that my consulting neurologist from Johns Hopkins suggested something different next time. The thought of having to fiddle with doses of Prednisone each time was really depressing me. Instead, he's suggested an IV cocktail of dexamethasone plus a couple of other "mixers" as a one-shot premedication. It's a much stronger form of steroid, and because it's a short, sharp dose, the side effects should be reduced. Anyway, something else to look forward to in a couple of months ...
Wednesday, April 1, 2009
juicing again
Walked in this morning for the third and final day of this course of IVIg, and Michelle (Jamie has left the position, so Michelle is running the "juice bar" while they find a replacement) greets me with a friendly "How are you?"
"It's fantastic! I woke up this morning with full strength in my hand, and the side effects had all just vanished .... APRIL FOOLS!" Maybe it was funny at the time. Maybe you just had to be there.
I should hardly be surprised. The side effects started showing up an hour or so after the first day of juicing, and have steadily increased. Hard to tell if they are slightly less severe than last time as a result of the premedication with Prednisone - I think it has helped a bit. Will be watching it closely over the next few days as I continue with the Prednisone (plus regular pain medication), and then taper off for a few days. On the bright side, there is a slight improvement in hand strength, and it isn't collapsing under any pressure the way it was a few days ago.
So having established that the juice does help (just that it doesn't quite get on with me), this now turns into a trial-and-error exercise in working out how to manage the side effects: headaches, neck soreness, sensitivity to light and loud noises (like kids crying and shouting). It looks like a mild case of aseptic meningitis (which is what they suspected the first time around), which is usually treated with: steroids! So for each juicing, we will attempt to tune the Prednisone dose to one that works, and hope that other things remain stable for a period of time.
Of course things would be boring if the Prednisone didn't have its own side effects: a touch of nausea, sleeplessness (although I felt quite tired this afternoon), edginess (but who wouldn't be in my condition?) I'm thinking the best thing to do is head off to a spa for a few days of R&R after each juicing. Do you think I can get a prescription for that?
"It's fantastic! I woke up this morning with full strength in my hand, and the side effects had all just vanished .... APRIL FOOLS!" Maybe it was funny at the time. Maybe you just had to be there.
I should hardly be surprised. The side effects started showing up an hour or so after the first day of juicing, and have steadily increased. Hard to tell if they are slightly less severe than last time as a result of the premedication with Prednisone - I think it has helped a bit. Will be watching it closely over the next few days as I continue with the Prednisone (plus regular pain medication), and then taper off for a few days. On the bright side, there is a slight improvement in hand strength, and it isn't collapsing under any pressure the way it was a few days ago.
So having established that the juice does help (just that it doesn't quite get on with me), this now turns into a trial-and-error exercise in working out how to manage the side effects: headaches, neck soreness, sensitivity to light and loud noises (like kids crying and shouting). It looks like a mild case of aseptic meningitis (which is what they suspected the first time around), which is usually treated with: steroids! So for each juicing, we will attempt to tune the Prednisone dose to one that works, and hope that other things remain stable for a period of time.
Of course things would be boring if the Prednisone didn't have its own side effects: a touch of nausea, sleeplessness (although I felt quite tired this afternoon), edginess (but who wouldn't be in my condition?) I'm thinking the best thing to do is head off to a spa for a few days of R&R after each juicing. Do you think I can get a prescription for that?
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