Peeling away the layers

The TCM experiment continues, with some success. Since I've been receiving regular treatment - acupuncture, cupping, and more recently a special custom blend of herbal tea, there have been some noticeable changes and improvements.

My principle objective measure is the weekly strength tests I apply, and on that basis, there is more sustained strength in three of the four fingers I test on my right hand. The strength in those fingers used to start decaying after 3 weeks or so, but are now staying stronger than ever after 5 or more weeks. In addition, I've been stretching the period between infusions past six weeks.

My index finger, unfortunately, is showing little improvement at all. It is still the weakest by far, with barely 5% of what a normal finger strength should be. The practitioner has tried several things particularly directed to the function of that finger, but with little effect.

The original diagnosis was "too much heat" (whatever that means in Chinese energy terms) and that was being treated. Since that time, as there have been improvements in that aspect of my energy balance, other issues have surfaced and continue to be treated. She compares it to layers of an onion - as one problem clears up, others problems are more visible.

The biggest challenge for me is to get in touch with my own body. I certainly feel a little more relaxed and have more energy. My New Year's resolution was to exercise more (whose isn't?) and I've been walking 3-4 times a week steadily. I'm doing that with far less fatigue than in the past. So far; so good.

One issue that doesn't seem to go away is a bicep problem, which has been with me on and off for several months now. When it first popped up, my neuro sent me for some ultrasound imaging, which showed nothing. However, the pain when flexing my bicep didn't go away. Eventually, I went for some physiotherapy, which has helped a bit. But then it recurred, and took a step backwards after I played cricket (have decided to take a break from that until it's all better). No-one is yet to give me a diagnosis, although the physio suspects it is tendonitis. Today, my neuro injected some cortisone in the area, which was a most unpleasant experience. The arm was sore for several hours, and I was also quite nauseous. If that doesn't help in a week or so, then it's off for another MRI to see what it can see.

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?

'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 ...