I’m aware that reading past blog entries leaves something to be desired in terms of understanding our clinical course, so this is an attempt to take stock of where we’ve been and where we are.
I hate rating scales. I picked the KPS as the most basic. I considered all the rating scales used most commonly in CFS. I like following hours upright, but can’t stand to keep track and it varies from day to day anyway. Some scales lump physical and cognitive deficits together which doesn’t work for us, as our experience is that cognition is the last thing to go and the disparity between physical and cognitive symptoms makes accurate answers impossible.
Having followed our improvement in KPS points, it doesn’t seem useful or relevant at the moment. Here’s the part of Karnofsky Performance Status scale that I’ve been attempting to use lately:
- 80% normal activity with some difficulty, some symptoms or signs
- 70% caring for self, not capable of normal activity or work
- 60% requiring some help, can take care of most personal requirements
The difference between 70 and 80 KPS points, involving a return to function in the world, seems a much bigger incremental improvement than the 10 points before that, which are about improvements without returning to the world of work. I’m beginning to confront the realities of returning to work and, trust me, it’s a much bigger step than going from being cooked for/picked up after, to doing those things for yourself.
So I’m done trying to quantify it. It’s a moving target anyway, because the illness is still there, a sine wave, of variable period, though now superimposed on a slow uphill trajectory. I’ve said in the past that we were still below water, looking up at the surface. Now we have broken through, but the troughs are still a little under water. I’m not interested in arguing with anyone about whether we are better. We are a lot better. Looking at roughly three month increments, our slow but steady improvement is obvious. The important question is why.
This is what happened. We started AZT and Isentress, within days of one another, in early March. The drugs flared all of my symptoms, but my neurological symptoms in particular. Ali did not have problems starting the drugs. A few weeks into treatment, I experienced a reduction in malaise (for me a feeling of viral prodrome, a persistent symptom for 15 years). At about six weeks we both experienced a transient increase in physical energy which was uncharacteristic of anything we’d experienced in years. However it didn’t last. Also my flared symptoms weren’t resolving. I was a bit frightened by the flare, since I had no idea what to expect, and I also started hearing negative reports of people who had started on Isentress alone. So we both stopped Isentress and, surprisingly, we both got noticeably worse, Ali with immediate increase in sugar reactions, strangely. So we went back on. I would like to say here that what we did is not a good idea. Because we know nothing about the potential of the virus to become resistant to the drugs, commitment and compliance with a regimen is likely very important. With HIV the success of treatment declines in direct proportion to poor compliance.
I tried to add Viread and almost immediately experienced a severe flare of symptoms. I again chickened out and went off. Ali, who had had essentially no trouble with the drugs so far, decided to take it (about two months into treatment). Two weeks after adding the third drug she experienced a noticeable reduction in symptoms. I decided that I too wanted to take it, so I tried again at half-dose, with fewer problems than before. I went up to full dose after a week (roughly three months into treatment). About two weeks after adding the third drug, I too experienced improvement.
In August we were doing well enough that we tried to transition to more active, stressful lives. Ali tried school and I went to Reno for a few very active days. I expected a full crash after that trip, which did not come. We both dipped a little over a month or so. We backed off and started slowly up again, more moderate in our expectations, knowing that we are improving, but slowly.
Moment to moment, day to day, even week to week, we can’t feel improvement. The variability that characterizes the illness continues, but it all seems so much less potent. I use the metaphor of an abusive boyfriend who drops by to slap me around if things get too good, but he is visiting less and less often. He’s getting soft or I’m getting harder to push around. Some days, he has no power over me at all.
Ali started Deplin about six months before antiretrovirals and Actos two weeks before. I started Deplin a couple of months before antiretrovirals and Actos recently with an obvious response. Recently we have added B12 shots. We have taken a lot of parenteral B12 in the past, including daily injections for a month at a time on a couple of occasions, without noticing benefit, but what didn’t help before treatment with antiretrovirals, might now. I am hearing from people who report having been helped by B12 injections.
We have otherwise been on a supplement holiday since starting antiretrovirals. We have taken tons of supplements over the years and it was a relief not to take supplements for a while. We are now starting to add things judiciously. We are taking Meriva SR, a more absorbable form of curcumin, for NFkB inhibition.
After about a month of Actos 15mg, and with further reading, I went up to 30mg. The literature generally talks about 30-45mg daily. Here are a few more references pertinent to the use of Actos in X infected patients:
- Effect of pioglitazone treatment on behavioral symptoms in autistic children. Boris
- Effect of pioglitazone treatment in a patient with secondary multiple sclerosis. Pershadsingh
- A pilot test of pioglitazone as an add-on in patients with relapsing remitting multiple sclerosis. Kaiser
- Proinflammatory Stimulation and Pioglitazone Treatment Regulate PPARγ Levels in Peripheral Blood Mononuclear Cells from Multiple Sclerosis Patients. Klotz
- Pioglitazone Enhances Mitochondrial Biogenesis and Ribosomal Protein Biosynthesis in Skeletal Muscle in Polycystic Ovary Syndrome. Skov
Ali completed her writing challenge. 50,000 words in a month. Quite an exercise. I’m sure you will hear from her when she recovers from her writer’s cramp.