death by a thousand cuts

My status update

As most dermatomyositis and polymyositis patients can attest to, recovery from the onset of the disease or from a flare-up can be a frustrating process. Some weeks you feel improvement and others you feel you are slipping back. After a few weeks of not sensing any improvement, I have felt more energetic the last two and am happier as a result.

It has been a very busy week or so for me. I have seen my rheumatologist, primary care physician, dentist twice and spent five days in Reno attending the TMA Annual Patient Conference.

My rheumatologist visit went well. I see him monthly and so he is in a good position to gauge my strength level. He noticed my strength improving. My hips are the weakest and he also could see my rotator cuffs being particularly weak. I have not started any exercise to strengthen these areas yet. I wanted a few good weeks of recovery before I begin. Yes I know that exercise is probably the most important treatment for our condition after the drugs we take.

Finally I have started to taper down on prednisone. I have been on 60mg daily for a month and am now tapering by 5 mg a week. Some doctors at the TMA Conference are comfortable tapering by 10 mg a week when on higher doses, but I feel 5 mg tapering is a comfortable level for me. You never want to taper too much and risk exacerbating the flare.

After six weeks on high doses of prednisone, I am exhibiting a lot more of the side-effects. I have frequent headaches. Usually I can tolerate Ibuprofen pretty well, but not lately as it causes me an upset stomach. I am drinking a lot more water to see if that helps. I have started taking Ambien to help me sleep better at night. Even though I take all my prednisone by 8 AM, I still can only manage four hours sleep at night. Ambien has allowed me to get a full night’s sleep. I did learn to take it after I put my son down to sleep and not before as I am out for the count after 30 minutes. In addition an hour after taking the prednisone I start sweating profusely, particularly my face. This lasts about 20 minutes.

My brain fog is starting to lift. I participated in a DM/PM focus group at the TMA Annual Conference. There were ten of us in total, where we sat around a table for two hours to openly discuss our quality of life issues. Brain fog was an issue for just about everyone. I recalled how when cooking eggs for my son one morning it took over 30 minutes to come up with the word ‘scrambled’, which I thought was very apt for how my brain felt. Apathy and fatigue were also major issues. When we wake up in the morning we are full of plans for what to do that day, only to achieve little and feel depressed about it at the end of the day.

My major side-effect with prednisone lately has been nicks and cuts. I started getting them all over my arms, hands and legs. Every day I get new ones sometimes over an inch long. Prednisone does thin the skin. They are not sore, but they sure make laundry more difficult. The mysterious aspect is that I never remember doing anything like brushing against a wall or banging against furniture to get them. I just see them when I undress. When I went to Reno I started to get nose bleeds. Even though Reno is at 4,500 feet and a dry climate, I thought it would not be an issue for me. I live in Highlands Ranch, which is at 6,000 feet and an almost equally dry climate. Since I got back from conference, the nose bleeds have not stopped.

My rheumatologist mentioned I may go back on Rituxan in October if my condition does not continue to improve. We are also keeping IVIG in the background. I have not done it before and I attended a lot of IVIG sessions at the conference to learn as much as I could. There were several booths on IVIG home infusion services there. I will blog more in detail about IVIG soon. I did learn a lot at the conference from patients who regularly take IVIG who I am indebted to.

I wish I could tell you what my CPK numbers were for September. I do monthly blood draws and was hopeful my CPKs are continuing to drop. All my other blood results came back, but not my CPK value. I have been going to LabCorp for seven years and this was probably the only painful blood draw I got, which makes it more annoying. The prednisone is not helping. I still have the bruise from the blood draw site a week later.

I saw my primary care physician yesterday for other issues but also get my flu and pneumonia shots. It was seven years since my last pneumonia shot and so I was due for another.

I am back seeing my dentist again after procrastinating while dealing with my flare-up. I grew up in Ireland and never had a good experience with dentists. As a result I went through a period from my teenage years through my twenties where I did not take good take good care of my teeth. Now in my late forties I am paying the price for it. A common issue with DM patients I have met is gum disease and other dental problems. I do not know if this is as a result of us being on immuno-suppressant drugs which make it harder for our bodies to fight off infections. Thankfully I have a wonderful dentist here in Highlands Ranch who works great with nervous patients like me.

A final word on Acthar. As you know I did not have good success with the drug. At the TMA Conference I met four other patients who took Acthar. In all cases they had a positive outcome with the drug in treating their myositis. In one case when the standard dosage of bi-weekly injections did not work, which I did, the patient switched to a more frequent, lower dosage treatment which helped their condition.

 

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