notes on being itchy

Last Saturday evening, I was in enough pain that I took to Percocet tabs. That night my whole body itched so much that many times during the night I awoke to scratch.

Monday morning

I started anti-coagulant Lovenox (enoxaparin sodium) injections Friday evenings, 60mg/.6 ml every 12 hours, injected subcutaneously into the fatty tissue of my abdomen. The injections are unpleasant but not too bad really. The instructions say to avoid contact sports, shave with an electric razor, and use a soft toothbrush to minimize the risk of bleeding. Except for bruising at one of the injection sites, I haven't noticed any new or increased side effects after starting this treatment.

This is an expensive treatment and I am expected to continue this course of treatment for the foreseeable future. This raises concerns in me regarding a significant hike in insurance premiums which has already happened to the company for which I work annually for the past few years. I do not want to place this additional burden on our company.

At the same time, I am also very concerned about my future ability to be productive at work. I have already missed work due to my condition and foresee missing more in the future at an increasing rate. That really scares me. I have a similar concern about being able to function around home as well. This is what leads me to want to do what can be done to slow down the condition's progression.

I will make an appointment to see Dr. Leitch in a month to review this course of treatment.

Today's notes

I met with Andy Schakel last Tuesday afternoon and talked about the success of our pain management plan, maintaining pain levels around 3-4 since last week. We also talked about the side effects I have been experiencing, namely: I get drowsy, mostly in the afternoons; and continued difficulty achieving orgasm.

He suggested reducing the midday dose of MS Contin from 60 to 30 mg and also slowly decreasing the dose of Neurontin over time. Hopefully we can achieve a balance between the good effects and the side effects.

Since Tuesday, I have noticed I am not as drowsy, which is good, though sexual dysfunction hasn't changed. I am also trying to get more sleep by going to bed earlier. It's possible that lack of restful sleep is a contributing factor to these issues. I do notice that dropping the Neurontin dose increases my parasthesia. I will continue dropping the Neurontin dose further (currently 900 mg TID) to see if it has any positive effect. If the parasthesia gets worse, I will hold the dose to see if it levels out or gets any better at that dose. Otherwise I will increase the dose back to a previous level.

I hope to hear from Dr. Leitch's office today regarding the Heparin treatment so I can start that today as well.

today's thoughts

If I continue taking MS Contin even when I am not in pain, how will I know when a pain cycle has ended? In the past, I had tapered my narcotics as the pain level came down. Now, with pain levels around 3 and not taking any Percocet, I don't know if the pain has ended or whether it is just treated with narcotics enough not to notice. Does it matter?

Sexual dysfunction continues to be problematic. I will talk to Andy Schakel about it today during my follow up appointment. I am frustrated and starting to want to avoid intimacy to circumvent the issue. This is not what I am committed to and will work towards resolving the issue. I am guessing it is medication related. Perhaps some sort of change will make a difference. I have been told that sexual dysfunction has been much less problematic when I am between pain cycles, but if I don't know that my body's pain level has decreased, has can I know? Right now my pain level is down, but this continues to be an issue.

The current neuropathy treatment is successful enough. I continue experiencing discomfort when applying the Neurontin gel, but dropping my oral Neurontin dose is a good thing. I will continue this treatment for the foreseeable future. I still have neuropathic pain on the tops of both feet and especially around my ankles.

I have only one active ulcer and continue using Morphine gel on it. The others have mostly healed. 3 times daily is difficult to do, but I have been able to do twice daily very regularly. I use Neurontin gel at the same times, also twice daily.

I saw my dermatologist Dr. Nancy Leitch yesterday for a med recheck. I shared with her my concern about the rapid progression of this condition. Many years ago we discussed low molecular weight Heparin therapy and I brought it up again. We did not use this therapy back then due to my concerns about the potential side effects associated with taking a strong anti-coagulant, namely bleeding more than normal when injured. We did not know at the time how fast this condition would progress, which is what brings it back up now. She is looking into the proper dose and will call in a prescription by this week's end to start treatment. This therapy will be taking in addition to all other therapies, with the possible exception of the daily dose of aspirin, which I may discontinue. This medication is injected subcutaneously, which will take some getting used to. I will need to check into how to fly with syringes as well for when I travel. I may need to always check my luggage.

I had my liver function checked as is ordered by Dr. Leitch twice yearly.

Dr. Leitch also brought up PUVA treatment again which uses ultraviolet lights much like a tanning bed. If I remember, this treatment was 3 office visits weekly every week, and this schedule is difficult for me to keep. I don't remember seeing dramatic results when we tried it years ago. I do get a lot of sun exposure during the spring, summer, and fall months from spending time outside coaching softball, yard work, and cycling. I do not see utilizing this therapy again at this time. Other than this PUVA therapy, I believe I am doing everything that other patients with this condition have tried.

Dr. Leitch is calling Wound Care Clinic, a clinic that does hyperbaric treatment of wounds that reportedly speeds the healing process, to see if Health Partners will cover the treatment. This treatment is covered for similar ulcers due to diabetes. If so, I will schedule therapy next time I have ulcers break through.

Morphine gel

I used Morphine gel last night and this morning. I first noticed last night that its effect was dramatic and very fast: I noticed almost immediate relief and roughly an associated drop in 2 pain levels, from 7 to 5. This morning was similar. These effects were surprising to me. Also, I had to use 5 bandages to cover the ulcers and when applying this gel 3 times daily, and I do the multiplication, I will end up using a whole lot of bandages.

It has been a little difficult to apply the Neurontin gel and avoid the ulcer sites and the area around them so the bandages would stick to my skin, yet still apply to the areas that are most affected by neuropathic pain. It is still very painful to apply it since it is thick and doesn't spread easily (high viscosity) and also sticky. I will use it until next Tuesday to give it a full 2 week trial. Doug, one of my pharmacists, is very interested in its effectiveness as he suffers from neuropathic pain from type 2 diabetes and is also treating with oral Neurontin with decreasing effectiveness.

after seeing Andy Schakel and side effects

I saw Andy Schakel, the intern working with Dr. Belgrade, yesterday afternoon and discussed the ineffectiveness of the pain management plan that we came up with last week. We want to decrease the consistently high pain level and yet decrease the amount of short acting narcotics taken for breakthrough pain. We also want to decrease the severity of the side effects that I have experienced when on such high doses.

The new plan is to take 60 mg TID (three times daily) MS Contin for baseline chronic pain and 10 mg every 4 hours Oxycodone for breakthrough pain (up to 100 doses monthly) not managed by MS Contin. For neuropathic pain I will continue the 1200 mg TID doses of Neurontin and Neurontin gel TID on my feet/ankles, though administering the gel to a painful area of my skin three times daily is an excruciating experience. I will use Morphine gel TID on the existing and any new ulcers starting tomorrow when I pick it up. We will continue this course of treatment for a week and meet again at that time for a status check. I continue wearing support hose on my left foot/calf to minimize swelling and its painful effects.

One side effect I haven't blogged about much is a sexual dysfunction when using heavy narcotics. I have had trouble achieving orgasm during high pain cycles. I don't yet know if it's due to the decreased skin sensitivity from medications or the pain effects themselves. Though I don't specifically remember, I have been told that this problem happens more during pain cycles than not. I will try and track this issue better using this blog. I haven't achieved orgasm in roughly 2 weeks though have had sexual activity almost daily. This has left me feeling emasculated and frustrated. I do not want to tend to avoid sexual activity because of this problem nor do I want to have this worry in the forefront of my mind. Self fulfilling prophesy syndrome is certainly a possibility in that case.

After starting MS Contin yesterday, I was very tired today and slept from last night until 1:30 pm today. About 30 minutes after my first dose of MS Contin and a simultaneous does of Oxycodone yesterday, my pain level was down to 5 and I was able to walk without my cane for the first time since early last week. It was a welcome relief to have my pain level that far down. It had been at 6 or above since last week, with which is difficult to maintain my active lifestyle. It has stayed below 7 since then except for a little while today due to being late with my noon dose of Oxycodone. I am optimistic that we have settled on an effective plan.

Notes from 9-15-09

First of all, a correction: the dosage of Oxycontin I am taking is 20 mg TID, not 10 mg as I blogged previously.

I continued taking 20 mg Oxycodone every 4 hours yesterday in addition to 20 mg Oxycontin TID. I hope to hear from Dr. Belgrade today about a different care plan. I did not pick up the Morphine gel yesterday so haven't starting using it yet. Hopefully I pick it up today so I can start.

I am concerned about the amount of Oxycodone I am currently taking every day. I hope to start a different narcotic with a lower dosage.

Thankfully, I did poop a whole lot yesterday so I will maintain a once a day regimen of Miralax.

notes on nausea

Looking back at recent posts, I need to post an update on my nausea. It slowly dissipated and was gone by the end of last week. I also started taking narcotics by then so maybe that helped ease the nausea.

new pain regimen

Except for the Morphine gel, which I couldn't pick up until today, I had been following the new medication plan. I figured it would take a few days for my body to respond to the changes and offer the following experience description.

My pain levels have had consistent spikes in the 6-9 range. Spikes from 7-9 at night have become the norm in the last few days. I wake up from pain through the night. I also itch all over my body as a side effect. I wake up scratching, though it doesn't really provide any relief. Starting Saturday night, I went back to taking Oxycodone for pain relief, though that is not part of the pain management plan. I called Dr. Belgrade's clinic Saturday night around midnight but didn't get a call back so I went back to what I had been doing before. It didn't provide as much relief as I was hoping and, even on daily doses 80 mg Oxycodone, 60 mg Oxycontin, and 10/650 mg Percocet (5 doses daily) I can't get my pain level below 5 for any significant length of time. The Neurontin gel doesn't seem to provide any relief and is painful to apply. I will pick up the Morphine gel at noon today and apply it then.

I hope that Dr. Belgrade will generate a different pain management plan today and that I will get relief.

I also haven't pooped since last week sometime. I continue to take Miralax once a day but will start 2-3 times daily until I have success. I remember having major pain issues due to constipation in April. I vowed to never go through that again so am stepping up my efforts.

My feet swelled up early yesterday. I remember that has happened in the past during some pain cycles as well. I am wearing my support hose on my left foot/calf now to minimize the swelling.

new pain doctor

I met with Dr. Miles Belgrade and his intern Dr. Andy Schakel yesterday and an associated pain psychologist in the same clinic. The four of us discussed my pain experience and the history of my Livedoid Vasculopathy diagnosis. We developed a slightly different strategy for my pain management, which we will try for a month and then reconvene for review.

I will be decreasing the dosage of Neurontin from 5400 to 3600 mg daily. This should decrease some sexual disfunction I have experienced, which has been due to decreased skin sensitivity. I started using a Neurontin gel on the tops of my feet this morning, which is where I have experienced neuropathic pain. This should counteract the decrease in oral dosage and ease the burden on my liver, while maintaining or increasing the medication's effectiveness.

I will start taking longer acting Oxycontin instead of shorter acting Oxycodone. I will be taking 10 mg TID whether or not I have high pain levels. The theory is to even out the large swings in dosage from 80 mg daily to none. This should decrease the confusion I have experienced.

I will use 10/650 mg of Percocet every 4-6 hours for breakthrough pain, with a maximum of 100 doses per month.

Additionally, I will use a Morphine gel on my ulcers TID when they are present. This will preclude the use of Duoderm dressing, which I have left on for 3-4 days. I will try standand Band-Aids and see how that goes.

The Neurontin gel is only available from one Pharmacy locally as is the Morphine gel.

The overall plan is to even out the dosages of narcotics and use localized topical pain treatment to minimize oral narcotic use as well.

I talked to both Dr. Belgrade and his pain psychologist about my addiction concerns. It was their opinion that I posed a low risk for addiction with this course of treatment and my current mental, emotional, and physical state. This put my mind at ease.

It was troubling to realize, during the course of our discussions, that I have experienced high pain levels for 19 of 40 weeks so far this year. That's nearly half the year. Last night this led to feelings of sadness, inadequacy, loneliness, emotional pain, powerlessness, and anger. I was able to work through some of these feelings with my girl friend Kalyn, whose support has been unwavering since this spring. This morning, some of these feelings linger, though are not nearly as strong.

9-9-09 status

My unmedicated pain level continues to be around 6-7 and I continue to experience nausea. I will try using ginger ale and soda crackers to treat the nausea. I continue treating the pain with Percocet and last night supplemented with 10 mg Oxycodone.

current pain level

This weekend found pain levels 6-7 most of the time, which I treated with Percocet. I do wake during the night with high pain levels as well.

later 9-4-09

My pain level was increasing so I took a Percocet in the afternoon. I am now back down to a 3 where I am normally.

new pain

My pain level has been down since my last cycle ended a week or 2 ago.

I have noticed in the last 3 days a new pain radiating from the interior of my left ankle across the top of my foot. Pain levels up to 6 today without narcotics. I will treat if the pain increases.

My ulcers have continued to heal. There are 3 left all on my left ankle, 2 smaller and one larger.