Prednisone journey blog

My conversation with my neuro was that we would progress at 60 mg until we saw some clinical improvement. I expect it to be a couple of months at this high dose, and then the process of getting off the corticosteroids. The first day I took a 20 mg pill. I also take quite a bit of pain meds. Morphine and prn percosets. I take keppra for nerve pains and muscle relaxers for my back. Knowing that prednisone is a huge anti-inflammatory and has the ability to reduce or eliminate muscular/skeletal pains, I am also trying to reduce my narcotic intake. Both at the same time. I think I am nuts.
Well, after the first week, I have reduced my morphine by half, used only 1 percoset all week and muscle relaxers twice at night. I have tried to watch what I am eating and have started drinking more water and less tea. (iced tea for all you non-southerners). I take the prednisone in the morning with food. All 60 at once. I still am having problems sleeping, as yu see by my post time. Today I didn’t take it until 11:00 am. It is nearly 3 am and I have to be up by 7:30 to shower for work. Looks like a goofy day ahead. I ate three times today, but have been able to keep my weight steady. Last time I did prednisone I gained from 275 to 335. I don’t want those prednisone pounds back. they were hard enough to lose the first time. My foot pains are down, and overall I am feeling the positive effects of the steroids on my body. The last time I felt great until my reduction dose got down to 20 mg every other day. See you next week.

I have sleep apnea and am quite fearful about taking a sleep aid. I am surer that I will adjust in a little time. I hit some golf balls today, the first time in about six months. I also walked straight up the steps this morning, not a one at a time shuffle. I guess the steroids are taking hold of my body. The additional movement is nice, I just wish it would continue after I quit taking them…….

Mark,
OMG! I could not imagine taking 650 mg at one time !! I am working through the ups and downs right now. The dogs needed to go out at 3:30 am and now I cannot get back to sleep. Edgy and irritable today. The sleep part has been uneven, but I work my best around it. I only work 5 hrs a day, 3 days a week, so I have chances to sleep during the day sometimes.

I love the “its the prednisone” sign idea. Not only to help me, but to remind those around me that I may get testy and it isn’t their fault. Last night I was so wore out, tired and sore, my wife wanted to snuggle and comfort me, but I was too “touchy”. I think she forgave me and understood because we went through it before the last time, but I still feel bad about not being there for her emotionally when she wanted.

Hopefully a little typing can clear my mind enough to sleep.

Mark,
The first time I underwent the prednisone therapy it was in 2000 and 2001. Since then I had 2 rounds of IVIG in 2003 and was on Imuran until I could not afford it. After being off Imuran 9with no significant change) My neuro said no big deal, it must not have been helping much. I found that ater I was approved for SS Disability and didn’t work, the lowered stress and less pressure on a “working” body allowed me to stabalize and I remained fairly stable from 2006 to to 2009. In 2009 my old Golf Club needed me to assist in a transition from one golf pro to another and I helped out. The stress and activity caused a rapid increase in CIDP symptoms and pains. I have transitioned from that assignment to a 15 hour a week post where I do mainly bookwork. The work is not physically demanding, but can be stressful at times.
And, here we are. I am hoping that a brief course of treatment can re-stabalize my symptoms and allow me to continue forward.
In regards to infusions,, I can bring this to my neuro. He has some experience with CIDP, but I don’t think it is as extensive as my old neuro at Duke. Maybe we can have a discussion and see where he wants to go.
In regards to where I am now, I still get jittery through the morning after taking my dose in the AM. I understand the every other day advantages, but I also wonder about the heavy effects on the “even” days. I am really hoping that I can be off the daily 60 in a couple of months and then start tapering down.
On the good side, I played 4 1/2 holes of golf yesterday. Carts were on the path, so I couldn’t walk too far. I hit balls into my net out back this morning, and got the dishes done. I think my wife will be taking me shopping for groceries, and that will be enough for the day.

Have a great day !!

Dixie, The easiest way to communicate the biggest differences between GBS and CIDP is that GBS hits hard and fast, while CIDP is a longer term chronic, variety. The damage to the body is very similar in the way that it is a demyelinating polyneuropathy, the main difference is the time frame of attack, and then recovery. Hopefully, as you recover from your GBs attack, you can regain most of your function and get back on the course again. Just be careful about stiff muscles that might not do what they did before . Maybe it will be easier to get rid of that slice !!
Dick S

I had a much more “normal” day today. Prednisone in the morning with an egg and cheese sandwich. I did 6 hours at work and came home. I planted tomatoes, had supper and rested. I don’t feel jittery and I hope for a good night sleep. Last night I was exhausted and fell asleep in my recliner. I woke up around 3:30 and got some good sleep with CPAP until 6:30. Maybe tonight I can sleep from 11 til 6:30. I have a stressful day at work tomorrow, then off for the weekend. Hopefully things are levelling off a bit. We’ll see. y the way, I have gained 4 or 5 lbs. y-u-k

I worked hard yesterday. I weighed last night and am now weight neutral for this medication cycle. If I have one big personal goal it is to remain weight neutral, and get better of course. Salad last night with pork from the grille. I was exhausted yesterday, I overdid and overdone. On the good side, I slept very soundly and awoke refreshed for the first time in several days. This morning I watered the plants in the garden and had breakfast. rest until 12 and then go back outside and enjoy the day. I had a great family day yesterday, everything was really positive all day.
Mark, thanks for the veggie tip I guess if I am not pro-active about what and when I eat, I will see more of myself in the mirror.

You all have a great day.

Willem, I was originally supposed to start IVIG but it was not affordable. I have medicare and the copay portion was greater than my pocketbook, so I opted for a cheaper treatment. You are right, the side effects of corti-costeroids can be devastating over a long term. It is still my hope that a shorter burst of treatment, followed by a drawdown can be effective.

On other notes, I suffered through a summertime flu or bad cold or something. I had several headaches, a fevery achiness, sore throat, and overall tiredness. I felt like pooh. I started feeling better over the weekend, and now I ran into another sleepless night. 0 for Sunday night. I guess that means I will be groggy on Monday.
A h-h-h-h the vagaries of prednisone.

Good day at work. Got there at 9:15, left at 3:00, didn’t fall asleep, did an orientation interview, paperwork caught up and played 9 holes. 2 birdies, 3 balls in creeks and I blasted out of the bunker on the last hole and ricocheted off the clubhouse. No broken windows, but I got great backspin on the deck carpeting :-). I see a very serious nap in my future. My wife brought home Subway, it was great. Gonna watch Eureka if I can stay awake.

Dr. appointment next week.

I refilled my Rx for prednisone yesterday. I guess that means a month has passed. So far I have managed my weight OK. I have not gained or lost more than 3-5 lbs, so I guess I am happy about that so far. My sleep has generally been uneven at best. Some nights I sleep well, and others I cannot sleep at all. Emotionally, I think I am basically balanced, but then again, the medication is consistent. I know that when I begin to taper down the dose changes will affect me. I think I am a tad more blunt, and have less patience with people, but life goes on. Physically, my muscles have been more friendly towards me. I can get more done and recover faster. I have played 9 holes of golf twice and 4 1/2 holes once. Although my feet still hurt obnoxiously, I recovered by the next morning. I hope to be able to play all 18 holes in one day. That would be a good goal. I still think playing golf both days of a weekend is out of reach, maybe by the end of summer ?? Numbness, and other CIDP symptoms, maybe some days better than others. I woke up the other day and I felt completely numb from the upper thigh all the way down to my toes. My hands still quiver. Sometimes I feel like a wound up rubber band in a child’s wind up airplane. Other than those issues. I don’t think much else has changed. I still feel positive and still hope for the best.

I cut my hair today and looked at my face today. Fatter !!!. It looks like the hump on my neck is growing. That is a bummer. I slept like a log last night. I fell asleep at 10 pm and woke up at 10:30am. I didn’t even get up to pee. Now it is 11:04 at night and I am still up. But I feel OK.

My Dr appointment is next week and I will get “evaluated.” I feel stronger physically and I recover better from activity due to the Prednisone, but the numbness has not changed. I am taking less pain medication, but I still wonder what will happen when I stop the steroids. the last time all the pains came back with bonuses. I think I have added a little weight, and I have such a hard time getting rid of it.

That is about it. I’ll post after the Dr. visit.

I went to the Dr. yesterday. Good appointment. We agreed to begin to taper down. My strength is a bit better, but the sensory aspect remains the same. He was disappointed about my inability to do the IVIG. He understood the cost and is trying some things to soften the blow. He suggested things like home infusion to avoid the “facility fee”, and I asked about company assistance. He said they would try their best to get me an IVIG infusion series. Otherwise, taper down and come back in a month.

As I have posted elsewhere, My IVIG treatments were approved. Many thanks to Walgreens, Gammaguard, and the people at the Dr. office who would not accept less. They all made it happen. Now I am reducing prednisone and am down to 20 mg daily. I go back after the 4th of Ju;y and evaluate. I suspect emotional decay this week as I adjust dosage frpm 40 tp 20. Otherwise OK

Well, after the IVIG reaction, I quit the prednisone and have been off it for five days now. I guess my hormones are battling back to normal. The past couple of days I have been easily tired and felt like a wet wash rag. Just pooped out. A lot has been going on with my body, IVIG, a reaction, Hot outside temps, end of month paperwork at my Part-time job, cutting Prednisone, etc. I guess it will all sort out in the end.