Prednisone journey blog

    • Anonymous
      May 17, 2012 at 6:39 am

      I know many of us have done prednisone therapy at one time or another. My CIDP symptoms have been worsening and I was hoping for IVIG. I could not afford the co-pays, so I am back doing another round of prednisone therapy. I thought that I would generalize some comments once a week or so for others who may pass this therapy themselves. Feel free to add your own comments as we may be able to make this an instructive thread for others. I started last week at 60 mg per day with food.

    • Anonymous
      May 17, 2012 at 6:58 am

      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.

    • May 17, 2012 at 11:37 am

      Hey Dick – Have you considered taking Melatonin to help with your insomnia? I hear it works pretty well.

      When Emily was on the ‘roids I was told they make your body crave salty foods. It seemed very true for Emily. And she was constantly starving. She was 5 years old & gained 11 lbs in 2 months.

      I’m sorry to hear getting the IVIG didn’t work out for you. I think it’s terrible when someone can’t get the medication they need due to cost.

      I think it is great you want to share your journey. I’m sure it will benefit others.


    • Anonymous
      May 18, 2012 at 1:08 am

      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…….

    • May 18, 2012 at 4:26 am

      While it’s not ideal I do know some people who have no choice but to do long term steroid treatment. I know a young girl, with a disease called JDM, who has received IV steroids for 10 years.

      I understand why you would be worried about taking a sleep aid. I hope your body adjusts & you can get some sleep soon.

      And it’s FANTASTIC you were able to hit some golf balls & going up the stairs like that is great too!


    • Anonymous
      May 19, 2012 at 5:38 pm


      When I was on predisome the anxiety and feeling weird got so intense I started looking online for help. One of the best was put up posters on walls saying “It’s the Steroids…not you” and others like it. So I did a few signs myself and at 2…3…4 AM read them and yes, it helped smooth the predisone beast. On drugs such as these I’ll eat non-stop so I too have to be careful.

      I’ve been on IVIG for 7 years this month and having them 6 times monthly. Last week I said I had to cut back. The infusions was taking up my time and frankly I was so tired of having them this frequently. Down to once a week and hoping I can do this. CIDP fatigue is one bear I’m fighting right now and I try to go beyond the fog.

      I wish you well on your journey. Keeping your blog will give others a chance to read what you are doing (like Soapy’s). I miss the old forum’s private messaging so I’ll write to you here.


    • May 20, 2012 at 3:51 am

      Hello Dick,

      When I was on steroids for the second time, I found that taking a huge dose one a week pushed most of the sleeplessness and irritability problems to the day I took the dose. I also took it Friday evening, a couple of hours before bed. It did not keep me from sleeping that night, but I was pretty wired on Saturday. I did my best to stay away from everybody on Saturday because I was not really pleasant (understatement) to be around. However, by Sunday morning, I was much more like my normal self.

      The dose was monumental, 650 mg. Yep, more than half a gram at a shot. I did this for four weeks, and then cut the dose by 100 mg a month until I reached zero. The goal was to follow Gareth Parry’s idea of 1/2 gram of Solumedrol every week for a month, and then tapering the dose to zero over time, but without needing to go to an infusion clinic. I did this while waiting for an immunosuppressant to kick in. The protocol seemed to work well.

      Godspeed in dealing with prednisone.

    • Anonymous
      May 20, 2012 at 8:50 am

      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.

    • May 20, 2012 at 9:50 pm

      Here is a little background on prednisone and Solumedrol. Prednisone by itself is useless. However, the liver converts it to prednisolone, which is the active form. Solumedrol is just an infused form of methylprednisolone. Chemically, there only a small difference between the two, as you might guess from the similarity of the names. Pharmacologically, prednisolone is about 80% as effective as methylprednislone (that is why I took 650 mg: it the the closest practical equivalent to 500 mg of methylprednisolone).

      Dick, I cannot remember if you have had Solumedrol infusions. If you did and did not suffer too many side effects, then a 650 mg dose of prednisone should not present too many problems. I am not encouraging you to try this protocol (and nobody should until they have consulted with their neurologist, primary care physician, and all other specialists they see), just letting you know there are other options. Another one you might consider is a double dose every other day. Doing so helps keep the adrenal glands from shutting down glucocorticoid production entirely. It might be slightly less tolerable one day, but you should have a better day on the second.

      Again, Godspeed with this,

    • Anonymous
      May 22, 2012 at 7:55 pm

      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 !!

    • Anonymous
      May 22, 2012 at 11:25 pm

      Hi DIck, I’m only a couple of months into GBS and I yearn to play golf again. It makes me so happy to think of you playing those holes. The weather was beautiful in England today and I kept thinking and wondering if I will get back out there again.
      I don’t understand the challenges of cidp as this is all very new to me but I wish you well in your journey and please describe what the holes are like and how it goes next time 😉

    • Anonymous
      May 23, 2012 at 9:39 pm

      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

    • GH
      May 23, 2012 at 10:31 pm

      There is quite a range of variation, however. My case of CIDP more resembles GBS in its progression (“hard and fast”) than cases which progress slowly over years.

    • Anonymous
      May 25, 2012 at 2:09 am

      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

    • Anonymous
      May 25, 2012 at 2:56 am

      Are you getting enough rest? Sleep?

    • May 25, 2012 at 5:22 am

      The temptation to eat is bad with prednisone. One way that I managed to not gain much weight was I removed _all_ tempting foods from the house and at work. I carried no cash or coins, so I could not buy anything from a vending machine. I also made sure that I ate a lot of vegetables. It was not fun, but it was not too bad.

    • Anonymous
      May 27, 2012 at 2:13 pm

      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.

    • Anonymous
      June 1, 2012 at 12:11 pm

      Thank you all for these updates, I have read them with interest. I have been treated with dexamethason the last six months. This is a stronger variant of corticosteroids. I took 40 mg. a day, four days on a row, the rest of the month nothing, again four times fourty mg. etcetera. The main benefit was that it got me stabilized. The side-effects were severe though, both physically and mentally. Those side-effects were one of the reasons to start with IVIG. I have received two doses of 75 mg. now, and will receive three more in the coming months. I cannot say I experience positive effects so far, other than that I do not get worse. Side-effects are much less, one day with a severe headache and at the moment a rash on the palms of my hands, feet, fingers and toes for a week now. This rash is very annoying, as it makes it even harder to use my fingers. But if this is all, I keep on trying the IVIG.
      That’s about it,


    • Anonymous
      June 1, 2012 at 12:30 pm

      Small correction: I receive 200 mg. of IVIG once a month, not 75.

    • Anonymous
      June 4, 2012 at 9:55 am

      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.

    • Anonymous
      June 4, 2012 at 10:59 pm

      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.

    • Anonymous
      June 6, 2012 at 6:34 pm

      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.

    • Anonymous
      June 10, 2012 at 3:14 am

      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.

    • Anonymous
      June 14, 2012 at 10:32 am

      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.

    • Anonymous
      June 28, 2012 at 1:25 am

      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

    • Anonymous
      June 28, 2012 at 10:15 pm

      I am so glad you were able to receive IVIG”’ Please keep us informed about your prednisone reduction and then your IVIG sessions. I like having my infusions at home, it’s quieter, one to one nursing and we can dress accordingly.

    • Anonymous
      July 1, 2012 at 1:06 am

      I was using Ambien while on Prednisone. My relapses are so light I’ve just opted for no treatment to avoid the side effects of the meds. I have a new bone scan coming up since the Prednisone gave me osteopenia (precursor to osteoperosis). I’m in my 30’s. A friend of mine just had major back surgery and will have a hip replaced soon due to prednisone. He’s also in his 30’s. Take it easy and I hope you miss all the negatives.

    • Anonymous
      July 7, 2012 at 4:26 pm

      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.