high dose of Prednisone Question

From August last year until February this year, I was taking 3,000mg of methylprednisolone IV every month as well as daily azathioprine and still continued to work, taking taxis to and from. Of course, I was around the same people every day, but they brought their own caches of germs with them, and my neuro didn’t worry about what I might catch despite the suppression of my immune system.

Of course, the circumstances are somewhat different: I’m in a different country and not around lots of young people. And at the time we didn’t have to worry about swine flu.

Keep fighting,

Deb
London

Hi, I understand everyone is different, but I am a small female and started out with 60 mg of prednisone, have tapered down slowly over many months, and I did not notice being more susceptible to any illnesses during the high doses. My doctor warned me about it, said it was a side effect of prednisone therapy, but did not instruct me to avoid being around large groups of people or wear a mask or anything like that. He just said I may be prone to more illnesses, but I have not noticed being any more susceptible to things than I was before prednisone therapy. I am now down to 3 mg and get IVIG every other month, and take 100 mg of Imuran daily. My disease is being controlled very well. How long is your son supposed to be on the high doses?

I did high dose prednisone as well. Prednisone, at a high dose, is not a long term treatment. By long term, I mean several years. Generally, the high dose is used until clinical improvement begins, and then tapering down to as low a dose as possible. There are certainly side effects, and you need to be aware of them,

I am surprised about not attending school. Is there any other treatment in addition to the pred.?

Generally I defer to the expertise of the neuro, generally they know best in the situation. You can certainly ask him to explain why he doesn’t want Ryan going to school. Maybe he thinks he will be under additional stress and/or pressures.

It is so hard being a caregiver. A caregiver, and a mother as well is quite a challenge. We always want the very best for our kids (I have 3) and are disappointed when things don’t go right. Remember that your son will pick up on your position and it will affect him. If you are upset about something, he will wonder about it as well. I don’t mean that you need to be Polly-anna, but where you go, he will follow.

Keep a good ear for him, and let him vent his frustrations about CIDP. Help him understand how the disease works and how the treatment will help. Be supportive and informative. Tell him where to find info, send him here. CIDP is a lonely disease. You don’t meet others who have it, it is so rare. You can always find someone who has a bad back, or someone with diabetes, or heart attacks or whatever, but CIDPers are hard to come by. I came here for support, knowledge, and comfort. We all need that.

I am cheering for you and him. I hope the treatment has a positive outcome.

Ah-h-h-h I see. I read your other post about having plasma pheresis as well as the Prednisone. That makes some more sense about school. Hopefully he can get back there soon.

IVIG doesn’t always help everyone, it didn’t help me. It does help a lot of people. I am glad you have a good treatment regimen.

If you are not comfortable with a neuro, have the one you trust recommend someone. Your attitude will trickle down to your son, and he will lose confidence in him as well. Think about how good you feel with Dr. Lewis, and how you talked about the other guy. Sounds like a good decision to me. Dr. Lewis will pick someone he knows, and a good line of communication will be established. I also work with a local neuro through to the University Dr who diagnosed me. I had someone like the “God Guy” you talked about. It was a waste of time and money.

Good luck, I’ll be thinking of you both

Dick S

Rhonda,
can Ryan stand at all? wheelchair all the time, bed bound?

I guess from your comments, he is arms and legs affected? there are some great people here who have been as deeply affected and have made some recovery.

I would love to correspond in any way possible. There are some computer applications that will allow him to speak instead of having to type. I don’t know which ones are the best, but I am sure someone here does. Either by e-mail, phone, or whatever.

Let me know
Dick S

check with the school he wants to attend. Most schools have a department that works specifically with students with disabilities. He may be able to take his classes via closed circuit television or some other type of allowances. Don’t give up, where there’s a will there’s a way. This might be something he needs to keep him going emotionally. Keep us posted

Honestly, I don’t think prednisone wreaks that much havoc on the immune system. I’m not sure how adding PE will affect it though. Maybe the two of them together is why the dr is showing so much concern. If I were you I would contact Dr. Lewis & ask his opinion.

Emily was on 20 grams of prednisone a day & in kindergarten. She did catch every cold going around at that time but I can’t say she wouldn’t have gotten sick if she wasn’t on the ‘roids.

If you are concerned about the long term effects of prednisone maybe you can speak with Dr. Lewis about doing IV ‘roids. Apparently they are tolerated better & have fewer long term side effects.

I hope Ryan can find a way to continue to live his life & move forward.
Kelly

We have been very lucky with school and accomodations. As mentioned, there are departments set up specifically for disabilities. I do not know if the same term is used in college, but in K-12, it is an iep, individualized education program, or a 504, which makes certain adjustments such as turning in things late etc. (we have the 504) You should call a school counselor. If Ryan is in a wheel chair, weak, etc, I agree, it would be too much to be on his own. When Kevin goes to school all day, he comes home wiped and he is not doing anything like making his own dinner etc. When he is tired, his stress and anxiety kick in and his headaches increase (I have just concluded that the headache problems he was having other than ivig reaction for sure were stress induced. He has been pretty headache free all summer)

Something else, I bet there are scholarships or grants available. If Kevin still has this crap in College, I plan on turning over every possible grant or scholarship application!!!!

Good luck!
Dawn Kevies mom

[SIZE=”4″]When I went up to 80 mgs., I got a lot of side effects. My sugar went from 87 to 354 in 3 days. My head got huge along with my belly. Drastic mood swings. After 2 weeks, I was back down to 60 mgs a day. My sugar went back after a week. I’ve been fighting the other stuff for years now.
One reason he can’t go back to school is, the steroids are suppressing his immune system. I wasn’t allowed to be near people because a simple cold could throw me into a severe flair up or worse. This is nothing to take lightly. It is serious.[/SIZE]

Rhonda, Is Ryan taking his pred with food and milk? If not he needs to try that. If he is then he needs to try it without. If one way doesn’t work usually the other will be better. No antacids with pred also-can really mess up the meds and the stomach. You said Ryan can walk in the pool, is he receiving aquatherapy on a regular basis? If not he should be-it helps alot.
I’m glad Ryan is taking courses online-going into a germ arena like college is not a good risk to take, especially with menigitis hanging around along with all the usual stuff. Take care.

Ask if he can break up his dose throughout the day. Maybe he can take 40 mg in the morning & 40 mg at night or if that is still too hard on his stomach maybe have him take 20 mg 4 times a day.

I’ve never heard you can’t take antacids with ‘roids. The MDA dr who put Emily on ‘roids told me to give her Tums to help settle her stomach & to help replace some calcium. Hmmm….I knew I couldn’t trust that dr.

Kelly

I was on 250ng/week (pulse once a week dosing vs every day…really cuts down on side effects, you might want to look into pulse dosing 500mgs/week) and was never told to stay away from anywhere. I was told to continue as I had been.
I was also told to take an acid reducer such as pepsid or tagemet 30 minutes before taking the pred. It made a big difference whether or not I got nauseated. There are studies that show that ingesting antacids and prednisone together does not affect the serum levels of pred., but if you are worried that it will affect the pred absorption then just take them 30 minutes to 1 hour before the pred.

Make sure he gets plenty of calcium and vitamin D to help decrease chance of bone loss.

[SIZE=”4″]I have to disagree with not taking anything to protect your stomach. Antiacids will coat & protect the walls. Since day 1, I’ve been taiking a prescribed Pepsit for just that reason. The steroids will destory the stomach long term. I’ve been on steroids since Aug.,2004.[/SIZE]

[SIZE=”4″][COLOR=”DarkOrange”]Sometimes my pee was like orange syrup.
[/COLOR][/SIZE]

there are many studies done on pulse steroid therapy for CIDP. A person takes a set amount of steroid once a week (I had 250 mgs, some use 500 mgs) instead of everyday. Short term the pulse dosing has less side effects but long term the side effects are the same. Dr Parry and others use this type of treatment with good results.
If I had to go on steroids again, I’d go with pulse dosing.

I just got a call from my Neurologist and she said my CIDP got worst and she wanted me on IVIG. I told that didn’t work for me she said yes it did. I said no after my 5 days of IVIG in 2007 I was put on a high dose of Prednisone fro 2 weeks and after 8 days I noticed a difference in my hands and my hearing. The improvements stopped when they cut me off the Prednisone

So she is putting me on a high dose of Prednisone. 50 mg for 2 weeks then I will be going down to 40 mg then 30 mg and slowly weaned me off of it. I go see her August 26 for more nerve testing. I told her if then it showed that the Prednisone didn’t work then I will try again the IVIG.

I know my hearing specialist in Ottawa gave a low dose for 1 month in June but it didn’t do much for me I needed a higher doses but she wouldn’t give me anymore. I also know when I got off it it did affect depression big time but now I know what to expect I can always ask my other DR to increase my depression pill if I need to for a while if I feel my depression coming back. Right now I am not on the maximum dose.

Sue

I have been on high doses of methylpred for almost 2 years now, am currently at 250mg twice a week and for the last 6 months or so have also been taking 200mg cyclosporine daily at the same time and have not noticed any problems with catching colds or the flu more frequently, although I am careful about who I am around. As to the stomach issue’s my neuro has me taking Prilosec as needed, most of the time I just take it about a hour or so before I take the steroids and for the most part have avoided any stomach problems…..at least that I know of.

If sleepingf becomes an issue, take the second 40 earlier in the day. I know many people (me included) that got bursts of energy, and were too hopped up to sleep well if they took the pred. too close to bedtime. I hope you have worked out the stomach thing

Dick S

My neuro started me on the pulse steroids last month. 200mg two days in a row once a month. This month he will increase it to 250mg for 2 days. I can tell you I feel so much better as far as the fatigue is concerned, but my pain is a lot worse. My hands are really painful. I take Lyrica 100mg morning, 50mg noon and 150mg night. I can sure tell when it is time to take it because of the increase in pain.
I had an episode last week that was scary. Pain started in my upper spine, real sharp pain, then it spread around my left side around my ribs and up my neck. It felt like tendonitis. I could not turn my head. I took Naproxin for a couple of days and it went away. This was new to me.
My feet are so numb that a couple of months ago, I broke my little toe and did not know it until it turned black.
It sounds silly to say I am in more pain and feeling better:o but not having the horrible fatigue and weakness is almost a good trade off.
Hope to get to know you all as I am new to CIDP and my doctor is verbally saying it but has not given me the official diagnosis. He said if the steroids help me it is an indication of an autoimmune disease and will help document the need to treat me for CIDP. I went to Shands at USF in Gainesville, FL. and the guru doctor there said it was in my spinal cord. Transverse Mylenitis. My neuro did a LP and a contrast MRI and found nothing. He says the paroneal nerves are being affected now. (my butt is numb:eek: )
My illness came on very suddenly in 2005 and I was close to bedfast for 6 months. I am on a walker now but I have been back to work for almost 3 years now. I have a desk job but there have been days that I hardly remember being here.
I have been reading the forum for several months now and have just started to post. I physically relate to so much that is said here.
I have struggled at being my own advocate as most doctors do not know how to treat CIDP. When my neuro said idiopathic neuropathy, I said “not good enough, keep looking.” It would have been easy for him blow me off but I refused to let him.
Enough from me I must get back to work.
Have a peaceful day.
Sue

I have been on a very high dose of prednisone for months on end without ever getting sick (and I was not at home, but out and around a lot of different people every day). I was also undergoing plasmapheresis at same time. I don`t mean to compare my situation directly to Ryan`s, as every case is different. Just want to share that some people like me do not seem susceptible to communicable diseases because of the taking of prednisone. Best of luck to Ryan and your family. Sometimes CIDP can be beat!
-derailleur

I was on 60 mg every day and riding the subway! and if the bad surgeon hadn’t sewed up my biopsy incision with dissolvable stictches I wouldn’t have gotten anything. But by riding the subway with an open wound for 30 minutes I ended up with a flesh-eating bacteria. Fun times! I can laugh about it now but at the time it was terrible.

I used to catch everything, prior to the pred. I’m much healthier now, probably because I’m more careful. Ryan will get the hang of it.

Re: the stomach upset, my dr specifically recommended bread or milk, along with the xantac he told me to take.

I’m still on pred. I think it’s been 15 years now. I’ll probably be on it forever. I’m not 100% happy about that, but the pred side effects are better than being in a wheelchair.

-marie