I will say that when I was getting solumedrol infusions (prednisolone) that any effect I got was immediate, as steroids knock down the inflammation. It was enough to keep me out of a nursing home, but not to walk or have great use of my hands. The trade-offs were not worth it though, as the 21 months I was on them sure took a toll on me (gained 80#, had to have cataract surgery in both eyes back in 2004, made my bones thinner, etc.) IVIG is the best if it works I think, but it does not work for all…
I did some pulsed steroid treatment for a while, while waiting for azathioprine to kick in. We were simulating Dr. Parry’s IV pulse steroids using oral prednisone, so I was taking a 650 mg (yep, not a typo) dose one day a week. I did that for a month, then tapered by 100 mg a month until I was down to 250 mg (I think), then slowly to zero over the next several months.
The first day I did this schedule, I thought I was handling it okay. Nope, not at all. I was working with a good friend, who said something slightly sarcastic about something I had just done. It was really quite funny and I more than deserved it. But that was only in retrospect. At the time, I threatened to punch his lights out; which, even as I was saying it, I knew was wrong and stupid—he did not deserve it and I knew I was incapable of carrying out the threat. After that, I took my large dose and isolated myself as much as possible for the rest of the day. By the next day, I was OK to be with other people.
I, by the mercy of God, did not suffer from moon face or weight gain, to the point where my neurologist would kiddingly ask me if I was actually taking my prednisone. I had bone density to spare and took Fosamax and calcium with vitamin D to help reduce osteoporosis. I took Pepcid to avoid the common stomach upset. I monitored my blood sugar; I did not become diabetic, but my waking glucose numbers did creep upward, and really have not come down. I developed cataracts, which I have since had removed.
However, the prednisone definitely helped me, and did so quickly. If it were not for the cataracts, I would have no regrets about using it. Even with the cataracts, I would still use prednisone, although I might try smaller doses for less time.
I saw Dr. Chin on the day before Thanksgiving. He believes, based on 6+ years of treating me, that I can get back to the level of function I had before the current flare up. However, because I am taking the maximum dose of IVIg (140g/mo.), the recovery has to be jump started through other means — i.e., steroids.
During the first year or so of IVIg, I would get a small dose of steroids as a prophylaxis against an adverse reaction (along with Benadryl). Even that small dose made me hyper sensitive to noise, irritable and moody. It interfered with my sleep, too.
This week, I will be getting 3 infusions of Solucortef (steroid), followed by a 5-day tapered dose of oral Prednisone.
Does anyone have any advice about how to deal with the expected side effects?
For almost two years I got weekly infusions of 1,000 mg of solumedrol on Tuesdays (in additon to weekly IVIG the same day.) My family soon coined the term “terrible Tuesdays” & learned to stay away from me on those Tuesdays. I was pretty much homebound during that time, other than doctor appt., so it made me even more irritable. But the day of those infusions, I felt very hyper & agitated & would try to pick a fight with anyone who was brave enough to sit down & visit with me. That night I would talk well into the night (hubby had to get up at 4;30 AM at that time for work, I feel so guilty about it now. The next day I would be like a dishrag, & Thursdays would be my worst pain day. That is the pattern I lived with for 21 months. Normally I am a pretty mellow person & get along with everyone…
I have been thinking about this; I wonder whether the fact that my CIDP is purely sensory might be the reason why the steriods didn’t do much for me. I took the prednisone about 8-9 years ago; it was a first line treatment, long before we got to IVIg and other stuff.
I am very lucky, I have not suffered the disabling motor issues such as paralysis, and I deeply respect the positive attitudes that I find on this forum – you guys are inspiring.
My CIDP is very, very painful. I have allodynia, which means that I am exquisitely sensitive; my back burns like fire if you touch me. I have hyperanalgesia, and altered sensation and numbness (at the same time!) in my hands, feet and calves (up to my knee). I also have electrical shocks that make an EMG appointment look like a vacation.
I have been on IVIg for about 5 years; varying lengths of time between treatments. At the moment I am doing 1mg per kilo every four weeks over two days. I was on azathiaprine for about a year; it doesn’t seem to have made any significant improvement – no real side effects, tho.
The prednisone has been the only thing that has really had debilitating side effects for me. I really suffered from the headaches and insomnia. I used to work as a management consultant; you need to think on your feet — ha, ha, can’t do that any more. The combination of pain, fatigue and the fog from either meds or the disease process knocked me out of the game about 2 years ago. If you have motor symptoms, the prednisone might be an effective treatment — it definitely seems to have provided relief to a number of people here.
I would consider myself stable at this stage; my neurologist calls me a “mystery”. I see Gareth Parry about once a year when he comes to New Zealand – he has moved from trying to “cure” to managing the symptoms.
I truly think you need to find out what works for you. I know that I have been willing to try almost anything in my journey through this — and Gareth is definitely one of the most eminent docs working on this today. At least it might pay to give it a shot.
Take care, good luck.
I have been on steroids steady since 1995 with a dosage of as high as 100mg a day. I was originally put on steroids in 1984 and weaned off of them over a period of slightly more than a year. In 1995 I was introduced to IVIG. and put back on steroids. I currently receive the IVIG every 3 weeks and am down to 5mg daily of the steroids, hoping to finally get of of them. I also am on 150mg a day of Imuran for my Chron’s. No one should be on the steroids because of all the damage they can do. My dr’s blame many of my medical problems on the steroids, including brittle bones and loss of bone mass. I have lost 3 inches in height due to the bone loss. For the Imuran I must go for blood tests every three months to make sure there are no kidney problems.
Just read your post to Gene regarding ongoing PP. Am curious to hear what you’ve been told about the long term effects of PP. I have been on PP since 1996, with treatments ranging from once a day for 5 days, to weekly (my current protocal), sometimes I have been able to go monthly, but most often every other week when I am not trying other medications. I take 500 mg iv solumedrol with each PP. In total, I have had just over 350 PP since ’96 and have had no side effects thus far.
I was on oral prednisone for about a year and a half and like everyone else my weight went through the roof. Doctor stopped because of potential kidney and liver problems. From time to time I also get a separate iv solumedrol, 1 gram a day for three days as a “booster”.
Of all the treatment protocals we’ve tried, PP and iv solumedrol have worked best for me. No luck with cytoxin, avonex, imuran, rutixn or ivig.
I am approved to try Tysabri, but have some reservations about the PML potential side effect. Like you, I had GBS (85) and CIDP (95). Appreciate your input. Thanks
I was trying to remember some earlier posts re: steroids and their use in earlier years — my comments to my PT person was that I doubted that there would be benefit from use. If there was we would have heard about it some time ago –The PT person is familiar enough with my condition but has mentioned a few times that he is not knowledgeable as to all the details of GBS ..
Onward to better things in 08
Ali is right, steroids can be counterproductive for GBS, but can help those with CIDP. I am assuming that you know the difference between anabolic steroids used by the athletes & prednisone or methylprednisolone (infused steroids) used by hospitals & clinics for knocking down inflammation in many illnesses. There is a huge difference! I hope that your PT was not hinting that you actually try anabolic steroids, as no one should be using these?
I am sorry that Frani has this disease. With some luck, it will be manageable. It may take a while to learn the treatment(s) that will manage it, though. It is tough to go through; I can offer information and an understanding ear.
On the question of IV solumedrol vs. oral prednisone, it seems that most consider IV solumedrol superior, as it seems to have fewer side effects. I don’t know about oral methyl prednisolone vs. oral prednisone. You asked about initial dose and length of trial for steroids. I think I was given a typical regimen. I received 1 g IV solumedrol each day for 5 days, followed by 1 mg/kg of oral prednisone every other day for four weeks, then starting a 10 mg per week taper. So the steroid trial runs for about 5 to 8 weeks, but perhaps longer. In the long run, prednisone alone was not enough and I now have a combination therapy of azathioprine, prednisone, and plasma exchange. I will PM you about this therapy, if you wish.
I think that administering prednisone as a double dose every other day is a big improvement over a single dose every day. The adrenal glands don’t atrophy as badly in the every other day regimen. Keep the dose as low as possible, of course, but don’t go over 2 mg/kg every other day. If the side effects are severe, they taper as quickly as tolerated until they are manageable.
I think most people would agree that you should keep to IVIg alone for 8 weeks. There are several protocols. This site ([URL/http://www.neuro.wustl.edu/neuromuscular/antibody/pnimdem.html#cidp[/URL]) has two. The Peripheral Nerve Society has CIDP guidelines available on their website ([URL/http://www.pns.org[/URL]). Another fairly common protocol is 400 mg/kg/day x 5 days; followed by 400 mg/kg once per week for several weeks. Not to rain on the parade, but it is possible that Frani won’t respond to IVIg; about 30% of patients don’t. Depending on your wife’s vascular access, the next treatment would be to try would be either plasma exchange or steroids.
As for pain, I found nortriptylline effective, but I did not like the side effects, so I switched to gabapentin. It has different side effects, but I find them more tolerable. I trade some pain for a lower dose, as I found gabapentin slowed my thinking. If Frani’s pain is worse in the evening, I would suggest 600 mg at about 2:00 pm, 600 mg more at about 6:00 pm, and another 600 mg at bedtime. Depending on how severe her pain is, she may need to start earlier and take 2400 mg total per day. Read the PI on the drug, as you, Frani, and the neurologist will need to figure out what works for her and the information in the PI is invaluable.
Godspeed with an effective treatment,
I think you are referring to solumedrol, it is the IV form of steroids. Prednisone is the form of steroids taken orally. For 21 months I was infused weekly, sometimes bi-weekly with solumedrol to give me just enough strength to stay out of a nursing home. I gained 80# in that time period, required cataract surgery on both eyes (I was in my late 40s), had a horrible rash all over my body (still have scarring to this day), had terrible mood swings, sleeplessness the day of the infusions, etc. I know now that they no longer use 1,000 mg of solumedrol for their infusions, they instead start with 400-500mg at a time & see if that works as well. Maybe your doctors might want to try to see if a lower dose works as well, it might minimize the side effects.
YES, THE FAT FACE DOES GO AWAY. I’ll see if I can come back and show you before/after pictures. You’ll probably have an easier time coming off them then I did. I was on prednisone three years and it took me one full year to get off. I think you should ask your new neuro how to wean. You have to be careful and do it slowwwwwwwwwwwww! PS, I was still on steroids in that pic of me.
I was on steroid infusions weekly for 21 months mostly for strength, so I don’t think that they are mostly for sensory. But I do believe they helped with that as well. I do think that because of the prohibitive cost of IVIG many neuros are turning to steroids more & more. I know my neuro is, & he is considered one of the best in the world. But from my own experience (IVIG & PP didn’t work for me), I think IVIG is still the best treatment available for CIDP. You are lucky that it works for you so well, & I think you should stay on it. Heck with the insurance companies, let them have this illness for just one month, all of them.
I needed the steroids at that time, but I have paid dearly for being on them. Three years ago I had cataract surgery on both eyes (at age 51?), still have terrible looking scars all over my body from a rash, am still trying to take off the rest of the 80# gained while on them, the bones in my feet break sooo easily, etc. It is so easy to prescribe these drugs in large quantities, but would they do this to a family member. I think not; I think they would order the IVIG for them. Find a new neurologist!
Nobody knows your body like you do, so listen to it. My question is, if the IVIG worked so well, then why did he add the steroids? Also, that is a high dosage, so expect sleeplessness, irritability, stomach reactions, a possible rash, etc. If you are doing well getting IVIG every 6 weeks, that is the route I would take. Did he tell you why he added the steroids?
I am well aware of the side effects of steroids having had weekly & sometimes bi-weekly infusions of 1,000 mg of prednisolone for 21 months. I gained 80#, had to have cataract surgery in both eyes, still have a rash all over my body, was extremely irritable on the day of the infusion, didn’t sleep that night of my infusion, etc. But according to Dr. Parry, he swears that if the steroids are infused, & they are given in 500 mg doses instead of 1,000 mg, the side effects are minimal.
I am not advocating this treatment, just passing along what I heard at the conference. I am as surprised as all of you that this is now the first treatment of choice for CIDP at the U of MN where Dr. Parry practices. They seem to feel that giving monthly IVIG is not necessary for CIDP & should be used mostly for GBS. I just wonder if it has something to do with the cost of IVIG? Maybe some insurance companies are starting to balk at paying for regular IVIG infusions. At any rate, he said they rarely use IVIG for CIDP patients anymore. It was certainly news to me.
During the 21 months that I was on 1,000 mg of weekly & sometimes biweekly steroid infusions, I still had periods. It wasn’t until I was put on heavy doses of cytoxan for 9 months that I went into menopause. But I was warned this would be a side effect of the drug. But at age 49 & virtually no use of my hands, this was a rather pleasant side effect for me. I suspect that this is also the drug that probably stopped them for Emily as well.
Yes, I would try steroids as well, only because if they work, then there is a good chance that you do have CIDP. You could try PP, but from my experience & many others, usually if IVIG doesn’t work then PP doesn’t either, as you might have the progressive form. I finally had to resort to chemotherapy to arrest my CIDP. That was back in 2003 & I haven’t needed any further treatments, but it is an extreme protcol. Others have had luck with rituxan infusions. Use the Search option to finds past threads on this treatment.
I remember you from our old forum. I was on steroids for about four years. I’m not on them now and I would NOT willingly go back on them. The round moon face and puffyness did not bother me because I don’t have a scrap of vanity in me, but I SUFFERED with severe heartburn. Many nights I could not sleep and had to sit up to try to find relief. I now have ulcers, bled for two days and in the hospital for six days (two pints of blood infused) and I believe that ulcers like that came from the steroids.
Steroids are extremely hard to get off of, you have to be weaned very very slow. It took one failed attempt and a year to get me off.