any one using "pulse steroids" treatment/cidp?
AnonymousMay 14, 2008 at 12:22 pm
I was wondering if anyone out there is using steroids orally weekly as their primary treatment and am interested in how its working out.. Or, does any one know anything about this, as Its been recommended to me as a treatment alternative to ivig for cidp…. Thanks deanop
AnonymousMay 14, 2008 at 12:51 pm
what do you mean by “pulse” steroids. My husband took prednisone along with immuran. Disaster for him was the immuran. And he hated the steroids. Not good to stay on too long as it is hard to get off of. He started on 60 mg and is now off of it and only on ivig. I feel it should only be temporary. The ivig is working and he has also cut down on the lyrica. He got a loading does for 5 straight days in the hospital and now 6 weeks apart. This is his first does over 2 days.
Another 6 weeks then the same again. If not working he will be on Plasma P.
He was not dx offically until around Jan. or Feb. of this year but had all the symptoms for 2 years which got worse. It was our son who found this site for us .Doc said he waited too long. But we TRIED and could not get the help we needed. Changed family docs and neuros. I would still like another opinion but he is content. I think just not wanting to change again. We do not have to change just get another opinion while we can.
Good luck to you
AnonymousMay 14, 2008 at 1:17 pm
Hi Dean, I used oral pred from feb 7 08 through to april 15 08 and I now have cushings syndrome on top of all the other problems. I do recommend it for getting a control on flare up symptoms but not for long term use. As you see I was on it too long, which really wasn’t that long to me anyways, but long enough for it to cause another problem. I tried to reduce the dose but my symptoms would flare too much and increasing the dose was the only way to relieve the symptoms to level them off. I tried to lower the dose 3 times until I finally was successful, only to end up with pneumonia-but at least I’m off pred and it did do what I needed it to do at the time-control the flare up. Its really something to talk to your dr about in detail, find out the good and bad, and go from there. I can’t use ivig, severe allergic menigitis from it, and my then neuro was too afraid to use anything else on me. My pcp put me on pred at my asking. Take care.
AnonymousMay 14, 2008 at 2:08 pm
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.
AnonymousMay 14, 2008 at 4:18 pm
This pulse treatment consists of one treatment of 500mg per week dosage, and would hopefully bring my cidp under control within 1-2 years whereby I wouldn’t have to take any more or get weened off over time…, and hopefully wouldn’t cause too much side effects. Right now it seems I’m taking ivig every 4-6 weeks, and it has kept things at bay, with improvement…But, I don’t know the long term answer of what’s gonna hopefully cure me, and still with the least side effects…Or maybe, someone knows of a better treatment? This treatment recommendation comes from one of the leaders in these disorder things, so guess I’m at a loss for what to do……
AnonymousMay 14, 2008 at 4:21 pm
I started out using 70 mgs Prednisone a day on January 22nd, 2008. There was no improvement with my CIDP. On March 8th, my Neuro upped it to 100 mgs a day. Still no improvement. On April 18th, he said let’s stop the Prednisone – drop 10 mgs a day every 3rd day … so, I am now down to 20 mgs a day and will be off of it completely next week. It never did anything positive for me. The only thing it did was puff up my face and ankles and give me sores and spots all over my arms. We are now trying Plasmapheresis – I’ve had 4 treatments with another one scheduled for this Friday.
AnonymousMay 14, 2008 at 10:03 pm
[COLOR=black]Yes, I am using pulse steroids as part of my overall treatment regimen. By pulse steroids, I mean that I take my entire steroid in a single dose. It is a modification of Dr. Parry’s plan. In his method, he gives 500 mg/week Solumedrol for a month, then tapers down the amount of Solumedrol by 50 or 100 mg each month until the minimum dose is found. My modification is to use prednisone, largely because infusions and I don’t get along. I started at 650 mg/week (the rough equivalent of 500 mg Solumedrol), then tapered 100 mg each month. I went down to 150 mg/week, but found that to be slightly too low a dose. I am currently at 170 mg/week, which seems to work for me.[/COLOR]
[COLOR=black]As others have said, steroids are not the best solution long term. To help avoid some of the side effects, I take 40 mg Pepcid twice a day, 600 mg Caltrate twice a day, and a Fosamax once a week. I check my blood sugar, just to make sure that I am not outrageously out of control. I see an ophthalmologist twice a year, to check for cataracts and to manage my glaucoma (not from steroids).[/COLOR]
[COLOR=black]Still, without steroids, I would be getting full loading doses of IVIg once a month or four plasmapheresis sessions (every other day) every three weeks. Neither is practical if I am to continue working. I’ll trade decent quality of life now for a worse future. I don’t like the trade, of course, but one does what one must.[/COLOR]
AnonymousMay 15, 2008 at 1:15 am
I used pulse prednisone for about 9 months. I used it for 3 days every fortnight (2 weekly) at 500mg a day. I hated it. It gave me a migraine like headache, stomach problems, and weight gain – for no apparent benefit in my case.
I know that Gareth Parry who is a medical advisor on this board and who specialises in this sort of problem recommends it as his baseline treatment for CIDP now.
But like everything else, each person reacts differently. I was still taking pain meds at the same time because I have a very painful neuropathy.
The idea behind the pulse treatment is that it is supposed to reduce side effects of taking it every day. All I can say — if you think it might do you good – try it – but know what you are getting into.
Kind regards and good luck
AnonymousMay 15, 2008 at 4:03 am
I am on pulse steriods, 500mg iv each week. I have been on them for 7 months now. It is just part of my treatment as am also on IVIG weekly and daily azathiaprine. Had tried regular ivig and then reg ivig plus oral steriods but to no avail and i was going downhill fast. When i got to point of only being able to move my head (otherwise was paralysed) we tried the 3 treatments (as above) together and the rest is history!!!!!! (well not quite but the progress has been super fantastic!!!!) Going from not being able to move a finger and fully dependant on others for ALL my cares i am now entering a duathlon in 10 days time! Whose to say what the special ingredient so to speak is but we do no that the ivig alone and in combination with the o steriods wasnt holding me. It has a relatively short half life so isnt in your system that long but i guess it is the hitting the inflammation hard and fast that must help. We are hoping that being on the azathiaprine will enable us to reduce the amount of methylpred reequired to be the minimum dose needed to keep me all go!
As far as side effects, i have experienced hair loss – not too drastic, (actually the regrowth is more noticeable – super curly etc!!!!) weight gain, but am currently trying to fight that by a tight restriction of what i eat and plenty of good cardio exercise – of which i am now capable of doing. The day of administration i can also suffer from insomnia, but i make sure the next night is an early one and try not to have anything tooo mentally challenging on the next day etc.
As MarkEns also said, the side effects are definately a lesser problem than what i would be facing if wasnt on Methylpred.
All the best
Kia kaha – stay strong
AnonymousMay 15, 2008 at 8:58 am
Wow Kiwi! Another one of you are running. Andrew is my other inspiration who runs! I’m still working on the walking but am on a similiar schedule as you. I get IVIG every other week now, two days worth, plus two days of Solumedrol, and I take Cellcept as well. I promise to post a picture if I can ever run again:) Good luck and I’m envious!!! Gabrielle
AnonymousMay 16, 2008 at 4:00 am
hang in there, the last time i had to learn to walk i really thought that was it. We all know you never know whats around the corner so to speak so keep positive and keeping pushing hard every day (of course within reason). – (you may be walking on your hands sooner than you think!!!)
I read your posts often and knew you were on similar treatments. Am also aware how hard it sometimes is to read others really positve posts about improvements when you may have had a crap day so to speak and seem to be getting no where. I have certainly been there tooo! Hopefully, touch plenty of wood I wont be going back in that direction but still I take each day as it comes. THe duathlon is exactly on the 1 yr anniversary of my legs collapsing walking the kids to school and being in ICU by that night, so a wee run and bike should be a fitting way to celebrate.
I look forward to hearing your successes, every wee achievement along the way is actually a huge accomplishment. I still start each day admiring the ease of which i can lift my arms up in the shower and to wash my hair etc all in one go. Such cheap thrills can go a long way huh!!!!!!
all the best
Kia kaha – stay strong
(and yes after the duathlon i will have to see if i can walk on my hands!!!!!!!!)
AnonymousMay 16, 2008 at 8:59 am
Actually the posts of you both you and Andrew keep me motivated! I’m not really down at all as I am doing better. Just envious:)) But that puts a fire under me. I am doing biking everyday with a recumbent trike. It has made a world of difference in my ability to exercise, even on a not so good day! So keep running and keep posting! I read your posts carefully too:) Gabrielle
AnonymousMay 16, 2008 at 10:34 am
Wow…Thank you for the replies… I hope this information will be useful for others as well…. These nerve disorders suck, and are hard on everyone involved…. When I look at your replies, (and I wish there were more), it gives a person a sense that there is a lot of good and bad with all of the treatments….
I’m on Ivig every 4-6 weeks, and its working to stabilize things for me, but I still can’t seem to snuff it out… I saw Dr. Parry Monday, and he’s pretty confident on pulse steroids will work for me with limited side effects, and if I’m reading your replies correctly (who are taking it), that this seems to be the case… He thinks I’ve got a good chance of putting cidp into remission….Kiwi Chick and Mark Ens, you guys seem to be doin pretty good on this, yet Debs didn’t like it…Are you cured now Debs, or what treatment are you taking currently in place? As far as regular steroid treatment options, I haven’t had to take yet, and I am sure there is good and bad with both…
Thank you for helping me in my decision making, and I would love to hear more feedback from you on this…
P.S. There was a gbs meeting in Mpls a couple weeks ago, that I couldn’t attend; Dr Parry was the speaker. Did anyone take notes or would you contact me or post.. I would be very intersted to hear from you…
Thanks and all the best
AnonymousMay 16, 2008 at 11:28 am
My neuro. has had me on pulse steroids since the beginning. When I was first dx’d. he tried IVIG but that didnt seem to work so he put me on a regimin of 500mg. solumedrol via iv twice a week, then after 2 months switched me over to 500 mg methylprednisilone twice a week and is now trying to ween me down slowly, am now doing 320mg twice a week with his goal being to ween me down to just under 200mg twice a week sometime in july, which is when I see him again. The side effects are starting to pile up, mainly weight gain, moon face and sometimes horrible insomnia but the trade off is that in 7 months time I am back to about 85 to 90% of my pre CIDP abilities, so I guess that the trade off is worth it…at least so far.
AnonymousMay 16, 2008 at 6:55 pm
Hi there Deanop, just wanting to make sure youll keep me posted with how things go. I noticed the improvement slowly on a weekly scale really, basically just regaining ability to do start to do things again (ie lift arm a bit higher etc and then the added strength came later. Like you am also very keen to hear if anyone attend or has notes from the recent session from Dr Parry.
I forgot to mention before to help reduce some osteo/bone issues etc from being on the methylpred i am on daily calcium tabs and every 90 days have an oral 2 week course of etidrate (biphosphante).
i would say overall now am 90%-(maybe 95% to sound ambitious but not wanting to jinx things!!!)back to pre CIDP ability.
look forward to your progress reports!
AnonymousMay 17, 2008 at 12:26 am
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.
AnonymousMay 17, 2008 at 10:03 am
Thanks again for the information…. I’m gonna have to quit procrastinating and make a decision next week, as IVIG is running its course… Already, I’m having relapse issues, so I wish I would have been a little more proactive… I guess I was overly optomistic… My thought is that I’m probably going to try that pulse steroid treatment, and try to get by without any more ivig…. I will definately keep you guys abreast of things….I’m pretty impressed, as well, with the positive attitudes of many on this site.. I try to keep upbeat, but seems like I’ve had a lot of valleys lately… Take care everyone, and thanks….
AnonymousMay 18, 2008 at 1:01 am
I guess that at the end of the day, you have to ask yourself “what is the worst that could happen with this?” Remember that YOU are in control; you can stop the treatment if you want to.
Take care of yourself — I know it is really hard, particularly when you feel that its just one thing after another. Do something pleasant for you.
AnonymousMay 18, 2008 at 1:32 pm
Thanks for the encouraging words Deb.. This is a trying time for me, trying to figure out what’s best for me both short and long term… Right now, I do know I improve with ivig, I think 1st step in gonna be getting that round in…
It sounds like things are improving for you, but sounds like the pain is more than nuisance..
I was look at some of your story kiwi chick, and it sounds like we share a lot of similiar experiences that may be more than coincidence… Did you come down with gbs initially following a flu shot back in roughly oct/nov 2007..I temporarily was paralyzed initially with gbs 11/07 after flu shot.and seems like I’m headed down same path of going beyond just ivig treatment…————-Take care, deano..
AnonymousMay 18, 2008 at 6:48 pm
By the way, I live up by Duluth Minnesota. I think Deb today is the third day in the year 2008 that temps have reached 70 degrees F/ which off the top of my head, I have no idea in celsius…Anyway I’d say its pleasant weather…Things are just starting to bloom, and we are about 1-2 weeks behind a normal spring…My buddy and I tease that someday we are gonna pick up and move our families to Australia and/or New Zealand….There thats my pleasant thought for the day….
AnonymousMay 19, 2008 at 9:48 pm
I was look at some of your story kiwi chick, and it sounds like we share a lot of similiar experiences that may be more than coincidence… Did you come down with gbs initially following a flu shot back in roughly oct/nov 2007..I temporarily was paralyzed initially with gbs 11/07 after flu shot.and seems like I’m headed down same path of going beyond just ivig treatment…————-Take care, deano..[/QUOTE]
I guess it was alway CIDP but witht he first admission they think of GBS and then if symptoms still accelerating etc over 8 weeks or relapsing etc along with other criteria etc it is CIDP. But yes first admission was suspected GBS in May 07, which was 6 weeks post mastitis (had finishied b/feeding 2 months prior) and about 4 weeks post a flu vac. so yes i guess it could have been flu vac related. I definately hadnt had in gastro upsets prior and was fit and very active – except for the mastitis and what i thought was a sporting injury to my arm but infact was probably the start of CIDP weakness. From May onwards it was pretty much a downhill slide, responding to initial ivigs but relapsing almost within days to worse levels until on went onto my current regieme of 3 forms (ivig, pulse methylpred and azathiaprine).
To be honest i could easily have procrastinated about commencing all these drugs etc (was never one to take a couple panadol etc) but in the end didnt really have much option. I dont think i am a strong enough person to life as a quadraplegic, and after i experienced that existance i new i had to try the potions etc. So far no turning back yet this year aim to try reducing things as see what minimal doses we can get away with.
all the best with you and as debs says its your choice,you can always stop treatments etc.
keep us posted
kia kaha 🙂
AnonymousMay 24, 2008 at 6:39 pm
I was diagnosed with GBS Oct 12 2007 and was in hospital from Oct 29 2007 until Jan 14 2008, when I came out of hospital I was on steroids and was given IVIG in the hospital 6 treatments of it the steroids I am still on when I came out I was on 150 ml a day and have been slowly decreasing the dose by 5 ml a week till May 5 2008 when my neurologist told me that it was CIDP that I had and not GBS so now I’m down to 20 ml every other day for 2 weeks then 17.5 ml every other day and so on till I see him again on July 21 2008 he says that it is the steroids that are keeping me going. Hope that helps Brenda
AnonymousMay 25, 2008 at 12:00 am
Congratulations on making a decision and going forward! Also, good plan not starting on a holiday weekend — they are too precious to waste on starting a new med! I will wait for your update to see how you are getting along. Hopefully the combo of IVIg and steriods help.
Thinking of you
AnonymousMay 25, 2008 at 12:27 am
Because I am still working, I take my pulse dose Friday evening. The reason is that, for me, prednisone induces both insomnia and considerable irritability. I can deal with insomnia over the weekend, but during the week, it is a bad thing. Less stress (i.e. at home) lessens the irritability.
AnonymousMay 30, 2008 at 12:16 pm
I am starting pulse steroids on Monday. My EMG was inconclusive for demyelination and my spinal was negative. I opted not to go for a nerve biopsy as we were told it could also be negative for demyelination due to the length of time I have had my neuropathy. My dr totally believes I have CIPD. IVIg doesn’t seem to be an option as we can’t prove I have CIPD to the insurance company, hence my Dr said to try the pulse steroid route. I am starting out T 250mgs as I have improved physically a lot since I got zapped with an illness the end of Feb., and my Dr said due to my strength returning, I didn’t need to start out with the normal 500mgs. So if everything goes fine, I will be on a weekly 250mgs for 3 months and then, hopefully I will have gotten stronger so we can evaluate a plan (ie decrease steroid, or if this works real well we can make a case that I have CIPD and therefore move to IVIg, etc). So I am crossing my fingers that this will work for me.
I am interested to hear about others who are recently starting too.
AnonymousMay 30, 2008 at 4:08 pm
Well, you can call me chicken or whatever, but I procrastinated to start the pulse steroids until this a.m. morning…. I didn’t take any stomach meds or other preventative stuff, so I’m hoping I don’t have too bad of side effects going into the weekend… Part of the reason I have held off is I wanted to regain a little from recent ivig treatment last week, and also we have been going thru the passing on of my wife’s uncle, and I didn’t want to be any more whacked out than I normally am… I sure hope this stuff works, and guaging from responses so far, it seems like only one of you has been able to stay off additional treatments, like ivig/pp others….For good or bad I’ll never forget this day, as my wife’s uncle was a fighter too, who managed to fight off cancer for seven years until it took him Memorial Day.. Hopefully, these meds will be my “new beginning”, of getting out of this hole….best of luck to you all…deanop……
P>S> Anyone have a list of short/long term risks, and meds prescription/and non prescription they’d like to post….again……Also, is alcohol a big no no with methyl pred…???
Hi Kristen; I’m sure no expert on the emg stuff, but I think your body tells a whole lot more than emg’s…I’ve had three emgs with three different intrepetations, From what I’m seein, I don’t know about the value of a nerve biopsy in your case either….Good luck on your recovery….Are you from my neck of the woods, up here by Duluth?
AnonymousMay 31, 2008 at 4:07 am
I tried pulse–500mg for two days every two weeks for three months. All it did was make me sick. But then I get sick from low-dose as well–just finished a three-week course of 30mg a day during which I had constant nausea, and now I’m having to be treated for an ulcer.
Best wishes in the battle,
AnonymousMay 31, 2008 at 10:55 am
[QUOTE=deanop]P>S> Anyone have a list of short/long term risks, and meds prescription/and non prescription they’d like to post….again……Also, is alcohol a big no no with methyl pred…???
Hi Kristen; I’m sure no expert on the emg stuff, but I think your body tells a whole lot more than emg’s…I’ve had three emgs with three different intrepetations, From what I’m seein, I don’t know about the value of a nerve biopsy in your case either….Good luck on your recovery….Are you from my neck of the woods, up here by Duluth?[/QUOTE]
I live in the Mpls area.
My neuro told me to take calcium and vitamin D to decrease risk of osteoporosis. I take 1000mgs calcium and he said that it was a good amount. I didn’t tell him I take a lot of D, abt 3000IU (plus sit in sun 10 minutes if the sun ever comes out which isn’t often lately). He also recommended Pepcid or tagamet.
My neuro told me that the short term side effects for pulse usage were low compared to a person who does everyday steroids who would have more effects…long term both pulse and everyday side effects are abt the same.
I am also interested in what a person should and shouldn’t have. I take wild salmon oil and black currant oil (just started this) for both the anti-inflammatory and re-myelination effects. I am also on Armour Thyroid. Not sure if any of these is a no-no on steroids or not.
AnonymousJune 1, 2008 at 12:54 am
I was on pulse steroids for 21 months from June 2002-Fed 2004, 1,000 mg once a week. I wished I had been warned about more than I was. I did not take any extra calcium, just a daily vitamin, so my bone densities aren’t great for my age. I was warned of the sleepless nights, & that was very true. I was never warned of my cataract risks, had surgery for those on both eyes in Sept of 2004, when I could no longer read or enjoy television. I gained 80# during those 21 months, although I don’t believe I overate (was sendentary though.) BTW the weight does not fall off when one goes off of them, it is real weight gain. I also developed a bad rash over my entire body & still have scars to this day. I would have good energy the day of the infusion & then literally crash two days later. I wish I had never taken them…
AnonymousJune 1, 2008 at 9:55 am
I am worried abt the weight gain as I have 2 close relatives with breast cancer (Which makes me a high risk). The weight gain could put me in more favorable conditions to form breast cancer. I’ll have to watch and see. I don’t have the choice of going on IVIg so either I try the pulse steroid, or else I do nothing.
My other 2 things I am worried about are my pulse rate increasing and my BP. I recently lowered my BP, which was high IMO, from my thyroid. I believe the thyroid meds lowered my BP as nothing else was changed in my life. My BP use to be 130-145/85-95. Now 6 months after starting Armour Thyroid it is 112-122/68-78. I am hoping that the steroids don’t increase it too much. I did read somewhere to increase your potassium while on steroids to get rid of water weight gain (and thereby helping keep BP from rising too much).
My pulse rate is on the normal high side, 85-105. I am hoping that this doesn’t go too much higher either.
So I am in a watch and see mode. I am starting off lower than most people, 250 mgs…so perhaps that will lower the side effects for me while I try this for the next 3 months.
AnonymousJune 2, 2008 at 8:37 am
So far I really haven’t noticed anything in the way of side effects… I had a little stomach upset, and maybe just a little trouble sleeping that first night.. I’m not taking any other medications whatsoever, so that is a good thing to note….. I haven’t noticed any improvements at all yet, and I will be interested/concerned when the ivig runs its course within the next 2-3 weeks.. My hope is at the very least to not get any worse… Thanks for checking… deanop
AnonymousJune 3, 2008 at 4:41 am
Hi there deanop,
if it helps at all when i started pulse methylpred 8 mths ago, i dint notice any improvement for approx 2 – 3 weeks and then it was ever so gradual but it was fairly constant (unless i did somehting crazy like marathon stint of physio!!!!!). I was also on heaps of ivig which would have been helpingas well so i guess you can expect things to take time!!!!!!!
Are you on any extra calcium supplements etc, it does seem that this is usuall practise these days to help reduce long term osteo etc.
Good luck and keep us posted.
(ps I found commencing the infusion as early as possible on your treatment day is a wee start in battling the insomnia if you do begin to notice that.
Good luck and keep us posted
AnonymousJune 4, 2008 at 9:44 pm
Hi Kiwi Chick:
Well Its coming up on Wednesday evening and I was feeling good enough to golf with friends on weekly golf league., I didn’t impress anyone with my gbs/cidp golf swing but was fun just being on the course… Sure is cold around this part of the U.S…; We didn’t have a spring, and now I’m wondering if we are ever gonna have a summer… I think we topped out at 50 degrees F… Any way, I’ve been taking 500 mg calcium / day, on my own, to counteract steroids… I’m going to see a local doctor next thursday, to have some sort of plan in place in case this steroid treatment plan don’t work, as I don’t want to crash and burn again! So far, I cannot say that I feel any better or worse off with the steroids, and the Ivig still may be lingering so hard to tell for a week or so…That’s about all the news from this end,,hope everything is better for you and everyone else on the site… P>S Would someone send some sunny warm weather this way!…deanop
AnonymousJune 5, 2008 at 10:04 am
[QUOTE=deanop] Any way, I’ve been taking 500 mg calcium / day, on my own, to counteract steroids… P>S Would someone send some sunny warm weather this way!…deanop[/QUOTE]
Hope you don’t mind a few comments about supplements…I am a research geek (use to research and develop test kits albeit I don’t work anymore but I research stuff on-line). These are things you should ask your Dr about as they can affect your long term health.
Vitamin D: it is essential for promoting calcium absorption. If you live in area of low sunlight, definately northern states, you might want to get you Vitamin D level checked as vitamin D deficiency aggravates inflammatory and autoimmune diseases. I won’t recommend how much to take as the government RDA vs the Vitamin D research scientists claim very different amounts are needed.
Calcium: RDA for Adults ~1000mg calcium (or more), depending on age.
Magnesium: needed to help calcium be used properly. RDA between 350-400mgs, although I have seen some comments that the RDA will be raised to 500mgs.
Both Calcium and magnesium can be obtained thru foods, although supplements are used if you don’t eat enough Ca and Mg foods. Vitamin D is obtained thru D fortified foods, fish or sunlight (with no sunscreen)…hence people often use supplements due to skin cancer risks.
It is amazing the number of nutrients (either too much or too little) which can promote inflammatory and autoimmune disease. It is also amazing the number of foods which are anti-inflammatory… I am trying to move towards these to see if they help me.
I’d send you some sun, but I haven’t seen it either (except for a short bit yesterday…now it is back to gray again).
AnonymousJune 5, 2008 at 7:20 pm
Kristin, my neuro has me taking all of these supplements. I take Vitamin B and D, Magnesium and Calcium. I take double the daily dose of Vit D int he winters as I live in Saskatchewan, and we don’t get a lot of sun in the winter. I cut back for the summers as I am outside more. I think they help.
AnonymousJune 6, 2008 at 11:44 am
Hi Guys and Gals: I took my pulse steroids this a.m. again (7 days and counting)… I’m also taking 1000 mg calcium supplement as it seems to be kinda of a concensus round here.. So far so good on the steroids, but still couldn’t tell ya if they will help.. I should know soon though! Hi Kristen, I’m trying to get sun, but you know what this springs been like in Minnesota.. How is your search for a neuro..going? I’m thinking I like the fish oil idea, might give it a try… Anyway, did you go to the gbs support group meeting last month when Dr. Parry was there.. I couldn’t go as everyone in our house had strep… Hi Deb, I think you sent us some London fog over here! Sorry to here about the stomach issues.. I’m hoping I’ve got some kinda “Iron Gut”, and can get thru the side effects.. Right now I can feel a little stomach isssues, but nothing major… Hope everything goes good for you… deanop
AnonymousJune 6, 2008 at 4:50 pm
[QUOTE=deanop]Hi Kristen, I’m trying to get sun, but you know what this springs been like in Minnesota.. How is your search for a neuro..going? I’m thinking I like the fish oil idea, might give it a try… Anyway, did you go to the gbs support group meeting last month when Dr. Parry was there.. I couldn’t go as everyone in our house had strep..deanop[/QUOTE]
Yes, the spring as been darn right cool, dark and wet. After talking more with my neuro, I am going to stick with him. It is so hard to determine how good someone is with what little time you get to spend talking to them. I have had so many bad Dr’s in the past that I no longer trust Dr’s…hence I take longer than most people to trust Dr’s advice. My neuro is very good abt answering questions and doesn’t seem afraid of saying “I don’t know” when he doesn’t know an answer. After talking to him I discovered that he use to work with Dr. Parry and he also worked on the IV steroid research.
My neuro started me on 250mg solumedrol this week. I get one more IV of it then I start on oral once a week. My dr commented that steroids may make me worse as he thinks that my CIPD is a mobility type vs sensory and there are a few forms of the mobility type that react worse with steroids. At this point though I am slowly improving (was improving before I started steroids) and hope that stays the case during the use of the steroids. Unfortunately I just got another UTI…a UTI is what wiped me out a few months ago…so hopefully I don’t relapse due to this newest infection.
Keep us informed as to how you are doing. I hope you get some relief.
AnonymousJune 7, 2008 at 1:26 am
When I was taking the steriods, one thing that helped with the tummy problem was acidophilis – I found that it was like taking antibiotics, that the drugs were killing off the good as well as the bad bacteria!
The new ultradophilis ones are good – xxx trillion bacteria! I take them every day and they really prevent most of my tummy upsets from medications, IVIg, etc. I don’t know brand names up there, so can’t help you with that.
Just a thought to add to your list of supplements!
PS – I would send some sun but it’s winter here and we need it. 😉
AnonymousJune 20, 2008 at 10:28 pm
Well, this is coming on the 4th week of taking the pulse steroids.. My local neuro/dr. assigned me another 3 day round (this time), of ivig, just in case the steroids are not working, that I finished up on this morning… It was coming up on 35 days inbetween and I haven’t had any symptoms returning.. In fact quite the opposite, I feel I have gotten quite a bit stronger since about 1 1/2 months ago, so am pretty happy bout that… Interestingly, I ran into a gentleman who also has cidp, who frequents this site (I won’t use his name unless he wishes to come forward).. This was my 1st encounter with another e.t. cidp! He looked pretty normal to me, and he was at the hospital getting ivig as well… I think our visit reinforces some of the issues I’ve had physically….i.e…I’m not the only one type thing…Anyway, I still can’t say for sure this methyl pred is helping or hurting.. My take from my local doc., is stick with the ivig only…, but I’m gonna stay the prednisone course and see if it can put this cidp back into full remission…Take care guys…deanop
AnonymousJune 21, 2008 at 4:46 am
That is really exciting! I hope that things continue to remain on the upswing – it sounds positive. I am of the view that whatever works for you, go for it. Things change over time, and I don’t think that any doctors or anyone knows what the right answer is. It has been a real journey of experimentation with me, so if you are getting good results – keep it up!
AnonymousJune 21, 2008 at 12:15 pm
Hello Dean Glad to read you are gaining on this. Im seeing little gains. Its been 4 days since taking a Vicodin, (usually 2 hours before bed), So I feel pretty good. I ran into a women who was in a power chair and asked her how that happened,for I saw she had droop foot.w(hich is what I have a slight case of). She was in a head on collision and was so thankfull how far she has come, We were both in tears by the end of our talk. I know one thing before I got this, I would never of takin the time to converse whith someone in a chair like that. This stuff has a way of changing you for the better.
AnonymousJune 22, 2008 at 5:59 am
was wondering how you were doing, glad things seem to be at least going in the right direction for you!!!
When i was started on the ‘pulse’ protocol i was informed it could take several weeks before any definate sign of progress was noted. Apparently depends on how much active inflammation there is etc as this has to be reduced to allow the messages thru so to speak. For me it was definately a very very slow gradual increase in strength, then in ability to do things etc that showed i was on the right track ie from not being able to lift finger against gravity, to be able to do this then to hold a pen, then to actually write etc.
So i would say definately take all your good improvement as a sign of atleast being on the right mediaction track somewhere. Have heard that it can take up to a year on methlypred before you can hit the remission phase, ie if after being on methylpred for more than 12 mths it would probably mean another form of treatment may be looked at. (I have currently been on it for 8 mths now plus other cidp drugs etc)
Every day i would attempt somehting that i hadnt been able to do the day before etc ie lift arms up high enough to clean teeth, where as acutally to clean teeth i needed to lower head to my arms which i had propped onto my knees etc to cleean teeth. As my strength and ability gradually increased I would already be moving onto the next mission. Yesterday i booked into what will be my 3rd duathlon in 7 weeks!
All the best, look forward to your next lot of progress notes.
AnonymousJuly 4, 2008 at 2:45 pm
Things have been going quite well, and I would say on this, our country’s bday, I’m feeling pretty good and independent.. I’m still taking these methylpred pills on fridays. I’m struggling with sleep, friday thru sunday, but otherwise o.k… I’m still not sure if its the pills/or the ivig that is working/helping me and probably won’t know until middle of July.. We are going to the Dells for camping/vacation, so will so how my body holds up! Hi Ron, I know what you mean by understanding what others are going thru.. I think this disease/disorder has taught me a great deal of the preciousness of good health, and meaning of life..Hi Kiwi Chick.. Yeah, I would say the inflammation has to be subsiding, and remylination is going on, as I have been getting quite a bit more active/stronger and a lot less fatiqued than only a few weeks ago.. I hope it lasts! Thanks Debs.. I agree with the experiment, and find out what works.. That’s pretty much been my case the last 8 months.. I think I’m finally on the right couse! I’ll keep you guys posted…. Take care everyone, and happy birthday USA!!! Be safe people! Deanop
AnonymousSeptember 18, 2008 at 1:23 pm
I skimmed over this posting so I could give a little update on current health situation… Hard to believe I’ve been on 500 mgs methylprednisilone (pulse steroids) since end of May 08.. I’m also on ivig twice every two weeks, with a slight reduction in the grams/kg coming in a few weeks… I’m going for a followup visit with Dr. Parry in December, and hopefully we can get these meds reduced!
The pulse steroids still give terrible insomnia, and irratability the first couple days after taking (currently taking on Sunday Mornings.. Stil don’t know or couldn’t tell you if they are helping/hurting… Although, I still feel I am improving…. (this little hernia surgery a couple weeks ago slowed me down a bit…)
In a few weeks, it’ll be my one year anniversary of the time I came down with this @#$! stuff…… Let’s hope there’s no repeat….. For any of those who have recently had this or struggling with gbs/cidp, I can tell you, most of the numbness is gone, and a lot of my strength is returning…
So I guess there is hope… Even though it is frustrating…..
I think I’m gonna start a thread, on what I’ve learned/unlearned about things I used to take for granted….It’s all good….deano:)
AnonymousSeptember 19, 2008 at 6:55 am
Hi there Deano,
thats all good to hear. Yes our perceptions definately can change given a wee curve ball thrown into our lifes like CIDP. I for one dont even begrudge the housework now, infact as i vaccumm i love the feeling of having so much strength, (not to mention just control of the blimen thing) that i turn the stereo up and go for it with a few wee fancy toe taps thrown in as well!!! Also some may think my live must be pretty sad when they see the thrill i get at being cleared to go back to work on normal duties!!!.
Heres to our strength continuing and discovering this REMISSION we hear about.
All the best
(off to the mountain tomorrow for a week with family for their first experiences of skiing – a true test of strength will be if i can get up once i face plant into the snow – heres hoping theres some gorgeous ski patrol on hand if needed!!!!!!!!!)
AnonymousSeptember 19, 2008 at 10:24 am
I am glad you are doing better. I hope that you can reduce your meds and continue to improve!!
I started my Pred a few weeks after you. I don’t think that it is helping me and neither did my Dr last time I saw him. We just think that I am spontaneously healing just as I always have done in the past when not being treated. I see him next week again and I am going to ask to taper off as I just don’t think that the long term side effects are worth the questionable results.
That said, whereas in March I couldn’t walk, now I could probably walk without a cane although I still carry it with just in case. I couldn’t take care of myself in march (dressing, cooking ,etc) and now I can help my daughter get ready for school plus do activities with her, do housework things, workout at a womens workout place, walked the state fair for 5.5 hours (with breaks), and I started participating in dog shows again. Basically I can do everything I did before I got hit, with some modifications (ie cane).
This time my healing process is super slow compared to previous times, but I am keeping faith that I will continue to improve.
I am so glad that things are improving for you!!
AnonymousSeptember 19, 2008 at 2:21 pm
It’s nice to be seeing someone in here being able to run. Something I haven’t seen in years. I’ll be happy to see myself on an exercise bicycle if I can do that if I get better soon. Old saying goes! One day at a time for some of us. I hated the pulse steroids. They helped me back then when I needed them but the weight gain and other side effects is what got to me. But each person is different and one treatment for one person might help them while another person can’t tolerate it! But glad to see a few in here getting better!
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