Another pred question…
AnonymousFebruary 7, 2008 at 3:55 am
Just wondering what dose of pred does one usually start off on?
I am having an increase in residuals and some new symptoms appearing, I will be calling my pcp in a few hours to call in an order for pred. I have been on pred bursts prior to my paralysis events, for other autoimmune conditions, which are rearing their ugly heads also. I’m just wondering if my usual 40 is going to be useful and helpful in halting a relapse. I’m thinking more but I don’t want it to cause other issues to arise, since I am sooo sensitive to meds. I don’t use anything else other than neurontin and my thyroid meds daily, and started back on lasix today with very limited results.
My current flare up symptoms are severe low back pain, severe right kidney pain, high bp, sensory loss, severe swelling/water retention-all over, nagging-not constant leftsided headpain, double vision, shallow breathing with full lung feeling/pressure, shin/bone pain, foot pain, numbness and parts of my tongue are numb again-which is starting to cause swallowing issues again. and these are just a few of the things going on, 🙁 this lightheadedness is making thinking hard.
I have been able to control my flare ups with rest and strict limitations, but it doesn’t seem to be helping this time. and since I have no ins right now I can’t do much of anything, as far as seeing my neuro and such.
Any advice? What is the highest dosage of pred that one can take for short term? I use to know my limits but that was a few years before all this mess started, and I have found myself having too many bad reactions to simple meds and this would be a bad time to have one of those reactions.
AnonymousFebruary 7, 2008 at 9:55 am
I was on 80mg when I first got GBS. There seems to be some questions as to the effectiveness of prednisone with GBS. I was just reading an article that said there is no data to suggest that it is effective in doing anything for people with GBS. I think it is like everything else with this syndrome…each of us will respond differently so not sure what the answer would be for you. I think speaking to your neuro is your best bet. Good luck with this.
When did you have GBS? You refer to relapsing and I am finding this interesting as I am having a lot of the same symptoms as you…shin pain, sore feet, increased tingling/bussing in the extremeties, especially my legs, numbness and hypersensitivity around the mouth, pins and needles around my face and head, etc. I am currently seeing a neuro but have no results yet. I am 25 years post GBS and have had relatively few residuals. They were there but manageable and I have worked and everything but things seem to be deteriorating over the last couple years and I am looking for others who are having similar experiences.
February 7, 2008 at 10:15 am
So sorry things are getting worse. As the person ahead of me mentioned, steroids are not for gbs. Is gbs a positive dx? Do they suspect cidp? If it is gbs, do the docs insist on using the prednisone for the other autoimmune flare up issues? How confusing all of this is for you! Sorry I have no advice to offer you with your questions, but I have LOTS of love, support and understanding to offer you. Best wishes and stregnth wished to you during this time!
Dawn Kevies mom
AnonymousFebruary 7, 2008 at 2:37 pm
I’m on 80 mg a day. Had been weaned to 35 mg a day and MD last week put me back to 80mg to be taken in a single dose daily.
I’ve been on this drug since Oct of 2007.
I’m having some of the side effects as in fluid retention, high b/p, and elevated sugars. But, the MD seemed to think the benefits would out weigh the side effects at least for now.
Also on monthly ivig infusions
I have cidp,
Sorry your symptoms are increasing and it must be scary with no insurance. If, i did not have medicare and supplement, i’m not sure what i could of done.
But, your health is first and foremost. Please go to MD and see what can be done to help you
AnonymousFebruary 7, 2008 at 3:15 pm
Cheryl ~ I’m so sorry that you are in a difficult space ~ again! It is so scary to be without insurance (I can’t get it either). I have become rather resourceful with complimentary medicine. I couldn’t survive without my acupuncturist 😮 Hang in there, Girlfriend. Hugs to you 🙂
AnonymousFebruary 8, 2008 at 2:38 am
I’m Truly feelin’ the Love from you all!:) My Dr called in a script for a pred burst this afternoon, 60mg down to 15mg in a few weeks-my usual pre paralysis dose. I usually don’t have any problems with this level of pred, but with my kidneys acting up who knows what is in the future. Yeah being without ins is such a stress, at least my kids are covered by medicaid. That is my first concern, to make sure my babies get what they need first. The stress is high, which is probably the cause for my flare up. My hubby will be starting a new career as a truck driver later this month, home only for 34 to 48 hrs every 5 to 7 days. Its a brand new and long wished for start to a better life for us, been through tooo much in the last few years. I have to try to help my kids deal with the upcoming change and help support my hubby as well, and get myself straightened out at the same time. My hubby is very supportive of me and understands when I tell him I just need a few hours of rest, He fills in as much as he can-which helps my mind.
No dx as yet, but my Dr who sees me all the time and knows me and my other health issues, has dxed me with CIDP. Since I don’t fit the book definitions for any one common type of gbs, he and other Drs have told me I’m a unique, difficult case:D . At least I have 4 Drs who can All agree with one thing about me.;) Since I have had 5 in hospital stay relapses in the last 2 1/2 yrs and 11 stay at home relapses, with no return to normal in between, it looks more like a relapsing/remitting type with an acute onset CIDP. I can’t use IVIG because of a.m. reaction, this is my first attempt with pred. Keeping fingers and toes crossed-well more so than they already are.
Janet, are you flare ups slow onset or acute onset? I’m Praying You can get relief fast.
I have noticed that this flare up is coming on alittle slower than the first couple that I have had. Each one seems to have different things about them, while at the same time there are soo many similarities between them.
I am trying to relieve my stress more this year by crocheting things, lots of things. Since Jan 2nd I have crocheted 5 lapghans and I’m 3/4 of the way finished with a queen sized afghan for my hubby. Gee when I look back and count the projects completed it occurred to me that I must be Really stressed! I have Never finished more than 4 small crocheted projects before! And I have actually already planned my next 2 projects.
I better go get some rest, I’m tired just thinking about crocheting.
Thanks again for All the help and advice, BIG HUGS to EVERYONE!!!!
AnonymousFebruary 8, 2008 at 9:38 am
My original onset was rather slow and over a period of a few days. This flare up has been coming for a very long time but I had been so well for so many years that I chose to ignore what was happening as I was scared and afraid the GBS was returning. I had a tough time with the original GBS and was completely paralyzed and on life support. I was also a mom with 4 small children, the youngest only a year old and the third affected by a disability. I pushed myself when I first came home and continued to do that over the years. Now I can no longer ignore what is going on.
I get “electric shock-like” things, and the tingling has become a constant buzz all the way to my knees. I have pain in my shin and in my feet and my right side has been extremely weak. I also have the lower back pain that you talked about. I saw a neuro in Nov and am now on gabapentin and it has really helped with the tingling and my right side seems to be stronger. I still get some of the other pains though. I am gradually increasing my dosage but I have also been denied coverage for my meds so it is hard to afford them each month. I live in Canada but for medications and stuff we need to have additional personal coverage as gov’t only covers a portion. I find the meds have side effects that make it difficult for me to function and I work so have needed to go at this slowly.
Keep me posted as to how you are doing. I really can appreciate how hard it is to raise a family while dealing with this illness. I have been there and never want to go back!
Take good care.
AnonymousFebruary 13, 2008 at 4:14 pm
Well I’m on day 6 of my pred burst. Yesterday I started having an increase in my residuals. This being on the 2nd day of the decrease. Today I’m alittle worse than yesterday. While on the 60mg I was doing well, my resids leveled for the 3 days.
Would you agree that I should try a steady dose of 60mg to see if it levels everything off again, or would you just take a chance on the reduction working out in the end?
Thanks for all your input!!:) Have a Good Hump Day!!:D
AnonymousFebruary 14, 2008 at 8:39 am
My experience with the prednisone taper wasn’t fun. Everytime mine was even decreased by 5mg I would have symptoms that kept spiraling. It would take IVIG to bring me back which I know for you is a no no. My advice would be to stay on the 60 for a bit and then when you do taper do it slower than this time. I decrease mine by 5 mg every other day for a month. My symptoms always came at the 10 day mark…..I hope you can find relief. You are in my thoughts and prayers.
February 14, 2008 at 10:38 am
I am so sorry everything is so confusing! Good news about your husband, I am happy for your family. About the prednisone, I have no knowledge or experience other than what I read here and other info.on websites. But one thing I feel, is that you seem to do better with the higher dose. Maybe you can figure out how long a flare up is for you, keep it constant at that time and taper in between.
I guess since prednisone helps you, you can assume it is in fact cidp, since steroids do not aid with gbs. Plus the consensus of all of your docs solidifies the cidp dx. That is a positive thing, you know what it is and you can start a game plan to get it under control. No more speculation.
I know ivig sucks for you and you get that am reaction as Kevin does. But…, I did want to let you know, although Kevin still gets the dibilitating headaches, they have decreases in intensity by I would say 75%. We no longer throw up, and he no longer has to be in total darkness, and he is able to move a bit now while he has the headaches. He has taken on the flu like symptoms these last few times however. Perhaps we just never noticed them before because the headaches were so awful. My point being (yes, I actually have one, I just always ramble on) if you were up to it, maybe you could try the ivig again. Did you have s/d when you had the worse reactions? S/D was what made Kevie the sickest. How about that blood test to check your IGg,IGa levels (excuse the wrong capitol, smalls, don’t know the proper ones) to see which ivig could work best for you. Did you get iv solumedrol as a pre med when you were having dificulty?
I am sorry to go on, I know you already know all of this stuff, I just want to try to think of something to help you, you are always so kind and concearned to so many whenever we post! I would love to return some of the goodness you give out!! Good luck! I am praying that God helps you find something to help you!
Love and good thoughts are sent your way!
AnonymousFebruary 15, 2008 at 2:16 pm
Thanks Jan and Dawn. You guys are soooo Sweet!! This is the first time of trying the pred for these symptoms. I was given another script for the 60mg, sooo keep all fingers crossed. I am noticing a really fast recovery with the 60mg, I have never reacted this fast to any kind of med before-another plus for me:) It doesn’t take away everything, but even the small, good reliefs are fine with me.
I’m in one of my high attitude moments right now, I know this will be the boost I need to sidetrack another relapse.
I know what you are saying about trying ivig again, Dawn. But there is no using ivig ever again for me, extremely high temps, continous vomiting, the most severe headache I’ve ever had and that is just the beginning problems that comes with ivig for me. I am allergic to Tylenol and Benadryl, so there is no premed. No other treatment has been tried on me by the drs around here-just because of my reactions. I scare all the drs.:p I have requested pp, but the dr used every excuse he could think of to postpone it:mad: But Hey, I’m still up and kickin’ and I’m bullheaded, and life goes on……… and now since I have no ins other treatments are all on hold. Hugs to All!!! Happy Friday!!!!!
AnonymousFebruary 15, 2008 at 3:15 pm
[FONT=”Comic Sans MS”][SIZE=”2″][I]Cheryl,
Glad you are bullheaded, it sure helps get the grease on the squeaky wheel, doesn’t it?:)
Regarding the PP, it sure did the trick for me.
With my initial dx of GBS, a five day course of IvIg worked well and got me back on my feet, however when I relapsed 10 days later, the same course only brought me back to about 50% and over the course of 2 months I slowly deteriorated to the point of barely being able to manage a walker.
Then my Doc put me on PP course,
The catheter/port was implanted and I had my first treatment as an in patient, on the day of my second PP, I had to use both hands to turn the ignition switch in my car and it was a tremendous struggle to handle loading and unloading the walker.
By the end of the 4th PP, I was walking with a cane and everything became easier. Had 7 PP’s spaced over 2 week period, and by the end I was walking unaided, though I still carry the cane just in case the balance goes off.
My point is, for myself at least, PP was a miracle.
Catheter still in place and I don’t mind accomodating it since i credit it with giving my back my hands and legs.
Now lower that bull head of yours 😀 and charge after your Doc, get him/her to listen. ‘Kay?
AnonymousFebruary 16, 2008 at 8:07 pm
Please describe your “pred burst” protocol. I also take prednisone and have noticed that there is a period in which things feel worse, but then resolve. It seems to be related to how much and the interval between prednisone dose.
Two other things. First, I have tried a protocol, brought to our attention by Pam H and promoted by Dr. Parry, in which I took a huge dose of prednisone once a week and then tapered to a lower dose. The goal is to reduce the overall side effects of the prednisone, while still providing effective treatment. You might have your neurologist e-mail Dr. Parry about his protocol. Actually, he does the treatment with IV solumedrol, but we elected to use prednisone orally as I have terrible veins. I can give more details about the protocol I am following, if you wish.
Second, try plasmapheresis. Yes, it is a nuisance if you need a catheter, but like Veronica and others, it is an essential treatment for me. (Yes, I need a combined therapy; neither prednisone nor PP alone do the job.)
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