Hi,
I have Just been placed onto Prednisolone 40mg per day, after having a bad reaction to IVIG.
I have been told that I am to take the 40mg a day for two weeks and then reduce it right away down to 30mg?
Having read various posts i see that most of the reductions seem to be done in 1-2mg at a time, not 10mg at once.
So, is this normal and is it ok please?
The longer you take prednisone the slower you need to wean off it. Two weeks is s very short time.
Also, the reduction is higher to start because it represents a smaller percentage of the overall dose. You have been asked to reduce by 25% after 2 weeks which is reasonable. If you were at 4 mg that would mean you drop to 3, etc.
If your diagnoses is CIDP and you don’t tolerate IVIG you’ll probably be on a therapeutic dose of prednisone for some time, possibly with Imuran or Cellcept.
Hope this helps.
Good luck and stay positive!
many Thanks Romco!
You have put my mind at ease :)
What you said makes sense, having seen it of course lol!
The question is always easier, when you know the answer :D
Romco said:
The longer you take prednisone the slower you need to wean off it. Two weeks is s very short time.
Also, the reduction is higher to start because it represents a smaller percentage of the overall dose. You have been asked to reduce by 25% after 2 weeks which is reasonable. If you were at 4 mg that would mean you drop to 3, etc.
If your diagnoses is CIDP and you don't tolerate IVIG you'll probably be on a therapeutic dose of prednisone for some time, possibly with Imuran or Cellcept.
Hope this helps.
Good luck and stay positive!
IVIG did nothing for me.I started out taking 80mg of prednisone and was on it for 6 months.Weaning down every 2 weeks or so.Been steroid free now since july.Feeling 100% normal again.I guess it differs with the individual person.Good luck.
Hi mdolich
I am in the UK, I 'think' we only get the one choice over here, leastways thats what my neurologist indicated
mdolich said:
I've always known it to be reduced in small doses, but what is considered a small dose I guess is up to the doctor. When I was taken off Prednisone (60mg), the doctor (GP), stopped me cold turkey, talk about withdrawals. Which I found out he wasn't suppose to do according to my neurologist. Your suppose to be slowly weaned off it. Prednisone didn't help me a bit anyhow. Now I get 80g IVIG every three weeks.
You say you had a bad reaction to IVIG, did they try switching brands? I was first on Gammagard but had a reaction to it. So they switched brands to Privigen and I did good on it. Now that the VA hospital takes care of my IVIG they only use Gamunex-C which does good for me. Might be worth checking into, unless the Prednisone is working for you.
Good Luck, "Stay Strong and keep a Positive Attitude"
Hi john1953,
Yep I guess it is very much a case of individual cases, your consultants knowledge And confidence, etc etc.
Just starting down the path right now, so I will find out as I go along I am sure
Thanks!
john1953 said:
IVIG did nothing for me.I started out taking 80mg of prednisone and was on it for 6 months.Weaning down every 2 weeks or so.Been steroid free now since july.Feeling 100% normal again.I guess it differs with the individual person.Good luck.
I researched the Ig products and luckily got to pick Gammunex-C the Ig with the fewest aide effects. I would want another shot at IVIg before I abandonmed it so quickly. Some bad reactions (aseptic meningitis comes to mind) has been tolerated b/c of the relief it brought. Sounds like some more conversation with your neuro could resolve both your issues.
sussex-man said:
Hi mdolich
I am in the UK, I ‘think’ we only get the one choice over here, leastways thats what my neurologist indicated
mdolich said:I’ve always known it to be reduced in small doses, but what is considered a small dose I guess is up to the doctor. When I was taken off Prednisone (60mg), the doctor (GP), stopped me cold turkey, talk about withdrawals. Which I found out he wasn’t suppose to do according to my neurologist. Your suppose to be slowly weaned off it. Prednisone didn’t help me a bit anyhow. Now I get 80g IVIG every three weeks.
You say you had a bad reaction to IVIG, did they try switching brands? I was first on Gammagard but had a reaction to it. So they switched brands to Privigen and I did good on it. Now that the VA hospital takes care of my IVIG they only use Gamunex-C which does good for me. Might be worth checking into, unless the Prednisone is working for you.
Good Luck, “Stay Strong and keep a Positive Attitude”
Well i wont be actually seeing her for 4 months mdolich, so I will go with the steroid for now and see how that does.
They say that we have a right to choice of treatment over here, but that is somewhat limited when it comes to the actuality
I was on 200 mg of prednisone for 2 years. I am now down to 40. I ivig gave me a stroke & that is why I have been on so much for so long. I hope when I see the doctor in May they will take me off entirely. But I went down 5 mg every 2 weeks. Good luck in your recovery.
Oh wow Carol!
Sure hope that you get there my friend, thats sounds aweful for you!
And Thank You! :)
Carol Niehaus-Moore said:
I was on 200 mg of prednisone for 2 years. I am now down to 40. I ivig gave me a stroke & that is why I have been on so much for so long. I hope when I see the doctor in May they will take me off entirely. But I went down 5 mg every 2 weeks. Good luck in your recovery.
Does anyone know if IVIG helps with breathing problems- I am new to this and still trying to get the ok from my insurance, since it has taken 20 years for diagnosis I am pretty much bedbound and am really sick of waking up gasping for breath. Much of the time I wake up and find I am sleeping setting up with my feet on the floor, this helps me to breathe better but it is still not a very good solution.
Already been diagnosed with sleep apnoea here, tried the CPAP, couldnt get on with the full face at all!
Tried for 2 weeks and was finally giving up after 2 hrs each attempt, just couldnt switch off.
Then tried the nasal and as my dentist forgot to tell me to not blow my nose after 2 difficult extractions, i've a blown sinus and perm blocked nose as a result.
Waiting now to hear from the Ear, Nose n Throat clinic. so i sleep for roughly an hour at a time.
Tired does Not describe it.
And yes, Just realised you were talking to reswyman !
sussex-man said:
Already been diagnosed with sleep apnoea here, tried the CPAP, couldnt get on with the full face at all!
Tried for 2 weeks and was finally giving up after 2 hrs each attempt, just couldnt switch off.
Then tried the nasal and as my dentist forgot to tell me to not blow my nose after 2 difficult extractions, i've a blown sinus and perm blocked nose as a result.
Waiting now to hear from the Ear, Nose n Throat clinic. so i sleep for roughly an hour at a time.
Tired does Not describe it.
And yes, Just realised you were talking to reswyman !
sussex-man said:
Already been diagnosed with sleep apnoea here, tried the CPAP, couldnt get on with the full face at all!
Tried for 2 weeks and was finally giving up after 2 hrs each attempt, just couldnt switch off.
Then tried the nasal and as my dentist forgot to tell me to not blow my nose after 2 difficult extractions, i've a blown sinus and perm blocked nose as a result.
Waiting now to hear from the Ear, Nose n Throat clinic. so i sleep for roughly an hour at a time.
Tired does Not describe it.
Diagnosed with central sleep apnea 20 years ago, my problem is now my mouth fills up with phlegm which wakes me up gagging when I wear the full mask-tried using just nose mask and it did not work to help with apnea. Recently they did testing where a device was implanted on phrenic nerve to shock it into working-trials did great but it is not offered yet as far as I have been able to find so far. My diaphragm is also paralyzed so I do not know if this will work for me-I am waiting and hoping this will help. Unfortunately I also have a great deal of breathing problems in the day. My wife wants me to be put on oxygen. I am still hoping maybe the IVIG will help. If not I am going to have to bite the bullet and go for oxygen.
And yes, Just realised you were talking to reswyman !
It would depend entirely on what the underlying cause of the breathing difficulties were. For GBS, probably yes. For OPD probably not. Take care that your Dx is on the approved list which warrant the use of IVIg. It’s not a riskfree shot in the dark!
rexwyman said:
Does anyone know if IVIG helps with breathing problems- I am new to this and still trying to get the ok from my insurance, since it has taken 20 years for diagnosis I am pretty much bedbound and am really sick of waking up gasping for breath. Much of the time I wake up and find I am sleeping setting up with my feet on the floor, this helps me to breathe better but it is still not a very good solution.
I hope my fellow Americans read this and realize that this is where a state-run medical care program takes you, namely, optionless.
sussex-man said:
Hi mdolich
I am in the UK, I 'think' we only get the one choice over here, leastways thats what my neurologist indicated
mdolich said:I've always known it to be reduced in small doses, but what is considered a small dose I guess is up to the doctor. When I was taken off Prednisone (60mg), the doctor (GP), stopped me cold turkey, talk about withdrawals. Which I found out he wasn't suppose to do according to my neurologist. Your suppose to be slowly weaned off it. Prednisone didn't help me a bit anyhow. Now I get 80g IVIG every three weeks.
You say you had a bad reaction to IVIG, did they try switching brands? I was first on Gammagard but had a reaction to it. So they switched brands to Privigen and I did good on it. Now that the VA hospital takes care of my IVIG they only use Gamunex-C which does good for me. Might be worth checking into, unless the Prednisone is working for you.
Good Luck, "Stay Strong and keep a Positive Attitude"
Has anyone suggested or have you already tried plasmaphoresis?
ALSO:
Thanks!
I'll have a read later on - got the start of a pain management course today
Loni Hart said:
Has anyone suggested or have you already tried plasmaphoresis?
ALSO:
A randomized, double-blind, crossover trial of 32 patients comparing IVIg with prednisolone (oral prednisolone tapering from 60 mg to 10 mg daily over 6 weeks) showed significant improvement in disability in patients receiving either treatment. SOURCE: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846143/pdf/btt-4-045.pdfWIshing you improvements!
Carol Niehaus-Moore said:
I was on 200 mg of prednisone for 2 years. I am now down to 40. I ivig gave me a stroke & that is why I have been on so much for so long. I hope when I see the doctor in May they will take me off entirely. But I went down 5 mg every 2 weeks. Good luck in your recovery.
Did you take anything for the damage to the stomach on that high of dosage. I was on 60 mg for 4 months and am tapering off over a 4 month period, but I have tried everything to the fullest extent, proton pump inhibitors (Prevcid), Pepcid AC and now just antacids, but my stomach hurts every day, had to cut out certain foods. I know you can over do on the above and cause more damage. Can't wait to get off entirely.