Afternoon folks,
I'm new to the webpage and although have joined some CIDP related facebook pages I thought I'd join this too. I'm just going to give you a brief update of what happened and whats currently happening, and then ask a few questions.
I was diagnosed with CIDP in June 2013 after tests ruled out everything else, it was then confirmed with the use of a Lumbar puncture (increased protein levels etc). At the time I was unable to walk unassisted, and so was given high dose Prednisilone (60mg a day) after showing excellent signs of recovery I had dropped down to 10mg. I was on 10mg for quite a long time (about 4 - 5 months) and then went on my stag do. I hit it pretty hard to be honest, and ever since I have had some weakness in my feet. Now to recap, The only thing i couldnt do before this "blip" was run, (and i was slowly getting able to do that too). I have had spells when I have dropped down med levels.and my feet have felt a bit heavier, but after a week or so i've come through it's and been fine. Over the last 2 weeks the heavy/slightly achey legs have not gone away (they are more mobile/less heavy in the evenings), and so I have have spoken to my neuro and gone up to 20mg of Pred. But im concerned that this may not be enough, and how quickly should I feel the effects of this increase dose? On the first day of the increase I felt great, but that waned, and although I feel better than I did before upping to 20mg, I dont feel as good as I did before my stag do. My Neuro has been supportive throughout and said "do what you need to do". If I become aware of my actual symptoms returning (cant move my feet, numb hands, basically cant move), he wants to see me, but I have also read that people who were on 10mg have gone right back up to 40 or 50mg (for a month) to knock the immune system back, then began tapering again.
He did advise about going onto Methotrexate or Azothioprine, but it's a form of chemo, so I am not up for that at, unless it becomes a last resort. He also mentioned IVIG, which is an option, but i've shown such good results on Pred, I would be happy to continue, as I know it worked in the past.
My questions are;
Am I having a relapse or just having a rough few weeks?
What is a reasonable amount of Prednisilone to increase too? I'm on 20 now, I may go up to 25. Up to 30mg would be half my original dosage, but I have plenty and could got 40 or 50mg.
And to put me out of my misery (i've been keeping a health diary and tracking back), is it likely that pushing myself so hard on my stag could have caused this lull in my recovery?
Any answers would be appreciated.
Thanks
You need a combination of prednisone and IVIG treatments. I can’t believe they have waited this long!
you may want to discuss the pros and cons of IVIG infusions which can be much better than Prednisone without the long term side effects of prednisone such as osteoporosis, diabetes, weight gain, and bloating. It is expensive if your insurance doesn't cover it. I just finished my first series (3) over 3 days in Nashville @ 200 mi. from my home. Sometimes you have to push your Neuro a bit.
I am taking 40mg IVIG treatments every 10 days with 20mg methotrexate 2 days consecutively along with 22ml of prednisolone every other day. Even wit this dosage of medicine I have had relapse several times over 3 years.Usually several doses of IVIG will bring me back around. This has just become a way of life for me. I live and try to enjoy every day and don't complain about my CIDP. Some nueros want you to come to there hospital for IVIG treatment. My DR. has communicated with my local and I have treatments at my local hospital. Sure is more convenient. You might want to persuade your DR. to try IVIG treatments. When I have felt I am relapsing I immediately notify my nuero. It's best to start treat ment asap because I don't think it will go away without some extra form of treatments. Good luck and don't give up.
They come to my home to do the IVIG treatments
Hi Paul -
Sorry for your struggles. For me, the treatment is sort of an art and a science and very specific to each individual, and you are going to need to try things and continue to keep the log to see what does and doesn't work for you.
I agree with the others that the IVIG should be tried right away. For some it's a miracle. Your symptoms seem to be breaking through the prednisone levels as you taper down. Usually the neuro hits you with a high dose to jolt your system and then starts the taper again. Going up a few mg. probably won't do the trick.
For me the IVIG never had much of an effect and I've been on prednisone and Imuran for the last several years. We tapered off both for a while but it didn't hold. Right now I'm trying to taper off the prednisone and am at 20/5 on alternate days.
Best of luck and keep checking back here. There are smart and experienced people on this site and it really helps to share with them.
- Rosemary
Thanks for your replies guys, I havnt really talked about IVIG/pred infusion as I currently work full time. Only if I have a full relapse would I go on to IVIG. I am still walking about fine, but from what I have read, it is not uncommon for people to have a large dose of Pred for a while before tapering down again. Guess I’ll go up 10 more mg then taper back.
IVIG infusions have completely arrested my advancement of CIPD. The cause of my condition has been identified and corrected so I have had great improvement as well. I went from stumbling, falling, dizzy, using a cane and almost in a wheel chair to getting my functions back considerably. I can even run again albeit not with grace nor speed. If your insurance covers IVIG, that is a better option than steroids due to the long term effects. I have been on IVIG for 2 years now and will probably be from now on.
what's a "stag do"?
Ah, a Stag do is this British equivalent of a batchelor party. I get married a week today.
OK - congratulations!
Skiptech said:
IVIG infusions have completely arrested my advancement of CIPD. The cause of my condition has been identified and corrected so I have had great improvement as well. I went from stumbling, falling, dizzy, using a cane and almost in a wheel chair to getting my functions back considerably. I can even run again albeit not with grace nor speed. If your insurance covers IVIG, that is a better option than steroids due to the long term effects. I have been on IVIG for 2 years now and will probably be from now on.
“The cause of my condition has been identified and corrected” - what was the cause?
Rfisher7381 said:
80 mg a day of Lovastatin over a 2 year period. The side effects include neuropathy. When taken off the drug and started IVIG, the change over 90 days was dramatic.
Skiptech said:IVIG infusions have completely arrested my advancement of CIPD. The cause of my condition has been identified and corrected so I have had great improvement as well. I went from stumbling, falling, dizzy, using a cane and almost in a wheel chair to getting my functions back considerably. I can even run again albeit not with grace nor speed. If your insurance covers IVIG, that is a better option than steroids due to the long term effects. I have been on IVIG for 2 years now and will probably be from now on.
"The cause of my condition has been identified and corrected" - what was the cause?
My situation is similar to yours. Rather than IVIG treatments I tapered off prednisone (60mg now "0") and started taking Azathioprine(150mg). I continue to take Azathioprine (non steroid) only (still 150mg) Yes, my feet feel like heavy weights attached to my ankles and my first couple of steps after sitting are a bit shakey, but I have not fallen since I regained my ability to walk (12/10). I have not had an IVIG treatment since my initial problem with my imune system in March 2013.
I stated earlier that IVIG is the most effective treatment and it doesn't have the long term side effect of steroids. Steroids are very inexpensive and Immunoglobulin is very expensive. I do have good insurance coverage.
Being based in the UK, IVIG would be covered by the NHS, however it's generally only used in severe cases, and after reading and knowing a lot about this awful disease, I don't have it as bad as it could be. I am in no pain, and the results from taking Pred were classed as "remarkable". If i do have a serious relapse I will be considered for IVIG, but the neuro seems to think if it is managable with steriods, then thats how I should continue.
How is your sleep < ? > Your gut is repsonsible for 80% of melatonin as well as 80+% of your immune system.
Please monitor your diet carefully. Consider a diary of symptoms vs diet- to bring to your next MD appointment.
Good Luck Kiddo!
What constitutes a relapse?
Voltage potentials along axions from the brain, or lower neurons, are an either/or proposition. During relapse, you return to a state of demyelined axions; the switch is turned off. At this point, muscles will not function or will function only with diminished functionality (weakness, pain, fassicculations, making irritable and grumpy forum postings) because muscle fibers are not activated to their full strength/potential.
Listening to others drug combinations for CIDP will not be to your advantage. Too many cooks spoil the soup, and if you understood the humeral soup that is you... well, put it this way, you can never understand CIDP, no one can. Neurologist can only take pot-shots and gamble with med-chips for high-stakes with the hopes of a JACKPOT! myelinzation that lasts and lasts. CIDP is a cascade of chemical events cooking your myelin and it is best to allow only a well-versed neurologist to enter you kitchen or casino. Christ, have I used a mixed metaphor again?!
I am at 120 grams of IgG every two weeks, plus Azathioprine. I've achieved 90% remission. 64 y.o. Drop foot. Swim 2 miles daily, and this really is the factor that made those vile, mean and nasty relapses go away, go away... and never to come back another day... I prey. And, do I prey!
Loni Hart said:
How is your sleep < ? > Your gut is repsonsible for 80% of melatonin as well as 80+% of your immune system.
Please monitor your diet carefully. Consider a diary of symptoms vs diet- to bring to your next MD appointment.
Good Luck Kiddo!
I'd revise the 80+% of immune system figure and take into account that very neglected organ; the spleen, of which I lack; and the bone marrow, which creates lymphocytes, which creates the majority of immune-mediated reactions to antigens.