Wish Me Luck
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September 14, 2013 at 6:08 pm
My “Medical Plan”, is to ramp up on a daily dosage of Imuran/Azathioprine to 200 mg a day which I have been at since mid May with no ill effects. Also getting IVIg infusion every 30 days for 2 days, also with no ill effects. At the same time I was on a daily dosage of predisone og 80 mg. I saw my local Neurologist who in consult with my head neurologist in Seattle last month, they decided to ramp my predisone down to zero in 10 mg increments. Well, Friday was my first day without any predisone, so wish me luck that I do not relapse. Especially since my PT has gotten me to a point where I’m now walking with a cane, and in the house, walking short distances without any assistance (canes, walkers, wheeled walkers). Also with a wheeled walker, walking distances over rough ground.
The IVIg portion of the Medical Plan is to continue the every 30 day, 2 days of infusion cycle for the next 3 months, then cut the infusion to just 1 day. I’ll post progress and/or problems here in this thread as appropriate.
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September 16, 2013 at 6:06 pm
Hey, you got the wish. Good luck and hang tight.
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September 16, 2013 at 11:04 pm
Tomorrow & Wednesday is my post predisone IVIg Infusion.
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September 20, 2013 at 3:46 pm
Well it’s been one week without predisone, knock on wood & cross fingers and toes. Also had my monthly IVIg infusion on Tues & Wed. It’s still scarey like leaping off into the unknown.
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September 20, 2013 at 10:22 pm
Hang tight. I know how you feel. I am trying to go with nothing after 19 years of treatment.
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October 3, 2013 at 5:43 pm
Well, Tomorrow marks 3 weeks without the Roids (Predisone) and everything seems to be going as planned/well (knock on wood again). I also seem to be improving with mobility. I can walk (in the house – smooth floors) short distances (20 – 30 feet) “Freestyle”, i.e., No Cane. I have not even used my wheeled walker since going predisone free, just a quad cane. And the distances/time with the cane is increasing and getting easier.
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October 4, 2013 at 7:54 am
so glad to hear things are going well!!!! Thanks for the update and hope things continue to just get better and better!
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October 20, 2013 at 6:25 pm
Well another week has slipped by with No Relapses, plus finished my Oct IVIg Infusion. Annnnnnnnnnnnnnnnnnnnnnnnnnd an Important Goal I set for myself was achieved, and that was to WALK out to my Motorhome and climb the 6 steps up and in it. I DID IT!!!!! Now for my Next Motorhoming Goal, drive it out to I-5 south bound from Olympia and terror Prius Drivers (hehehehe). Gotta have goals. I have been getting around in the house with FreeStyle Walking, i.e., No Aids/Canes/Walkers.
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October 29, 2013 at 6:03 pm
Haven’t used any of my canes in the house for over a week now. I consider tht yet another small victory.
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October 29, 2013 at 9:16 pm
That’s the progression I made. I stopped using my cane indoors, but always took it outside. Eventually I was no longer using it outside and gave it up for good.
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November 7, 2013 at 5:56 pm
Maybe having relapse problems, starting to have balancing & strength problems. Two weeks ago I waqs getting around the house very well w/o a cane, now have to use a cane. About 3 – 4 weeks ago, my GP Doc notice an elevated Blood Pressure and put me on Lycenaprill (sp.). I am wondering if that was the “Trigger” for relapsing. I suspect that an antibiotic Dapsome was the trigger in my first relapse at Swedish Cherry Hill last March. Any thoughts/ideas will be greatly appreciated.
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November 7, 2013 at 10:01 pm
JohnQ, there is no connection between Lisinopril and neurological disorders as far as I can determine. Sometimes CIDP takes a relapsing course with nothing in particular to trigger it. That’s why it is called “chronic.”
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November 7, 2013 at 10:15 pm
The same for Dapsone — I can find no connection. One should not take any antibiotic unnecessarily, but when you need it you need it. I take medication for BP (including Lisinopril) and hich cholesterol, and I get vaccinated for influenza. If I get an infection treatable by antibiotics, I’ll take those, too.
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November 8, 2013 at 4:24 pm
Got the Info sheet out on Lisinopril, has a definite warning if one has an autoimmune disease. I remember reading the warning on Dapsome, and it also cautioned folks that a side effect “may” affect nerves.
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November 8, 2013 at 9:22 pm
According to US government reports cited below, Dapsone or Diaminodiphenylsulfone appear to be involved in triggering peripheral neuropathy, especially as the dosage is increased. These adverse effects are said to rarely occur at doses less than 100 mg per day.
Reports:
1) http://www.ncbi.nlm.nih.gov/pubmed/11214480
2) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921741Lisinopril is in a class of drugs called ACE inhibitors. There is no credible information about Lisinopril or other ACE inhibitors causing peripheral neuropathy that I am aware of.
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November 9, 2013 at 12:37 am
That mention of “peripheral neuropathy” in the Lisinopril information sheet doesn’t mean anything to me. Those sheets list everything any user has ever complained about, whether there is a causative relationship or not.
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November 9, 2013 at 12:46 am
Jim, the second article linked is interesting. Thanks for that. However, to clarify, neither of these is a “US government report.” The NIH database references medical reports from any recognized journal. This does not imply any US government sponsership or approval.
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November 9, 2013 at 4:54 am
GH, please pardon my poor choice of words “US government reports”. Just because they are published on a website run by the government does not necessarily imply the government affirms the correctness of the content.
For clarification purposes – Some of PubMed Central’s reports are NIH-sponsored, some are peer-approved by the medical community, and all must conform to certain quality standards: “A journal will be deemed to be eligible for inclusion in PMC if the NLM Selection and Acquisition Section determines that it conforms to the scientific quality criteria specified in the Collection Development Manual of the National Library of Medicine.” More PMC requirements can be found here: http://www.ncbi.nlm.nih.gov/pmc/pub/pubinfo
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November 9, 2013 at 7:03 pm
Went to the Hospital ER @ 11:00PM last night, waited for 2 1/2 hours to see ER Doc, thinking all the time I would be admitted for 7 – 8 days getting IV Roids & IVIg, BUT NOOOOOOOOOOOOOO, since I walked into the ER via my wheeled walker & not strapped to an ambulance gurney ($$$$$$). Got a 1,000 mg dose of IV Roids (Solumedrol) and they sent me home with instructions to come back to the ER EARLY (6 – 8 AM) Sunday & Possibly Monday for more IV Roids. Didn’t get home until after 3:30 AM. I surprised myself and navigated UP the ramp with my wheeled walker into the house then to bathroom, back to the Great Room and my Big Easy Chair & lights out until 9:00am. Seem to be manuevering around fairly well. Need to Test Out walking with my cane tho, that’ll be the definitive test.
As a note regarding the Lisinopril, the timing of daily doseaqge amounts from 10mg to 20mg seems too coincidential timing wise to the start of the relapse. Will be discussing that with my Neuro Doc Wed morning. Especially the specific warning on Lisinopril info sheet about folks who have autoimmune diseases. There are quite a few alternatives on the market w/o that specific autoimmune warning, so why test the fates?????
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November 12, 2013 at 5:59 pm
Total 3 days 1000mg Solumedrol, sure hope & pray I have bottomed out on this relapse. Strength down about 70% & balance all about shot. I am clinging to wheeled walker mobility. Started on 100 mg oral Predisone & still maintaining the 200 mg azothrapine. Will be seeing the Sequim local Neuro Doc tomorrow morning. Again thoughts & prayers are always appreciated.
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November 12, 2013 at 8:19 pm
John, we wish you all the best and hope you kick this thing in the butt.
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November 21, 2013 at 12:35 am
I was on Lisinopril for a short term , I get coughing from it and if I was still on it I could see it a cause of a relapse or at least making my cidp more intolerable.
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December 5, 2013 at 6:05 pm
Well it’s almost been a month since I (actually started/stopped) relapsed. It did bottomed out with the 3 days of 1,000mg IV Roids. Plus I’m back on 100 mg/day oral predisone. The following week I was scheduled for my 2 day IVIg infusion. The IVIg infusion was like a “Booster Switch.” The day after I PARKED my wheeled walker, started quad cane again, ditched that heavy beast, went to my Sunday-Go-To-Meeting cane, and now primarily in the house, FREE STYLE WALKING!!!! Still use the light cane outside to minimize falling/tripping risks.
Got up the 6 steps into and out of my motorhome. Started it up no problems and felt very comfortable “Playing” like I was driving, i.e., accelerator to brake, back and forth. Then yesterday (we live in a semi rural area), I went out and got into our Ford Explorer. Started it up, played with the brake & gas pedal. Felt very comfortable with that exercise. So I drove it around our driveway twice. No problems, felt comfortable & safe. Drove around the neighborhood feeling very safe & comfortable. Took it out on the Hwy & drove 10 miles down the road to Joyce & back. Again Safe & Comfortable. Wife & I are planning a trip into Port Angeles today with me driving both ways. The pure joy of driving independently cannot be expressed enough by me at this accomplishment!!! Especially so soon after the last relapse. It gives me HOPE that I can somewhat manage CIDP and have some simbalence (sp.) of a normal life.
Last but not least coincidence is at it again. My normal twice a year Headshed Neuro Doc Lee-Loung appointment at Swedish Cherry Hill in Seattle is friday. I plan on doing the driving from Port Angeles to the Bainbridge Island Ferry but will turn over the keys to my wife for the city stop & go crazy side in Seattle (ferry dock to Swedish). Then take back the driving on the Bainbridge side again. That will allow me to guage my driving endurance (200 + miles a day). Again, everything I do I consider a part of rehab, building BALANCE + STRENGTH + ENDURANCE. Our family has a bunch of B-days the first half of March with the Grandkiddies living in the Portland area, so that provides & builds on a GOAL, that is for me to prep our motorhome & drive it there & back.
Closing – Feeling Hopeful again, hope and pray our CIDP community/members are also feeling/experiencing the same!!!!
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December 16, 2013 at 11:55 am
How you doing, JohnQ?
I’m getting IVIG and SoluMedrol (Prednisone) infusion every two weeks and I’m afraid the only thing working in my favor is the steroid. I’m interested in how you’re doing off the steroid.
Best of luck to you!
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December 16, 2013 at 5:13 pm
Doing OK & Still Improving. I am at 100 mg/day predisone. Probably start (again) weaning off of it Jan. My plan is to reduce by 10 mg/day every two weeks.
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