February 27, 2014 at 1:12 am
Lesson Learned regarding “Managing” Relapses — Trust your JUDGEMENT!! I felt it coming on late Thursday & waited until early Sunday morning before heading in to th ER. I should have went into the ER Late Friday or Early AM Saturday. Three days Liquid Steroids (Solumedral) – Sunday, Monday, & Tuesday. Had my monthly IVIg maintenance Infusion Scheduled for that Tuesday & Wednesday, so I did a double on Tuesday. Thank goodness the IV site lasted the 4 days in a row because I have difficult to “stick” narrow/rubbery veins. My bounce back was not as quick as my 11/2013 relapse. But I am back to Cane (somewhat) to practise/perfect my gait. Have no problems (other than technique) Freestyle walking anywhere in the house.February 16, 2014 at 6:50 pm
Yep, it was a relapse. Went to the ER this morning (O Dark Thirty) & Got hooked up to Liquid Roid Rage (Solumedral). Scheduled back in the ER (Very Early) for dose 2 of 3. I am normally scheduled for my monthly IVIg starting 8:00AM Tuesday & I am hoping I can get dose 3 of 3 before the IVIg.February 15, 2014 at 5:29 pm
I share your feelings regarding relapses!!! I am also on Immuran (Azo 200mg/day). One of the “signs” I watch out for is trouble sleeping coupled with elevated blood pressure. In fact I am suspecting I maybe starting a relapse now, i.e., muscle weakness & tremors in my hands. The last time (11/1) relapse, I went into the ER & got hooked up to Solumedral (sp) for 3 days (over a weekend) followed up the next week with my normally scheduled IVIg. After 2 days/doses of the solumedral, I could feel the relapse had stopped immediately & I was back using a cane. After the 3rd dose, I was walking around inside the house w/o any cane. The IVIg regime was like a strengthening booster switch. The bad part is I’m back on oral Predisone. I just wish I could find the key to managing CIDP w/o Predisone.January 3, 2014 at 5:52 pm
I have been on Imuran/Azothriprine @ 200mg/Day since Mid May of last year. Seem to be tolerately it weLL. I did have a relapse around the first of November and have gone back on 100mg/day of predisone. I expect to start weening off of predisone later this month. My youngest son has Crohns disease, also an autoimmune disease of the intestines. He has been on Immuran/Azo at 250 mg/day for the last 13 years. It has held his Crohn’s in checkDecember 24, 2013 at 12:01 am
REHAB REHAB & MORE REHAB. I was diagnosed 1/31/13 but strongly think early symptoms started around 8/15/12. Spinal tap confirmed my diagnosis at Swedish cherry Hill in Seattle. Initial 5 day loading doses of IV Metaltrexate (sp.) seem to halt the progression. Admitted to Swedish Rehab but nicked my right calf & developed an Infection. All kinds of different antibiotics were IV’ed into me. Rehab really helped & I was scheduled to go home Mid-March when they gave me an antibiotic called Dapsome, plus they started weaning me off of oral predisone (100mg/Day dropping off by 20 mg’s/day each week). A week after that I started relapsing again & after reading the Dapsome warnings regarding ” . . . may affect nerves, . . . “, that one is now PERMANENTLY OFF OF MY LIST. Readmitted to the medical side of Swedish with 4 days of IV Metaltrexate then 5 days of IVIg. Rehab’ed again, worked back to where I was around the first of March & scheduled to go home in Mid-April. The Doc’s at Swedish developed a drug maintenance plan that I would start taking an old proven Cancer Immune suppression pill call Immuran/Azothriprine working up to 200mg/day plus once a month IVIg, infused over a two day period.
Seemed to work but relapsed again around the first of May. back to the Hospital (local Port Angeles), Metaltrexate 4 days, IVIG 4 days, and then to a local nursing/rehab place. REHAB REHAB Rehab, but one thing I noted was this time the speed of recovery was twice as FAST. also, I noted that the IVIg seemed to help a lot more. Out in a month to home but signed up for Out Patient Rehab (HIGHLY RECOMMEND IT) and in a couple of weeks, working with a Quad Cane. By mid-July around the house I was “Freestyle Walking”, i.e., NO CANES.
The local Physican’s Assistant who I see noted an elevated Blood Pressure reading & talked me into a Satin called Lisinapril (sp.) 10 mg/day. Didn’t budged it a bit and told me to up it to 20mg/day which I did. Plus at the time (Aug/Sept) I had weaned totally off of Predisone. First week of Nov started feeling weaker & couldn’t walk as much. In 3 days had to go back to my wheeled walker. Also noted my BP was spiking and I had trouble sleeping (see my thread re early warning signs). Into the ER & got hooked up to the Liquid Roids for 3 days, back onto the 100mg/day Predisone, and the following week my normal 2 day IVIg.
Well what a relief, parked the wheeled walker, Heavy Quad Cane for a Day, the 3rd day, Sunday Go To Meeting Light single point cane Annnnnnnnnnnnnnnnnnnnnnnd Freestyle Walking. Within 3 weeks of that; into and out of the 6 steps into my motorhome, driving the Explorer (Seattle & Back), don’t use any canes/aids in the house.
Bottom Line/Lessons Learned:
1. Minimize Risks, read and avoid any drugs that have warnings regarding NERVES, Autoimmune Conditions, or (in my case only) Azothriprine.
2. REHAB & treat it like a fulltime JOB.
3. The idea of AIDS, i.e., Slide Boards, Wheel Chairs, Push Walkers, Wheeled Walkers, Canes, Etc., is a TEMPOARARY ONLY AID necessary to transition to the NEXT aid. Try NOT to become DEPENDENT on any one AID. The Idea here is to become Independent thru REHAB.
4. Do NOT GIVE UP!!! Keep PushingDecember 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.December 5, 2013 at 6:10 pm
When I went into the local to Port Angeles Nursing/Rehab facility last May, I caught a cold there after the first week. I experienced that voice problem. It cleared after about 2 weeks when the cold went away.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!!!!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.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?????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.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.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.October 24, 2013 at 9:44 pm
My Neuro Docs have prescribed & I take B-12, B-Complex, and Vitamin D3.October 20, 2013 at 6:30 pm
The Infusion Center nurse talked me into getting one since my veins are deep, skinney, and rubbery. Then I brooched the subje ct with my docs and they all Poo Pawed it, said too close to the heart and potential for infections.