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.

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.

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 Pushing

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.

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.