saying goodbye to the roids.
AnonymousJune 22, 2007 at 8:03 am
I went to the neuro on Tuesday and I am a bit confused. I told him how I’d had the 8 to 10 days of declining…weakness. I told him how I was researching braces, etc. He didnt have an answer about what was going on.
I’m back to where I was before the weakness. I’m still without feeling in both feet and cant move any toes but I’m not struggling as much to walk and type. I’m still sypmtomatic but not an obvious worsening each day.
So, no answer for that.
I do get to wean off the ‘roids. He said he’d hoped to see improvement but since my last visit there is slight worsening and no reason to keep me on them. I told him how I felt like I had post partum depression and menopause at the same time. Even tho I dont really have menopause yet… THANK GOODNESS….I’m getting off the steroids.
I was sweating just sitting on the exam table. Another pleasant side effect of those. I also asked him if he’d heard of roid rage…he said yes. I am a nice person usually and very easy to get along with. I laugh alot and am easy going.
Not under the influence of heavy duty steroids tho. I cant stand myself most days !
He is taking me off the roids and doing no treatment at all and going to wait and see what happens. I am not scheduled to go back until DECEMBER.
He is sending me to a physical medicine rehab dr to get started with some PT and said they may or may not recommend an AFO.
Of course he said, “dont hesitate to call” if things change. If they do we’ll go back to IVIG of plasmapheresis.
I am confused by no treatment…but thinking he wants to see what will happen.
for those of you following my story, what do you think about this ?
have a great weekend everyone….I’m going to be so busy, there will be no time for rest…and it’s going to be in the 90’s with very high humidity.
Gotta love Nebraska. :rolleyes:
AnonymousJune 22, 2007 at 10:02 am
Only thing I have to say is “either get another dr. or call him and say he’s crazy.”
You can’t wait until December. That is ridiculous. By then, you’ll be in a wheelchair, or worse.
You know, Dell is doing so well on the solumedrol. We did 5 day in hospital and on the 6th day, we saw improvement. Dr. Parry is advocating this instead of ivig, maybe if ivig fails, which it did with Dell.
Good luck. I know it’s frustrating.
AnonymousJune 22, 2007 at 10:12 am
This is a classic case of your dr doesn’t know what else to do with you. Having a person with active CIDP off of ANY meds is CRAZY talk. Absolutely NUTS!
You are getting WORSE right NOW! You can’t wait until December.
You need to find another dr RIGHT AWAY!
If you must then find your local MDA (Muscular Dystrophy Association) clinic & try to see if a dr there is familiar with CIDP. They see people with other disease & not just MD.
Emily’s pain level was worse while on the steroids but the dr said that her EMG was slightly improved. Since there was deterioration then I’d say that you either need infused steroids or to go back to IVIG. What about taking any of the other drugs like Imuran or Cellcept? Have your tried those?
You’re weaning off of the ‘roids & not completely stopping them, right?
Gotta go. Emi’s nurse is on her way over.
AnonymousJune 22, 2007 at 11:34 am
Just my opinion, I would ask to be put on IV roids. If you can stand the treatment and it makes you feel better, then why change things. In my case, I can’t do IVIG, and my neuros won’t try anything else due to the risk factor (they say), so I end up getting to the point of being hospitalized and paralyzed, away from my family and my kids. I have passed my good point in between my relapses and i would/will do anything and everything to stay at home and moving-even if it means missing out on alittle bit of living, anything is better then getting to the paralysis point again. If you can, call your dr and let him know your feelings on his choice of treatments and your concerns and request whatever you feel will work or what you want to try. Its your body, your life and you have the choice to live life to the fullest and most comfortable way you can, even if it means you go against what someone not going through what you are going through says. Stand up for yourself, think what the future has in store for you, and think what would happen to you and your family if you get to the point of not being able to move. Now is the chance for you to take control of the future. No one can tell you what you have to do, but we can just nudge you in the right direction. Take care.:)
AnonymousJune 22, 2007 at 12:38 pm
I agree with all the posts that say it’s crazy to delay until December to see him. Especially since he didn’t see any improvement at all!
I’m much much better but still can’t get my neuro to let me get off 5 mg every other day — when you feed your body steroids, it stops making them and so I’ve been told it’s unlikely I’ll get off this minimal dose – EVER.
I’m so sorry for the tough time you’re having — I understand about the steroid rant — used to have the rants when I was much higher doses.
Please, find a second opinion — this disease is NOT improved with physical therapy.
June 22, 2007 at 1:26 pm
Hi Connors Mom,
I too have read articles that if ivig is not working, iv solumedrol works. What steroid were you on before? Prednisone? I was told that prednisone is a temporary, short fix, it reduces the inflamation temporarily. One way that we are going to monitor Kevin’s progress or decline, is we are going to do another ncv/emg in mid July while he is strong and just off ivig. Then we will do another ncv/emg to see if there is any decline the next time he has symptoms. We are at a different stage than you, we are trying to figure out if Kevin has active cidp at the time of his symptoms or if it is residual gbs.
Anyway, I agree totally, NEW DOCTOR!!!! If it is not that easy to find another doctor in Nebraska, and you have to work with your current doctor, maybe you can run the ncv/emg theory past him to at least document any decline. He can’t dispute the results if they are staring in him in the face. You cannot just do nothing, you will decline, who knows what affects it will have. Who knows how much more nerve damage it will cause.
Regarding PT, How can your doctor expect you to make progress if more demylienation is occuring? You will just be stressing out the nerves that you do have left. This is how it was explained to us regarding Kevin doing too much, or in your case PT. Anyway, lets use your hands for example. Ok, the nerves in your hands are damaged, so the nerves in your forearm take over the job of making your hand muscles work. So now your forearm has its job to do plus the job of the hand. It is already on overload. So, if you over do with PT, your are double overloading the forearm nerves. Obviously the explanation is more technical, but you get the point. Good luck! Please seek another doctor if possible! I will pray for you and your family.
Dawn Kevies mom 😮
AnonymousJune 22, 2007 at 6:42 pm
I gave myself time to think this over because I wanted to make sure I’d respond in the right way since I am one of the members who no longer needs treatments or steROIDS. First, steroids can be difficult to come off, it has to be done very very very slowly, especially if you’re on a high dosage. It took me one failed attempt and then one year to get off them. Like everyone else, hated what they did to me, I actually felt like I had a Jeckell (sp?)/Hyde personality. But, for me, if I needed them, I would have stayed on them.
You said you experience declining weakness, so rather then listening to your doctor or confusion, the weakness indicates that you still need IVIG’s. For more then a year, my doctor would always ask me how I feel and my answer was always “the same”, no sign of getting weaker, no sign of losing strength. I’d continually maintain my abilities. I remained stable for more then a year before I even talked to my doctor about ending the IVIG’s.
I have a very slight drop foot in my left foot, but I never dragged the foot or tripped over them. I considered trying AFO’s, but chose not to do that because I do very well with sturdy ankle high boots.
AnonymousJune 23, 2007 at 1:21 am
I also agree with everyone else that you need to be on some kind of treatment. I took 100mgs of steroids a day, they did not work at all and made me gain over 100lbs on my very tiny petite frame of 5 ft tall. I was “crazy” on them, everyone tells me horror stories of things I’ve done and said while I was on them when I normally have a sweet disposition. When I had my first bout with CIDP, the IVIG quit working along with plasma pheresis and steroids, so they called for drastic measures to treat me with chemo (cytoxan) to put me back into remission.
I relapsed last summer and have been doing a regimen of 10 grams of IVIG every week along with an immunosuppressant called Imuran, I have been on this regimen for 13 months now, and have had much gain with this regimen. I came from a ventilator to walking miles at a time unassisted. Your doctor should try different treatments to see how you react to them, but you should deffinitly be doing some kind of treatment.
If I were in your position I would deffintely be looking for a new nuero or be aggressive with the one you have, the longer you go without treatment the more damage you are going to have too your nerves, it needs to be treated now before you are left with permanent nerve damage.
AnonymousJune 23, 2007 at 2:46 pm
I credit steroids for really tamping down the CIDP. I started out with IV steroids and then “tapered” to the pill form. Did an excellent job in giving me strength back.
Problem was after I stopped taking them. Major depression problems that required treatment. Truly a definition of the double edged sword. I didn’t gain weight….went crazy instead. Haha.
I think that steroids work well on CIDP, but neurologists do not consider their side effects carefully enough, nor plan for what can happen after they are discontinued.
All in all, perhaps your doctor should consider an immunosuppressant drug for a long term solution.
AnonymousJune 23, 2007 at 11:52 pm
I agree with what the others are saying. Important to find a neuro who really understands CIDP. To add to the confusion, you might ask about the experimental drug Rituxan (there are threads about it elsewhere). I am preparing to get my 3rd series of infusions. It takes 3-6 months to take effect so I was on steroids in the interim of the last series, but its effects can be more long-term.
AnonymousJune 25, 2007 at 7:45 am
On Friday, I helped my neice move and while I didnt really do alot of heavy lifting, I paid for it. We were moving her until 2am. I was up nearly 24 hours. Saturday was yet another busy day of being in the heat and going non stop. Yesterday, I couldnt get off the couch. I DONT like this.
I havent had pain in a while but am starting with the “moving aches”. It hurts in one spot and then moves to another.
When I was first diagnosed I called another neuro’s office. I was told to gather all of my records and send them in and the dr’s would look them over and decide…yes, decide…if they want to take my case.
I never followed through.
I’m weaning the roids…from 90 to 60 to 45 to 30 to 25, 20, 10 and then five.
It will take a while.
I’m going to see about another opinion or call for the ivig request.
Thinking about it now…he said I there was mild worsening since my last exam…4 weeks prior. It DOESNT make sense to stop everything. I thought maybe we’d stop to see what happens. Not a good thing, eh ?
thanks guys. I’ll keep you posted.
AnonymousJune 25, 2007 at 4:46 pm
Your Northernmost neighbor in NE Hi Stacey, I too am coming down off the roid Prednisone, very carefully decreasing. I am also awaiting “approval” to see a Dakota Dunes Neuro who is taking appointments at the Yankton clinic. I cant believe, I am a diagnoised patient either with GBS or CIDP (Icant get a straight answer) that I just cant get an appointment at the same clinic I have been doctoring with since April 06. I have not seen a DECENT Neuro since Dr.. King left in Dec. 06. I have tried two–one in Sioux Falls and one in Norfolk, not a good thing!!!
I have found a good Primary care Dr. who is getting me off the roids and off Cellcept, but he and I agree I need a neurologist.
You probably need to rest up to feel better. We have been taking our boat out (it has wheelchair doors) and I get tired just running around the river on it. Heat “helps” alot, of course. Keep shopping for a Dr. if you keep feeling worse. Take care, Regina
AnonymousJune 26, 2007 at 7:47 am
Why is it so hard to find good doctors ??????? I really do like the neuro I have. I dont like my primary….but I never really see him.
I’m just going one day at a time right now. Nothing is any worse. Not that i can tell….except, of course, the HUMIDITY.
take care all.
AnonymousJuly 20, 2007 at 12:42 pm
Regina, how did your appt go ?
We just got back from a vacation in good ol Burwell, NE. Not much of a town…being that I’m from a big city…but they have Calamus lake resovoir and we spend the days on the lake boating and wave runners, etc.
It was so nice to get away.
I am down to 30 mg every other day on the roids…feeling MUCH better mentally. Not alot of changes physically…might even be wiggling my toes a bit more on the left…still cannot spread them apart at all on either foot.
I am going to a physio med/rehab dr on the 30th.
Maybe I CAN go off all meds. Maybe this has burned itself out ? The vacation was great but each day I was more worn out and it was harder this year than it was last. But, I’m ok.
I dont know what to think anymore.
Hope all is well.
AnonymousJuly 20, 2007 at 12:54 pm
With your situation deteriorating, you can’t afford to wait until December to see what happens. My neurologist has decreased my treatments from every 3 weeks, to every 4 weeks then to every 6 weeks and now every 8 weeks. All along, my family doctor has monitored progress weekly to make sure there is no deterioration. Now my neurologist wants to see me monthly as well, getting ready to get off the treatments of IVIG all together. He has indicated that the first sign of going the wrong direction, I’ll be on the IVIG pronto because it can set things back substantially.
I hope this helps.
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