saying goodbye to the roids.

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.

Lori

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.
Kelly

Sounds like it’s time for a second opinion even if you have to travel a bit.

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.:)

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.

Peace,

Cathy

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 😮

Hello,
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.

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.

Emily

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.

One more vote for “find another neurologist”. When you are in the active phase of the disease, your body is being damaged. You need to stop the damage as quickly as possible.

Best wishes,

Suzanne

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.
Pat

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

Hi Stacey Just wanted to tell you I got “Accepted” by the Dakota Dunes Neuro and have an appointment here in Yankton for July 11/ Just praying she is a good one. Cool day today, but the heat is coming!!!

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.

Good luck.

Paul