I'm frustrated and depressed because I'm at the end of the taper of methylprednisolone treatment and I still in pain, I'm getting weaker. My doc upped the dosage to 6mg from 4 every other day, but I see no difference. I've asked for water therapy, but so far no luck there. Tried land therapy, but I was so depleted by the end of the warm up, it didn't accomplish much.
Any thoughts are welcome. Is this as good as it gets, so deal with it?
No, it gets better for sure by letting your neuro know this plan isn't working. If he doesn't listen find a better one. Managing health care is easier than managing the complications from this disease. There are so many treatment plans before considering to just deal with it. Time counts though. It takes time for appointments, insurance approvals and even for the meds to kick in. Be careful not to over do activity until you are sure that the condition is stable. I found that the harder things became the stronger I became. Fly into it. Your Queen Bee.
Thanks, Mabes. I have a hard time telling a doctor he's basically doing the wrong thing, but you are right, I need to tell him this isn't working. I just lost my wonderful primary doctor too and that doesn't help. She was wonderful. I meet with a new primary doctor in October. I'll muster up courage to call my neuro again.
I try not to overdo, but usually already have by the time I realize it!
mabes said:
No, it gets better for sure by letting your neuro know this plan isn't working. If he doesn't listen find a better one. Managing health care is easier than managing the complications from this disease. There are so many treatment plans before considering to just deal with it. Time counts though. It takes time for appointments, insurance approvals and even for the meds to kick in. Be careful not to over do activity until you are sure that the condition is stable. I found that the harder things became the stronger I became. Fly into it. Your Queen Bee.
I know how you feel. You wouldn't be criticizing your doctor at all. He really has no idea that you are slipping. I would call his nurse and leave a message. I would say, "I am loosing ground and I am afraid to wait for my next appointment to tell him." Your doctor will definitely understand because this is common with our disease. It takes a lot of tweeking before we find the right treatment. He knows this already. Just so you know in reference to your dosage, I was on 1000 mgs per week for months. That's extreme but you have a lot of wiggle room.
I know it is a powerful drug, but 4 or 6 mg every other day is miniscule. Exactly one year ago this weekend, I was coming back to a Chicago hospital (checked in there on July 2) from Mayo Clinic. That was where I got my diagnosis of CIDP. At that point I was completely helpless - unable to even twitch from the neck down. The Chicago hospital had tried a few doses of IVIG with no response. At Mayo, I had 7 plasma pheresis treatment, every other day. Then, they started me on an iv drip of 1000mg prednisone/day. Back in Chicago, we started tapering down the prednisone, but added 2000mg/ day of cellcept which I am still on. Now the prednisone is down to 20 mg /day.
My case was unusually fast and completely debilitating, but the plasma pheresis and the two drugs, cellcept and prednisone, started showing an effect almost right away. Back at the Chicago hospital, I started getting twitches, then movement. Several looonnggg months of the hardest physical exertion I have ever been through ( including HS football, ha ha) and I was on my way back.
Maybe the doc needs to consider drastically upping the dosage and maybe adding cellcept???
Best of luck. And stay on those docs. Their golf game can wait.
WOW!
Jeff said:
I know it is a powerful drug, but 4 or 6 mg every other day is miniscule. Exactly one year ago this weekend, I was coming back to a Chicago hospital (checked in there on July 2) from Mayo Clinic. That was where I got my diagnosis of CIDP. At that point I was completely helpless - unable to even twitch from the neck down. The Chicago hospital had tried a few doses of IVIG with no response. At Mayo, I had 7 plasma pheresis treatment, every other day. Then, they started me on an iv drip of 1000mg prednisone/day. Back in Chicago, we started tapering down the prednisone, but added 2000mg/ day of cellcept which I am still on. Now the prednisone is down to 20 mg /day.
My case was unusually fast and completely debilitating, but the plasma pheresis and the two drugs, cellcept and prednisone, started showing an effect almost right away. Back at the Chicago hospital, I started getting twitches, then movement. Several looonnggg months of the hardest physical exertion I have ever been through ( including HS football, ha ha) and I was on my way back.
Maybe the doc needs to consider drastically upping the dosage and maybe adding cellcept???
Best of luck. And stay on those docs. Their golf game can wait.
I called my neuro's nurse, actually used Mabes words!!! I have an appt with him this afternoon. I'll ask about cellcept and the plasma therapy. My son donates plasma every week--maybe I should take some of his!
I met with a water physical therapist today and will start that on Wednesday, two days per week. That I had to 'fight' for. So even tho it is technically for my arthritic knee, the therapists are all aware that it's really for the CIDP and balance and strength issues.
I feel so encouraged, maybe because I just don't feel alone with CIDP anymore. There are others out there. Thanks!
Good for you! This will make all the difference. The water helps me most of all.
I went back to my neuro doc. He's ordered a bunch more blood work and MRI of my spine and brain. He said the neuropathy is under control and getting better, but the balance and tremor issues are Parkinsons-like. He's not saying I have parkinsons, but something else is definiately going on. I told him who my new primary is and he lit up like a Christmas tree! (He's usually pretty 'flat line/non-chatty) Said as far as he's concerned, she's the star of the Internal Med. depart.
I guess I just feel good having 'taken more control' of my health management, regardless of the outcome.