Improvements with prednisone only?

Hi all! I was diagnosed with CIDP at the end of June and had 4 rounds of IVIG. I thought I saw small improvements after the second round but my neuro said my ankles and legs are weaker now despite improvements in my upper body.
I’m now on day 7 of 60 mg of prednisone/day. I don’t think my neuro wants to try IVIG again until he knows if the steroids are helping.
I realize everyone reacts differently to different treatments and this disease in general but I’m curious to know if any of you noticed improvements with prednisone and if so how long before you noticed any changes (despite side effects). I’ve searched and read some posts but am still curious to hear your experiences.
I felt like he numbness in my legs was subsiding the first 4 days or so but now seems to be right back where I was.

Giving up at "4 rounds of IVIg" might be premature. Depends what you mean by "4 rounds". When I was diagnosed in May I had 5 treatments of IVIg in 5 days and once every 4 weeks since. I am not "cured" BUT there was initial improvement and I feel that I am stabilized - not getting worse. I have real problems with my legs, balance and endurance but luckily I was diagnosed reasonably early so am no where near as "bad" as some do get before diagnosis.


Knowing the side effects of prednisone I wonder why anyone would deliberately choose that path - not that IVIg is always free of problems, some have real problems, but personally - I choose a little headache and slight nausea for an hour or two any day. My last treatment yesterday - I really did not feel any adverse reaction - so a nice red wine to celebrate!

My understanding of standard CIDP is that major or late stage damage to the nerves can not be repaired but early stage damage can, and that fits well with what I have experienced and what my neuro has advised to expect. Some very lucky people do get markedly better but I have found out from physios that you can loose a LOT of nerve conduction before it becomes subjectively obvious. I expect those who "think" they are "better" as those who have not lost a lot to start and are "repaired" back to that level where all appears OK. I can relate to that because the neuro says my arms have nerve conduction impairment BUT I do not perceive any problem with my arms. My arms are probably my "canary in the mine" because if they go bad then I know things are going bad. So far so good!

I was diagnosed with CIDP just over a year ago and got five rounds of IVIG right away with follow up treatments every month after for three months. It helped a lot at first and then not so much and made me feel so sick for a few days after like I had come down with a really bad flu. So then I had to wait six months for a second opinion. While waiting my neuro gave me 50 mgs of prednisone five days in a row so I could keep working while I was waiting. BOY! That made me feel like I was 40 again. Pretty froggy, lol. But then again it would wear off and I would beg for some more. We did this five times like for five months. Then my PCP would not go along with it any more. My second opinion didn't tell me anything new. So my nero wanted to do a spinal tap which failed because for me it was just too painful. He said that may have been because of so much arthritis in my back made it that way for me. So that didn't tell us anything. I had to give up my job, just could not do it any more. Any ways,,,,, My self and my neuro talked my PCP into giving me some prednisone for long term. My PCP agreed to let me have just 10 mgs every other day only. He said that the long term effects should not be such a problem this way.

It has helped me out some. Still can't work. But can do more than before. Guess this is what I am going to settle for, for now.

I am 61 and have been dealing with this for many years before the Dr.'s caught on. It took one visit to a foot Dr. to catch on and finally send me to a neurologist to be diagnosed.

So yes, the prednisone helps. It is not a cure but it calms down my immune system just enough so I can atleast do my housework and go walk some. Still if I over do it, it still takes me two or three days to recover.

I have to learn where that fine line is. I feel that, that is just how it is and just have to live with it. I have no job, no health insurance so I will take the prednisone. It is inexpensive and yes it works for me. I just don't want to over do it with the prednisone and end up with other problems too soon.

I guess I have no other choice.

Best of luck to you.

Awasos

My suggestion is to stay with the IVIg longer and decrease the pred as soon as possible. After being on pred for almost 2 years now I am really ready to be off of it but I am only at 2.5mg per day and haven't been able to go to even every other day yet without feeling so very weak. Prednisone "acts" as your adrenaline and therefore your own adrenal glands stop working (they get lazy). When you decrease pred, your adrenals have to "remember" how to work again. If you are on pred too long, they sometimes will not remember how to work when you want to get off and you would have to be on it indefinitely. And, there are VERY MANY negative reactions to prednisone, especially on so high a dose as you are currently on. You should probably be on IVIg about every 3 weeks with very small dose of pred.

The reason I can get off the pred now is that in April of this year, I had a stem cell (my own) transplant, and my CIDP symptoms are gone! I'm still on a small dose of prednisone because I got a rash all over my body after the transplant from one of the meds and prednisone helped get rid of the rash. But, I'm still having a tough time getting off it altogether. Please try to get your neuro to go with IVIg more often rather than that high a dose of pred. You will see this is what most docs and people will recommend (as long as IVIg works for you).

Then when you have done both of those treatments and still are experiencing symptoms, if you want to know more about the transplant, go to clinicaltrials.gov and search for "CIDP and Chicago" for Dr Richard K Burt's procedure (only one in USA). My blog telling about it is: wendyssct.blogspot.com

Prednisone is what caused my symptoms to explode and travel throughout my body. This is what confused all the doctors who diagnosed me with GBS. But after a year, the diagnosis was changed to CIDP. I havent let them try steroids since that major attack.

Hi Michael,

I had my loading dose of 5 days in the hospital and then 3 additional treatements (each over 2 days) about 3-4 weeks following. Fortunately, I only had headaches with the IVIG. I didn't think I was getting worse but I guess it was difficult for me to tell. A couple months ago I was told there was some improvement in my legs and then a couple weeks ago was told otherwise.

I'm willing to try ANYTHING to get a little better (although I keep telling myself it could be worse). The only thing I've noticed on the Predisone so far is that I can't seem to sleep much. This makes me think that's why I don't seem to be improving much.

I can say I don't think I've gotten any worse than I was when I was diagnosed.

Glad you got to celebrate!

Thanks for your reply and hang in there!


Michael C Stark said:

Giving up at "4 rounds of IVIg" might be premature. Depends what you mean by "4 rounds". When I was diagnosed in May I had 5 treatments of IVIg in 5 days and once every 4 weeks since. I am not "cured" BUT there was initial improvement and I feel that I am stabilized - not getting worse. I have real problems with my legs, balance and endurance but luckily I was diagnosed reasonably early so am no where near as "bad" as some do get before diagnosis.


Knowing the side effects of prednisone I wonder why anyone would deliberately choose that path - not that IVIg is always free of problems, some have real problems, but personally - I choose a little headache and slight nausea for an hour or two any day. My last treatment yesterday - I really did not feel any adverse reaction - so a nice red wine to celebrate!

My understanding of standard CIDP is that major or late stage damage to the nerves can not be repaired but early stage damage can, and that fits well with what I have experienced and what my neuro has advised to expect. Some very lucky people do get markedly better but I have found out from physios that you can loose a LOT of nerve conduction before it becomes subjectively obvious. I expect those who "think" they are "better" as those who have not lost a lot to start and are "repaired" back to that level where all appears OK. I can relate to that because the neuro says my arms have nerve conduction impairment BUT I do not perceive any problem with my arms. My arms are probably my "canary in the mine" because if they go bad then I know things are going bad. So far so good!

Hi Awasos

Thanks for your reply. I'm hoping to see improvements sooner than later!

I think one of the biggest challenges with this disease has been accepting the 'new normal'. I know I've been struggling with that myself.

I am 31 and was promoted right after I was diagnosed and was pushing myself with the new job responsibilities while managing my health. I am now on leave because I was not able to focus on my health and accept my 'new normal' AND deal with my new job all at the same time. It was just too many adjustments for me to handle all at once. Trying to juggle doctor's appointments, speech and physical therapy appointments and treatments on top of work and life took a lot out of me mentally and physically. I thought I could do it all. I hope to accept my 'new normal' sooner than later.

I agree that there is a fine line which can be difficult to find (I'm still trying to find it!)

Good luck to you as well!

Awasos said:

I was diagnosed with CIDP just over a year ago and got five rounds of IVIG right away with follow up treatments every month after for three months. It helped a lot at first and then not so much and made me feel so sick for a few days after like I had come down with a really bad flu. So then I had to wait six months for a second opinion. While waiting my neuro gave me 50 mgs of prednisone five days in a row so I could keep working while I was waiting. BOY! That made me feel like I was 40 again. Pretty froggy, lol. But then again it would wear off and I would beg for some more. We did this five times like for five months. Then my PCP would not go along with it any more. My second opinion didn't tell me anything new. So my nero wanted to do a spinal tap which failed because for me it was just too painful. He said that may have been because of so much arthritis in my back made it that way for me. So that didn't tell us anything. I had to give up my job, just could not do it any more. Any ways,,,,, My self and my neuro talked my PCP into giving me some prednisone for long term. My PCP agreed to let me have just 10 mgs every other day only. He said that the long term effects should not be such a problem this way.

It has helped me out some. Still can't work. But can do more than before. Guess this is what I am going to settle for, for now.

I am 61 and have been dealing with this for many years before the Dr.'s caught on. It took one visit to a foot Dr. to catch on and finally send me to a neurologist to be diagnosed.

So yes, the prednisone helps. It is not a cure but it calms down my immune system just enough so I can atleast do my housework and go walk some. Still if I over do it, it still takes me two or three days to recover.

I have to learn where that fine line is. I feel that, that is just how it is and just have to live with it. I have no job, no health insurance so I will take the prednisone. It is inexpensive and yes it works for me. I just don't want to over do it with the prednisone and end up with other problems too soon.

I guess I have no other choice.

Best of luck to you.

Awasos

Thanks, Wendy. I think my neuro is trying to have a 'control group' to see what will help and not help. I only have a 30 day presciption so I'm sure he'll reevaluate then and try to figure out the next best steps.

I hadn't really thought about about the adrenaline aspect of the Prednisone but that's good to keep in mind.

I've read a bit about the stem cell transplant and it's quite interesting. I will be looking into it more as time passes. This is all still really new to me. It will be interesting to read your blog.

Good luck and I hope we all get better soon!



Wendy said:

My suggestion is to stay with the IVIg longer and decrease the pred as soon as possible. After being on pred for almost 2 years now I am really ready to be off of it but I am only at 2.5mg per day and haven't been able to go to even every other day yet without feeling so very weak. Prednisone "acts" as your adrenaline and therefore your own adrenal glands stop working (they get lazy). When you decrease pred, your adrenals have to "remember" how to work again. If you are on pred too long, they sometimes will not remember how to work when you want to get off and you would have to be on it indefinitely. And, there are VERY MANY negative reactions to prednisone, especially on so high a dose as you are currently on. You should probably be on IVIg about every 3 weeks with very small dose of pred.

The reason I can get off the pred now is that in April of this year, I had a stem cell (my own) transplant, and my CIDP symptoms are gone! I'm still on a small dose of prednisone because I got a rash all over my body after the transplant from one of the meds and prednisone helped get rid of the rash. But, I'm still having a tough time getting off it altogether. Please try to get your neuro to go with IVIg more often rather than that high a dose of pred. You will see this is what most docs and people will recommend (as long as IVIg works for you).

Then when you have done both of those treatments and still are experiencing symptoms, if you want to know more about the transplant, go to clinicaltrials.gov and search for "CIDP and Chicago" for Dr Richard K Burt's procedure (only one in USA). My blog telling about it is: wendyssct.blogspot.com

If there are any further questions you have about the SCT, feel free to contact me. I love to "pay it forward" and believe SCT are THE answer right now to those who are able to have it done. Anyone who wants info, I have a lot to share, web sites, FB pages, notes and helpful hints when accepted. Contact me at my e mail: ■■■■■■■■■■■■■■■■■■■■ - I mean this to anyone who wants to know more about SCT!

Wendy

Jmlz said:

Thanks, Wendy. I think my neuro is trying to have a 'control group' to see what will help and not help. I only have a 30 day presciption so I'm sure he'll reevaluate then and try to figure out the next best steps.

I hadn't really thought about about the adrenaline aspect of the Prednisone but that's good to keep in mind.

I've read a bit about the stem cell transplant and it's quite interesting. I will be looking into it more as time passes. This is all still really new to me. It will be interesting to read your blog.

Good luck and I hope we all get better soon!



Wendy said:

My suggestion is to stay with the IVIg longer and decrease the pred as soon as possible. After being on pred for almost 2 years now I am really ready to be off of it but I am only at 2.5mg per day and haven't been able to go to even every other day yet without feeling so very weak. Prednisone "acts" as your adrenaline and therefore your own adrenal glands stop working (they get lazy). When you decrease pred, your adrenals have to "remember" how to work again. If you are on pred too long, they sometimes will not remember how to work when you want to get off and you would have to be on it indefinitely. And, there are VERY MANY negative reactions to prednisone, especially on so high a dose as you are currently on. You should probably be on IVIg about every 3 weeks with very small dose of pred.

The reason I can get off the pred now is that in April of this year, I had a stem cell (my own) transplant, and my CIDP symptoms are gone! I'm still on a small dose of prednisone because I got a rash all over my body after the transplant from one of the meds and prednisone helped get rid of the rash. But, I'm still having a tough time getting off it altogether. Please try to get your neuro to go with IVIg more often rather than that high a dose of pred. You will see this is what most docs and people will recommend (as long as IVIg works for you).

Then when you have done both of those treatments and still are experiencing symptoms, if you want to know more about the transplant, go to clinicaltrials.gov and search for "CIDP and Chicago" for Dr Richard K Burt's procedure (only one in USA). My blog telling about it is: wendyssct.blogspot.com

When I was first diagnosed 2 years ago, they placed me on daily regimen of 60mg of prednisone. I too had had a 5 day regimen of IVIG and 5 weeks after being paralyzed I was snowmobiling. Felt like a new man, joined the gym and started a new lifestyle. Unfortunately the prednisone itself was not enough, I began to weaken and within 3 months I was unable to lift my legs and was started on a monthly schedule of 5day IVIG infusions. I continued the 60mg of steroids, gained 60lbs despite my daily workouts and lap pool exercises. After 5 months I became steroid induced type II Insulin dependent Diabetic. My doctors immediately tapered down and stopped the steroids and I have been off them since.

Good luck, seems everyone responds a little different.

I felt worse after 2 rounds of IVIG. My neurologist held the second round for a week while repeating EMG/NCS. These studies showed major improvement after treatment, and I am in the middle of my 3rd round now.

I think than I (and probably many of us) become severely deconditioned very quickly, and no IVIG or any other treatment will help with that- only a light, gradually progressive physical conditioning program. It would be great for your neurologist to repeat the NCS/EMGsto see if the nerve responses have changed. If they improved, bite the bullet and do the IVIG, while doing a supervised conditioning program in between treatments (it is hard for someof us to do much but lay around when starting IVIG therapy). Good luck- hope things are improved.

My neurologist has wanted to put me on steroids while keeping me on the IVig treatment every other week. I don't want the side effects from steroids and from what I have heard, once you stop the steroids your symptoms will reappear. I am tired after my infusions, a little nausea with headaches also. This only lasts for 1-2 days then I am off and running. (maybe not running, but at least not falling) Everyone has their own personal physical limits, but I have found stretching is very important to my being active. I am pretty sure I have permanent nerve damage in my legs but there is still plenty I can do and I am thankful for that. Learning how much you can do before the pain rears its ugly head is a process. Good thoughts to you!

hi there I was diagnosed in oct 2007 with gbs and was hospitalized at the end of october 2007 I had 5 ivig injections when I was in hosptal for 77 days most of that time in icu but the nuero fellow also had me on predisone when I left the hospital in january of 2008 I was on a treatment of predisone for almost 2 years the doses I cant remember but I toke some in the morning and then at night, I never recieved ivig again after the hospital, I was told that I was a miracle that I should have never walked out of the hospital...today I still have residuals from cidp and can no longer work.. I dont know how or why the treatments are different for some than others...I have been to.d that ivig is good for gbs and not cidp so thats my story and I did have side effects from the steriods but to my reply is that I am alive and walking and talking hope this helps and like we all say each one of us are different

To see results of treatments see http://mycidp.blogspot.com.au/

Thanks Wendy! That’s very kind of you! Glad to hear you’re doing so well!



Wendy said:

If there are any further questions you have about the SCT, feel free to contact me. I love to "pay it forward" and believe SCT are THE answer right now to those who are able to have it done. Anyone who wants info, I have a lot to share, web sites, FB pages, notes and helpful hints when accepted. Contact me at my e mail: ■■■■■■■■■■■■■■■■■■■■ - I mean this to anyone who wants to know more about SCT!

Wendy

Jmlz said:

Thanks, Wendy. I think my neuro is trying to have a 'control group' to see what will help and not help. I only have a 30 day presciption so I'm sure he'll reevaluate then and try to figure out the next best steps.

I hadn't really thought about about the adrenaline aspect of the Prednisone but that's good to keep in mind.

I've read a bit about the stem cell transplant and it's quite interesting. I will be looking into it more as time passes. This is all still really new to me. It will be interesting to read your blog.

Good luck and I hope we all get better soon!



Wendy said:

My suggestion is to stay with the IVIg longer and decrease the pred as soon as possible. After being on pred for almost 2 years now I am really ready to be off of it but I am only at 2.5mg per day and haven't been able to go to even every other day yet without feeling so very weak. Prednisone "acts" as your adrenaline and therefore your own adrenal glands stop working (they get lazy). When you decrease pred, your adrenals have to "remember" how to work again. If you are on pred too long, they sometimes will not remember how to work when you want to get off and you would have to be on it indefinitely. And, there are VERY MANY negative reactions to prednisone, especially on so high a dose as you are currently on. You should probably be on IVIg about every 3 weeks with very small dose of pred.

The reason I can get off the pred now is that in April of this year, I had a stem cell (my own) transplant, and my CIDP symptoms are gone! I'm still on a small dose of prednisone because I got a rash all over my body after the transplant from one of the meds and prednisone helped get rid of the rash. But, I'm still having a tough time getting off it altogether. Please try to get your neuro to go with IVIg more often rather than that high a dose of pred. You will see this is what most docs and people will recommend (as long as IVIg works for you).

Then when you have done both of those treatments and still are experiencing symptoms, if you want to know more about the transplant, go to clinicaltrials.gov and search for "CIDP and Chicago" for Dr Richard K Burt's procedure (only one in USA). My blog telling about it is: wendyssct.blogspot.com

Thanks! Glad to hear you had some improvement! I hope you continue to improve!

I agree everyone seems to b
Respond differently to bigots the disease and treatments.

Good luck!



Spelcheker said:

When I was first diagnosed 2 years ago, they placed me on daily regimen of 60mg of prednisone. I too had had a 5 day regimen of IVIG and 5 weeks after being paralyzed I was snowmobiling. Felt like a new man, joined the gym and started a new lifestyle. Unfortunately the prednisone itself was not enough, I began to weaken and within 3 months I was unable to lift my legs and was started on a monthly schedule of 5day IVIG infusions. I continued the 60mg of steroids, gained 60lbs despite my daily workouts and lap pool exercises. After 5 months I became steroid induced type II Insulin dependent Diabetic. My doctors immediately tapered down and stopped the steroids and I have been off them since.

Good luck, seems everyone responds a little different.

I agree. I should see if a nerve conduction study shies any improvements. I feel like that’s the only way to see if I’m getting any better. I find ther seem to be so many factors that can make it seem like there are setbacks when there probably aren’t.

I have been I physical therapy for about a month and a half now and have improved a bit in that respect. We are going to focus more on strength as opposed to balance for the next few weeks. I definitely think its been helping slowly but surely!

Glad to hear you’ve improved! Best of luck to you!



Mayberry said:

I felt worse after 2 rounds of IVIG. My neurologist held the second round for a week while repeating EMG/NCS. These studies showed major improvement after treatment, and I am in the middle of my 3rd round now.

I think than I (and probably many of us) become severely deconditioned very quickly, and no IVIG or any other treatment will help with that- only a light, gradually progressive physical conditioning program. It would be great for your neurologist to repeat the NCS/EMGsto see if the nerve responses have changed. If they improved, bite the bullet and do the IVIG, while doing a supervised conditioning program in between treatments (it is hard for someof us to do much but lay around when starting IVIG therapy). Good luck- hope things are improved.

That’s interesting to know.

IVIG has its ups and downs. I would get headaches even when i tried to hydrate but no nausea. and the amount of time it takes can take a lot out of you.

I think I probably also have permanent damage to my legs but not really sure. Seems like the doctors don’t really want to discourage me or scare me.

Learning my limits will certainly be a continued challenge for me.

Thanks and good luck to you!



A nancy said:

My neurologist has wanted to put me on steroids while keeping me on the IVig treatment every other week. I don't want the side effects from steroids and from what I have heard, once you stop the steroids your symptoms will reappear. I am tired after my infusions, a little nausea with headaches also. This only lasts for 1-2 days then I am off and running. (maybe not running, but at least not falling) Everyone has their own personal physical limits, but I have found stretching is very important to my being active. I am pretty sure I have permanent nerve damage in my legs but there is still plenty I can do and I am thankful for that. Learning how much you can do before the pain rears its ugly head is a process. Good thoughts to you!

Glad to hear you responded well to the treatments.
Thanks for your feedback! I haven’t really had many side effects yet so I feel fortunate.



brenda said:

hi there I was diagnosed in oct 2007 with gbs and was hospitalized at the end of october 2007 I had 5 ivig injections when I was in hosptal for 77 days most of that time in icu but the nuero fellow also had me on predisone when I left the hospital in january of 2008 I was on a treatment of predisone for almost 2 years the doses I cant remember but I toke some in the morning and then at night, I never recieved ivig again after the hospital, I was told that I was a miracle that I should have never walked out of the hospital...today I still have residuals from cidp and can no longer work.. I dont know how or why the treatments are different for some than others...I have been to.d that ivig is good for gbs and not cidp so thats my story and I did have side effects from the steriods but to my reply is that I am alive and walking and talking hope this helps and like we all say each one of us are different

Great timing!! Thanks! I’ll check it out!



Michael C Stark said:

To see results of treatments see http://mycidp.blogspot.com.au/