October 10, 2010 at 9:49 pm
Yeah–i am in the process of coming off the steroids right now–thank god! didnt do much for me, caused wt.loss, irritibility, and weakness–I guess the prednisone affected the potassium level in me, lots of cramping,twitching–cant wait to get off it completely-down from 50mg to 20 right now. Guess i’ll be sticking with just the ivig for now. So now probably after many hours of researching cidp you will switch to cmt:( I think the other members who were diagnosed with both cidp and cmt were right around pg 4 or 5 on here if your’e interested in seeing what info they may have. LoriOctober 10, 2010 at 8:37 pm
Hi Dave-you have definitelt been through a lot!! No I dont suspect cmt–pretty positive about the cidp diagnosis, in my case I was fortunate enough ( if any of us can consider this crap fortunate) that they actually found an antibody in my blood that is causing the cidp (to potassium) so along with using how i am feeling and my strength they are also able to test for increase or decrease in the antibody to see how treatments are working—which after 1 year of ivig every 12 weeks did not change: ( I was reading through some older posts on here and saw that there were some members who are diagnosed with both cidp and cmt??? I was glad that there is at least a genetic test that they can do to tell that it is DEFINITELY cmt, sorry that you have cmt. Where it is hereditary you would think it would start as a child or during developing years–not adulthood?? LoriOctober 10, 2010 at 3:41 pm
sorry for all you have been through 🙁 I always wondered how Dr.s can tell the difference from cidp and cmt because a lot of the syptoms sound the same?? can they determine that from the emg tests or do they narrow it down throught genetic information?? Did they try various cidp treatments that were unsuccessful before saying it was cmt?? I am by no means a dr.–but would just hate to see anybody not get possible treatment because it’s been diagnosed as cmt. Is there treatment for cmt where its hereditary? i apologize for not knowing a lot about it—just be sure this isnt a way for your insurance company to not have to pay for ivig!!! best of luck. LoriOctober 10, 2010 at 3:14 pm
its nice to read the posts of others experiences before doing them myself–have ben following your posts. I am currently coming off the prednisone –which did nothing for me and am increasing my ivig treatments to every six weeks for 6 treatments. If this is not successful then will try pe–so I am a few steps behind you on the treatments. Wishing you success with your current one : ) LoriOctober 10, 2010 at 3:07 pm
[QUOTE=Dawn Kevies mom]Hi laurel,
Nice to hear or should I say read from you!! Some studies as well as at the Chicago sympos. suggest frequency is more important than quantity. If you think about it, it makes sense because it keeps the titers more balanced. We did go down by 10 g every period. Currently, we get a maint. dose, which is half of a load, every month, but we split it. So we get 35 grams one day every 2 weeks. As usual, we are sick, so we are causing an immune response, therefore using the ivig faster, so I think we may need a load in between. Contemplating this. I am also going to ask about adding low dose naltrexone, so many readings about its benefits with ms. There is a new study that usues albuterol to put ms into remission too!! Looking into that. Anyway, off topic, sorry! Good luck![/QUOTE]
I myself am going to ask about LDN on thursday when i go back to the lahey clinic. Ive been dooing a lot of reseaerch on it and it seems to be working for a numerous amount of auto-immune conditions in the dose of 4.5 mg. Am curious as to what the response was when you asked—keep us posted. I’ll post what i find out on thurs. about it. LoriOctober 10, 2010 at 2:54 pm
How do you not think about the disease or what it has done to you? I am 7 years into this and I miss walking in the woods I miss running I miss being able to stand without wobbling.
Is it that we are to change our delight levels? The fatigue is overwhelming, the pain never ending, and those not the physical disability is what makes our lives screwed.
I very much miss a day out with my wife of walking and shopping and just life.
So I am happy you do not think about it but as I lose more and more it is pretty hard not too[/QUOTE]
yeah–im right there with you Dieno–how can anyone NOT think about it–I think EVERY single day of how this cidp **** has ruined my life. walking –which used to come so natural is now a chore, skiing, waterskiing hiking etc are all just dreams now, as a former track competiter, exercise instructor, military person, and coach of various kids sports this HAS taken away my life—to be honest i would have rather been hit in the head by a stray bullet than be slowly dying on the inside with cidp!!!! my only hope that there will be a cure for it soon or one of these treatments will eventually work.October 1, 2010 at 12:00 pm
there’s lots of info on the web of using ALA for the neuropathy—many places use it in the doses you were describing for that. I personally did not notice a difference with it….but this is a strange disease and different stuff works for different people : )September 6, 2010 at 10:31 pm
hope youre feeling better now with the ivig—dont ever feel bad about venting!!!! keeps us sane. This is a horrible disease–comes on unexpected–its not like its well known, so nobody has a clue what it is all about—i feel like its taken everything too–i used to ski all winter, run 5 miles a day, teach exercise classes at a local gym. coach all my kids elementary and town sports, play all sports, aced the military pt test while ennlisted —and now i feel like im walking at snail pace and couldnt run if i had to!!!!!!! i try not to complain because i know there are people worse off than i am—-but i think we all have those days when we wonder why we were the ones that had to get this horrible disease and its hard not to get angry about it. LoriSeptember 6, 2010 at 10:18 pm
thank you for the info–yes i do keep notes of strenghth and fatigue—definitely helps. At this time the cidp has only affected my calves and ankles so i base it on walking difficulty and exercise tolerance mostly.—–im jealous Roland –you can stand on your toes and heels–lol thats what my neuro told me to try each day to test for strenght returning while on the pred—but she said to give it 2-3 months..so im holding out hope… Did a little research on the pred, i think my weakness may have been metabolic—upped my potassium intake and feel a lot better. makes sense cuz even though i was feeling weak–i hadn’t lost any measurable strength???? thanks to all–i appreciate the imput–especially senior menbers who have been at this for a while–i appreciate all you have to offer from your own experiences : ) LoriSeptember 5, 2010 at 1:23 pm
im coming up on the 1 month–monday for the steroids. Actually ,walking has been harder since on them, more weakness and more numbness?? I havent called dr and have been sticking with them because she DID tell me it would take a few months to determine if they’re going to work. I had already been doing the ivig every 12 weeks for the past year. no worsening and very slight improvement–steroids added to see if they would give the ivig a boost? Dont mind dealing with this increase in weakness if i knew it was just the prednisone doing its thing and once i get off it i’ll be stronger or better–but no way of knowing i guess until i let it run its coarse…..whatever dont kill us will make us stronger–so they say–BUT lol ,thats what i’m afreaid of. nice to hear from you—your’e doing 3 months on the steroids too–right? I’ve read through a lot of archive posts and weakness from prednisone did seem to happen often—-i just could never seem to find posts that talked about what happened after the trial–did the strength improve to where it was prior –better–or worse case scenerio–stay weak like while taking the prednisone. If i find any more info on this i’ll keep you posted..hang in there : ) LoriAugust 30, 2010 at 9:42 pm
yes i too have been told that it takes a long time for the nerves to regenerate–especially the ones in the feet. I just find it difficult to determine when they’re tingling etc after a treatment if they’re regenerating or degenerating–I think the reversal process can be like the damaging process??? LoriAugust 29, 2010 at 9:06 pm
Loved your post—new member so i’m not familiar with what you went through to get where you are—but glad the pe worked—success stories are a great inspiration!!!they give us hope 🙂August 29, 2010 at 9:00 pm
i hear you and agree!!! but keep fighting–keep researching and bring that research with you to your dr’s, We are just one of the many patients they see in a day–so take advantage of that time–have a plan of things you researched and wonder if you should try–get ideas from others here. I find that at least with a plan of action and knowing if that doesnt work –you’ll go onto the next plan. that gives HOPE and hope and determination keep us going. hey— but it’s still okay to vent and wonder why in the world we had to get this crap!!August 29, 2010 at 7:54 pm
yes i too exercise with free weights–i like it because it is a very measurable way to tell if im losing strength or not.
My hands or arms have not been affected by the cidp just my legs—feet and calves. my quadriceps did not feel weak until the start of the prednisone–which i guess can be a side effect of that and goes away after its stopped??? like you i did feel very “wired” on the first few weeks of starting the pred. I started it on aug 6th so i’ll be coming on my one month mark soon!! its a strange feeling to be internally feeling wired and energetic but to physically feel weaker. My goal is to just get through 2 or 3 months with it so I can make a justifiable decision with my dr as to whether or not it worked–im keeping a journal with very measurable stuff–like still cant stand on tippy toes or heels etc.. things that mainly deal with strength changes since that was the reason for trying it. Havent heard much about the cellcept you mentioned–is that another type of steroid? do you have any idea what your cidp is being caused by? I do have that info which i guess is good because its another way for them to be able to tell if something is working–if the % of antibodies is increasing or decreasing.August 26, 2010 at 12:09 pm
i think the hardest part of cidp is that everyone who knew us how we were when we felt good just dont get it!!! I find thats been the hardest part—saying “im not up to that today” when you’ve always been active then in a short period of time the cidp takes it all away–its hard enough for us to adapt to–but then for everyone to just expect us to go on like nothings different–IT’S HARD—my thoughts are with you jojo. Lori