IVIG not working, next step Cellcept….

    • Anonymous
      January 22, 2008 at 2:21 pm

      Hello all/
      My first post here..

      Facts:

      My mother is 75 years old(living in Toronto Canada) and was walking(albeit slowly) in Aug 2007. She is now bed-ridden. She had her first infusion of IVIG Dec 14, 2007 and 2nd infusion Jan 15, 2008. There has been no improvement and a rapid deterioration since Oct 2007. Also a general weakening. She has had all the blood tests MRI, EMG, Bone Scan, Cortizone shots, etc. She is hospital at the moment until she feels stronger. At home we now have a caregiver, installed a step lift, obtained easy lift chairs, hospital bed, railings etc…..

      She has not had a spinal tap or nerve biospy.

      Her doctors are not thinking of administering Cellcept…although from what I have read this does not have any major clinical trials.

      She has very little movement in her lower torso and now needs to be moved from side to side in bed although she has all sensory feeling just no power to life her legs while lying in bed against gravity. Also inspite of the IVIg she has a global weakness 30%-40% of her body.

      From what I can see, most of the treatments from forum members post appear to be hit and miss….if IVIg is not working.

      Q1) is it recommended to try other more harmful medication given that these have risks and also aide the immume system that is attacking the body?

      Q2) Also I understand that one theory is also to destroy the entire body immunity and start again…

      As a son, just feel a sad and really bad for my Mum who is going through this and frustrated when there is no hope and these treatments are are being conducted(albeit with good intention). Just wondering if the decision to take the IVIg was not taken would this have been a better route with the acceptance of a handicap of not walking rather than now……there are probably more complications as her immunity is being weakened and who knows what other complications…..

      regards

      ashley pereira, PEng, MBA, PhD

    • January 22, 2008 at 3:05 pm

      I don’t have time at this moment for a response to cell cept or other immuno. but check out this website and it gives you a diagram of rec. treatment protocol. It is a md. sight and one of the docs is actually on the gbs foundation advisory board. Kevin has somwthing strange happening to his mouth and we are going to the doc. Here is the site cidpus or [url]www.cidpinfo.com[/url]
      Dawn

    • Anonymous
      January 22, 2008 at 3:28 pm

      Welcome to the forum! I knose several people here had to have several rounds of IVIG before they had improvement. I have had two rounds and the second they added SoluMedrol which helped. Others have tried Plasmapheresis if the IVIG didn’t work. Cellcept, from what I understand would be tried if those don’t work. Why haven’t they done an LP? I don’t know at this point if it would be helpful or not but it may be worthwhile to either find out if there is protein, or if something else is going on.

    • Anonymous
      January 22, 2008 at 5:16 pm

      Has your mother had 1 treatment (meaning 1 day) of IVIG 1 month apart? That isn’t going to cut it, if so. She needs to have a loading dose of IVIG, which is usually 2g per kg over a 3-5 day period. Then she can go on a maintenance dose of 1-2g per kg. Most people can go 4 weeks between treaments but some need them closer together.

      Usually if IVIG is not working then the dr’s will add oral Prednisone or Solumedrol. Then if that doesn’t work you go onto the “heavier” immuno-suppressants like Methotrexate then Cellcept.

      Good luck.
      Kelly

    • Anonymous
      January 22, 2008 at 5:41 pm

      Kelly:
      My mother had in each of her treatments – over 2 days 2g/kg of IVIg.
      thanks
      ashley

    • Anonymous
      January 22, 2008 at 5:42 pm

      Gabrielle:
      Thanks I will check with her physician.
      regards
      ashley

    • January 22, 2008 at 6:41 pm

      Hi,
      I am a little confused, you write that her immune system is compromised, why do you say that? With cidp, a trigger happens, say a cold or what ever and then the immune syst. turns on and fights. With cidp, it does not turn off and attacks the myelin sheath around the nerves. So it is not compromised in a weakened sense, it is kind of overactive if you will. How do they know it is cidp w/out a ncv or l/p? What makes them sure, did the emg indicate something? How long has this progressed? Ivig is the first defense for cidp, sometimes it takes a few rounds meaning a couple of loading doses. My son is 114 lbs and gets 100g over 4 days every month. 2g/kg is typical protocol. Not everyone reacts on the first loading dose, it may take another 3-5 day course. If this does not help, as Gab. mentioned, some dr.s add solumedrol, this seems to be common with members on the site as of late. Next, is pp sometimes even followed w/ ivig. If this does not work then immunosup. are introduced. This wipes out the immune system and can be risky regarding getting sick or what not. Google Cellcept to see the risks, they are high. Some NEED cell cept or other immunosup. so you have to do what you have to do. Some on the site have used these drugs and gone into full remission. I feel the risks are too high for my 11y/o. Give the ivig a try again. Have her symptoms worsened, how long has she been this way? The longer you wait and do nothing, the more damage that happens. You have much to think about and it all happens so quickly, just try to take a deep breath, be strong for your mom and come here often, there are so many nice people here who can offer so much, sometimes even more than the docs because they have already experienced it. I have learned much from this site and it has helped us through many a dark, confused day. The people listen to everything here, medical problems regarding your mother, and problems you have as a care giver. Be strong, you will get through this with your mom, and there is medicine, it sometimes just takes a while to figure out the plan!
      Dawn Kevies mom

    • Anonymous
      January 22, 2008 at 7:57 pm

      2 days of consecutive IVIG is not enough of a loading dose. She needs the full 3-5 days then maintenance doses. Some people even have 10 consecutive days of IVIG…in extreme cases.

      Kelly

    • Anonymous
      January 22, 2008 at 8:47 pm

      Hi,
      I would concur with everyone is saying that she needs the loading dose of IVIG i.e. the five days of IVIG and then a monthly regime calculated on her weight.

      My husband was diagnosed with CIDP Lewis Sumner variant last summer, and started with the above regime and has done remarkably well.

      However, the neurologist added Imuran at the beginning of December and we hadn’t done much reading at that point. He became very ill on Dec.22nd and was hospitalized. Looking at his bloodwork from the hospitalization it looks like he was sensitive to the Imuran and developed symptoms of the sensitivity within 12 days of starting the Imuran. The neurologist is waffling over what his illness was i.e. maybe Imuran sensitivity and maybe underlying infection that surfaced when his immune system was knocked out with the Imuran.

      Now she wants to start him on Cellcept, but we have a 3 month reprieve where she is keeping him on the IVIG and will reassess his response in April by re-doing his EMG and nerve conduction tests.

      Our game plan is to refuse the Cellcept due to lack of long term studies about how effective it actually is, and the possible horrendous side effects. We live in Canada too and it seems cost of IVIG is a factor in adding other drugs so quickly. If we get pushed against the wall over the cost of IVIG, we will discuss with my husband’s neurologist IV Prednisolone.

      My husband is 60 years old, and due to having CIDP undiagnosed for so many years he is not a hardy fellow. Cellcept has many side effects and I think the very young and the older population in particular needs to think carefully before accepting treatment with cytotoxic drugs. We discussed my husband’s case with our GP and she said we are well read and informed and if we are not comfortable with a treatment offered we have the right to refuse it.

      I have searched endlessly for articles on efficacy of Cellcept on treatment of CIDP and the best I have come up with is one abstract in which the authors say “that MMF(Cellcept) induced a modest benefit in 20% of their patients and stabilized patient condition, allowing reduction of steroid or IVIG therapy”. http:[url]www.neurology/org/cgi/content/abstract/63/4/715[/url]

      Dawn Kevies Mom has been very helpful with sending me lots of info. I think it is key that you do lots of reading and be an advocate for your mother. Just from our experience thus far, I would advocate for a proper protocol being followed for the IVIG before it gets ruled out. And then I would ask questions about why IV Prednisolone couldn’t be tried next before the cytotoxic drugs are used.
      Laurel

    • Anonymous
      January 22, 2008 at 8:58 pm

      Kelly:
      As I understand it, the two treatments she received were intense doses of IVIg the same you would have received over a 3-5 day period.
      regards
      ashley

    • Anonymous
      January 22, 2008 at 9:02 pm

      Laurel:

      I contacted several neurologist at the Baylor Medical School in Houston re: Cellcept and the clinical research done. It is not w/o risk. I can send these articles and add to the post tomorrow.

      The latest on my Mum is that the doctors have held on giving Cellcept until she sees her Chief Neurologist who will make the final decision.

      regards

      ashley

    • Anonymous
      January 22, 2008 at 9:13 pm

      Dawn Keives Mum:

      My mum went and undertook several tests with neuorologist and had needle pricks to determine her conduction velocity. Not sure what you mean by l/p?

      Just also an observation, cidp affects such a varied population that it would be nice to hear about cases of folks who are elderly like my mum who have been diagnosed with CIDP 65+ – 75+ years.
      thanks so much
      ashley

    • Anonymous
      January 22, 2008 at 9:39 pm

      I understand giving the 3-5 day dose over a 2 day period but sometimes that STILL is not enough. The same thing was given to my 4 year old daughter. It didn’t have the desired effect, so she received 3 more IVIG treatments 1 time a week for 3 weeks. That still did not completely repair her eye damage & she ended up needing IVIG for 5 consecutive days of 2g per kg, then IVIG every other day for 2 weeks at the same dosage & then IVIG 2 times per week for 1 week before her eye was better. Sometimes it takes more IVIG than what people think in order to see results. It depends on the individual & the extent of damage. Each person with CIDP should be treated per their specific needs, not always typical protocol.

      What I’m trying to suggest is that you speak with the neurologists and ask for a longer course of consecutive IVIG to see if that helps. If it doesn’t then you move on to the next drugs, which normally are steroids. It is EXTREMELY rare, in the US, for dr’s to go from IVIG straight to cytotoxic drugs. The possible side effects must be worth the risks to take those drugs. You’ll never truly know if they are worth it unless you try everything else before that. Cytotoxic drugs are the last line of defense in treating CIDP.

      I know you received quite a few responses from Dawn & myself. Both of our children have CIDP & we’ve both researched this disease constantly. It could be argued that mother’s of chronically ill children with rare diseases know more about the disease & treatments than the dr’s do. I’m telling you this just so you know that both Dawn & myself really do know what we’re talking about, LOL.

      Good luck to you & to your mom. I hope she starts to mend soon.

      Kelly

      PS, an l/p is a lumbar puncture also known as a spinal tap.

    • January 23, 2008 at 9:20 am

      I have Lewis-Sumner variant of CIDP,I have been on 1000mg of Cellcept twice daily for over 3 years and 60gram of IVIg treatment every 5 weeks for over a year now. I have rountine blood work done, and my doctors have been keeping an eye on me, so far no side effects from the cellcept.After trying different treatments for the last 5 plus years this has gotten the best results for me. The side effects look scarey on paperwork for most drugs, luckily I’ve had none of them.

    • Anonymous
      January 23, 2008 at 11:46 am

      Laurel:
      I could not upload the research articles on Cellcept and CIDP. If you would like copies, email me at:
      [email]ashley.pereira@honeywell.com[/email]
      thanks
      ashley

    • Anonymous
      January 23, 2008 at 11:50 am

      Kelly:

      Thanks..I hear what you are saying….unfortunately we are not the experts and we can only ask the right questions and make informed choices and pray that the neurologists are on the right track.

      I totally agree with your statement that it depends on the individual and the extent of the damage and medical history…especially when it comes to treatment.
      regards

      ashley

    • Anonymous
      January 23, 2008 at 11:58 am

      Ashley, it took 4 months of IVIg before I noticed a difference but because of my stupid kidneys I get a very low dose. I agree with the others about Cellcept but given the option between immobility and a compromised immune system I know which I’d pick. Have you considered plasmapheresis? Why not try MORE IVIG and/or more often before trying the other nasties. My nurse has one CIDP patient who gets IVIg weekly, had a big loading dose and now gets it once a week – that is what finally worked for him.

      At any rate, don’t give up and tell your Mom we’re thinking of her. :p

      Julie

    • Anonymous
      January 23, 2008 at 12:03 pm

      Ive posted this a couple of times since November. The neurologist who spoke at the meeting is the new neuro that has joined the Foundations advisory board.

      Copied from a previous post.
      [quote]
      Last weekend, the Philidelphia group had a chapter meeting. The speaker was Dr. (sorry, I am going to get his name again from the foundation and post it for you)…… There were a number of CIDP patients in the group and he answered a number of questions regarding treatment, what was effective, what to do if certain treatements werent effective etc. Here are some of the notes I took from his answer and question time. ….

      # As we know, certain varients of CIDP react better to certain treatments. He said that in his experience, if the patient did not respond after 2 or 3 IVIg therapies then he added sterroids to see if there was a response.

      # next step would be (I think the IVIg would have been discontinued when following this step), High dose sterroids everyday, then change it to every other day and add Cellcept or similar (up to 3g), and then lower the sterroids more.

      # Then if that didnt work, he would try Plasmapharesis

      # consider Retuxan (sp?)

      These are from my notes, and I was trying to write them down as quickly as he was speaking. He was responding to a patient who asked him what would his treatments be if IVIg failed and what steps would he follow to find one that did work. He also mentioned a couple of treatments that may work for CIDP, but they have been removed from the market because they are so dangerous, so there is a possibility way down the line that some trials may be considered with some of these drugs, but that is still way down the line if it happens at all.

      [/quote]

    • Anonymous
      January 23, 2008 at 4:54 pm

      Hi Julie:

      Thanks for your response. We will see on 28th when we visit her neurologist…re; next steps.

      My mum fortunately has taken well to IVIg and at 75 years old one must be careful re: next course of action…..

      When I see the posts here and I know I am repeating myself, so much is dictated by the age when onset of this condition, the mindset of the individual, the amount of axonal damage, etc….that every treatment has risk and side affects.

      I know and have faith that she will walk again…

      regards

      ashley

    • Anonymous
      January 23, 2008 at 5:12 pm

      Hi Ali:
      Thanks for your post…I did read this under a different thread. Unfortunately I cannot post due to size restrictions, but per a German 2005 research article titled,” CIDP – update on pathogenisis, diagnostic criteria and therapy” by Prof. Hubertus Koeller, et al, the therapeutic options of CIDP correlated with evdience of treatment are:

      1. Large body of evidence – Prednisolone 1mg/kg tapering to end at 52-104 weeks, – IVIG, 2g/kg over a 5 day period or0.4 g/kg bw/day for 5 days then 0.2g/kg every 30 days and finally Plasma exchange.

      2. Medium to small body of evidence – Azathloprine 2.5mg/kg bw/day then adjust dosage to achieve lymphoneia of 600-800ul, – Cyclophosphamide 750mg/m2 i.v. every 30 days, – Cyclosporin, and finally Mycophenolate.

      3. Very Small body of evidence – Interferons, Rituximab…

      I would imagine Cellcept would be in the 2nd category.

      regards
      ashley

    • Anonymous
      January 23, 2008 at 8:15 pm

      Ashley,

      No disrespect intended to many doctors and neuro’s, but I do believe that many people on this forum are far more expert than the average medical professional. There are some wonderful doctors out there who dedicate a great deal of the time to peripheral neuropathies, GBS and CIDP, or those who are prepared to admit to not knowing much, but spend time trying to find the correct way to treat a particular patient – and that includes listening to research the patient or family has done. If you have been able to get one of those wonderful doctors, you are truly blessed. Many patients on the forum have spent months or years researching our particular syndrome, whether it be GBS or CIDP. You are taking the right approach I believe in questioning and being proactive in this case. It is however so unfortunate that each person reacts so differently to each treatment given, and you are going to make the most informed decision that you could possibly make drawing the knowledge on the forum, the doctors knowledge and of course, the personal knowledge you have of your mother.

    • Anonymous
      January 24, 2008 at 11:12 am

      [FONT=”Comic Sans MS”][B][SIZE=”2″]Ashley,
      I couldn’t agree more with Ali about the people at this site.
      I am 59 and have enjoyed life-long good health, then suddenly on my 59th birthday, Wham!
      I find myself unable to walk an in not inconsiderable pain.
      My first two hospitalizations, I was seen by a Gastro-Interologist who removed my gall bladder of all things, then treated me for an infection resulting from that procedure, and for pain I was on a morphine pump. On both occasions, my request to be seen by a neurologist was ignored.
      When I finally got to the right Hospital, I was immediately given a lumbar puncture and an EMG and it was determined that I had GBS.
      By the third IvIg treatment (in ICU) I was improving and after the fifth, dramatically improved. Alas, after I’d been home for 10 days I suffered a relapse and had another course with less dramatic results, still I was able to go home and get around with the help of a cane and a walker.
      After that though, I went into a depression and allowed myself to get weaker and worse for nearly 2 months, till I revisited this site and was inspired to get back up in the saddle, so to speak.
      Plasmapherisis worked wonderfully for me, no longer need a cane but carry it for balance issures, and I’m taking Prednisone, which we are trying to reduce by using the scary,( but hopefully worth it) Mycophenolate (CellCept)
      For me, this is kind of like an AA meeting, reading everyone’s story just inspires you to keep searching, keep going and keep smiling.
      Best to you Mum[/SIZE][/B][/FONT]

    • Anonymous
      January 24, 2008 at 8:59 pm

      Hi Ali:

      I have gained invaluable insight from this support group and also as discussion points with my mum’s physician and also the neurologist. Knowledge is power.

      regards

      ashley

    • Anonymous
      January 24, 2008 at 9:06 pm

      Hi Veronica,

      Thanks for your post and your thoughts for my mum. Hope you stabilize and improve in the right direction.

      Also, my mum has difficult turning and constantly needs to be turned from one side to another in bed. Is there any harm if she is not turned as often…….is it more a psychological need that she wants to be turned as often…she does complain of leg’s being heavy, a drawings sensation in her legs??, etc.

      Any suggestions to those out there for her to get her a better rest at night, a special pillow, mattress etc….this has taxed the caregiver…

      She does have a hospital bed and we have made special pillows for her to rest her legs…

      regards

      ashley

    • Anonymous
      January 24, 2008 at 9:43 pm

      [U][I]Please listen to your Mum. If she asks to be turned she [I][U]needs [U][I]to be turned![/I][/U][/U][/I][/I][/U] No one can adequately explain the pain from being in one spot to long ๐Ÿ˜ฎ Yes, there is harm that can be done ~ her skin could break down “in the blink of an eye” and there’s all kinds of complications that could come from it. Trust me, you don’t want to go there!

      There are no words adequate to be able to help you know our pain. Please, you must trust that your Mum knows what she “really” needs. Her body is telling her. I remember saying that the sheet was to heavy on my legs and how would a healthy person understand that ๐Ÿ™

      Of course her caregiver is taxed (as all of ours’ have been) but she is not trying to be difficult or demanding. She is in a new world of helplessness, pain, and its totally foreign to her, first and foremost. This is not an “easy” disease especially with all the uniqueness that we each present and experience.

      Please let your Mum know that there is a whole other family out here that knows what she’s going thru and cares deeply. Reassure her of the hope for better days. And we look forward to when she can make her first post to us.

      Please keep asking the questions so that we can be of help to all of you.

    • Anonymous
      January 25, 2008 at 8:08 am

      Judi:

      Thanks..I fully understand and I know my mum she is the kindest person in the whole world and would never complain or ask if it was not necessary. I also know that this disease also makes folks anxious, panic attacks at night etc….horrible….

      Just trying to understand further what would help….

      The doctors did prescribe a relaxant & sleeping pills which have helped but the relaxant was stopped as this was making her legs weak..

      regards

      ashley

    • Anonymous
      January 25, 2008 at 8:15 pm

      Hi DR Ashley I got CIDP in the fall of 2004 from a flu shot. I had a spinal Tap in the spring of 2005 and in June of 2005 I had a nerve biopsy. Both were normal. I still have pain to this day from the nerve biopsy.

      I am seeing DR Zwicker at the Ottawa Civic Hospital. I started taking Gabapentin for the pain from my nerve biopsy. I was at 1800 mg then I switched to Lyrica. The nerve test and the muscle test is what told her I had CIDP.

      I saw a local Neurologist in Dec 2004 and again in March 2005 it was him that referred me to the Ottawa Civic Hospital. I was there within 3 weeks. I got the first DR who could see me. I wasn’t getting worse by then my still it affected me in my daily and work life and it got worse last year so last summer I had 25 grams a day for 5 days and just came back today from 5 more days of IVIG Gammunex 25 grams a day for 5 days.

      I go back on March 4th for a follow up to see if it improved me even more. When I saw her last November the tests showed I did improve but I was still having problems with my body muscle and weakness. Hopefully I will improve so much more I won’t need anymore IVIG.

      I weight 144 lbs and got 125grams of IVIG the first around and the second time around. Also people say if the IVIG doesn’t work on somebody even after getting many doses it may be time to consider P.P (Plasmapherisis) (sp?).

      Hang in there and keep us posted.

      Sue

      From Cornwall Ontario

    • Anonymous
      January 25, 2008 at 8:56 pm

      Hi Sue:

      Thanks I will….and I think pp would be a logical next step…lets see what the chief neurologist says….

      Now for a not so new but very important topic….G rated..PLEASE RESPOND AS TO WHAT CAN WORK

      My mother is fixated about her bowel movements(BM). Now she has had a problem having a regular BM and would take a suppository. With her CIDP and IVIg it has gotten worse. She is taking stool softner, suppositories and lately as she is still in the hospital, fleet enemas. She is also thinking of milk of magnesia.

      When she has a good movement she is cheerful but not otherwise and is retaining gas…

      Any advice is much much appreciated….

      What I have just started to read are things like Apple Juice, Tabasco Sauce, etc.

      I know that Fruit(like Papaya) has helped.

      thanks.

      ashley

    • Anonymous
      January 25, 2008 at 9:08 pm

      Ashley,

      I have just finished a post regarding the bowels. Unfotunately I think I probably discuss it more than anyone else on the forum ๐Ÿ˜ฎ , only because it effected me so intensley when I was paralyzed. I think that the most important thing to remember here is that the patient is not originally constipated – but becomes so because they are unable to evacuate and water is drawn from the stool which makes it harder and even ‘more unmoveable’ (not great language). The lack of muscle strength prevents the patient from ‘pushing’, the body is paralyzed and unble to pass the stool naturally. Unfortunately the only thing that worked for me were the enema’s – and not to be horribly curde here, but they were not the little fleet enema’s, but manual and more industrial (to put it nicely). Feeling the way your mom feels before she has been relieved by the fleet, is [I]the most awful[/I] feeling! and I really dont say that lightly. Once I was able to stand up on my own, and start moving, I no longer required enema’s, but seemed to be on a constant diet of prunes…..which I HATE, but they did help tremendously (the soft ones). Later of course I was able to stop eating them. Hope that helps.

    • Anonymous
      January 25, 2008 at 9:14 pm

      Hi Ali:

      Thanks for the experience…

      Believe me I feel for your experience and the anguish my mother is going through..
      As she cannot walk and is in bed most of the time this does not help..

      I will ask her to try and sit up more often…

      Prunes….Ok will add this to the list…

      I will talk to her doctor re: larger enemas..

      regards
      ashley

    • Anonymous
      January 25, 2008 at 11:30 pm

      Hi Ashley,
      Now concerning bowels, I am a bit of an expert. Hubby has had lots of trouble with constipation over the past few years probably related to the CIDP and he tends to get a little overly focused on that issue . I found that the stool softeners were critical on a regular basis in the beginning until he added Metamucil capsules (4 per day) to add fiber and bulk. But the biggest benefit was adding probiotics three or four times a week. The best were Udo’s Choce Super 8 Hi-Potency. No complaints of constipation since routinely taking Metamucil capsules and Probiotics.
      We have horses and they have a delicate digestive system with colic being life threatening to them. Our thoroughbred had frequent gas and impaction colics until I added probiotics to her routine as well. It was a family physician that gave us the advice to add probiotics to my husband’s routine.
      Laurel

    • Anonymous
      January 26, 2008 at 7:45 am

      Ashley,

      If the fleet’s are working, maybe stick to them, or maybe try two at a time, alternatively, give them more often. The larger ones often bring on an anxiety level that is somthing else to deal with entirely, but if needed, obviously worth it. I just wanted to give you an idea of what can happen if things aren’t taken care of initially, and how really awful and painful it is for someone to have impacted bowels. ๐Ÿ˜ฎ (Isnt it amazing what we will talk about as we age – my 16 year old will be horrified if she read this ๐Ÿ˜€ )

    • Anonymous
      January 26, 2008 at 9:05 am

      Hi Laurel:
      I think we are all in the wrong profession….just kidding. Thanks so much I will discuss with her physician – metamucil+probiotics and will come back on this.
      regards
      ashley

    • Anonymous
      January 26, 2008 at 9:08 am

      Hi Ali:

      Yes….understand….

      As far as this blog…yes my 9 year old and 18 year old use facebook, msn blogs, etc…..a few months ago I would not imagine that I would be seeking advice on these issues….

      Unbelieveable……..but this makes the world go around and it is help & experiences from folks like you and others that are invaluable and if they can be of help this is bonus.

      regards

      ashley

    • Anonymous
      January 26, 2008 at 9:27 am

      Hello,

      I’ve read all your posts, not the other’s ,just yours. I’m sorry for what’s going on with your mum. I wish you the best of luck. I’m sure it is so frustrating.

      We have a 3 year old with CIDP. He went up and down for awhile and finally stabilized with ivig and solumedrol. I agree with Kelly, Emily’s mom. You have to make sure she had ENOUGH of ivig.

      We are going to start Rituxan in March to kill his B-cells. He’s not quite in remission and would really like to see if we can get him into remission before he would start school. I know you worry about everything with your mum, just think hard it is when you have a 3 year old with the disease.

      Love to you both,
      Lori

    • Anonymous
      January 27, 2008 at 9:07 am

      Hi Lori:

      Thanks and my prayers for your 3 year old..it is so overwhelming…it is so necessary to have a support group….

      Her legs now have pain so we are trying tylenol and some soothing pain releiver cream and massages.

      regards

      ashley

    • Anonymous
      January 27, 2008 at 10:37 am

      Tylenol isn’t really going to do too much for the pain that she’s in. It’s not “regular, normal” pain. It’s searing, burning, nerve pain. I also don’t think that any kind of numbing cream will work either since that is mostly for muscle pain…unless she is having muscle pain as well then it will help a little with that. She needs something like Neurontin for the nerve pain. We gave Emily Motrin when she was in extreme pain…but she was 4 years old when all of this started & it just took the edge off.

      Nerve pain, from what I’ve been told & what I can guess from Emi’s description, feels similar to when your feet go to sleep & you try to walk on them anyways. Emily describes it as “mushy strawberries”. She says that the muscle pain feels like “nuts”, which I’m assuming feels like a “charlie horse” or a knot in the muscle.

      Pain management is VERY important, especially if she’s bedridden & can’t move around. She needs the best meds to make her feel most comfortable.

      Hope that helps,
      Kelly

    • Anonymous
      January 27, 2008 at 10:38 am

      Ashley Tylenol and pain reliever cream just won’t cut it. She will need pain reliever that will help for the nerve pain. There are many kinds people use. The main one is Gabapentin. Also some take Lyrica and there are others.

      Sue

    • Anonymous
      January 27, 2008 at 1:46 pm

      Ditto Sue ~ this is not the “usual” pain issue. Mum needs neurontin, lyrica or one of the others because this is the pain of neuropathy. Narcotics don’t make the difference either. And don’t be concerned about her becoming “addicted”. She [U]needs[/U] the pain relief. As her pain decreases she will be able to taper down. Only she will know what she really needs for pain relief. No doctor, text book or any other source will know the amount she needs better than she does. We have all had to discover the “right amount” by trial and error. Hang in there!

    • Anonymous
      January 28, 2008 at 6:18 am

      [FONT=”Comic Sans MS”][SIZE=”2″]Ashley,
      The pain that accompanies GBS/CIDP is difficult to convey, and different for everyone. For me it felt as if I had been stabbed in the sternum and right through to the spine. Fortunately for me, my neuro felt pain should be treated as aggressively as the other symptoms, In hospital, at one point, I needed a Morphine pump, and went home with a fairly high dose of sustained release Oxycontin, (40mg) plus Baclofen (which is for spinal cord injury) and Neurontin. I am now weaned down to 10mg of the Oxy and off the Bac but still taking Neuronitin. The Neurontin or Gabapentin is very important so please ask about it if she’s not already taking it.
      The other issue is ‘perceived pain’ or pressure sensitivity, like having a mere blanket over your feet feel like a ten pound weight or feeling like there is gravel in your shoes, even though your wearing soft slippers.
      In other words, keep bugging your doctors up there about getting adequet pain relief for your Mum.
      You’re a very good son
      Best wishes [/SIZE][/FONT]

    • Anonymous
      January 28, 2008 at 8:31 pm

      Hello all:

      We are devastated…..my mother has been re-diagnosed by her chief neurologist as having ALS…(I think they suspected this but were not entirely sure). With her rapid decline over the past month and her re-tests there has been further axon damage…this is not just myelin sheating damage …this is now irreversable.

      Thanks to all for your kind words and advice…I thought there was a glimmer of hope having CIDP but this is like a death sentence.

      Praying that she has a comfortable time ahead…

      regards
      ashley

    • Anonymous
      January 28, 2008 at 10:11 pm

      Dear Ashley,
      I am so sorry to read this dreadful news. It felt like it took the wind out of me reading it so I can only imagine how upset you all are. May God bless your mother and you and your family. I will say prayers for her.
      Laurel

    • Anonymous
      January 30, 2008 at 2:58 am

      [FONT=”Comic Sans MS”]Ashley,
      I’m so sorry. My prayers going up for all of you.[/FONT]

    • Anonymous
      January 30, 2008 at 12:45 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]Ashley,
      I know you are probably still reeling from the news and perhaps haven’t had time to do much research yet so I poked around a bit and found this web site for the ALS Society of Canada
      als.ca/_units/ontario.aspx or in case I messed that up, simply
      als.ca
      Since all the sites visited stressed the importance of a 2nd opinion, specifically from those who have had training in ALS diagnosis and treatment, I took the liberty of copying down this information for you:

      Ontario Chapter
      265 Yorkland Blvd
      Suite 300
      Toronto M2J1S5
      Phone 416-497-8548 Toll free 866-611-8545

      Please don’t lose heart, you have been so strong, and if you were my son I would be very proud of you. Come to think of it, I am very proud of you since we are [I]all[/I] family here.
      Whatever happens, please keep in touch as we have become quite invested in your Mum and you.

      [/SIZE][/FONT]

    • Anonymous
      February 2, 2008 at 5:32 pm

      It’s nice to meet you Dr.

      Lyrica and Tramadol have helped me considerably over the past 4 years. I did take Neurontin for a long time but the dosage made me tired and comatose. Since your mum is older, perhaps Lyrica would be a better option for her. Good luck with everything, you family and mum are in my thoughts and prayers.

      Jerimy

    • Anonymous
      February 2, 2008 at 11:26 pm

      Ashley,

      I am sorry for the ALS diagnosis. My aunt had ALS and I helped my mom take care of her every evening for nearly a year. I was in my mid 20’s at the time and now, looking back, I am so glad I had the chance to be able to be with her and get to know her. It is a difficult disease to say the least but she is lucky to have you . Take one day at a time and make the best of every moment. Try to also take care of yourself so that you can be there for her. Even tho it’s not CIDP or GBS, you have met a great group of very caring people on this forum that will reach out for you with support and prayers.

      My best to you and your mum.

      Stacey