You mention pain, I was wondering about weakness etc.? The ivig might not take care of the pain. We always have pain, even at our last ncv/emg we had a normal study from the previous year but there still was pain. Sometimes the pain in the spine and ankles is worse after ivig. Are you on any pain killers , such as neurotnin or lyrica? If you are concerned about the cell cept (I understand, we declined it as well) is pp and ivig a possibility? I would probably try to diferentiate between pain and demylienation and once I was positive there was continual/additional demylienation I would have to explore pp. If it is not an option maybe you could consider cytoxan, it too has side affects, but it seems to be a choice regarding remission as opposed to just maintaining as cell cept seems to do. Good luck in making your decision. Others will be on to give good advice I am sure.

Clare,
In my mom opinion, if there is no weakness or increased numbness, gait issues, tingling etc. I would say the ivig is working. I can’t imagine cell cept would help with pain if you are not in a relapse. It can only supress the imune system to stop an attack. If you have no symptoms of a new attack, clinically AND diagnostically say w/ a new ncv/emg, then I do not think cell cept is your answer. I would seriously explore lyrica, neurotnin, cymbalta, and I think Elmo is using elavil. Vicodin is good for other types of pain, but I don’t think it helps that great with nerve pain. Certain foods increase inflamatory processes, especially if you are allergic to them. Since we found out that we are allergic to cow/dairy, chocolate and succanant (sugar) and I have totally removed cow/dairty chocalate and sugar to the best of my ability, our pain seems to be less. We have not been on the daily aleve, tylenol regimen in a while. Headaches have decreased by at least 50%. Try some allergy testing or just eliminate the sugars, glutens etc. Keep us posted

[QUOTE=Lovescats] I don’t have any other issues right now other than the pain. The Vicodin does help the pain, but I don’t want to get addicted to it. I did try Lyrica, but could not take it. I did try Cymbalta and it worked great, the first day I tried it, it took the pain away. Unfortunately the side effects of excessive sweating and extreme dry mouth did not go away. I am seriously thinking about trying it again, I just worry if that is not a good thing with the excessive sweating and dry mouth. I was on it for about three months and the side effects did not decrease, but it felt good to not have pain, but just irritating to get out of the shower and feel like I had to take another one.
Clare in Michigan[/QUOTE]

[I]If you take Vicodin or any other anelgesic narcotic, you will not become addicted when you take just enough to relieve the pain. That said, however, it’s probably easy to go over-the-top with usage … maybe? I don’t know. I do know the experience of a couple friends and it was a godsend for them.

Give Cymbalta some time. It took me much time to get acclimated to neurontin/gabapentin. I had to decrease dosage to kiddie amounts and then start moving upward. Finally, tho’, we reached a point where it is not only tolerated well, it is doing everything it’s cracked up to do.[/I]

[I]a P.S. You might give ALA ( alpha lopeic acid ) a try. It’s undergoing testing at the moment, but has been used in Europe for years and years. I am a believer! That and the neurontin/gabapentin have been pretty spectacular for me. I’m not saying it will ever-be-thus, but it is now and I’ll take what I can get![/I]

I Need HELP,
Look, I’ve kinda steere clear of this site because all this talk of wheelchairs, walkers, narcotic pain meds etc

I’ve been diagnosed w CIDP for 3 1/2 years, and have run the Gammut of prendisone, IVIG, now CellCept- Cell-Cept DID do a fair job of halting the deterioration, without the weight gain, bone loss etc of steroids. But, I’m being evaluated for probable Myeloma? So, I guess it CAN happen.

On the Positive Side, Cell Cept weas my Alternative to Chemo-Class drugs, so, I ganed a couple years of Hair and I can still walk n drive.

ON THE OTHER HAND, the CIDP is Progressing, I’ma Divorced/Single Dad of 2 kids, live in thge country, am losing about $1000/month and, now, cancer Drs?

IS there a pointr where one admits they are screwed takes a cruise, then jumps overboard????!!! The Pain ios niuts! I Don’t Sleep And I’m just wondering how it’s gonna end.

I rarely check this Forum but you are welcome to hit me at heronemus on aol

or AIM

True Words- If you think it’s the Worst, look around- there’s someone worse off and, well- If yo are Considering CellCept- It did give me a couplke Steroid Free years?

God’s Peace
Eric

Eric,
Nice to hear from you again, I wish it were on better news!!! On a positive note, maybe you can ask the docs to explore the use of cytoxan for the cancer. Many on the site have been using the protocol with wonderful results. Do you remember Ryan’s mom? Ryan is walking now and went to college. Last year at this time he was in a wheel chair. Maybe this will be your light at the end of the tunnel!

You kind of came back here at an interesting time. You mentioned you stayed away because of all the sad talk and pain pills, unfortunately, for some it is a reality, but on the positive side, you or anyone can come here and get help, a lending ear, or a pick me-up. someone is always here to offer any of these things.

Don’t take that cruise, I have been thinking about it too alot lately, Kevie is not doing so good AGAIN, lots of other really bad medical things with other family members. But I know I have to keep going on for these kids. You too, have to! They depend on you. You will have such wonderful strong children when they are adults, they have had you as a role model, they see you forging on in spite of your tribulations with cidp and other life changing situations.

So, try to be strong and maybe you can irradicate the cancer AND cidp with treatment for your cancer dx. I am thinking of you and your family. prayers sent your way.

Eric. I have been through all treatments and am now on cytoxan.
This is my last shot at slowing this disease down
I will admit I have set some pretty realistc goals and my hope is cytoxan gives me one more year of mobility
Now on that note my definition of mobility has changed. It was the ability to walk without assistance. No canes hand rails or any of the tricks we use to not wobble like a feeble when we are trying to stand and have a conversation with someone. I used to tell people I am not drinking just have a balance issue
Now mobility to me is the ability to stand up from a sitting position with the use of canes too walk 50 yards without crying out in pain, and to use my forearm crutches only when my body is too exhausted not too

I swore I would never do the wheelchair thing, but I know that is a quickly approaching reality.
Mobility is mobility if it is self powered. This is my newest definition. I refuse to think of a scooter at his point but that may also change as this progress’s in my body.
I think the one thing that inspired me too write you is this simple fact. The ability to take our own life is one of the last things we have full control of. We are losing control of our bodies, our lives in general, and I believe that too know we have that one control gives us the ability to fight one more day.
I do not know when I will say enough is enough but to say I never think about it would be a lie

Stay strong, not only for you but your kids.

By the way. I am in week two of cytoxan it is tougher than I thought but it has given me one more day of hope.

Gods speed

Sorry for my self-serving orevios Entry,

I AM in Pain, the next step IS Cytoxin, I think

But I still walk, someMy kids get frustrated I can;t do, or think, well

There is so much, yet, undone

Others lived lives of Dining out, clean apartments and New Car Payments
Loving spouses and shared responsibilities

I have a Big, Old, house, w a big old yard
Old cars (aome antiques in vARIOUS LEVELS OF RESTORATION/DETERIORATION

an ex that wants to take my 9 year old from me

a mother in 5th stages of Alzheimer’s

A rental House, an usptairs apt I built into my own house, when diagnosed

My Arms are as bad as my legs, But I’m still walking and driving

But I’m in a Rural Setting w no Public Transit and a house full of Junk

I’m not suicidal

But this single Dad of 2 Doesn’t know how I can FIX this

I appreciate the Sympathy n support

Peace Also Be with You
Eric

Oh, Heronemus on AOL is my normal E-Mail

Lovescats, ask for prolixin (fluphenazine). My daughter takes 1 mg. 4 x day, kind of a pain, but actually 1 mg. 3xday is where they started her. This is in addition to two other pain meds, but has made a significant difference. Ask about it, the younger docs will have to look it up, it’s been around a long time. Cellsept is not for pain, it is thought to work on the immune system, but is not for pain. In fact it is primarily used for transplant patients.

I am very happy with my improvements with Cellcept. I am a nurse and understand the risks. However, there are risks with all of the treatments for this disease. I am also from Michigan. I have CIDP. My email address is [email]ddlapan@yahoo.com[/email] You are very welcome to email me.

Hey bro. I am currently on cytoxan (3000 mg every three weeks) plasma exchange 2 x a week 5 liter s out 7 in. And sumatrol 1000 mg a week
The best relief is the sumadrol but I believe I will put this in remission with the cytoxan.
The chemo is tough but very doable. Focus on exhausting every effort but do not leave it too long. My axiom damage in both legs and my left arm and right face are severe.

Take care

[QUOTE=nicsmom]Lovescats, ask for prolixin (fluphenazine). My daughter takes 1 mg. 4 x day, kind of a pain, but actually 1 mg. 3xday is where they started her. This is in addition to two other pain meds, but has made a significant difference. Ask about it, the younger docs will have to look it up, it’s been around a long time. Cellsept is not for pain, it is thought to work on the immune system, but is not for pain. In fact it is primarily used for transplant patients.[/QUOTE]

No, it’s not “for” pain. however, if you use it and get better, you usually have less pain. I know when I was on Cellcept I had less pain, because the med was helping me, immune-wise.

edit: Dieno: When you say “axiom” damage, you really are intending to say “axon”, correct? What are the sxs of your axon degeneration? (other than on EMG).
Thanks 🙂

[QUOTE=Lovescats]I have still been having pain, even though my neuro has upped my dosage of IVIG and I am getting it more often. I know he wants me to try Cellcept, but I am afraid to take it because it states it could cause lymphoma. I have had endometrium cancer in the past and had a hysterectomy and was blessed that they caught it in time and I did not have to have treatments. That has been four years ago. I am really tired of the pain and don’t know what to do. Has anyone here been on Cellcept and what was your experience with it? Would appreciate any info. Thanks a lot.

Clare in Michigan[/QUOTE]

hi clare my names keith i am 27 and have cidp i take 3000mg of cellcept i have not had any problem with. i live in va i got where i could not walk and my neuro sent me to charlottville va and becuse i was alergic to ivig they done plasm pherices it work pretty good

My neuro at UVa is recommending cellcept for me. Did steroids for a year and a half and had side effects I didn’t like with no improvement in symptoms. I’m hoping this will extend the time between IViG treatments. The IViG works well for me, but it seems I’m on this cycle where after about 3-4 weeks all the symptoms start to worsen again.
Also, anybody have joint pain? I am stiff in every one of them-knees, hips, shoulders, fingers, neck and lower back. Doctor tells me its not likely from CIDP, but from age. I guess I should have listened to my Grandfather who always said “Donald, don’t get old.”

I’ve been on Cellcept since Feb ’10 and I don’t have any issues with it outside of cost (roughly $900/mo).

According to my neurologist, Cellcept takes 6 months to fully “kick in.” In the meantime, I had required a monthly plasmapheresis treatment.

Since August, 6 months after starting on Cellcept, I’ve required no other treatments. I don’t have to see another doctor until the Spring (when I need my med scripts).

I guess I’m pretty fortunate because I continue to shake my head when I read what others with this disease have to go through on a daily basis. My experience now is nothing like what others are forced to endure.

I’m actually in better physical shape now than I’ve been in over a decade. I did completely change the way I eat and workout 5 days a week. Since July, I’ve lost 80 lbs.

I decided to change my lifestyle simply because I got sick and tired of lying in a bed. Lying in a bed and watching TV all weekend can be nice and relaxing once in awhile after a long work week, but it gets old fast when you’re doing it for 5-1/2 months in a hospital or nursing home.

I don’t suffer from any fatigue, pain, lack of balance, etc, etc. My neurologist is simply amazed every time he sees me.

My motivation is to stay out of the hospital and get into the best physical shape possible so that my symptoms won’t be nearly as bad as the first time I encountered this nasty disease.

how much prednisone RU taking? take care. be well.

gene gbs 8-99
in numbers there is strength

if you have a sam’s club or costco in your area you can try them. both will let non memebers use their pharmacy. I looked up on costco.com and here are some prices they have listed for 250mg
qty 30-110.16, qty 50 177.93,qty 100 344.01
500 mg
qty 30-216.30, qty 50 351.26, qty 100 689.64.
sam’s club does not give the info online, you have to call. you might also want to try wal-mart.
good luck
mj

I was never on Cell-cept myself, but there are other immunosuppressants out there that might work as well, such as Imuran which I know is generic. Ask your neuro if there is a major difference between the two?

Also, that is a very large dosage of prednisone to be taking. You cannot even begin to imagine what that will do to your body if you plan on staying on it. I would suggest instead seeing about getting solumedrol (methylprednisolone) infusions of up to 500 mg a week; it may be more expensive, but it is much easier on the stomach.

I was on weekly 1,000 mg of infused solumedrol for 21 months & ended up with cataract surgery for both eyes, an 80# weight gain (had never had any weight issues before), a rash all over my body which has left scarring to this day, not to mention the other obvious side effects of steroids, such as sleepliness, moodiness, hyperactivity, etc… I wish someone would have warned me back then what I would be in for. I did need the steroids at that time, however, just to stay out of a nursing home, but now they have realized that 500 mg works just as well as 1,000 or 1 gram.
Pam

i buy my meds from canada, new zealand, or isreal depending who is cheapest. usually i pay less than the best buy here in the usa. ask if you want the urls i use. take care. be well.

gene gbs 8-99
in numbers there is strength

Jack,

This is a post from Doc David, it may help with an answer. If you go to the thread [B]Methotrexate stops progression???,[/B] you will see the question that was asked.

[quote]
DavidBod
Senior Member
[LEFT]Limekat, methotrexate is a cytotoxic or anticancer cell drug. It inhibits rapidly growing abnormal cells. You will see that many of us have had azathioprine, cyclosporine, mycophenolate (Cellcept) and rituxan these, like methotrexate, are all anticancer drugs and methotrexate is currently in the forefront of research in the treatment of CIDP. I went through all the others and my CIDP was arrested by rituxan and has burned itself out for two years now leaving me partially paralysed but no worse over those two years. DocDavid[/LEFT]
[/quote]

I’ve been using the Cellcept for over a year now at first with the solumderol IV treatments and now with the IVIg. I do 1000mg twice a day because the other treatments alone wern’t working. It has seemed to make quite a difference. I was concerned about all the side effects but after all this time and lots of blood being drawn, my liver, kidneys, etc. have had no damage. I was a little more likely to catch a cold or any other bug going around for awhile there but with taking vitamins that problem isn’t as bad. My only complaint is the fasting that goes with each dose, I’m a nibbler so doing without food is horrid, lol. I really can’t think of any real problems I’ve had, just be sure they do your labs regularly so if a problem does arise they can catch it. At first I was going in often but now only have to give up the blood every three months.

Hi Jack,

I’ve been on Cell-Cept 1000 twice a day since May ’04 when
Prednisone (C’EST COUP TERRIBLE), IVIG, did not help. PlasmaPheresis
arrested mine. Now I only take the Cell-Cept it makes my skin very dry. I do regular bloodwork. I haven’t had a cold or flu since I came
down with this lovely ‘present’. I pray something works out for you soon.
Pallas.

Jack,
My name is Paul I also am on Cellcept would you like to compare notes so to speak

I have been on Lyrica and Cymbalta with IVIG every 2 or 3 months apart for exactly a year now. I am trying a new Neuro. who is now injecting me with cortozone, vitamin B12, and oral dose 25 mg of Prednisone every other day. Last week I started on Cellcept. I will anxiously watch Cellcept posts. I am very nervous about taking all these drugs, plus meds for blood pressure. I have been awfully depressed since on the predinisone. (Please excuse the spelling errors on med names.
Keep fighting this. Regina

I as well am on Cellcept and I find it is doing a great job Far better than Chemo that I was doing

I was just wondering if the cell-cept was in conjunction with IVIG infusions. Usually when a neuro does this, it is to try to stretch out the time in between infusions. If he is trying it alone, unless you have a very mild case, I doubt it will work. Usally the immunosupressants don’t do much all by themselves. I tried imuran, it did nothing for me. Also, usually there is a lot of blood testing when one is on one of these drugs…

Pam is right. I’ve been on IVIG for about 1 1/2 years. In October, I saw a neuro who put me on Cell Cept. I have blood work drawn every other week to keep track basically of my immune system. My IVIG was every three weeks along with CellCept from October of ’06 until now. I am now going to every 4 weeks with IVIG. It takes a while for the CellCept to be effective- about 1/2 year. I was told it may or may not work. Symptoms will be the litmus if it works or not.

Right now, it seems to be working for me. I am much less fatigued and my numbness has decreased a lot. If every 4 weeks works, I will go to every 5 weeks with the IVIG and so on. My blood work has shown that my WBC count has gone down, but is still in the low normal range. I am more careful with preventing illnesses; however, I still have not gotten sick since CellCept, and I am around elementary students all day.

Overall, it seems to be successful for me. Unfortunately, I believe it is a person by person success or failure story on what meds work.

Best of luck to you!

Dennis

Off hand, I don’t know of any side effects that I have experienced. To tell you the truth, I knew the side effects at one time, but I can’t remember what they are at this point. It is working the way it is supposed to, as I judge it.

Dennis

Damon,

Roche, the manufacturer of CellCept, has a prescribing information sheet on their website. [url]www.rocheusa.com/products/cellcept/pi.pdf[/url].

In brief, the most serious effects are an increased risk of opportunistic infections, lymphoma and other malignancies, particularly of the skin, teratogenic effects (mutations during fetal development), and neutropenia (low white blood cell count. The effects are more severe when other immunosuppresive drugs are used concurrently and are dose and duration related.

MarkEns

Damon – regarding CellCept (currently I take 2 G per day) these are the side effects I have found –
moderate to medium hair loss –
dry, and I mean DRY, skin –
low white blood cell counts, rarely outside low-normal but occasionally –
more frequent need for treatment of sun damaged skin (basal cell removal)
more frequent need for dental hygienist to check gums and mouth health (every 3 mo.)

HOWEVER – it is allowing me to receive less IVIg each month, with a plan to continue weaning me both by amount and interval. (The hope being to eventually control CIDP by CellCept alone) – I seem to be less fatigued and more normally active throughout the day and also further into my 28 day IVIg cycle.

I received PP as my first treatment when I was diagnosed, followed by a combination of IVIg, prednisone and Imuran. I have since been weaned from prednisone -which kept me from being bed-ridden – and I am off Imuran. During the 2 years I took Imuran, we tried several times to lower amount or vary timing of IVIg – each time it was a bad experience. When my neuro would ask me if I were getting better, even by a little bit – I could only answer that I was holding my own.

CellCept has allowed my to see what it was they were looking for with Imuran. It is not a rapid result, but one where you must evaluate from three month and six month perspectives.

I don’t know if CellCept will work for me long term, and/or if I will accumulate more (or more dire) side effects. But for now, it has changed things for me. I hope you can get a good result from it!
Hope this helps, Bonney

Damon,

Bonney rattled my brain!! I do have extremely sensitive teeth now. I always have had somewhat sensitive teeth. My dentist did say the increase in sensitivity may be attributed to the CellCept. I never know what problems I have are CIDP vs. CellCept vs. Getting Older when I have aches/pains. But every time I eat my very favorite dish of ice cream, I eat cautiously!!

As with Bonney, I am supposed to get teeth cleaned every three months, but I am too cheap to pay that extra cleaning!! I was told to stay away from the “abrasive” toothpastes with whiteners, plaque removers and even Sensodyne. I just use normal toothpaste. I do try to brush more frequently, floss a couple times a day, and use Crest Mouthwash. The dentist even said not to use Listerine (something about it dries out the gums with all of the alchohol.)

Thanks, Bonney, for the reminders and for rattling this faulty brain of mine!

Dennis

After being on Cellcept for 8 months my husband is being weaned off the drug.It’s after getting the results of a nerve and muscle biopsy. The results showed that in his case the b-cells are involved and the Cellcept is used to treat the t-cells when they are involved in CIDP. He didn’t notice any side effects…although in the last few weeks he has developed a severe diminished blood flow in his 2nd and 3rd toe in each foot to the point of now there are darkened areas. He is being treat at Johns Hopkins and is due to see a vascular and rheumatologist. All bloodwork was normal. Have any of you experienced this? We don’t know if it is related to CIDP or something totally new.
My thoughts are with all of you 🙂
Donna

I am on Cellcept and I find it has done me extremely well

peggy,

cellcept is one of the possible meds for cidp, not gbs, after ivig & pp fail to work. take care. be well.

gene gbs 8-99
in numbers there is strength