Steroids Vs IVIG….

I have been fortunate that my sons doctor has honored my request to stay away from steroids. He did suggest it in the beginning, and I responded with all of my thoughts and facts regarding the issue. I recently requested our records and I noted that he made mention of the fact that “mother is opposed to steroids and has investigated in detail side affects at this time I agree that ivig is the best course” I was so glad to read that. I agree, Dr.s must have some sort of “protocol’ to offer steroids as a first defense regarding the differences in cost ivig vs. steroids.

Besides the obvious side affects of steroids, I also would be concearned with the side affects of immuno suppressants. Lymphomas, increased risk for illness (which makes the body fight off infection, which turns on the immune system, which starts up cidp) Unless ivig does not help anymore and these treatments are a last resort to sustain stregnth, I agree IVIG!!!! Maybe if the doc cannot meet your demands, you could change? Good luck to you! Dawn Kevies mom 😮

Sheila,
I have been receiving IVIG — and only IVIG — for nearly a year now and am almost completely normal. It worked right away, but my strength has continued to improve over the course of the treatments. So it would be hard to judge if it’s the steriods or the repeated IVIG that is making you feel normal again.

My neuro is strongly opposed to oral steriods (eg, Prednisone) because they have potentially devastating long-term side effects (ostoeporosis being one of them). If the IVIG had not worked, they were going to try IV steriods, which are more effective and less dangerous. Plasmaphresis, immunosuppressants, etc, are last resorts. The IVIG is preferred because it has the least side effects. I’m getting 35g every 6 weeks now (started at every 4 weeks), and I’ll put up with less than perfect balance to stay away from the other treatments! I also found that taking Tylenol after the IVIG and before bed helps keep the mild headache away.

Cost is no reason to subject your body (and mind) to the effects of steriods! In fact, the long term cost of using them could ultimately outweigh their “cheapness.” My doctor has taken the approach of trying to lengthen the time between IVIG’s to reduce cost and reduce the unpleasantness of being treated. If your doctor can’t/won’t work with you to ensure the best (not cheapest!) treatment for you, you should get another doctor. Make sure though that if you do stop the steriods that you do it very very slowly.

Take care,
Caryn

Sheila,

Is your docotor going to keep you on 60mg prednisone long term or does he plan to reduce the dosage slowly until you are taking the least amount necessary to keep the CIDP symptoms under control?

I am one of those who is taking prednisone long term – 7 years at this point. Other than a 20 pound weight gain I do not have side effects. I am constantly adjusting my dosage to try and get it as low as possible. Unfortunately every time I catch a cold I need to boost the dosage and then slowly taper down again ( and again, and again, etc.). Right now I take 20mg every other day.

It’s important to remember that every patient is different – but taking the lowest effective dose is important for everyone. Here are my 2 favorite web sites to tell you how to watch for, and possibly avoid, side effects from prednisone:
[url]http://www.classkids.org/library/pred.htm[/url]
[url]http://www.gihealth.com/html/education/drugs/prednisone.html[/url]

I am taking prednisone because it works. For me, for now. When my CIDP symptoms require me to take dangerous amounts of the steroid my neurologist has the other treatments available.

And yes, money is a consideration.
Flossie

The ‘specialist’ told my neuro that I should definetly go on steriods in favor of IVIG. She threw in somewhere that IVIG is very costly.

However, my PT rehab specialist said absolutely not to go on steriods. She said that steriods have never proven to stop how far an illness (such as MS or CIDP) will progress. It has only shown to slow down the rate but the overall outcome is not affected. In the meantime, she said that falls are more dangerous, eye sight is affected, and for a small boned person such as my self, osteoperosis would be a guarentee. And that the cost of a treatment that is proven affective is irrelevent.

Finally, a doc that understands the practical patient side of it.:D

The specialist in Chicago had only 3 other CIDP patients to make her judgement call while the PT specialist has seen dozens of GBS/CIDP patients.

I’m going to convince my neuro to stay with the IVIG. I have enough going on that I don’t need to throw steriods into all of it.

Hi!

I’m new to this forum, but have CIDP for the last ten years…recently, I did
switch doctors because the IVIG was so expensive…I read on the internet
about oral steroids. Doctor put me on Cellcept 2000mg daily and Predisone
80 mg daily….long story short…I have been in the hospital three times now
with the time being 2 1/2 weeks each time…home 2 weeks, then emergency
room again, then inpatient 2 1/2 weeks…the worst myopathy (total atrophy).

The IVIG worked…100grams monthly on a 24 hour infusion, done at home.
How stupid was I to change the treatment due to cost…my new doctor
never saw me the last hospital stay, never called, he sent a partner.

I’m still in a wheelchair…but, I do my own physical therapy…plus, I’m weaning
myself off the steroids without the side effects.

I’m on disability, but most likely will be dropped from the insurance carrier
at the end of the year, due to these hospital bills…one was 100,000 dollars.

Miami Girl 😉

There is no cure for CIDP. The various treatments are all trying to affect the attack on the myelin. Some peple are lucky and can be helped by prednisone. (Of course, some people are even luckier and only have one attack and then their myelin grows back in an optimistic 3 years.)

Here are the treatment options that are taught by the University of Washington in St Louis’ school of medicine:
[url]http://www.neuro.wustl.edu/neuromuscular/antibody/pnimdem.html#cidprx[/url]
# Treatment
* Try individual therapies sequentially
* Response to one does not predict efficacy of others
* Therapeutic modalities
o Prednisone: 60 to 100 mg/day p.o., then taper
+ Start taper after: 3 to 6 months; or clinical improvement begins
+ Taper slowly
1. Initially by 5 mg on alternate days q2 to 4 weeks until 80 mg and 10 mg
2. Then by 2.5 mg on alternate days q2 weeks to 80 mg and 0 mg
3. Then taper high day dose by 5 mg q 4 weeks until 40 mg and 0 mg
4. Then by 2.5 mg q4 weeks
5. Minimum dosage is qod if possible
+ Many CIDP patients will relapse if Prednisone is stopped without additional immunosuppression
o Methylprednisolone (IV): 1 gram/day x5
+ Then intermittent (tapering) additional iv or oral doses (1 gram): Weekly to Monthly
o Human Immune Globulin
+ 1g/kg/day x2; repeat q3 to 8 weeks
+ 400 mg/kg 1 to 2 times per week for 8 or more weeks
o Cyclosporine A
+ Initial treatment when prednisone not indicated
+ Dose: 2.5 mg/kg b.i.d., then taper to monimum effective dose
o Plasma Exchange
o Azathioprine:
+ To lower corticosteroid or Cyclosporine dosage
+ Dose: 2.5 to 3 mg/kg
o Methotrexate: 7.5 to 25 mg p.o. on weekends
o Cyclophosphamide: Monthly IV pulse x 6; For refractory patients
o ? Interferon α 2A
………………………………………

All of the treatment options have side effects.

I happen to be one of the lucky people who responded immediately to 60mg of prednisone for just 2 weeks. Unfortunately I also have on going CIDP which means I need to help of the drug to keep the constant attacks in check. Some times my taper schedule has been reduced too much and my symptoms return immediately. It’s a balancing act.

I am not writing to influence people who know that IVIG is the drug that best treats their CIDP. I am just interjecting a consideration for any newbies that might check this thread that properly tapered prednisone does not necessarily give you diabetes, glaucoma, caratacts or osteoporosis. I have my blood sugar, eyes and bones checked regularly. I do take Actonel and vitamin supplements. I take the best care of my self that I can since I am forewarned of the risks of prednisone.

And when prednisone stops working I can go down the list of other treatment options.

Because CIDP is a rare disease we all owe it to ourselves to be actively informed and involved in our treatment decisions.
Flossie

Miami Girl,

I am so sorry to hear of your dreadful experience with the new doctor. Unfortunately you are an example of how important it is to find a health team that “fits”.

But I don’t think you should beat yourself up over trying to find a less expensive long term treatment for your CIDP. Every patient is different and you had no way to know that prednisone would be so bad for you in particular. I am not in a position to say money is no consideration either. I am deeply grateful to be a “cheap date” for whom prednisone works at this time.

Welcome to the forum,
Flossie

Hi

Thank you for your encouragement. My IVIG infusions really did help me,
however, my new doctor said they weren’t stopping the progression. I
have read a lot about the side effects…my first doctor had me on Predi.
for one month only…then I was off. I went to the new doctor and every-
thing went down hill…unlike IVIG, where I never got weak, fell, or could not
hold my urine, couldn’t even move my body. I wish there were something
to stop this…I had lost my taste, to every food.

Now, I’m going holistic…Chinese herbs. Eating healthy with whole foods, by
Paul Pitchford, $35.00, talks about lack of b-12, spirulina, foods to stay
away from, etc. I hope it works…I use to be so active, then in my 40’s
my foot dropped, then I walked with a wheelchair, now I don’t leave my
house, except to go to the food store with my sister. It’s such a stupid
disease, I’d rather have something that could be cured.

I won’t go PE for anything, too intense…but steroids shut your body down
and that is dangerous. Spirulina gives you anti-inflammatory protection
from natural sources and builds the immune system…I also take a Probiotic
for flora in the intestines for absorbtion…steroids do not allow you to
absorb most nutrients from food. They are synthetic, not natural.

This forum is great to see the different results from each case. I’m stopping
the Predi. cold turkey, my body cannot tolerate it.

Miami Girl

Ack!! I understand you want to get off steroids. They certainly were not your friend.

However, you must wean from prednisone – not go off it cold turkey. Insist your doctor give you a safe taper schedule to follow.

—————————————————
[url]http://www.classkids.org/library/pred.htm[/url]
Q: Why must prednisone be weaned slowly instead of just stopping abruptly?

A: The adrenal gland, which makes natural steroid hormones for the body, is suppressed by long term prednisone administration. Due to inactivity, it may atrophy (shrink). Since some steroid hormones are necessary for life, abruptly stopping prednisone may leave one without any steroids at all, a life-threatening condition known as “Addisonian crisis.” The symptoms of this are low blood pressure, nausea and vomiting, and severe weakness.

Given time, if the adrenal is stimulated to produce steroids by gradually reducing the dosage of prednisone, it will usually begin to wake up and produce natural steroids in most cases.
————————————-

I applaud your determination to eat healthy foods and to do research into supplements. You may be interested in my post from May 20, 2006:
[url]http://www.gbs-cidp.org/forums/showthread.php?t=126&highlight=supplements[/url]

There are a lot of other posts from folks who have also tried non traditional methods to help with their CIDP symptoms. There is a search button at the top of the thread.

Good luck on your SLOW escape from prednisone,
Flossie

Flossie

My dr did give me a weaning amount of 60mg every other day, however, in
the hospital, I got a 3 bag drip infusion that was 3 times stronger because
I was acute. Well, I was acute due to my dr. so now I’m on the 3rd day of
no meds except potassium. I’ve thought about, maybe, taking 40mg of
Predisone every other day…I just don’t know. It will be two weeks before
I can see the dr – you would think that I would be able to get in earlier.
After all, he dropped the ball on the IVIG infusion I called for. 🙁

Miami Girl

Miami Girl,

You really NEED to get professional advise about your prednisone taper – especially since it makes you so sick. Your new doctor sounds worse than a jerk. However someone at the clinic should be able to give you a safe taper schedule over the phone. Or perhaps your pharmacist can call for you.

Here is the standard taper taught to WUSTL medical students.

[url]http://www.neuro.wustl.edu/neuromuscular/antibody/pnimdem.html#cidprx[/url]

o Prednisone: 60 to 100 mg/day p.o., then taper
+ Start taper after: 3 to 6 months; or clinical improvement begins
+ Taper slowly
1. Initially by 5 mg on alternate days q2 to 4 weeks until 80 mg and 10 mg
2. Then by 2.5 mg on alternate days q2 weeks to 80 mg and 0 mg
3. Then taper high day dose by 5 mg q 4 weeks until 40 mg and 0 mg
4. Then by 2.5 mg q4 weeks
……………………………….

Because I have been on steroids so long I am a fanatic about sticking to my neurologist’s instructions. I hope someone else with prednisone experience similar to yours can give you better guidance about stopping. Maybe you should start a thread of your own in order to get their attention.

I am packing for a 2 week vacation so I may not be back on line again for a while. Please, please, be very careful about reducing the prednisone.

Flossie

Hey There

Wow, a vacation for you…that is really nice. I hope you have a great and
relaxing time. Enjoy it.

The reason I’m hesitant to resume the steroid is that 5 years ago, with my
first dr., I was on 60mg and stopped taking them…he was so angry, but
nothing happened to me at all. Today, I feel so much stronger, have better
transfer lift from my bed to the wheelchair, can get to the bathroom on my
own, can do PT exercises. I’m taking Spirulina tablets, high in pre-digested
protein, carbs, minerals…they are anti-inflammatory and the author that
wrote the book I suggested to read, says works better than steroids, on a
natural level.

I read your post back in 2006 about the vitmins…but as long as you take
any steroid, you deplete your body of calcium…thus, weakened bones.
You sound like me, always searching and learning. LOL. 😀

Steroids inhibit any form of calcium absorbtion.

The book is Eating Healthy with Whole Foods by Paul Pitchford. It was
recommended to me by a Holistic dr. She also gave me accupuncture needles. She also said to take a probiotic tablet for flora in the intestines
where our immune system is. I take a vitamin from Anabolic Labs that
are only sold in hospitals. I also take a B-12 sublingual, even though the
actual shot is the best.

Well, I’ll start my own thread soon, I apologize to Sheila….Flossie, have a
great vacation…I can’t wait until you are back…

Miami Girl

Interesting topic and one dear to me:D
I am a relapser and haven’t required treatement very often in the past 11 years. Initially I was offered steroids and refused them and had IVIG, next relapse IVIG didn’t work but Plamasmaphoresis did – on each of these occasions it was pointed out to me how expensive in $ terms these treatments were – however I said I believed that the costs in side effects and to my quality of life not to mention, the mental effects with dealing was higher.
Earlier this year I had what I call a ‘significant’ relapse that required treatment – neuro whipped out his prescription pad and started writing without ANY discussion – red rag to bull here ’cause I am all about making informed decisions – no discusssion!!!. I very quietly and calmly stated that sterioids were not on the top of my list for preferred treatments at this time – that put the brakes on pronto and speedy organising of IVIG course which I have to say did the trick -phew!:cool: On follow up visit neuro stated that the 500mg once week oral steroids would be his choice if I relapse again – again I raised some side effects which could affect me I have several but eg I have catarracts he said he didn’t think that they would be a problem naughty I know but I had discussed this with any other Dr and he had advised me that in his experience they would deteriorate rapidly and affect my vision but hey you can get surgery- Unfortunatley the specialists are so focused on ‘their’ area of our bodies that we have to be the gatekeepers to the rest of it.
I have since been to see my GP – he is interested in ALL of me and have arranged to get all the information that I need about how the steroids would affect me so that if faced with the decision I can make an informed decision –
sorry really got on my soap box here but it is not just about $ – we need all the facts so that we can make the right decision for ourselves and ’cause we are all very different what we chose or what works for us will be different for different individuals.
phew feeling better getting that little vent out
thanks for listening:D