Naltrexone for MS and Prednisone

[grannyhotwheels]

Hi all,

I still have'nt started the naltrexone yet.  My doctor also started me on prednisone and wants to make sure that there are no side effects from that before starting the other.  I can understand that.

I am taking 10mg daily of the prednisone.  Is this the normal amount that is usually given?  When I took the 6 day trial run of them I felt alot better, but since I've been on the daily 10mg dose I can't really tell a difference in how I'm feeling.  Does anyone think that 10mg is to low of a dose?

I will probably start the naltrexone in a week or two.  From what I've been reading about it, I think it's some kind of wonder drug.  If you would like to learn more about it go to:  www.LDNers.org   /   www.lowdosenaltrexone.org  and  www.lowdosenaltrexone.org.  

If anyone can help me out on the steroids I would appreciate it.  I hope everyone is having a low pain and a good day.

Carol  (OK)

PS.  My doctor said that since I have auto-immune disease that it means I have symptoms of several diseases not just MS.  Do you believe this.

[Quixotic1]

This is a 2 and 1/2 year old post.  Carol was not taken off her narcotics before the doctor gave her LDN.  She ended up in the ICU with a stroke.

Quix

[baddad01]

Granny I have had a horrible run around. after 10 years of looking one doc finally treated me with IVIG for CIDP got me well and sent me on my way. several years later the symptoms began to return gradually and waxed and waned, after a couple of years I was taking priscription anti inflams, went back to the dock and he missed the boat toatally, put me on supplements and never looked for MS. ( months later I had a major attack and got real lucky and found a good neurologist got two iv prednisone treatments befor I started feeling better 3 days later got two more. Now tapering and just dropped from 60 mg/day to 40 and starting to feel tired again with a little back ache. Now I have a new ins company and a new doc who seems to think that because he cant see or feel any weakness Im ok, Im a very strong farm boy ...47 now and My bowls dont move well, my vision is horrible comes and goes, below the waist my feeling is poor and patchy and I cant get another appointment untill they find my mri disc. So dont let the doc rail u into what aint working for you, go up untill you get results. I am supposed to continue to taper but I refuse to drop any further until i get something else going. they can just prescribe more when the time comes. Feeling pretty good so very hopefull. Best of luck.

[Quixotic1]

I did suggest a way to approach your doc about the dose in the "apology post" above.  I think phrasing it that way will not make it look like you are challenging her.  It's the last paragraph.  Quix

[Want to feel well!!!]

Very well put!!!!

[grannyhotwheels]

Oh my gosh!!  When I read your post this morning I could'nt believe it.  Under no circumstances am I upset at you.  Yes, it caused me concern about the dose of prednisone I'm receiving, but that's all.  I still have the utmost respect for my doctor and I'm sure she has a good reason for it.  I just thought that you might think of a better way to approach her about it.  A way that would not make me look like I did'nt trust her judgement.  

Quix, I value your input, and your knowledge.  I ask for help from you as a doctor, but more importantly as a friend.

Wanna is right in saying that your beating yourself up over it.  I did'nt take it that way at all.  You are a big inspiration to everyone on here and I hope that never changes.  Donating so much of your time to us and still suffer from MS like you do is a very unselfish act.  I do hope that we make you feel appreciated for everything you do.

Thank you,

Carol (OK)

[Want to feel well!!!]

Quix, you seem to be beating yourself up over your comment to Carol, but it doesn't appear that she interpreted your comments as you felt she did.  

Carol, am I reading your post correctly?  Yes, you are concerned about the disparity in opinions, but if I am reading you correctly you are not upset with Quix, right?

Quix, you do so much to help us here…above and beyond what most would do.  You like helping us because medicine is your passion and there isn’t anyone here who would fault you for stating you opinion!  

Wanna

[Quixotic1]

Wanna may be totally correct.  Perhaps this is a longterm low dose that, it "itself," is not meant to be therapeutic. This means that the prednisone is not what is intended to help you feel better, but to play a role in the overall therapy.

Thank you, Wanna.  Tomorrow I will learn something about this therapy.  Quix

[Quixotic1]

I am so sorry that I upset you!  Oh my, I forget how powerful words can be online.  I have placed doubt about your doctor in your mind and that was a very bad thing.  My actual words about the dose of prednisone were true.  10mg is a very low dose and one I would use in a small child, the dose to use as an anti-inflammatory is 1mg for every 2 pounds of weight.

Your doctor has a good reputation, and you have cofindence in her.  That is far more important than having confidence in me.  Remember I was just a pediatrician and I am 7 years out of practice.  I don't know anything about Low Dose Naltrexone.  Perhaps a low, ongoing dose of prednisone is part of that treatment.  Perhaps that's her very intent.  I had no right to cause you to doubt  her, and your frustration and anger is justified.

I am worried about how quickly you have deteriorated.   I want you to have the best treatment possible.  I do know that when MS is so rapidly progressive many of the more traditional meds do not help.  I don't understand the LDN, so I should not even comment on it.  I do think you should call your doctor and tell her that, although you felt better on the "6-day trial run" you have lost that improvement and wonder if the 10mg is high enough for you.  She needs to hears that.  Maybe that's okay.  

In the more traditional treatment of MS which often is not effective in progressive disease the dose of steroids used is 1000mg a day and is given IV for 3 to 5 days.  The equivalent dose of prednisone would be about 850mg and no one could tolerate that by mouth.

Without challenging your doctor let her know that 10mg doesn't help you as far as you can tell.  Ask if it was supposed to.  Maybe it's just an adjunct therapy (supportive) for the LDN and just helps the LDN do it's thing, but doesn't itself treat the MS.

Again, I am so sorry.  Quix

[Want to feel well!!!]

I posted the above to you also but it isn't showing to granny and QUix.

[Want to feel well!!!]

Don't know if this will help but after my mother-in-law had her liver transplant, along with her medication to suppress her immune system she was taking 10mg of prednisone per day for several years, then she went down to 5mg for several more years.  A few years ago she was concerned that the prednisone would harm her bones so she asked to be taken off of it.  She regrets that decision.  She said she now knows what it feels like to be 65 years old!  That little amount of prednisone made a huge difference in how she felt.  She immediately started having aches and pains she had never had before.

Perhaps the small amount is used for long term?  Just a thought.

Wanna

[grannyhotwheels]

What should I do about it?  Do I tell her that one of the greatest doctors I know who just happens to be retired told me that he would give 10mg to a baby for an asthma attack?  

I'm not joking here.  How do I approach her about it?  She knows that I'm not smart on all of this and she also thinks that I read to much on the inter-net.  I'm always telling her that I read this or that about MS.  She usually just laughs and says you can read anything you want on the inter-net.

It's apparent that I need to start at no less than 40mg of prednisone, or I'm wasting valuable time.  I don't have time to waste.  I see myself going down a little more each day.  She called me today and I will be starting the LDN on Monday. It will probably be to low also.

Quix,  I trust your judgement completely.  Do you think she is being to cautious with me?  Should I look for someone else?  Then I would have to start all over and waste even more time.  I'm so upset right now.  Please help me.  Tell me what to do.

Thank you so much for everything you do for not just me but everyone.

Carol  (OK)

[Quixotic1]

10mg of predisone is nothing at all.  I would give two year olds that for an asthma attack!  It will likely have no effect at all!  Maybe she's just giving you a taper, but I question even the usefulness of 10mg for a taper.  My fear is that she is being too cautious and is causing you valuable time.  

The smallest dose I would use on a serious disease in an adult would be 40mg.

Her comment about having symptoms of several diseases is possible.  People often have more thaqn one autoimmune thing going on, but I hope she's not using that belief to let her analytical thinking be loose to explain everything.

She probably is working from a protocoal I don't understand.   I WILL do some reading and see if I can get a better feel for what her intent is.

Quix