Update Low Dose Naltrexone

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edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/1/2009 5:53 AM (GMT -7)   
Hi Everybody,
 
Today is day 31 on Low Dose Naltrexone (LDN)!  I am feeling better, no my days are not pain free! Its MORE BEARABLE!  I am able to do things that I have been unable to do for 9 years!  I actually went to the Grocery store by MYSELF and enjoyed the trip.  Usually one of my daughters has to go with me because after 1-2 aisles I am done in.  Last night I went out with my husband and made it 3 hours and had a wonderful time, its been years since I could go with him to meet friends for dinner and fun. 
This morning I woke up feeling like crap as usual, took my PM and feel pretty good right now!  I can tell you over the last years if I did venture out for an evening, I was so uncomfortable and could only think "when are we going to go home", the next week I usually spent the days in bed MISERABLE!
I saw my PM Dr. on Tuesday and he was very excited to hear that some days 3 pain pills keeps me going!
Small changes but HUGE in my world.
If this is the best it gets for me, WOW I am so GRATEFUL!!
Just had to share some good news for a change!
XXOO
Patti

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 5/1/2009 6:11 AM (GMT -7)   
Good news Patti! I am glad that this is working for you. It may help others down the road to know that this is an option.
You can do my grocery shopping for me, I hate it! LOL I also have to take someone with me, by the time I get from the handicapped parking to the doors, I can barely stand up. And using my wheelchair doesn't work either since I can't push the cart that way.
Anyway, I am glad that you were able to enjoy a night out with your husband! He must be so excited to see how this is making it easier for you to join with him on outings again.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/1/2009 12:14 PM (GMT -7)   
Patti,
That's great! I can't remember - but do you have any neuropathic pain (mine is not due to diabetes). I just wondered how the LDN did with nerve pain, or pins & needles symptoms, if you have any.

Sounds SO wonderful - that notion of going out for a few hours and not having to squirm and wonder when you could take your next pain pill or when you could get home to lie down. Most people wouldn't understand the freedom that gives!

PaLady

Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 5/1/2009 1:07 PM (GMT -7)   
I really wanna try LDN when I've finally get off of the Suboxone, but that might be a while since right now the suboxone is working for my pain, but I really wanna be off of narcotics someday cause I cant stand the side effects of narcotics. I go to see the doctor that prescribes my suboxone this next Tuesday, and since he's an addiction doctor, I'm sure he has alot of experience with naltrexone, and I wanna see if he has any experience with it being prescribed in low doses for pain. Does the LDN have to be special made or ordered?? And do you know around what the cost of it is? I'm sure my medicaid will not pay for it since they dont like to pay for anything that costs more then ten dollars. Well I', happy your not in as much pain, I hope it keeps working for you.

-hellokitty
26 years old, single mother of 2 children, 7 year old girl and 9 year old boy
DX-Lower back pain, Arthiritis, Migraines, Raynald's Phenomenon, Depression, Anxiety/Panic Disorder, Bipolar Disorder, Pancreatic Divisum, Chronic Pancreatitas, Fibromyalgia
Meds- Suboxone 16-24mg daily, Cymbalta 60mg, 100mg Lyrica, Ventolin Albuterol Inhaler, Advair, Imitrex 100mg, Ibprofen 800mg, Phenergan 25mg, Hydroxizine 25mg, Biofreeze
Surgeries- Gallbladder removed 1998, Stent in Pancreas 2003, marsupilized bartholin gland cyst, countless upper GI scopes and ERCPs
Pets- 3 degus named Pricilla, Aster, and Shorty, one female rat named Sassy, one male rat named Squeeky who's brother died on 4/18/09 and was replaced by a baby female Guinea pig name Rosalina, a baby black emperor scorpian, and a corn snake named Precious
"Never go to a doctor's office whose plants has died."
 
 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/1/2009 7:14 PM (GMT -7)   
Patti,

I am so happy to hear that the LDN is working well for you & you are feeling so much better!!! I doubt if we'll ever find anything that takes away our pain completely, but just to be able to regain some of your function and some small part of your life back is something to be overjoyed about! I am so glad that this medication has made that difference for you! Keeping enjoying your relief, but be careful not to overdo it!

hugs,
Skeye

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 5/1/2009 7:23 PM (GMT -7)   
edt
I am so glad to hear this is working for you! You might not ever be 100% pain free, but every little step closer is a huge improvement! And it does sound like you have made a lot of steps!
Good Luck to You!

White Beard
  I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/2/2009 6:55 AM (GMT -7)   
Hi Friends,
It means so much to me to be able to share this with all of you, you truly are the only ones that understand what this progress means!!  My husband, kids and best friend are more than excited.  Most of my other family and friends say thats so nice to hear, they don't really understand what WE live everyday.
 
PALady, yes I have severe nerve damage in both legs and feet with Lympaedema in the left leg....it has helped the tingling, last year I had a severe reaction to Lyrica so I have had quite the time since then, the one thing that has helped take the edge off  is a Homeopathic ointment and Chewable tablet called Traumeel or Traumed (same thing) this is available in Healthfood stores!  Since starting the Naltrexone the tingling is better, still there but different...I am more aware of the numbness....I don't know if this happens to you but I fall for no apparent reason, we joke that I am a professional faller, but seriously its very scary when this happens!  I'm told its due to the nerve damage!  Also, the LymphE is about 75% better, this alone is amazing...I may be able to wear shorts in public this year, if anyone has this the affected limb can get very big and lumpy with fluid and redness (DISGUSTING).
Kitty, when I approached my PM Dr. about LDN, he did not know about it, he went to his computer right away, came back and said DO IT!!!!  It is a compounded formulation 3.0 mg. there are 2 pharmacies that make it....I was told the NY Pharmacy was better because they are involved in documenting the research, so I chose to use them, Park-Irmat Drug Corp. 212-685-0500.  I spoke to Marcy (Pharmacist) she was able to answer ALL my questions, she also gave me her email address.  Its costs $35 for 30 pills the dosage is 1 at Bedtime.  Compared to what I spend every month for all other treatments this is a bargain.  She told me you usually know within 2-3 weeks if it is going to work for you.  She was right I did notice changes within the 1st week, took 45 min. vs. 2 hours to be able to move!  I bet your Dr. knows about Naltrexone for sure!
Sandi, Skeye, WhiteBeard thank you always for your support....Sandi let me know what you need from the grocery store I'll be happy to get it lol.  Skeye, I am being very careful not to over do!!
Will keep giving updates every few weeks...I think its worth the try and the fact that you know quickly if its for you makes the investment worthwhile!!
Hope we all have a Low Pain Day!
XXOO
Patti 

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/2/2009 7:01 AM (GMT -7)   

P.S. Kitty, the goal would be to be able to get OFF pain meds, BUT that may not happen, LDN is successful if the pain level is reduced, pain med dose can be cut down OR if pain level is reduced and current PM dosage does not need to be increased!  There are people who are able to discontinue pain meds, wouldn't that be a MIRACLE....however, my personal goal is to reduce both pain level/PM.

XXOO
Patti


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/2/2009 1:27 PM (GMT -7)   
Patti,
I'm very curious about all this, especially anything that could help the numbness and tingling in my feet (non-diabetic neuropathy). I'm on neurontin now, and I know if I'm late with a dose the symptoms really scream at me. Also I've noticed when my SI joint is out of place (which it is now) that makes the symptoms in both feet 10 times worse. PT & I can't figure that one out. I know I'm putting on a lot of weight which isn't helping, but I've also been eating lousy and of course am far less active since I'm only working a couple of hours a week.

I wonder if you can try LDN with neurontin and see if it helps and maybe wean off the neurontin. Oh, how I'd love to get off of that! The opiods don't dull me as much. My cousin's a pharmacist so I'm going to ask her some of these things.

Also - the falls. Has anyone ever mentioned foot drop to you?

PaLady

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/2/2009 2:40 PM (GMT -7)   

PALady,

Yes, my PT thought I have Foot Drop, they truly never made an official dx....also considered was RSD....Dx is Peripheral Neuropathy undetermined etiology, the Peroneal Nerve is permanently damaged both legs, its been 5 years since the diagnosis.  While working I reached for a patients foot and felt an electric shock go up the spine, immediately felt a quarter size area of numbness in the buttock.....over the next few months it was in both legs but I feel the left is worse, on the EMG it shows the right leg nerve is worse? Go figure.  MRI shows disc bulges but no evidence of Spinal cord compression.  Sooooo they say etiology undetermined.  Several NS and Neurologists said when the CS ruptures occured there was permanent spinal cord injury that doesn't show sometimes for years.  The severe unbearable pain, snake like creepy crawly feeling stopped after about 3.5 yrs.  The tingling is there and pain, if I over do (don't know exactly what I do) it flares to an unbearable level.  Since LDN, haven't had it reach that unbearable level, but I am very aware of how numb they are!

I do some PT exercises in front of the mirror, while looking at the feet, it connects the brain to the limb.....sounds wierd but it works.  Even though I do these, if I walk too much I start to drag the left leg.

Chronic Pain is a reason to try LDN, from all the research and questions I have asked there are NO side effects except MAYBE nausea when first starting the LDN.  I did NOT experience any at all.  I did have severe fatigue every day around 2 but that stopped last week.

As I said they told me you know within 2-3 weeks if LDN will work for you.  With that in mind, I truly think this is worth the try!

Great that your cousin is a Pharmacist, if she needs more info I posted Irmat's number, I'm sure she can call them if she needs to!  They are very available any time I call and open 9-5 EST.

XXOO
Patti


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/4/2009 6:17 AM (GMT -7)   

Yesterday, I went to a BBQ (can you believe this 2 events in one week) anyway, I met a woman who is in CP from a horrible motorcycle accident 8 yrs ago!  She has disc bulges and nerve damage, suffered many broken bones.  We were chatting and guess what?  Yup, she is on LDN for the last 3 months.  It is working for her too, I was so excited to hear this news!  I felt euphoric while talking to her...what are the chances of this happening?  I also told her about HW....she said like me she had changes within the first week!  I am even more hopeful now!

XXOO Patti


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/4/2009 7:20 AM (GMT -7)   
I didn't catch it.

If on opioids (methadone/morphine in my case), can you or can you not use LDN?

I realize it may still work or not, but is there danger taking the two together?
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/4/2009 6:12 PM (GMT -7)   
Wow, Patti! That is fantastic! What are the odds that you'd meet someone else on LDN?! I may have to start doing some research on LDN myself! I finish up the semester at the end of the week, so then I'll have some "free" time on my hands.

Skeye

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/5/2009 6:41 AM (GMT -7)   

Tony,

When you read the research, it is recommended to D/C Pain Meds....when I questioned this my Dr. and the Pharmacist told me no, stay on your regular dose of PM...as you begin to feel better then you start to cut back!  I am working with my PM Dr., he told me even if I stay at this dosage and it controls the pain, it is successful.  I did not find out about LDN from my PM Dr., but made an appt. when I was told of this, I take the pain contract very seriously (if I was going to be changing the dosage I had to have him involved).  He had never heard of using LDN, while I was in his office, he pulled up the data on Google and said GO FOR IT!  He and my other Dr. are documenting my progress, there are thousands of people with CP currently taking LDN.  The statistics so far are promising.  Like all other meds everything doesn't work for everybody, but, it is will worth a trial in my opinion!  My sister from PA is visiting and is an ER Nurse, when I told her yesterday I was on LDN, she said they have seen several people taking it and she's heard positive feedback!

You can call Irmat Pharmacy in NY, they are more than willing to answer questions!

Hope this helps!

XXOO
Patti 

 


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/5/2009 2:36 PM (GMT -7)   
Thank you, Patti.

As far as the contract I have with my PM, I, too, take it as seriously as any legal contract (whether it is, specifically, or not).

No, I don't go outside my established doctors unless they refer me to someone. Nor do I take or try to get to take, any medicines outside those doctors. At this point I don't even take any OTC medicines other than external application stuff for cuts and such. I"m not interested in a reaction to one of my prescribed drugs and an OTC drug that we had no idea there was an interaction with. (OTC ok'd by a doctor can have an interaction as well, but at least there's a better chance it has been checked out if the doctor is the one giving the ok - IMO).
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/5/2009 9:40 PM (GMT -7)   

I'm with you on everything you said!  The Dr. that told me about LDN is my old employer and family M.D. he is also a Homeopath.  He is always hunting for an answer for me, I worked with him for 21 years...it was a sad day when I couldn't do my job any longer cry    His and my dream is to get me feeling well enough to return to work.....THAT would be a miracle, I never give up hope!

XXOO
Patti


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/14/2009 11:40 PM (GMT -7)   
Bumping up for Popsie.

PaLady
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