New treatment for FMS/CFS?

[thester6474]

I see that LDN (low dose Naltrexone) has been successful in its trial in both FMS and CFs, has anyone tried this yet?  I go see my PCP Wednesday afternoon, and I will ask him to prescribe that.  If you have tried this, let me know, if not I will inform you how much it helps, that is if it helps.

[thester6474]

Here are a list of some that will provide a script for it.

http://www.ldners.org/resources.htm

There was another one I saw the other day, as soon as I find it I will let you all now.  

[katiedidit]

I called my fibro drs nurse to get a rx for this, it sounds so promising, and after checking with him she said he will not prescribe it.  I asked why and she said it was just something he didn't prescribe.  I wonder if I should call my PCP to get the Rx.  Any suggestions.

[thester6474]

No, today was day three.  I started Friday night.  I take 4.5 mg nightly, he doesn't really know much about it.  He actually had to look it up, the prescribing dose.  He was going to give it to me as a shot, and I refused, saying that it does come in pill form now.  Once he saw that, he quickly wrote the script and told me to keep him posted.  He also said that he wants to see me in a month.  You have to go to a compounding pharmacy, there is one online that you can order from and they will ship it to you at a small fee.

[VaBreeze]

Did you just begin the treatment today?   I had read about possibly having to order the dosage because many drugstores are able to produce the required amt.  What amount has your doctor started you on?  I'm really interested in your progress and thoughts about this as you go along with your treatment, and I know others are as well.

We wish you the best and pray it works out well for you.  Thanks for you update.  

[thester6474]

I got LDN in liquid form, it doesn't taste the best, but I am just glad to have it.  My pharmacy is a small locally owned and operated one, and they have no experience with this drug.  If you have ever taking liquid cough medicine, you can in fact handle this taste.  I always have a chaser nearby, be it Powerade or Orange Juice.  I did however find a pharmacy 50 miles away that can compound it into gel and capsule form.  A 90 days supply costs $65.00 before insurance, which is not bad.  I am just tired of being down and out, and feel like if this medicine can help slightly then be it.  We just have to remember to be our on advocate, that no matter how good and/or caring your doctor can be, they cannot feel our pain.  They cannot understand our need for relief, they are out there, it just takes a little work finding them.  And I am willing to do whatever it takes.  Another positive thing about Naltrexone is the fact that it does not result in weight gain.  Most drugs used today to treat it have the opposite effect, much weight gain.  One website I found said prescribed with an Antidepressant, it can be used for weight loss as well.

[zippazappa]

Hello  after reading your comments on this LDL i am very interested as to how you get on with this treatment and i wish you the very best of luck. it has infact given a little hope to us all on here i think!
its without a doubt helping people enormously with ms and other chronic and autoimmune disease. It makes a lot of sence as to how this could work for fibromyalgia patients, and good enough its avalable in the uk. so please let us know how your getting on with this

take care

[VaBreeze]

I was researching about this drug and two important factors came up:

One article mentioned that you must specify that you do not want the long acting dosage (or time released) and another was regarding the use of Ultram.  If you do not have the Ultram (and other pain meds) completely out of your system, prior to taking this drug, you will have serious withdrawal effects.  

Just wanted to share this with anyone considering using this. It does sound promising for treatment.

[PlateletGal]

Good luck with this new prescription medication ! I'm focusing now on trying to cure my condition and having success so far.... but healing is long and not easy sometimes.

Wishing you the best... keep us posted !

~PlateletGal

[patsy10]

I have heard of this drug being used for MS as well with some good results.

[thester6474]

Appendage to earlier messages.

This script is covered by my insurance however, I just have to file a paper claim.  I will keep you informed of its effects both positive and/or negative.  I did get a claim form, and will proceed with filling it out and its mailing.

[thester6474]

My pharmacy was finally able to fill my prescription today, had to order the ingredients needed to compound the drug.  It cost $35, though they messed up my prescription, only giving me enough for half a month without insurance.  The more you order, the cheaper.  It can be compounded into liquid form as well as capsule form.  My pharmacist was unable to compound it into liquid form, because of inexperience.  However I did find a pharmacy about 50 miles away that quoted me a price for a 90 day supply of capsules for only $65.00.  It is covered by my insurance however, I just have to file a paper claim.  I will keep you all informed of its effects positive and/or negative.

[kiddthekatt]

Hi there;
  Good luck and please do let us know how it works. It would be a blessing to find something that really and truely works.


gentle hugs
Angel

[thester6474]

As of today, I will be starting treatment with Naltrexone, my local pharmacy had to order the compounding ingredients.  I really hope to start seeing a change in my condition along with the IBS symptoms confirmed by my doctor yesterday.  I will keep you posted weekly on the way I feel during treatment.

Here are a few of the reviews I came across during my research last week:

A.

User ratings and reviews of Naltrexone for Fibromyalgia syndrome (FMS)
View by: Most helpful — Most recent — Highest effectiveness

Rated Naltrexone for Fibromyalgia syndrome (FMS) product

4 of 6 people found the following helpful


Perceived effectiveness: 9

9 9.0 Based on scale of 0 to 10  Tolerability (higher=less side effects): 9

9 9.0 Based on scale of 0 to 10  
Ease of use: 10

10 10.0 Based on scale of 0 to 10  Would you recommend?: 9

9 9.0 Based on scale of 0 to 10  

Comment
Low-Dose Naltrexone (LDN) I'd been suffering with unbearable wide-spread pain, fatigue, brain fog, costochondritis (it felt as if I was being gutted like a fish,) IBS, cystitis and was very despondant after trying a multitude of therapies that seemed to do little to help any of my fibromyalgia symptoms: (Neurontin, Ibuprofen, Paxil, Cortisone, Amitryptiline, Acupuncture, Nabumetone, alternative healing.) I really did not believe when my Dr. prescribed the LDN that it would work. Very quick results. Felt a huge improvement with-in 2 weeks. In six months progressively got off of nearly all of my medications...and the best thing is I was able to finally FUNCTION (returning to work, remembering things, and extremely manageable as opposed to excruciating pain.) It doesn't totally eliminate everything but it will make life liveable again. Plus it's really inexpensive, and makes me sleep great without being groggy the next day.

B.

Rated Naltrexone for Fibromyalgia syndrome (FMS) product

1 of 1 people found the following helpful


Perceived effectiveness: 8

8 8.0 Based on scale of 0 to 10  Tolerability (higher=less side effects): 8

8 8.0 Based on scale of 0 to 10  
Ease of use: 10

10 10.0 Based on scale of 0 to 10  Would you recommend?: 8

8 8.0 Based on scale of 0 to 10  

Comment
Low-Dose Naltrexone Highly recommend trying for anyone with Fibromyalgia. You've got nothing to lose and possibly a lot to gain!

My doctor and I are really interested in learning the effects it can have on my condition considering that the FDA drugs approved really didn't do much to help me, only made me gain weight, feel more depressed and more groggy.  He insisted on me coming back to see after a month on this script.

[scaredmom330]

I would be interested in know what you find out and how it works for you. take care and please keep us posted

[VaBreeze]

I can see where it's been used off-label for experimental treatment of certain immunologically-related disorders.  I have not heard of it previously, nor tried it.  Yes, please do let us know how it works for you.

I hope that it will help.  Take care.