Starting Low Dose Naltrexone tomorrow

[Carolina]

Dearest Sjogren's Angels,

I had an extensive and very helpful consultation with a great doctor as Duke Innovative Pain Therapies.

The doctor is having me start on Low Dose Naltrexone.   I had heard about this, here, earlier in the year.

So any feedback from my Angels?

I am so encouraged by the possibility of help from LDN, since I cannot take any of the opioids (which turn out to be limited in value and are completely discouraged by doctors), and I developed ulcers from my beloved Aleve, and Cymbalta began causing impossible side effects at the end of 6 years of perfection.

So LDN is the first medication I will try. 
In addition this doctor has other possible treatments:
especially for my 'wrecked' cervical spine - medial branch blocks: injections, not surgery.
return to use of Tumeric,
use of CBD oil on my neck,
trial of Lyrica instead of Gabapentin, or Vimpat (what is this?),
Celebrex (deja vu!),
Omega-3 therapy (I take Omega 3 fish oil, but is it the right one?)
The YouTube site for Dr. Daniel Clauw for coping strategies

I see him again in 8 weeks.  So I have lots of things to investigate, and I'm feeling more hopeful than I have in ages.

A doctor who listens, takes notes, give amazing feed back, and exudes practical confidence is an amazing find. 

Hugs,  Elaine

[SjoDry]

Elaine,

I will never be without LDN again! I started on August 22nd. I actually went through withdrawal of all opiate pain meds to start LDN (which I had been on for years). I researched this drug extensively. Of course I was so positive that I would be helped so much that I quickly tapered off of my Prednisone & stopped my Plaquenil. Hmm, not so fast. All of my pain in every area came back. So I went back on my Plaquenil at my same 400 mg dosage and on my Prednisone at 7.5 mg.

At 1.5 mg, I did not notice much change. At 3 mg, I felt much less tired. I then went up to 4.5 mg where I continue to stay. I have had some G.I. issues (which may or may not be related to the LDN). Since I was not sure, I am now getting my LDN compounded as Troche's (losenges which dissolve under my tongue). I never got any vivid dreaming (which can be a side effect). I have had some wakefulness. When you take the LDN, it turns off endorphin production for 3 or 4 hours...when it kicks in, it can wake you up. This is easily handled by lowering the dosage, or what I do (take a Magnesium pill at bed with my LDN).

It has helped my pain, but it has helped the most with my huge fatigue. Between the Plaquenil, small dose of Prednisone & my LDN, my pain is fairly well managed now. I truly have not felt this good in years. I am so glad I took the plunge to start it.

If you want to read more about it, please visit the following:

www.LDNresearch.org (under resource tabs, expert interviews..particularly Dr. Burt Berkson).

Also, www.researchtrust.org (this is a site from the UK) It has conditions that LDN treats, also some presentations from docs.

And finally, www.honestmedicine.com (find the video transcript of Dr. Bihari who discusses his pioneering therapy with LDN and how it helps the immune system). It may be helpful for us with immune issues.

I am also currently researching CBD oil.

Best of luck to you.
SjoDry

[warmwaters]

I hope that you have good luck with this med. I liked using it, but had to discontinue because I also needed to take hydrocodone. I used it for about 3 years.

For me, it gave me relief with joint and muscle pain. I have a lot of pain the feels like I've been moving furniture all day, when if fact the heaviest thing I lift is a glass of water.

The protocol was a gradual increase, starting at 1 mg, going up 1 mg at a time. I no longer remember the time interval. I was fine at 3mg and groggy at 4, so 3 was were I settled. My doctor had been hoping that I would get to 5mg.   

Take in the evening.

I did have more vivid dreams, but not in a "way out there". Just help restore dreams, and restore color  in dreams, something that got lost after I had a hysterectomy.  Not disturbing, just more alive.

Best of luck!

[Carolina]

I just ordered CBD oil!  Onwards.....

Regards,  Elaine

[Carebear]

I find this topic so very informative and timely.  I didn't realize that LDN could reduce pain, in addition to the reduction of fatigue.  Because I use a low dose opioid right now I hadn't considered it as an option.

I've just begun using Gabapentin and so far it has been helpful with both my pain and anxiety.  The reduction of my anxiety came as a delightful surprise.  But I'm in the early stages of this experience, so we shall see how it goes.

I've also lined up all my ducks in preparation of being prescribed medical cannabis as a fallback plan.  Maybe LDN can be my fallback fallback!

Good luck to you, Elaine.

[Deb 27]

I sure hope the LDN works for you.  Keep us posted and let us know!