I was given this script yesterday and have to find a compounding pharmacy to purchase. I know this an off label use. I tend to have trouble with opiod meds, allergic to most and terrible side effects, many medication senstivities. I wondered if anyone has any experience with LDNaltrexone for lupus.
I just posted my first report on my experience with LDN on the Fibromyalgia board for any who may want to read, I will give updates in the use of this controversial off label use for any who may want to investigate the use for lupus. I have both lupus and fibromyalgia and multiple medication reaction issues. I just wanted to mention here as I know several are in the same category and may benefit from this knowledge.
Gold...thanks for the post on LDN. I just went off methotrexate because my liver enzymes were elevated. That's it for me with traditional treatments. Doc said after my liver was normal we'd discuss nontraditional treatments. I'm guessing he's thinking about LDN. I did some research and it seems to be low risk. Since I also have non-Hodgkins lymphoma it might be a twofer for me. What is the controversary? Why do we not hear about this?
The only controversy is that it is not FDA approved at low dosages and some pharmacies will not distribute because of that fact. By what I read, there is good results at low doses for some with MS, Parkinsons, Lupus and Fibromyalgia and some other illnesses. I am keeping my fingers crossed.
Day 2 I was not as spry today as yesterday but I took advantage of the good day Friday and probably over did it! But I rested well, no weird dreams or sleep disturbance which was one of the most common symptoms when first adjusting to the LDN. I did not have bad pain at all and even though I was tired feeling, in all it was a good day! So far so good!!!
I did find a local compound pharmacy who filled the script. I felt it was a good thing to have a local one and they did accept my insurance so there are pharmacies that will do that for patients. Just shop around.
Last edited by goldyfm; 10-17-2009 at 09:36 PM.
Reason: additional comment
I am through the first full week of Low Dose Naltrexone therapy now. I have had none of the so-called sleep disturbances as normally reported when beginning. I have had an abundance of energy and a well-rested feeling each day. Prior to this trial I had been taking 3 Tramadol a day and boosting with a Flexaril at times and usually by noon was on the couch or back in bed for a while. I have taken One Tramadol in the past week! That in and of itself is amazing! This past week has been good in that I have had a few outings, worked in my front flower bed and planted some window boxes, swapped out summer-winter clothes and bedding and actually cleaned house! I have been shopping and had lunch with a long time friend. I have probably done more in the last week than I have done in the last 6 months all together! I am very optimistic!!! I am amazed that my pain level has dramatically dropped and my overall stamina and ability to function (walk and maneuver through a normal day) has vastly improved. I have had only one day that I had to lie down during the day and that I attribute to riding in the car for some length of time. I am so elated with this possible improvement that I am even flirting with the ability to maybe be able to get out and volunteer a few hours a week. What a difference this has made.
I just want to add that this therapy has shown great promise in MS, Parkinson's. AIDs, Some Cancer patients, FMS, lupus and a host of other illnesses. It has been the topic of several studies, some trials have been done but there has not been a lot of activity as this is already a patented drug and the $$$ implications to develop at this dosage are not as lucrative to drug companies as they will not hold a patent. Please take time to share this info to anyone who may benefit from the knowledge. I know I feel blessed to have learned of this and I definitely have to thank my Rheumatologist for being at the forefront of controversial therapies and new ideas.
Had a little set back as I have an upper respiratory thing going on and feel lousy with that but still have not had to have pain med since day 2. Sleeping much sounder and otherwise okay. I remain optimistic.
This week ended on a down note. I have had a little more pain this week, mainly lower extremities, hips, one ankle and legs hurting, but I feel like it is probably the fibro. I have had a sick pet this week as well, so the relapse may be stress related and it has been cold and rainy here. I do seem to have better spirits despite the setback. I am not going to give up yet as I have read that some need to be on the medication for some time to get any results. The fact I had two fairly decent weeks leads me to believe that there is some foundation in the improvement I have seen. I will keep going on the LDN and see how the next week goes. I'll keep you posted.
I have just completed my first month on Low Dose Naltrexone. I wanted to update my progress through the last month so others who may benefit from the knowledge will have some first hand experience to reference.
I have been sleeping all through the night now and awake well rested. I have not had to lie down for a nap during the day as I was before starting the med.
I have noticed an increase in my stamina, feel more alert, less foggy since beginning. I also have had more overall strength and energy. I have actually tackled a few tasks that I had not done for several years, raking leaves for example.
I also have dramatically cut the amount of pain medication I had been taking. I have probably had 6 Tramadol over the last month total where I was taking 3 a day and boosting with Flexaril and then only taking the edge off the pain,, not relieving it as I would think it should.
I remain optimistic. I go to the Rheumatologist next month and can't wait to report my response. I may be guilty of hugging his neck.