hi gooday-naltrexone

Discussion in 'Fibromyalgia Main Forum' started by gbean, Jul 7, 2003.

  1. gbean

    gbean New Member

    Hi,
    I noticed that you sent a post out to me and others about naltrexone and I never saw it for some reason. I started naltrexone three days ago. I feel a little worse and am sleeping more. I have extreme fibro pain and fatigue. I was wondering how long it took before you started feeling better on the naltrexone. My doc said to give it four to six weeks-I wish I'd see at least a first good sign but swear I'm worse.
    Thanks,
    Gena
  2. 9974

    9974 New Member

    I tried it for a month in the form of Talwin-nx the nx for naltrexone in the form of pain medication. Made me sick. Ended it after a month.
    Good luck!!!!!
    Lonnie M.
  3. gbean

    gbean New Member

    Hi Lonnie and Bob,
    Lonnie, when u said that the naltrexone made u sick-how do u mean? Did it upset your stomach? Did it make you more tired? Wat?
    Bob, I have been to the website already-that is how I found out about naltrexone. I have been on 4.5 mg.'s for three nights so far. Right now it makes me sleep more-makes me more tired-Do u take the naltrexone Bob? If so, how long did it take to help u?
    I have fibromyalgia with bad fatigue. If gooday is out there can u tell me how long befor u felt better?
    Thanks,
    Gena
  4. gbean

    gbean New Member

    Bob,
    Sorry-I just noticed that u just started naltrexone-would u please keep me posted? I just started three days ago-no improvement yet. I have had fibromyalgia for thirteen years and bad fatigue for the last three years. I hope it helps both of us.
    Gena
  5. nickname

    nickname New Member

    I've been on LDN for about 10 days, but at only half my prescribed dose - 1.5mg - just to get used to it and to try and avoid any adverse effects. I too have experienced extreme tiredness during the day/evening, but am sleeping much deeper, sounder and almost like normal - I still need my Zolpidem which I have tried to cut back/out, but I need it to initiate the sleep. I wake up as though my body has been rejuvenated and muscles healed - it's like I used to feel when I was not ill, but I am very very tired.

    The pains in my shoulders have lessened to a very tolerable level. I don't believe I have more energy - in fact, the tiredeness is something I have not experienced since before I was ill, and is draining in itself, although I do get somewhat tired at my period (sorry, without looking, I don't know if you are male/female - apologies there). I am usually either exhausted or not exhausted - I'm sure u will know what i mean.

    I really need to up the dose to my prescribed level -3mg,- or at least to about 2mg, but I am so loathe to do it with this tired effect. I just keep hoping that something will settle down. Don't really know if this is all good or not -sleep is healing in itself, and maybe we are making up for lost time. Somebody over on the yahoo discussion LDN site also experienced this tiredenss, but it has certainly been miraculous for a lot of MS sufferers.

    Keep in touch with how u go.
    Best wishes
    nickname
    [This Message was Edited on 07/08/2003]
  6. gbean

    gbean New Member

    Hi Nickname,
    I am so upset. Today I broke ot in a rash-mostly on my forehead-so I will prob. have to stop the naltrexone. I just can't believe it. I don't have much left to try but can't live with how sick I am. I hope the tiredness wears off for u. Keep me posted.
    Gena
  7. nickname

    nickname New Member

    Dear Gena
    Can u not reduce the dose down to 1mg and build up from there? I belong to the low dose naltrexone discussion group and it seems this is the way a lot of people do it. I know if u have the 4.5mg size already it is a waste on cost to throw some away, or can u shake half into an empty capsule? I shake about half of the capsule into some empty capsules I have, and leave the other half in the original capsule for the next night. When I up the dose to 2mg, I am going to have to throw the last Img away because it is just too fiddly. It costs heaps in the UK - just got some more today - £53 can u believe, but we have to give it a good go.

    I can't really say what the rash might be - do u really think it is connected to the ldn, after all it blocks opoid receptors - I have'nt read that this would be a side effect. Side effects are supposed to be very minimal at this dose anyway. Are u on any hormones - DHEA, pregnenalone, testosterone etc? These could give u acne. Do u think u could put up with the rash and see how it goes, or speak to your specialist for some reassurance.

    Best wishes
    nickname
  8. gbean

    gbean New Member

    Nickname,
    I do think it is the naltrexone causing my rash unfortunately. The only other medicine I'm on is trazadone. I've been on trazadone for years with no problem.
    I didn't take it last night to see if it would clear up and it's already much improved.
    This is really sad because I'm getting to the end of my ropes. I've been sick for thirteen years and nothing has helped.
    After te rash clears up I may try it at alower dose like you spoke of. Also, I looked on the web for side effects and there r actually several-tiredness-joint pain-stomach pain-and on lesser side effects: skin rash :(-
    I'm sorry nal costs so much in the U.K.-let me lnow how it goes.
    Gena
  9. gbean

    gbean New Member

  10. tansy

    tansy New Member

    which is also supposed to turn around the TH1 and TH2 ratios. Sujay recommended it to me as well as naltrexone. Spacee has found it very helpful and there is a seperate TF message board on this site which I found very encouraging.

    I too get really p..... off when something that's supposed to help causes a reaction or makes me more ill.

    Good luck

    Tansy
  11. nickname

    nickname New Member

    Dear Gena
    The only other thing I can think of, is do u have the fast release LDN - it must be this and not slow release. I honestly can't find where it says that a rash is a side effect, so I can't really help anymore in that direction. The only side effect I can find at this small dose ie 3-4.5mg is insomnia. There are other side effects at the 50mg and above doses. I just don't want u to miss out on something that seems to have potential.

    Well, I am now going to do what all good Brits do in times of crisis - go and have a nice cup of tea and a chocolate eclair.

    With best wishes
    nickname
  12. gbean

    gbean New Member

    Tansy,
    I know about the transfer factor and that it has helped spacee but it is a little expensive and I've tried so many supplements that don't work-I think eventually I may try it though.
    Nickname, all you have to do is type in naltrexone side effects and you will eventually find in minor side effects under naltrexone that skin rash is possible. I thought it was getting better but have some rash again with a few hives. Also, I'm still even more tired than usual-it must take awhie for this stuff to get out of your system-I didn't have any yesterday-I appreciate ur cocern-i don't want to miss out either-but if all it does is make u tired it may not be worth it-it is supposed to give energy according to my doc-keep me posted-Gena
  13. gbean

    gbean New Member

    Tansy,
    Enjoy your tea and eclair-it sounds so good-I have gained so much weight while being sick. I'm trying to diet-
    Take care,
    gena
  14. tansy

    tansy New Member

    it was me who was having a chocolate eclair, it was nickname actually.

    Love chocolate but it's no-no as is gluten, dairy, and sugar. most of the time I'm ok with that especially when I having a better period but every now and then sighhhhhh.

    Like everyone I do have the odd cheat but the pay back puts me right back on track.

    Cheers

    Tansy
  15. gbean

    gbean New Member

    Tansy,
    sorry about the mistake-let's both wish on a chocolate eclair.
    bye,
    gena
  16. nickname

    nickname New Member

    Dear Bob
    You know from the posts that I am on ldn too, but only on half dose at the moment 1.5mg. Just today, I have found my extreme tiredness to be much reduced, although I did wake up again with this sticky tiredness. Perhaps this is my body adjusting to it. Will up it over the next few days to about 2mg. Pain in my shoulders is still lessened even at this small dose. I have severe m.e. not fibro.

    I too take Ambien 7.5mg and have done for the last 3 years, and I really thought LDN would help me to reduce/cut it out altogether, but I still need it to get me to sleep. Maybe this will change over the course of time. See how it affects u.

    Let us all know how u go with it because it really is useful to compare.
    With best wishes
    nickname
    [This Message was Edited on 07/10/2003]
  17. gbean

    gbean New Member

    Hi Bob,
    Thanks for sharing your story.
    I surely hope naltrexone can help u.
    I only took it for 3 days-got a facial rash-and have now stopped for last 2 days to see if it clears up.
    It helped me sleep better right away. I already sropped one of my trazadone pills after the first night on it. One day I slept until four in the afternoon on it. I do sleep late anyways-anywhere from 11 to 1 usually but 4 is really late obviously.
    When I searched for side effects tiredness was listed. The doctor who prescribed it to me didn't mention any side effects.
    Good luck-oh, by the way-I'm a weirdo-ambiem helps give me energy and lessen my pain-I can take 4 10 mg. and still be going-I'm a weird gal-
    Gena
  18. gbean

    gbean New Member

    Nickname,
    I thought M.E. was just another name for fibromyalgia and cfs mainly used in Australia and Europe?
    Gena
  19. Goodday

    Goodday New Member

    Hi everyone, Goodday here, finally.

    I was thinking no one would give this a try.
    I cannot understand why some feel more tired on this.
    The worst thing I felt was hyper on 4.5 mg.
    I made a new post today and already there are many more above it!!
    The name of the doctor who many people call is Dr. Bernard Bihari. Sometimes you get an assistant who can answer questions. But it is not free for a phone consultation by the Doctor, I think he charges a great deal of money for a personal phone consultation, like $400.00 for 20 minutes.

    About a rash, I am sorry to hear that, see my more recent post. This is the first time I have heard of anyone getting a rash from such a small dose of LDN.

    Or being more tired. Could it be that with some relief of pain you are getting relaxed and feel tired? I started out on the highest dose and felt hyper. Now I am on 3 mg and am thinking of going to 3.5. Too low of a dose may not be the answer. I opted for the highest and went go down from there. The extra energy was just too much since I was used to being so drug out and sick and tired. So the feeling was new to me.
    I have been on 3 mg now for 2 months.
    I don't know if the pharmacists put fillers in the meds, I hope not. They are suppose to grind the pill and make your prescribed milligrams. Check with your pharmacy. I called and wrote a letter telling my pharmacist it must be fast-acting. They tell me mine is......
    It was hard to tell recently just what my LDN was doing. I stumbled on a rock and sprained my foot/ankle so bad 2 months ago that I have been using a walker and crutches. On crutches I lost my balance and bruised my right side of my body. Usually something like that cause a flare for weeks. I only hurt about three days. But my shoulders and hands never did get used to the burden of carrying my body around...hop hop hop! The trip to the bathroom felt ten miles long. My dear hubby cooked quite a few meals for us, bless him!
    Next I noticed just yesterday that a mosquito bite does not swell and look walnut sized. I am allergic to mosquito bites and knats. Anyway, no swelling and hardly an itch. I am thinking that the immune system is already kicking in with Naltrexone.

    I have been having some break-through pain since my accident. My shoulders went into some mild spasms so I took Norflex afternoon. That makes me tired of course.
    LDN is "often used in conjunction with other medications" as per exact words on the lowdosenaltrexone site. The site also states: "taken between 9 p.m. and 3 a.m." I take it about 10:00 p.m. and try to stay on that time schedule.

    Yes, I too wake up during the night. But I still don't wake up feeling like I was run over by a semi-truck like I used to feel EVERY morning before taking Naltrexone.
    This is still the best pain relief I have had in many years.
    Remember, it is not a cure, but relief of the cycle of pain.

    I have been on the LDN board a lot. Yesterday I asked if we might have to take LDN for life. It appears that we may have to if we have MS, fibro, lupus, Parkinson's. Someone WBC who has leukemia was going down. Hooray for him. And thank LDN for that.

    I am still on Baclofen PRN and Norflex PRN. (PRN means as needed,) which isn't so often these days, now that my foot/ankle is better.

    Those who are "more tired" might need to increase the dose a bit. Remenber, not more than 4.5 mg otherwise it prolongs the blockage of endorphines too long. Medication is a weird deal. Some think more is good or less is better, like with vitamins etc. Some meds were made to do one thing and after a few years they find out that it works for something else. (Like LDN 50 mg SR was for heroine addicts.) Now we use it in LOW DOSES for pain perception and an immunity booster. And no company will make those small dose, therefore, we need the compounder. If in doubt about your pill from your pharmacy call them. Or try another trusted compounder.
    1 mg of LDN per 5 ml water....if using as liquid. I would rather take a correct capsule made by a trusted compounding pharmacy. If you are "experimenting" with doses how can you expect to know just which dose is the proper amount? One night you might get 3 mg, the next night 3.89 mg. For example, Thyroid meds are very touchy. I would not want to play too much with the dosage on LDN. I am on
    3 mg and am staying there until my foot heals and I can really tell what is the best for me.

    We are so used to helping ourselves....trying everything...we have become as doctors say--self medicators. That ticks the doctor off, but with fibro--we know our bodies best and how we react to everything.
    So for me so far, I have been doing well and I am still happy with LDN. I went right back to feeling bad all over when I ran out of LDN for three days. I am staying on it forever or as long as I live unless the miracle cure comes in tomorrow!! Gentle hugs to all. Goodday
  20. gbean

    gbean New Member

    Hi,
    Thanks for the detailed response gooday. Sorry about your foot. Hang in there.
    I just looked up side effects of naltrexone again and it said it can cause tiredness and skin rashes among other things but (on this site i found) ONLY when using opiates (for its original use in opiate addiction.)
    I am not taking any narcotic pain relievers or opiates. However, I am taking a high dose of an older anti-depressant used often to help with sleep (doesn't really help for depression) called Trazadone. I assume anti-depressants shouldn't interfere but maybe they can and it hasn't been studied or reported? I wonder if I try the naltrexone without the trazadone if I would have results and not over-tiredness or rash?
    Any opininions would be helpful-gena