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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » Low Dose Naltrexone questions


 
06-20-2012, 04:11 PM   #31
kimmidwife
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Joyce
We have a great supplier here in St. Louis but are moving to Florida and I would love to get skip pharmacy number from you.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
06-20-2012, 04:29 PM   #32
KTA
 
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Don't mean to butt in Joyce but thought I would respond to Kimmidwife:

Hi Kimmidwife: Skips Pharmacy is listed on the LDN website if you ever need it along with some of the other reliable compounders of LDN. But here is the information:

Skips Pharmacy
Boca Raton, FLA
(561) 218-0111
or (800) 553 7429

Hope this helps! The last time I ordered my son's LDN was from Skips and I liked them a WHOLE LOT better than the other Pharmacy I was using from NY. Good Luck to you!

Last edited by KTA; 06-21-2012 at 08:30 AM.
06-20-2012, 06:59 PM   #33
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Oh not at all KTA. I'm glad to hear that you have found Skip's too. I am reluctant sometimes to post info as I don't want people to think that I am trying to advertise or something. Whenever I say something it is because it is what I truly believe and in the spirit of sharing something to help someone.
The way I see it, we are all in this together and if I can help someone I do. Thanks for posting that. Of course there are many different compounders that are quite capable and are probably selling LDN and doing it well. I just like to caution people to be careful and be sure the compounder is well versed on the whole thing. Skip certainly is. I do believe he takes it himself, what what I don't know. Many smart people are taking it to ward off cancers that run in their families.
06-20-2012, 07:01 PM   #34
JoyceF
 
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One more thing...you truly do not have to be anywhere near Florida. I just call fax over my prescription and call in for refills. He ships to most locations..not sure about other countries. It doesn't get any easier, it comes right to my mailbox.
06-20-2012, 10:57 PM   #35
kimmidwife
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Thanks for the information. I will probably transfer her prescription. I will feel a little bad though the place we have been getting it they are really fantastic so one and reliable and they have been delivering it to us but skips is going to be really close to where we are in Florida so will be quite convenient.
06-21-2012, 06:28 AM   #36
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Keep in mind that Skip is very knowledgeable about LDN and how it is supposed to work. You can probably ask him questions and he'll be very capable in answering the questions.
06-21-2012, 08:56 AM   #37
ann
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I wonder if anyone here has had experience with LDN for fibromyalgia? I was dignosed with it in 2002 by an arthritic specialist and it has ruled my life because of the extreme fatigue, pain, nausea and depression. There are no medications specifically for the this illness except anti-depression meds that my system can't tolerate.

I'm happy to read that it is helping so many of you to take LDN . I'm on a quest to find someone who will prescribe it for me here in Vancouver, B.C.

Can anyone help me with info re fibromyalgia and LDN and where I might get it??

Thank you
06-21-2012, 07:04 PM   #38
Kev
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Regarding Fibromyalgia, I'd strongly suggest trying the lowdosenaltrexone.org website. They would know if anyone has trialed it, studies, research, etc., and if anyone who posts there has tried it. When I saw the 1st study on LDN on this website, my next step was to go to the lowdosenaltrexone site for more info on doctors, pharmacys, etc.. I got the info I was after, but it involved a lot of legwork... eer, fingerwork. I personally didn't find their site to be as.... friendly... as this one, but it gave me all the info I needed to get started. Hope that helps.
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06-21-2012, 07:57 PM   #39
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There was a pilot study for LDN and fibromyalgia

http://www.ncbi.nlm.nih.gov/pubmed/19453963
06-21-2012, 08:24 PM   #40
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My 19 year old son was diagnosed with Crohn's 1 month ago. I learned about LDN from the forum and saw the two papers out of Penn State. I'm wondering if most GI doctors will prescribe it. My son asked his GI doc today about it but the GI doc seemed to know nothing about it 'cause he told my son it was a narcotic.
06-21-2012, 09:22 PM   #41
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xmdmom - most doctors only know what it was initially used for. You have to present them with trial studies for them to even consider it.

Next time your son is at your GI, have him ask his doctor to look at the trials and studies for Naltrexone and Crohn's disease on pubmed.gov

Or you can go and search for it and print it out to give them.

If your GI won't prescribe it, then maybe your GP will. You just have to give them all the information you can get on it.
06-21-2012, 09:30 PM   #42
LittleChloe
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Some GI s will let you try it and some won't. If you really want it I would suggest giving your doc the studies you read and just ask if you could give it a shot. For some people it works really well and you won't know till you try.
06-22-2012, 09:19 AM   #43
ann
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Thank you for your replies.

I took the online report by Stanford School of Medicine regarding the small clinical study they did in 2009 to my doctor and although she was at first very reluctant I was able to convince her to give me a script. Her only experience with Naltrexone has been as an aid in alcoholism treatment, so I suggested to her that I could be her "lab rat"...

Took the first pill last night, very low dose 1.5mg, and will build up dosage in time.

Thanks for giving me a place to express my hope that this will work for me.
06-22-2012, 01:03 PM   #44
mnsun
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xmdmom-"My son asked his GI doc today about it but the GI doc seemed to know nothing about it 'cause he told my son it was a narcotic. "

^I've heard others on the forum say the same, and I'm wondering if these doctors are misreading the fact that Naltrexone is an opiate "ANT"agonist, which can BLOCK the effects of narcotics (temporarily at the 1/10 dose for LDN), and confusing it with an opiate agonist, which would I guess be the same class as morphine etc... I would think of it more like an anti-drug, because any opiate addict would probably be robbed of their buzz once popping LDN.

I guess the other possibility is that doctors may read into LDNs effects on boosting endorphin production, ?possibly by 300%? (not sure how they measured this), and consider that--erroneously--to be narcotic-like?

I've been taking it for 6 months, and I can tell you it does not cause any psychological/physiological effects approaching euphoria/impairment whatsoever. It *might* give younger children energy rushes and it *might* help some adults feel slightly less fatigued? Others can chime in... I know I'm still dependent on caffeine to get me through the afternoon.
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07-02-2012, 05:27 PM   #45
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I went to my GI today and asked to try LDN, of course the nurse practicioner had never even heard of it. I gave her some info I had printed off, and the answer was still NO. She gave me more samples of another name for the same drug I've already tried!So if anyone has a doctor in the Carolina's that will prescribe LDN, please let me know. I am willing to travel!
Christine
07-02-2012, 06:34 PM   #46
kimmidwife
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I too suffer with fibromyalgia and something called rsd. I am planning to ask my doctor for LDN as well. My daughter has been on it since January and we are very happy. It was a fight to get the doctor to prescribe it but he finally did. She did have a couple days rbis month with some nausea but otherwise is doing very well.
07-02-2012, 06:37 PM   #47
kimmidwife
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I forgot to mention we just moved and I found out Skips pharmacy is around the corner. I went into talk with them. They charge less then we were paying with our insurance. They don't take insurance but it will turn out less expensive. I did not get to speak with Skip I will try to next time.
02-27-2014, 09:47 AM   #48
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I have an 11 year old that is on 6mp and his level is really high. He is foggy and exhausted all the time. I would like to have him try Naltrexone his gastro wants him on remicade and he has no symptoms except not gaining weight which is a side affect of the 6mp. Any info on children trying this and the results would be helpful. Is it prescribed by a gastro?
02-27-2014, 10:33 AM   #49
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Hi kad1435.......Yes....you do need to get a script from the doctor/gastro doc. I'm not real sure about studies using this on Children, but I would start at a very low dose, maybe 1mg and see how it goes. Maybe someone else on the forum has more information. You will have to find a good compound pharmacy to make it up for you. There are few good places listed on the LDN site. My son, who is an adult, did very well on LDN for 10months. He was feeling great, but he lost 30 lbs while he was on it. When he got a colonoscopy his insides looked pretty good, but he had to go off of it because of the weight issue. That was about a year and a half ago, and he never gained the weight back. A few pounds here and there, but never got back to the weight he was when he first started LDN. Not many others had this side effect, but everyone is different. Good luck to you and your son!
02-27-2014, 10:36 AM   #50
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My son was on LDN for about a year and a half and did really well for a majority of that time he was in remission clear scopes, normal blood labs, normal fecal calprotectin unfortunately some other infections, antibiotics tripped him into a flare and we were not able to pull him out of it on LDN alone. He was growing and gaining weight while in remission on LDN (still never had an appetite though). He is currently on remicade since Jan. and doing well but his GI and I believe we will be able to go back to LDN at some point it was just our growth/puberty window was shrinking on him and we felt we did not have a lot of time waiting and hoping the LDN would kick back in, although we did give it about 6 months.
His GI prescribed it but I know that is not always the case as quite a few are reluctant because it is not a standard treatment and there has not been a whole lot of research. Some get their GP to prescribe, some go through others like a naturopath.
Since you are in Florida, you might try giving Skips Pharmacy a call and see if they can help out. They are a great source to get LDN from as well as there is a correct way it needs to be compounded.
Good luck
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Mom to Jack (18) dx Crohn's 2/2010
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Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

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04-01-2014, 09:35 PM   #51
Lady Organic
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Regarding Fibromyalgia, I'd strongly suggest trying the lowdosenaltrexone.org website. They would know if anyone has trialed it, studies, research, etc., and if anyone who posts there has tried it. When I saw the 1st study on LDN on this website, my next step was to go to the lowdosenaltrexone site for more info on doctors, pharmacys, etc.. I got the info I was after, but it involved a lot of legwork... eer, fingerwork. I personally didn't find their site to be as.... friendly... as this one, but it gave me all the info I needed to get started. Hope that helps.
Hi Kev,

I'd like to know if you're still on LDN? As we are both from Canada, I am curious because I have never heard of people in Québec taking this medication. Is it your gastroenterologist who prescribes it to you? where is your crohn located?
Im asking this because another poster here has been prescribed this drug for his crohns arthritis. I have chronic IBD arthritis as well and would be happy to know there would be another possibility of medication for my condition. How fast is it supposed to work?
thanks a lot,
lady O
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pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
04-03-2014, 07:18 AM   #52
Kev
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Hi Lady O

Couple of thoughts (that's about my limit)... your metho is keeping your Crohns in remission... I don't know if it would be a good idea to mess with your current treatment.

OK, as to me... I still take 4.5 mg of Naltrexone (hence the term low dose naltrexone, or LDN) every night. I've been on it continuously since November of 2007. I currently have so sign of active inflammation anywhere. Oh, I should point out that I don't consider this to be a 'remission'... I have to keep taking the pills to keep the beast at bay. If I run into old, stale pills, my condition will take a downturn... so that is why I emphasize what I see to be a clear distinction. Another point for clarification... I have both Crohns AND Ulcerative colitis. The scarring from my Crohns is still quite evident (there are photos on this website someplace... just to give folks an idea as to what damage this disease can do AND familiarize themselves with scar tissue and the role it plays in my continuing pain issues. My point? Sooner you get this disease in check, the less scar tissue you'll face.

OK, I've got osteo arthritis... and it hasn't improved from my LDN use. However, LDN is a treatment for rheumatoid arthritis. Which you have will determine whether it would help or not.

My GI did prescribe it... I brought in the info on the original study, and she agreed to trial me on it. She even arranged for a local pharmacy to compound it for me (the next closest pharmacy... at the time... was in Toronto). There are at least 1/2 dozen people in this area on it (my Gi was that impressed with my improvement she put another 6 on it) and there are now 3 pharmacies who compound it. If it can happen here, why not there?
04-03-2014, 08:24 PM   #53
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Hi Kev

thanks for your reply, interesting...

first thing interesting, you mention you have both CD and UC. Well, I have a very mild CD in terminal ileon and ascending colon (which can disappear without any treatment), and I have a stronger (moderate) inderterminate colitis in recto-sigmoid mimicking a UC, and since 13 years, the diagnosis is still indeterminate. My first gastro (RIP) who was a long time well-respected professor and expert in IBD favored the UC diagnosis, but he couldnt be sure at 100%. At that time, we were not aware of the ileon disease.
I knew about it when I met my second gastro who insisted of me having a colonoscopy when I first met him. The ileon and recto-sigmoid dont get sick at the same time!!! But my main problem is my recto-sigmoid. Last year I mention that possibility to my gastro of having the 2 diseases and he didnt know what to respond... He had never heard of this possibility I believe. I'd like to understand more about your 2 IBDs and if doctors have told you that his happens occasionally in some people... Are they 100% sure you have both? I've read also thats some doctors propose another autonomous disease for the 10% indeterminate cases thats remain impossible to classify.

I must say I have been pretty lucky in 13 years of IBD with most time in pharmaceutical remission, if you prefer to call it this way And I have no scar tissue or damage of any kind. Purinethol was my savior, but we just changed it last year for methotrexate to try to take care of that new arthritis. methotrexate is commonly used in RA. Its neither osteo-arthritis or RA that I have but a subtype of IBD arthritis, less common, that runs a course separatly than the IBD activity. My arthrtis started right after the end of a big course of prednisone 50 mg (to put my colitis in remission) and physical overwork, due to cortisone super-power feelings!!! I read your post where you mentioned that. I am sure super-women on steroids (I WISH I COULD FLY!!!!!!!!!!!!!). In my case, it almost a manic episode. During the prednisone I overworked with my hands and I triggered that new, never before arthritis that is chronic since then. A poster here has just been prescribed LDN along with his methotrexate. Im waiting about his news. So I guess that is a possibility for me. I dont want to stop my immune-suppressor. I have the possibility to start sulphasalazine along with the methotrexate, but I decided to post-pone this option for now and I am trying different natural approaches instead, such as intensive acupuncture twice a week and plan on trying magnetic pulse therapy soon. I wonder if LDN is less toxic than sulphasalazine. I really have to make more research about it. I'll gather as much info as possible on the subject and discuss it with my rhuemy and gastro next time. maybe it will be difficult to have it prescribed if they've never heard of it... My pharmacy is very big and they prepare my injections I'll ask them about LDN in the next few days. I'd be really sad to take the sulpha because the methotrexate or purinethol are already so much toxic (Low- Dose -chemiotherapy) and I dont want to add some more, so I am checking all my options. My condition is bearable so I can wait. I have been through worst during this last year...

for osteo-arthritis, have you tried glucosamine 1500mg once a day?

thanks a lot for sharing,
LO
04-04-2014, 06:06 PM   #54
Kev
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Thanks for the feedback... A lot of my osteo issues stem from the abuse my body has taken over the years.... crushed ankle, shattered knee cap, damage to my shoulder from dating a woman with a jealous boyfriend.... now it makes sounds like it is broken glass.

Add to it I'm 6' 3", 240 lbs and the wear/tear on my joints over the past nearly 60 years adds up.
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