Hello from Naples FL I am a snowbird from Michigan.

[jakekell]

My diagnosis was at age 60 and I have had wegs for about 8 years now.

I have had many rough spots since this began, but hanging in there as it sounds most are. I was first put on the heavy does of Methotrexate once a week for 4 1/2 years along with heavy does of the prednisone as I had gone deaf. The Methotrexate was giving me the gift of many infections until I had to stop it even thought the Docs said no.

My daughter did some research on using C-Naltrexone 4.5 mg for MS/Wegs, no real side effects and sounded like good results. My Doc only wanted to do the "norm" treatments so looked for another doctor. This is a drug that is compounded for me at about $40 a month. I went to a compounding pharmacist and ask for more information about the C-Naltrexone. This pharmacist said he feels it is a super important find for looks of things especially people with MS/Wegs/Lupus issues. I told him that my doc said he wanted to go with the same treatments I was on so looking for another doc. The pharmacist told me he couldn't recommend docs, but he would tell me the doc that treats many MS/Wegs/Lupus people in the are I am from. I am in the Kalamazoo Mi are of the US. I took the docs number and been going there since that time.

I began the C-Naltrexone 4.5 mg about 3 1/2 years ago now and doing better than I ever did on the other meds. The med takes time to work, but not to long. I am still tired, some swelling in the legs/ankles, joint pain not to bad (it was very bad) sinus issues better, nose bleeds down, kidneys good so far.

I worked the first 5 years for a bank so a sit down job, but the stress didn't help I am sure. I don't seem to go totally into remission. I am at a level that I can live with on the meds above. I am now retired 68 this year so a lot of the stress is gone, but the C-Naltrexone 4.5 mg have made a world of difference for me. I am down to 2 mg prednisone I started on 80 mg and gained 60 pound. The weight wasn't helpful as some of you know I am sure. Thanks for listening need this for a long time I am thinking, hope it helps some one. I have limited wegs guess I forgot to state that.

[annekat]

Welcome to the forum, jakekell. You have had WG a lot longer than some of us and are still hanging in there. The drug you are being treated with is not something I've heard of, but there is a lot I haven't heard of, and I'm interested to hear if anyone else knows of it. I worry about it not being one of the standard treatments, but it sounds like you are doing OK. Awaiting the feedback of others.

Other than that, I'm glad you have found us, as this forum is the best place to be for anyone with WG. I hope we will hear more from you and you will join in the discussions.

[jakekell]

Anne,

I know what you mean about not being a standard Mayo Clinic type of treatment. I was concerned, but doing so much better than on all the other standard drugs. I am also interested to see if anyone else is trying this. The internet has a lot of info on C-naltrexone seems to be doing a lot of good for lots of us.

I never thought I would be doing this well after 8 years and had cancer before this hit me so I thank the Lord daily for life for sure. I am so glad I have finally found a form to see what others are doing.

[annekat]

I'm glad you are feeling good about your treatment. I just wish someone else would chime in, since I really know so little. I did a brief search on the drug and saw it being used as a treatment for heroin addiction and somewhere else autoimmune diseases were mentioned. But I'm counting on someone else to have more to say about it.

[Alysia]

Hi Jakelle,
welcome again. I am glad you have made it to this thread :wink1:
mtx is causing me infections too, so in my next visit to my wg-doc I am going to ask him if I can stop it, since I am also on rtx.
I googled the name of your med: http://www.dustysplace.org/docs/nax.pdf
I wonder if anyone here has any experience with it...
how do you know that you are not in remission yet ?

[annekat]

That was an interesting read, Alysia, though I admit I kind of skimmed it.

[renidrag]

Interesting read, I wonder why all we hear about is cyclo, mtx and rtx. It sure leads me to the assumption that this drug could work. Even as maintenance drug.
Dale

[jakekell]

Alysia,

I am not sure why I think I am not in remission as not having a lot of issues so maybe this is what remission looks like. I have some little flair ups, but not real bad. My doc really hasn't said he just ask "are you feeling good". My numbers are with in reason so maybe that is consider remission lol!. I maybe thought they would say that they consider I am in remisson so this may just be a communication issue the he assumes I know that. I go back in a couple of months will ask him.

The original use for the drug was for Heroin addiction that is correct so when you take this there are certain classes of pain killers you can't take. I don't seem to need anything more that some Motrin once and awhile as pain level went way down with this drug. I am hoping others have tried it to see the result with them. I felt like the original treatments were killing me. I already had a lot of chemo/radiation with my cancer so something had to give with the meds so for me this has worked so far.

[jakekell]

Dale,

I think I have the answer to that why this drug isn't being used. One the docs can't think outside the box and no drug sales people push this as it is a compound. Per my compounding pharmacist they haven't been able to claim the drug by one maker so they can't make the big bucks off of it. The pharmacist that compounds for me was a developer at a large drug company and feels quite certain that companies are trying to patten it. This Pharmacist feels the drug will become very expensive at that point instead of the $40 I pay a month now. I would say to call a compounding pharmacist in your area to see what they have to say about the drug. I hope this is helpful to people.