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05/14/2012 03:44 PM

Back from the Rheumy update.......

LenaT14
LenaT14  
Posts: 439
Member

Happy Monday! I just back from the docs office and I hope that our newest plan of action will be a success!

I asked him about some burning sensation that I was having in my foot and he said along with the "auto immune connective tissue" disorder that it sounds like a touch of fibro like symptoms going on....he changed his diagnosis from Lupus to "unspecified autoimmune connective tissue" since my last visit. Don't know what that is about (other than insurability) but whatever.

So he said to stay off the Plaq, and start on 3mg of low dose naltrexone treatment, it should take effect in a week. I am waiting for the compounding pharmacy to call and let me know that its ready. He offered a Kenalog injection to give me some immediate relief but I told him that I would like to give the LDN a chance to work before I do steroids....scared of them! I also inquired about Benlysta and he said due to my history that he would be concerned about the side effects. He just got from a conference and there is supposed to be some miracle drug releasing in the US in August, its already being used in Europe. I missed the name of it but its supposed to be the cure all for these types of diseases. Has anyone heard talk about this new drug? I would love to hear from anyone doing the LDN treatment or who has given the Kenalog injections a try. The last round of oral Pred I took was miserable so I hate the word "steroids" but he said that injections are different.....love to hear feedback!

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05/14/2012 08:57 PM
redhairali
redhairali  
Posts: 3740
Group Leader

It is wonderful that you had a great appointment, that helps so much with treatment. I haven't heard of a new drug, but I don't generally read up on that kind of stuff. You might want to check http://www.lupus.org, there might be something there. I tend to be leery of a miracle drug that helps a lot of diseases.

Hopefully you can figure out what is is and let us know more about it. The unspecified autoimmune connective tissue, it just a way to say you have the symptoms of several AI diseases and he can't really separate them. Since it is common to have more then one, this isn't a real surprise.

Alison


05/15/2012 02:05 AM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

Is the new drug you're speaking of the Low Dose Naltraxone as a treatment for Lupus? As far as I know, for the moment, it is being prescribed off-label and has been found to be very effective, not just with Lupus but with HIV, MS, Parkinsons, basically a host of immune and nervous systems conditions. I know one person who has started LDN and has been loving it. I am terrified of Benlysta, and this LDN gives me hope, and I am interested in it, if my meds stop working or my symptoms worsen. I guess one of my concerns with LDN would be that if I were ever to be hospitalized and they asked for my list of medications, and I mentioned Naltraxone, they'd assume I was a heroin addict and take a wrong course of action with me. LOL Best of luck to you!

05/15/2012 02:28 AM
Looopie
Posts: 2165
Senior Member

I wonder how naltrexone works to suppress the lupus? I could not find any scientific articles on it.

05/15/2012 01:46 PM
dean69
dean69  
Posts: 131
Member

Funny MK.....I know my dr. and I were talking about that drug also....sounds good!

05/15/2012 04:05 PM
LenaT14
LenaT14  
Posts: 439
Member

This new wonder drug is something manufactured by Lily, that and the LDN are 2 separate meds. Apparently my rheumy is on the cutting edge of new meds, constantly hosting clinical trials, attending conferences, etc. As soon as I find out the name I will let y'all know Smile MK I thought the same thing about the LDN but heroin/alcohol dosage is 50-60 mg and autoimmune is 3-4.5 mg so hopefully if anything happens SOMEONE will be smart enough to know why I'm on it! I just took the 1st dose and a nap, I have a dull funky headache but nothing horrid. Under a lot of stress from my 12 year old son that is making things pretty rotten right now so could be that too. Have a great evening all and I will chat soon I'm sure.

05/16/2012 03:11 AM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

Yes, one would hope these docs could count, and know the difference between 50 and 3, but from what I've seen and experienced in ERs, I'm just not sure they really can count, or care enough to think first. Sorry if I sound jaded. I'm so exhausted by the sucky health care in my country. sigh.
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