Still confused about AP

[kimberhehe]

I'm so glad so many have benefited from the variety of treatment options out there, including AP. I love the idea that it's inexpensive and has relatively few side effects.

I'm still not clear about how it works however. I can see where antibiotics would help with inflammation, which would certainly relieve a number of our symptoms - hand stiffness, lung capacity etc.

From what I have read here, however, AP goes beyond that and is thought to get rid of the underlying infection that may have caused this disease in the first place. The school of thought is that autoimmune diseases are caused by an infection, right? Wouldn't that would mean that "autoimmune" is kind of a misnomer? Also, if that's true, then why is AP not recommended for lupus? The diseases are so similar...

I'm not trying to stir the pot - there's not a lot of info beyond what I see on sites like this! I have enjoyed several months of not taking any medication (and being in remission!) since I was in the Gleevec trial, but need to keep my options open as symptoms are returning.

Thank you,
Kim

[jeffn]

Kim - Keep in mind that this is my opinion only and just what I "think" I have learned while having SD. The theories as to why AP works are as varied as the theories as to what causes SD. Some believe that mino or the antibiotic used simply works as an anti-inflammatory and anti-collagen agent. While I believe that is true I think there is more to it than that. Then there is the infectious theory and I am sure others or combinations of different protocols. I lean towards the infectious theory of Dr. Brown who began looking at AP treatment back in the 1940s IIRC. He believes that mycoplasmas infect us and the antibiotics fight that infection. If you are interested in learning more about AP I highly recommend Henry Scammells book "Scleroderma - The Proven Therapy That Can Save Your Life". I purchased mine from Amazon I think it cost about $15 or your library might be able to get it for you. The book will give you a good basic understanding of the AP and the infectious theory. It's a quick and informative read. I feel that the book is the palce to start and then if interested go on from there. The Road Back Foundation has a very infromative website that deals with AP exclusively and its treatment for RA, SD, and other auto immune disease including Lupus. Also I read somewhere that there is a trial going where they are treating early MS with mino. Yes they do use AP to treat Lupus. I think that because one of the possible side effects of mino is that along with about 40 other drugs mino may cause Drug Induced Lupus (DIL) people think that you can not use AP for Lupus, this is not true. NSAIDs are also one of the causes of DIL, usually when the offending med is stopped the DIL goes away. My wife had a bout of DIL caused by a drug (not an antibiotic) that is not supposed to cause DIL but when she stopped the particular drug her white count came back up rapidly. I also know of a teen that was taking Mino for acne and started to have issues, when she quit the mino the DIL went away. I find it interesting that when people get DIL and just stopping the offending med does not work or does not work quickly enough often antibiotics are prescribed, go figure that one out . Again IIRC if people have a problem with mino they can be switched over to another antibiotic for SD treatment. Anyway long story short they do use AP for Lupus.

I say I believe in the infectious theory for several reasons but mainly because I used to have frequent sinus infections and when put on a course of antibiotics just about the time I was finishing the course of antibiotics I would feel absolutely wonderful for two or three days and then would return to my usual wishy washing feeling self but without the ear infection. I don't think that the anti-inflamatory and anti-collagen benefits of the antibiotics would work that quickly. I have corresponded with a number of others with SD that have had the same experience. As to auto immune being the wrong term to describe SD if the infectious theory is fact - Good point. I think that in this case the immune system is just doing what it is supposed to do but having a tough time of it. The doctors will have to figure that one out.

Congrats on your success with the Gleevec. Can you not continue taking Gleevec? Is it a short term med or is stopping it part of the trial? Don't know much about it. Perhaps you would be willing to share some of your experience with the Gleevec trial with us on the SD board as there were some on the "old board" that were involved in the trial but because the old board was erased we seem to have lost those people unfortunately. I feel that ANY treatment that helps with SD is a good one and we would like to hear about it.

[kimberhehe]

Jeff, thank you so much - this is very helpful. Sounds like the book will be a good place to get my questions answered as well.

As for Gleevec - I wish I could keep taking it! I was in the trial for a year and I was doing very well post-trial without any meds for about 6 months, but recently my lung cap showed a drop big enough to concern my doctor.

The trial is - I think - still ongoing for some patients (we started at different times) and it will take some time for the results to be published.

Once the results are published and are favorable, the FDA can consider the drug to be indicated for Scleroderma. Until that happens, insurance companies are still looking at Gleevec as a treatment for leukemia. Since I'm not a leukemia patient, Gleevec isn't covered - and it costs about $3000 per month!

There is another study going on with a drug similar to Gleevec (don't know much about it, but my dr called it "Gleevec lite"), but my skin score was too low to qualify.

So I've started Cellcept, but I don't like that my immune system is compromised. I hate being a germ-o-phobe! Plus, I'm starting grad school soon and don't like the fatigue these meds seem to cause. Seems like the quality of life on AP is pretty good.

Thanks again, Jeff!
Kim



Thanks again, Jeff!

[jeffn]

Thanks for the info on your experience with Gleevec. Sorry the trial has ended for you, your result was good and I am sure you don't want to be backsliding, I too am leery of the immune suppressants though. Keep us posted of any new Gleevec info if you would.

There are lots of places to find info about AP but starting with the Scammell book gives you a very good back round and overview. Then if you are still curious hit the websites. As I said RBF is probably the most in depth but some people new to SD and AP seem to find it bit too technical at first glance. Also many there are RA sufferers but there does appear to be a growing SD presence the past several months. Don't get me wrong, there have always been SD people on the site with a lot of great experience and info but I find it nice that there are more of "us" lately. They really know their stuff over there though.

If you have any questions about my experience with AP after you check out the book please feel free to post or PM me here.

[Cubby]

KIMBERHEHE: First of all CONGRATULATIONS on remission! However, so sorry that you are having some difficulty again. What are your options now?

Now, regarding AP. I really don't have a clue as to how or why it works. Clearly, I believe it killed a bacteria infection in my body which helped cure me. Just like most people, I got the Henry Scammell Book and wanted to try AP because the chemo drugs were not working and I was getting worse. The doc gave me a 3% chance of surviving.

I went to another doctor and he started me on Photopheresis as he did not believe in AP either. 3 months later I was still getting worse, but now had seriously infected finger ulcers. He put me on the AP and within a month, the ulcers were gone and I started a long, slow, but very successful recovery.

Tell us more about the Gleevec. How bad were you, how long did it take, etc. Can you get back in the trial???

[kimberhehe]

Hi Cubby,
You have a great success story as well! That's fantastic....

As for Gleevec, since the trial period of one year ended, that's it for me until it gets approved for scleroderma.

I started the Gleevec trial with a lung cap at around 56%, a skin score of 22 and some more (to me) minor issues - hand tightening, slight GERD, slight Raynaud's, red spots etc.

I saw improvement very quickly - my first quarterly pft after starting the trial showed a big improvement. I ended the trial with a lung cap of 71%, a skin score of 8 and relief from the GERD. I did OT for my hands, so I'm not sure how much that helped vs. the meds, but I saw improvements there. I saw no improvement in the Raynaud's, but it was never that bad in the first place. The lovely red spots never diminished either. But the most dangerous things were greatly improved, so I was thrilled!

There were some side effects - what I call "The Holy Trinity" of side effects: nausea, vomiting, diahrrea. They pretty much subsided after a couple of months, however. I had some puffiness as well, which lasted the whole time. All in all I was pretty happy with the drug, and happier to be off any meds for a while!

So once my lung cap dropped again, at first my dr wanted to put me on Cytoxan. I knew the side effects from that sort of chemo could be harsh, so I asked what else there was. He told me about Cellcept, which is not a form of chemo, but a drug given to transplant patients to slow down their immune systems so they don't reject the new organ. There were side effects, of course, but seemed milder compared to Cytoxan. The biggest concern is I'm more susceptible to any number of diseases since I have a suppressed immune system. I love a medium-rare steak, but now have to worry about that!

Since I work full time and am pursuing a Masters degree, I really want to explore options with a better side effect profile. I know the first priority is my health, but I don't want to completely give up on a decent quality of life either, you know?

My next appointment/pft is in August, so hopefully there will be signs of improvement. I hesitate to discuss AP with him, but I may just to hear what he has to say. Maybe he is ok with it!

Thank you for you insights!
Kim

[Cubby]

KIM: I feel helpless in my ability to help you. However, please tell your doctor there are 32 of us doing AP and every single one is getting better and some are in remission. Some rarely post anymore. Steve201 is taking AP with Cellcept. Tell your doctor!!!! Also, if you want, go to the photos section and show your doc how I WAS and how I AM from the AP and Photopheresis. I will give your doc my doc's number is necessary.