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Post by steve201 on Jan 12, 2010 19:32:11 GMT -5
Hi Ltulip actually I started on minocycline for about a yr but started tanning in the dark....I got so dark all the bro's were giving me hi 5's.....I think I actually started to like rap music.......then the doc switched me to tetracycline....I've been taking 250mgs of tet. for the past 9 yrs......it works well.... doxicycline that your proposing is a short acting antibiotic...the dentists use this for a blast of antibiotics that usually are out of your system in a few hrs... ...I wouldn't think it would be of much good when you need a slow acting long term prescription.... so...my suggestion would be to try either minocycline 250 mg x 2 per day...or....tetracycline 250 mgs x1 per day....it will do a good clean out of your stomach problems and then start working on your schleroderma....
it's low dosage enough that most doc's will not think twice about keeping it on you for long term... some people have taken it via iv and it goes directly into the system....... hope this helps
Steve
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Post by ltulip on Jan 13, 2010 14:00:59 GMT -5
Thanks Steve. Your feedback is invaluable! I'll ask my rheumy to put me on tetra. I'll disappear in the dark if my complexion gets any darker! lol Just hope he will agree. I see him next week. Wish me luck! Linda
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Post by steve201 on Jan 13, 2010 19:16:10 GMT -5
good luck..let us know how it goes....
Steve
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Post by ltulip on Jan 19, 2010 19:39:43 GMT -5
Steve, saw my rheumy today. Though he was not supportive of AP for me, I did convince him to prescribe 250mg of tet for my gut problems. I take the antibiotics for 2 weeks every day and 1 week off. He says the disease has not been active in me for over two years and we're dealing with previous organ (lung and heart) damage. He dosen't think AP will work for me at this stage in the disease. He is especially not supportive of mino since he is concerned about possible side effects (onset of lupus).
You said you take 250mg tetra 2x day. Not sure if I should take it every day or MWF? Steve, how long did you have the disease before u started AP, and did u have organ involvement when u started? I plan to finish my cycle of doxy this week, wait a week and then start the tet. Any suggestions? Thanks in advance for sharing. ltulip
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Post by steve201 on Jan 19, 2010 21:58:34 GMT -5
ltulip I was dx'd back in 2k...my system was attacked quite quickly and damaged my lungs and digestive tract all the way down to my colon...it took about 6 mos to get dx'd and then I started cytoxan....once I was pretty stable with cytoxan for about 6 mos...we ran across an article from a doc back in boston or someplace east....he recommended minocycline low dosage ....250mg x 2 per day....I was on that for about 8 mos...my lungs were really involved and I had lost almost 30% function....my lungs had fibrosis growing and wouldn't allow me to expand enough to get air...I was absorbing 98% oxygen but I couldn't get enough air..
after a few months of minocycline treatment..my skin became really sensative to light..and I was tanning even in flourescent lighting...so we switched to tetracycline...250mgx1 per day....now please read my post above cuz I said the samething...250mgx1per day.....DO NOT use 250mgx2 per day of tetracycline...it's a stronger antibiotic and in my humble opinion will cause other problems....with that said...250mgx1per day is just enough to help your body out.....you may have to adjust it to 200mgs or less ...depending on how your system reacts to the antibiotic.... remember the key to ap is low dosage long term....for me I noticed immediately my digestive system started settling down....my eating improved.....my energy level started getting a bit better...
my lung capacity is up to 80% of volume ...that is up 8% from the loss that I had....we're talking an improvement here..why??...cytoxan stopped the disease...reset my immune system...and ap helped the body heal mostly.....some damage may never recover....but overall....I'm way better.....
doxicycline is a very quick acting short lived ap...dentists use it as a boost for dental work so germs can't attack the system.....so..imho...it's not good for SD patients....again....that's strictly my opinion...but it's helped out several people so..I'd re-talk about it to your doc.....
Steve
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Post by ltulip on Jan 20, 2010 0:02:12 GMT -5
OK. Thanks again. I'm not dense, just trying to understand my doc's advice and your experience with AP. Iwill definitely start with 250mg 1x day.
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Post by Cubby on Feb 3, 2010 15:42:37 GMT -5
LTULIP: Hi and welcome! JUST FYI. I started the Minocin (Brand name for Minocyclene in about october 2005. I took MINOCIN 100 mg 2 x per day till about 6 months ago. Then, I went down to 1 a day. I realize that is not what you asked, just thought I would throw my 2 cents in!
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Post by linsbosi on Feb 21, 2010 16:06:02 GMT -5
Hi All--thanks to Cubby who referred me to this site--looking forward to learning more about my disease which has been diagnosed as Morphea Scleroderma, after numerous blood tests, punch biopsies and physical exams, along with ct's and ultrasounds. I have been placed on 300 mgm of generic Neurontin twice a day with and third dose possible in the middle of the day if the itching becomes very severe (which it is)./ I also am using Creamy Vaseline Cream or pure Vaseline on my back, chest, legs and arms to try and control the burning and itching, which helps minimally. The only true relief I get is soaking in the tub. I have a stomach surgical wound which is 6 weeks from closure and when it is totally healed, the Drs at Duke want to start Methotrexate and IV steroids to help with the effects of the disease. My symptoms include fire red T shirt skin on the chest and back and arms, shiny, lumpy and papule type lumps on both arms and both legs, along with deep purple pigmentation on arms, legs and beginning on my neck along the facial chin line. I also have considerable swelling of both legs from groin to ankle, and intense tightening aof skin from chest to groin, making movement very difficult. I also suffer intense shortness of breath when the skin tightening and swelling is at it's peak. The firey itching is about to drive me out of my mind, and wearing clothing is at times almost unbearable. Can anybody offer some suggestions?
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Post by jeffn on Feb 22, 2010 17:38:07 GMT -5
Unfortunately I don't think I can offer much help with your itching. Mine while certainly uncomfortable was no where near a severe as yours sounds. I would take either benedril or tylenol PM at bed time to help me stop itching some and be able to get some sleep. There are a couple of morphea people here and perhaps they can offer some ideas. I know one has undergone UVA treatments for her morphea. Have any of your doctors mentioned that?
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Post by Cubby on Feb 22, 2010 21:32:07 GMT -5
LINSBOSI: The itching nearly drove me crazy! My doc gave me a cortisone cream to put on the itchy skin and also some prednisone really cut down on the itching. I realize you sound like you need more, tho, so I would almost be inclined to go on the IV steroid for a time.
My close friend who visits me about once a month, has morphea. She is in full remission from the MINOCIN, 100 mg 2 x a day. Methotrexate did not work for me at all. I know it might work for some, but did not work for me.
I know 43 people who are on the AP and all are doing well. Most, but not all of them, are on this board.
Let me know if I can help more.
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