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Post by jeffn on Mar 13, 2014 19:07:13 GMT -5
No apology necessary Randy, glad to have you here and posting. In regard to the notifications try going to your profile - click edit profile - then go to notifications there is an option for email notifications. Perhaps that will do it.
I am quite curious about the doxy and wish you well with new program. Is your doxy dose similar to your former mino dosage?
I wish I had a rheumy that was more of an AP guy but at least the one I have is OK with AP. You are fortunate to be seeing one of the best.
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Randy
Junior Member
Racing Gloves on!
Posts: 81
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Post by Randy on Oct 24, 2014 10:06:47 GMT -5
Hi Jeff,
Assuming my worsening symptoms are not just attributed to the progressive nature of SD, the Doxy did not work for me (Note, Dr. F. attributes my worsening conditions to my AP protocol change).
My facial black splotches did lighten up by about 50%. More aggressive application of sunscreen could also have contributed. But, around 5 months later I knew I needed to be back on Mino full throttle. I am currently back on everyday Mino and 3wk IV cycles again to stop the SD march of worsening symptoms.
It is re-educational at least to once again experience my progression of SD symptoms. After being in "remission" for quite a while, I now can say we don't soon forget what getting SD is like, however, how quickly we recall and understand what's going on (compared to how long it typically takes to conclude a SD diagnosis).
For me, it appears that I need somewhere between 4-5 days of 100mg twice daily Mino per week.
Here's how I've reduced mino to try to increase ImG and address hypopigmentation, or reduced clindy IV's because I was doing so well. Note, all changes were approved by Dr. F. at the time.
9/2011 - reduced mino to 5 days/wk 9/2012 - reduced mino to 4 days/wk 12/2012 - reduced mino to 3 days/wk 1/28/2013 - increased mino to 7 days/wk (due to worsening symptoms) 2/12/2013 - returned to mino 4 days/wk 3/4/2014 - Began doxy 5 days/wk (to address hypopigmentation) 5/6/2014 - reduced IV cycle to every 6 wks. 8/25/2014 - increased doxy to 7 days/wk and IV cycle to every 3 wks (SD worsening) 9/8/2014 - returned to mino 7 days/wk (SD continuing to worsen)
All this is informative, sickly interesting, and certainly particular to me and my subset form of diffuse SD (RNA polymerase III positive). But hopefully it may be helpful to someone else on our challenging SD road.
Randy
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Post by jeffn on Oct 30, 2014 11:20:56 GMT -5
Good info Randy. I hope you are improving now that you are back on mino. As I noted in another thread my mino reduction did not work. Now that I am back on 100mg a day every I am back to MY normal self. As they say it is always something. A lot more nuances to this than meets the eye. I am going to stay with my present dosage for the now and perhaps permanently. Some of us may need a minimum dosage of mino just to stay where we are and the trick is finding that dosage level. Hopefully you have found your level too. I read of some APers being able to give up their meds and being done with it. That does not appear to be in the cards for you and I. Personally I am OK with that. Take my 100 mg a day and get on with life. Yeah I can do that.
I wish I had kept a better record of my journey. Yours is quite impressive. I was good about that early on but as I improved I mostly just winged it in regard to documentation.
Please keep us posted on your improvement.
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Randy
Junior Member
Racing Gloves on!
Posts: 81
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Post by Randy on Dec 9, 2014 12:20:11 GMT -5
Hi Jeff, et al,
It has been a bit rough for me, though everything is relative. Although I have been back on twice daily mino since 9/8/14, the AP has not caught up with the progressing skin involvement. It is interesting to revisit the symptoms, but not something anyone should want to do. Lyrica is once again helping deal with the burning, itching, and pinging to be comfortable enough at night to sleep. Fortunately, there is nothing to indicate any internal complications yet.
To compound things, coincidently, my insurance company put the brakes on my Clindy IV's, so about 1 1/2 wks ago Dr. F. Rx'd 300mg oral Clindy twice daily for me to take in addition to the mino (until we can reestablish the IV's in the future).
So the question of the day is, why the Clindy in the first place? Interestingly, according to Dr. F., we don't know what triggered my SD (or any of ours, I'd imagine); however, apparently the Clindy goes after some triggering bugs that the Mino doesn't get.
All I know is that (1) Dr. F. believes my SD worsening is due to my switching from Mino to Doxy, and (2) the AP protocol of mine, which included Clindy IV's, worked for me before - so (3) I have to have faith that it will work for me again.
Randy
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Post by nhnancy on Dec 10, 2014 12:52:24 GMT -5
Hi Randy, I am sorry your symptoms have increased since you changed , I think, that it will be kicking in soon, though, you are right there...Do you take any vitamins/supplements, cuz B-complex really helped with my neuropathy. Another doctor told me about alpha lapoic avid. ...How much probiotics do you take? Hoping that mino and clindykicks in soon! Go AP beat SD, ? I bet its warm where you are....chilly and dreary up here... take care Nancy
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Post by christel on Dec 10, 2014 18:17:22 GMT -5
Ok, maybe time for me to chime in here. I just realized that I have been using doxycycline twice a day for several weeks to prevent a wound infection. Any chance this could be a form of AP 'teasing'? What should I be watching for in terms of improvement as I don't really have the skin tightening.
Nancy, great to know about the B- Complex being a help for neuropathy. Duh. I guess I didn't think of that. Will add it to my regime post haste! I need all the help I can get with the shingles pain...
Christel
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Randy
Junior Member
Racing Gloves on!
Posts: 81
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Post by Randy on Dec 10, 2014 19:15:33 GMT -5
Do you take any vitamins/supplements, cuz B-complex really helped with my neuropathy. Another doctor told me about alpha lapoic avid. ...How much probiotics do you take? Hoping that mino and clindykicks in soon! I bet its warm where you are....chilly and dreary up here... take care Nancy Hi Nancy, Thanks for the reply. I take plenty of vitamins and my B-12 is tested by Dr. F. and is fine. I have taken B complex (including B-6), and I felt it made the PN worse. Previously I had given alpha lapoic acid a long try. Not only did it not help the PN, but it promoted acid reflux in me; so I stopped it. I have taken a lot of probiotics since I have been on AP, and now Dr. F. has me taking more (due to the oral Clindy), Flora Max, 100Billion CFU etc, etc. I too hope the Mino and Clindy kick in soon. Today has been a rough SD skin day. Albuquerque is similar to Denver, being 1 mile high, so it is a cold desert, though normally dry. Thanks again for your thoughts. Randy
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Post by nhnancy on Dec 12, 2014 12:51:11 GMT -5
Randy, Alpha lapoic acid, upset my stomach too! Its really nice that you have a physician that you really trust, he in NH, mamyof us went to Dr. T, whio is now retired, and his replacement was not a proponant of AP. I have be fortunate that my primary care, has two other patients with SD, so she knows as they are both on AP. That being said I may search out a holistic person.... Take care....:-) Nancy
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Randy
Junior Member
Racing Gloves on!
Posts: 81
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Post by Randy on Dec 25, 2014 23:07:46 GMT -5
Hi Nancy, Jeff, et al, This is how I am currently fighting my SD... in Punta Cana. By the way, I have been having really rough nights with peripheral neuropathy, almost everywhere. So I took Lyrica a bit earlier this evening. The AP will catch up soon. Randy
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Post by jeffn on Dec 26, 2014 19:55:39 GMT -5
Well that is one way to deal with SD. Have a great time down there. I have a lot of water around me but not any I can swim in for about six more months. Going to try and go clamming tomorrow though if it is warm enough. Waders, wet suit gloves, etc. I could really go for a warm weather vacation but it does not seem to be in the cards. Enjoy Randy I am jealous.
I hope your increased dosage kicks in soon, worked before right.
Recently I went back to 100 mg twice a day just to be sure. All is well so far but I may have a bit of die off in my middle and ring finger of my right hand. The finger joints are a bit stiff. I think I will stick with the present dose for a couple of months and see what happens. Maybe the lesson for me is to leave well enough alone.
When you have one of those drinks with the little umbrella in it think of us.
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Post by christel on Dec 26, 2014 20:22:24 GMT -5
Wow. I think I may like to give that treatment option a whirl...enjoy while I figure out how to get there!
Christel
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Post by jeffn on Dec 27, 2014 13:18:08 GMT -5
Clamming went well, got enough before the hands gave up. Leaky wetsuit gloves, need some new ones. I think my son has been into my clamming and water related glove stash. Funny how that works. I had stuff, then "we" had stuff and now he has stuff. Randy I sure could use some of that warm water.
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Post by christel on Dec 27, 2014 21:19:45 GMT -5
Glad you had fun and were able to stay comfortable. A bit unusual for December, even by you, isn't it? Gotta love (and forgive) those 'kids' Christel
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Post by jeffn on Dec 28, 2014 7:41:06 GMT -5
It was low 40s when I went. Sunny, a nice low tide and the wind was light, all in all a nice day. Every so often we get a good one. A good way to spend a couple of hours. Then back to work around the home. Today it is cloudy and I have not been outside yet so not sure how cold. It has been warm of late. Cold again by Tues. probably the weather you already have today Christel. I am fortunate in that by and large the Raynaud's just effects my hands. I do get cold much more easily than pre SD but still can take in some cold weather outside activities. Where I really notice the Raynaud's is at work where I need to take my gloves off to accomplish tasks. Then it really hurts.
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Post by christel on Dec 29, 2014 20:52:13 GMT -5
Hi guys, We drove our daughter back to her apt. in Chicago today after my checkup at scleroderma clinic (which ran almost 2 1/2 hours late!). Once we got to Chicago, we unloaded her stuff, and had to park our truck remotely, and then we walked a few blocks to a restaurant and back to her apartment again. Downright chilly, but I made it, albeit slowly due to my leg still recovering! We will head back home tomorrow. I couldn't do this regularly, but feel some sense of accomplishment since I haven't walked that distance in a very long time! Happy New Year, everyone!
C.
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