AP and scleroderma

[dug]

I am new to the board.  My wife posted a few questions a year or so ago and felt that she received some great help.  I am feeling worn down from fighting diffuse scleroderma and thought I might find some words of wisdom.

I first started seeing signs of it November 2002.  I was diagnosed in June 2004. 

I have tried a lot of different forms of treatment before finding out about AP.  I started taking minocin December 2006.  I take 50 mg 2x a day.  I went out to Iowa to see Dr S for the 1st time in April 2007.  I have been there 3 times and I also have the IV's done every 2 weeks by my PCP.  I guess I am looking for some input on how long it has taken before I might see results.  I seem to have about 1 good day every 7-10 days.  The scarring is still spreading all over my body and as of November 2007 my last hi-res scan shows scarring throughout my lungs.

I guess I don't know what to expect.

Thanks,

Doug

[JBJBJB]

I take 50 mg 2x a day. 

Doug,

I am sorry to hear your disease has been progressing while on AP. Have you been taking 50 mg twice a day since you started AP? Did Dr. S in Iowa prescribe this dosage to you? I am not a doctor, and I don't have diffuse scleroderma, however I read Randy's story from this board who is taking a lot stronger dosage, who has diffuse scleroderma. Perhaps you could ask him about it. He seems to have a very significant improvement. http://www.rbfbb.org/view_topic.php?id=644&forum_id=1&highlight=two+month+update

Pray the medicine will work and it helps to stop the progression of the disease.

JB

 

 

[dug]

Thanks for the info.  I will try do some more searching of the site for other posts. 

I checked and I take 100 mg 2x daily.  I still take a bunch of meds and the brain fog doesn't help the memory…

 

Doug

[JBJBJB]

Doug,

Randy, Kim and Richie are wonderful people, and I am sure they will help you with some questions. I also sent you a private message which I attached Bill's recovery story who has scleroderma. Bill's symptoms were progressive while on AP, and all of sudden it stopped and he felt better.

Dr. S in Iowa has free consulting hours for his own patients. I'd call him up and see what he can do for you. Yes, 100 mg twice a day sound right for scleroderma patients.

Hang in there,

JB 

[Randy]

Hi Doug,

Hang in there and keep up the fight.You can do it, and many others have before us.  Feel free to contact me anytime.

Randy

squash.geo@yahoo.com

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Goodwife]

Hi Doug,

Is your wife Lori?  If so, we had been emailing over the past year or so and kind of lost touch – I think of you often and wonder how you are.  My hubby started AP right around the time you did (Nov 30 06, to be exact).  I'm sorry to hear that things are still a little down for you right now – my hubby was on a good streak and hit a down hill patch recently – hoping and praying that it will resolve.  In my opnion from what I have gathered from this site, Dr. S is THE most experienced, knowledgeable doc around regarding AP.  Since you have seen him a few times, maybe consulting with him to see his thoughts on your progress, etc. would be the best thing.  But most definitely, in my hubby's case and many others, the synptoms all got worse before getting better.  Everything also seems to happen in gradual waves – nothing concrete or overnight (that includes improvements).  Based on your symptoms, Dr. S may want to add additional antibiotics, or dosages, etc.  There are people on this board who have had great improvement and turnaround in their symptoms, including lung involvement, etc.  So there is definitely hope, it just may be that things may need to be adjusted more to fit your needs.  I would consult w/Dr. S as soon as you can to see what he thinks.  Good Luck to you and keep us posted.

Goodwife

[Kim]

Hey Doug,

So very sorry you're trudging through without feeling like you've got a grip on things.  I also have SD and am one of Dr. S's patients.  You obviously know by now how individual this disease is and one of the reasons doctors have a hard time treating and even diagnosing it.  I am one of the few SDers that could not tolerate the daily 200mg Mino dosing–just made me feel awful, so I pulse dosed at 200mg Mino MWF.  Then every other Friday, substituted the Mino dose with 2-250mg doses of Zith (the Zith stays in your tissues for 2 wks).  That was the combo that got the best results for me —- slow, but steady improvements.

In my opinion, taking too many supplements can be counterproductive to getting your body back to functioning the way it was intended.  Having said that, two that I would recommend from my experience are: Vitalzym, a digestive enzyme formula that has serrapeptase which dissolves scar tissue.  There is a CD you can get from their web site that explains how it works — for me, within two weeks I noticed old hard surgery scars had completely softened.  You should take between meals on an empty stomach.  The other supplement that helped with the Raynaud's was Natto which helps with circulation.  There is a caution with Natto, however, if you're on any blood thinning heart meds.

Depression is a big player in all of this and can sneak up on you, so you may find it helpful to continue posting and remind yourself you're not alone.  I've said it before, but I've learned more from other patients than I have from any doctor.

Hang in there, Doug …….kim

[Author]

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