Scleroderma- HELP WITH NEW DIAGNOSIS

[aynurrzepa]

Richard,

I have SD with diffuse antibodies but luckily limited skin involvement only for almost 30 years now. I have PERFECT labs except for slighly elevated Anti Scl-70 antibodies and extremely low vit D. No internal organ involvement. No deformities only slight facial changes and hard (but fully functional) hands. And of course, Raynauds with some periodic ulcerations. Hmmm…. not sure about this one but I am (and seems have always been) significantly darker than any of my family members or even my children (hi 5, Steve201!)… Note I may have had SD as early as at 3.5 years old (Raynaud's) or maybe even earlier (sign – short  frenulum under tongue,  milk/food refusal and steady weight loss from 6 months onwards until almost anhorexic at age 7). I definitely changed colour since birth.

However, I don'l want to see any more (negative that is) changes in me, so I have started AP with such little symptoms and even without an AP physician but with the guidance of an experienced AP physician over the phone/e-mail 1.5 months ago. Why wait? I cannot report any improvements YET but it's way too early especially with my ancient SD history. However, I must say I either have softening of my lips and face from AP or it's just my imagination… But I never imagined this before…so something tells me it is AP working…

I'd say anybody with SD OUGHT to try AP. What other better choice is there? And what else has proven so well to work? No brainer for me. You shoudl not even think longer but start AP ASAP.

[mschmidt]

Richard,

Welcome to RBF forum.  I, too, am an AP success story.  I mostly had skin and muscle fibrosis–never had any internal organ involvement.  I spent almost 1 1/2 years, hopping from specialist to specialist (18 total), trying to figure out what was wrong with me because I never had anything show up in my blood, other than a slightly elevated ANA.  Thankfully, I found information on the internet about SD and AP, stumbled upon this website, and started my path to wellness.  I was diagnosed with SD in October of 2008, started Minocin in December of 2008, and clindamycin iv's in March of 2009.  I am happy to say that I'm VERY close to remission.  I've had reversal of most of my skin involvement, with just slight tightness in my cheeks, and slight contractures in my hands.  I think the advice everyone has given you thus far is spot-on—please don't wait to see what course this disease can take.  The earlier you start AP, the better.  (that is, if you decide it's the right treatment for you)  NO, it's not a quick fix but in my opinion, was well worth the wait, especially when you look at the statistics of what can happen if nothing is done at all.  Everybody's body is different, and thus, will respond differently.  I was fortunate to do aggressive treatment early on, and started recovering very quickly.  I went from not being able to sit, stand or lay down without being in pain, to running and lifting weights 5 days a week now.  I don't even feel sick most days anymore, and I'm eternally grateful to have found this website and AP because I know it saved my life.  Whatever you decide, make sure you arm yourself with as much knowledge and information as possible, as well as a supportive team around you. (ie. doctors)  Lyme Disease is in my SD mix as well, and since starting treatment for that with other antibiotic combos, my SD seems to have “miraculously” gotten better. 

Please reach out often, ask a lot of questions, and know that there are lots of SD success stories here to support you. 

Maria

[Melinda]

I have been on 100 mg of minocin taken AM and PM on MWF's now for 4 months and I'm extremely happy with my progress so far.  My AP doc is also very pleased and just this week increased my dosage from MWF, to every other day including weekends.   I had a whole host of new SD symptoms that had popped up from summer '09 to March of this year when I started AP that were really scaring us.  Now many, many of the new symptoms have already improved greatly or in some cases, already reversed.  Each month just seems to be getting better and seeing the relief on my husband & kids' faces is a wonderful thing to see.

My only regret?  In my case only that I waited and researched options for so long, considering that I “discovered” AP by accident (though I consider it providence) last July-August (09) when I was on a long course of clindamycin for an abscessed tooth.  I just had such a tough time believing that something so simple and so innocous (especially compared to anti-malarial & chemo drugs) could be effective against something as dangerous (deadly, actually) as SD.  It makes me crazy to think of how many people are dying of systemic SD without ever even knowing that they have this treatment option.  In only 4 months, I'm well on my way to getting my life back and I couldn't possibly be more thankful. :roll-laugh:

[Kim]

[user=1799]charli[/user] wrote:

Hey Kim-  Just wondering if you noticed a difference in your mouth symptoms when you added the Neprinol.  I just ordered neprinol and am really hoping it will help alleviate the symptoms I have with my mouth.  I have pos scl 70 antibodies and have been trying to take the minocin on and off for about a year.  I still only take 50 mg MWF.  I still feel very sensitive to it but don't want to give it up.  I do not have an AP doctor or even a rheumatologist.  I use my PCP to rx it for me.  Just curious and hoping the neprinol will help with pain and my mouth stuff!!

With so much of SD you have so many changes happen to your body that when you are in the process of reversing it you've become desperate and are probably doing more than one thing to get better, so it's hard to know specifically what did you the most good.  I know the Neprinol worked wonderfully well to dissolve fibrosis, and it may have aided in loosening up connective tissue attached to my jaw bone pulling things out of whack, but hard to know for sure.

You might want to PM Denise, aka “beetlelover”.  She has SD and has had horrible mouth issues that.  She was getting some improvement from the abx, but last I talked to her was not getting any relief with her mouth pain.  By now she may have something helpful to offer.

Take care…..kim

[Kim]

Melinda, WOW!  Great update. 😀

It took me about 4 months to start seeing some improvement too.  It's a hairy waiting period, but encouragement from people on this board (and feeling I had no alternative that was acceptable to me) helped me go the distance.  Can't wait for your next update.

Take care…..kim

[Melinda]

[user=40]Kim[/user] wrote:

Melinda, WOW!  Great update. 😀

It took me about 4 months to start seeing some improvement too.  It's a hairy waiting period, but encouragement from people on this board (and feeling I had no alternative that was acceptable to me) helped me go the distance.  Can't wait for your next update.

Take care…..kim

Thank you, Kim!  I mentioned this to my husband earlier and he said that the difference in me from April to August now is, in his words, “Night and day”.  That, of course, is the short version.  😀  The loooong version is what I posted here last week on redrock's thread (it's up a little ways and very long uhhh, well, 'cause I wrote it LOL).  :roll-laugh: :blush: 

http://www.rbfbb.org/view_topic.php?id=4836&forum_id=1&jump_to=45274#p45274

Oh and btw, this may make more sense after you read the link above, but the dr. said that it's typical for my hands and feet to get worse before they get better.  It just takes a little more time.  Maybe increasing my dosage schedule will speed this up a bit, too.  We'll see.  In any case, I'm very happy!

[Kim]

:blush::blush::blush:

[RSCHAFF]

Thanks to everyone for your responses. I am so hopeful that AP will work for me. It is so unfortunate that it takes so long to get results, but the alternative treatments are not effective from what I can see. Can everyone respond back and advise date diagnosed, Diffuse or Limited and date diagnosed? Used oral or combo of IV and Oral AP?

 

Thank you. 

[RSCHAFF]

Hi Maria:  Very happy for your recovery.

Were you diagnosed with Diffuse or Limited? What did you do to get your hands working again? I have limited range of motion of fingers and no grip that has gradualy gotten worse since Sept 2009, and in Dec 2009 could not remove cork off of Champagne bottle. i thought that I had RA. Will your doctor do a consult by phone?

[Melinda]

[user=1977]RSCHAFF[/user] wrote:

Thanks to everyone for your responses. I am so hopeful that AP will work for me. It is so unfortunate that it takes so long to get results, but the alternative treatments are not effective from what I can see. Can everyone respond back and advise date diagnosed, Diffuse or Limited and date diagnosed? Used oral or combo of IV and Oral AP?

 

Thank you. 

Symptoms began in mid-2007.  Diagnosed 12/07 with Limited Systemic Scleroderma that so far has affected muscles, tendons, ligaments & joints all over, digestion, circulation (Raynauds), fatigue, and a bunch of other things.  No skin involvement diagnosed yet. 

Began Minocin end of March '10.  Dosage was 100 mg. taken twice a day MWF until last week.  Now the dosage is 100 mg. taken twice a day every other day (incl. weekends).  We're working up “low & slow” as everyone advises.  Since I had such good luck with Clindy (that's how I found AP), I'd like to add that into the mix at some point also.  So far though, I'm happy with my improvement on “just” Minocin, Prilosec, vitamins & a good probiotic.  🙂 

Modified to add:  you said “It is so unfortunate that it takes so long to get results, but the alternative treatments are not effective from what I can see.”   It's funny, but I feel like one of the lucky one's in a way.  Since I was told in '07 by the Ivy League college that dx-ed me that nothing that they'd tried for LSSc had been effective yet, I haven't tried the usual battery of meds that are so often given to Sclero patients.  That Ivy League dr/researcher told me to exercise (swim or yoga), no smoking/drinking (I didn't anyway), get plenty of rest, take Prilosec, get regular pulmonary checks, etc.  Just pretty benign, healthy things.  So the only other treatment (besides Mino) that I've tried was the Plaquinil that was prescribed by a previous dr. until it caused vision problems for me.  My choice has just been to use a treatment that has the fewest side effects and otherwise just to keep things simple and “common sense” healthy.  This is what makes the most sense to me, anyway. 😉

[RSCHAFF]

Thanks for reply. hen you say that you are happy with progress on AP. How well has it worked? On scale of 1 to 10, with 10 being full remisssion? How long sustained?

Did you 1st try traditional meds?

 

My only question for everyone is how do we know AP works if it takes so long to see change, which from what I learned with Scleroderma it is normal to get better after 2 years, unless have Rapid Progression variant? FRom my readings it appears to work for most, but was wondering if anyone can comment on this. 

[Lynne G.SD]

Hi Rs;
   On the 1 to 10 scale I am a ten, life is totally normal and no visible sighns of SD except that I have ridged nails where the capillaries were broken and these cannot be remade.
       Where ever did you get the idea that SD isbetter after a couple years.I do not know one person who can say that although I know many doctors will.probably just now to scare the —-out of you.One can reach a plateau where things do not get worse for a while but it never reverses and usually comes back like a freight train.
       The only meds I know that can really help are the ones used for the lungs.Any immune suppressant may help the symptoms for a while but the disease keeps on going,you just don't see ot feel it.You need a healthy working immune system to fight this disease,not a suppressed one.I eventually failed ALL meds but AP worked wonderfully .Still fighting the Lyme that gave me the SD.
                             Lynne

[RSCHAFF]

Wow. You seem to really have done a lot of solid research on this, and I really appreciate your input.

 

I agree with you that AP appears to  be the way to go. Did you have Limited or Diffuse and when diagnosed and went went into remission? Are you familar with LDN therapy and what do you think of it? They say that LDN is effective for Lyme, SD and other autoimmunity disorders.

 

 I had meant that from all of my readings it appears that when you 1st contract SD this is when you are acute in symptoms, and they say after 2 years normally you will feel better.

 

How long have you been in remission?

[Lynne G.SD]

Hi RS;
   I have been in remission for the last 7 years but no thanks to my regular doctors who put me on methotrexate thah nearly gave me liver failure and prednisone that has given me severe osteoporosis and paper thin skin.The osteo is now reversing very slowly by  extreme exercise and a very good diet.My SD was systemic and caused by Celiac and Lyme with a good dose of aircraft fumes at work.
       I think that LDN can be very helpful but not likely to do much for petryfied skin.Minocin works in 3 ways,it kills the micoplasma,is a light inflamatory and prevents an enzyme that is needed to form collagen.That is why people that have lung fibrosis can return to normal in time.All of us have likely had the fibrosing for years before the skin got hard as it takes years of cell death and renewall for the skin to change and that is the same thing in reversing it.I wish I could explain this better but my English vocabulary is pathetic.Let me use an anology,it takes years to grow your hair from a bob to long enough to reach your bum….same thing goes for growing skin.We have had a lot of tiny capillaries break due to the collagen blocking them and our veins also harden as the skin does.Over time the new cells being made while we are on Mino have much less collagen in them and in turn go back to being soft.We can live quite well with less veins.No doubt you know someone who has had veins stripped from their legs when they have a bad case of vericose veins but capillaries do not come back once brokes.No doubt you have had the sensation of bee stings?????that is the breaking of  capillaries that are in touch with thecapillaries.Veins and caps. do not have feeling it is the nerve running alongside the does.I must have had a zillion of those stings,the kind you get if you wring out a dishcloth too hard and break a tiny vein.
    No I did not have to research this disease very much as I was a scientist who studied medecine for my degrees in archeology and paleoanthropology.

[RSCHAFF]

Thank you for response. Are you reasonably certain that the AP therapy is what caused your remission? How long did it take?

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