Initial onset of SD

[RickinCA]

One of the questions I have regarding the AP for SD is whether you have to be dx'd with Lyme  prior to being treated with the antibiotics?   If I go to an AP rheumy, will he just make sure I indeed check out for SD and begin my treatment?  I'm worried about the progression of this disease and don't want to wait any longer than I have to to start healing (the roadback!).  

And the other question that I have posted in the context of another topic is the range of Scl-70 and what that range means.  I have tested positve for the antibody.  I am having bad and good days as far as the symptoms go.  Somedays my hands will be severe, others my feet (really hard when that one hits.)  I have also experienced some thickening of the skin on the front of my neck… nothing painful or disfigured looking, but I can tell by feeling it.  I've read that after the initial cutaneous manifestations, it begins to taper a bit in its aggressiveness.

I'm happy this board exists.

[Steve201]

Personally …I'd get started on some sort of treatment as soon as possible….

 

I'd press your doc for something even as low as 100mg of minocycline (commonlly used for zits)….I'd also find a doc that is familiar with SD….

 

after living with it for 10 yrs….I can't tell people enough to get some sort of treatment…..and do it fast..

 

 

Steve

[Maz]

[user=2703]RickinCA[/user] wrote:

One of the questions I have regarding the AP for SD is whether you have to be dx'd with Lyme  prior to being treated with the antibiotics?   If I go to an AP rheumy, will he just make sure I indeed check out for SD and begin my treatment?  I'm worried about the progression of this disease and don't want to wait any longer than I have to to start healing (the roadback!).  

Hi Rick,

if this helps…no, it's not necessary to be dx'd with Lyme prior to being treated with minocycline for scleroderma. As Steve said, it's best to get on AP asap and, if you need adjunctive conventional therapies for Raynaud's, pulmonary hypertension, etc, then you may need these for a while, too, to control your symptoms and help with quality of life.

You are very near one of the most experienced rheumatologists in CA who prescribes AP. If your own rheumy or GP won't prescribe minocycline to get you started, my best suggestion would be to get to Dr. F. for a full work-up and get started on AP asap. Being a rheumatologist, he would be able to offer a diagnosis, prescribe oral and IV antibiotics (IVs, if indicated in your case) and would also be able to supply you with any other supportive meds you might need along your road back as a kind of one-stop doc. 

Once you get started on AP, then you can look into the whole Lyme question. The doc mentioned above, Dr. F. in Riverside, is not Lyme Literate, however, so if you did want to look further into this, you would need to also seek out the help of a LLMD  (Lyme Literate MD) who would assess you for this set of infections and add to your minocycline anything needed to target those infections. Both Kim and Maria here can share their SD/Lyme stories with you when they see your post or you can PM them to ask any questions you may have. Kim discovered she had Lyme disease a few years after starting AP (described in her Remission Corner story posted on the other discussion thread) and Maria sees Dr F for her SD and a Lyme doc for her Lyme disease. Undiagnosed and under-treated Lyme and coinfections can leave a person sick, but getting started on minocycline is a top priority with SD.

With other, more mild rheumatic disease, there is a wider window of opportunity to check into the whole Lyme thing at the outset before making a choice as to which type of doc to see. You could make appts to see both types of docs right from the get-go, if that if your choice, but, no….it's not a good idea to wait to get going on minocycline for scleroderma.

Feel like I repeated myself a lot there…sorry to drone on, Rick, but hope it helps a bit in your decision-making process. You're very wise to get informed and figure this all out nice and early. 🙂 

Peace, Maz

[RickinCA]

Steve, if I may ask, how far along were you with your symptoms before you went AP?  And one last question, did you have the Scl-70 antibody?

Thank you. 

Rick

[mschmidt]

Rick,

I spent 13 months and saw 18 specialists trying to figure out what was wrong with me.  I have NEVER had any inflammation markers, rheumatoid factor, or positive SD blood tests.  I started Minocin 4 months after being officially “diagnosed”, and didn't get tested for Lyme disease until 6 months into starting AP.  I see Dr. F, and was not willing to stop taking the Minocin to get bloodwork done for him or my lyme test.  I was way too scared of SD to even think about the whole Lyme possibility, and wanted to be as aggressive as possible, as soon as possible.  I live in Chicago, and didn't hesitate a second to have my husband make the trip to Iowa in a blizzard after New Years, to get my first round of clindy iv's.  I also didn't hesitate to get on a plane 2 months later and fly to California to see Dr. F.

I wish that I had found RBF early on when I just had swelling in my hands and feet–perhaps I wouldn't have had so much damage done to my body.  I'm LUCKY, LUCKY, LUCKY to have experienced such amazing recovery and healing in such a short time on AP.

Don't get caught up in ranges of your SCL-70 blood test.  Instead, feel fortunate that you tested positive for it, and know what you're dealing with from the start.  You don't “accidentally” test positive for this antibody, and the fact that you're experiencing ANY symptoms in addition to your positive bloodtest should be proof enough.  There are many people that are low-positive and are very symptommatic, and others that just started feeling syptoms when they tested positive.  Either way, the amount of antibodies present doesn't matter.  (and, people who are sero-negative in everything (me) can still have rapid progression of SD) 

As far as your neck is concerned, I experienced exactly what you are experiencing right now–it took MONTHS before I had hardening happen in my neck, face, and elsewhere.  So, not sure where the tapering comes from?  I looked completely normal while all this was going on inside me, and then BAM…it felt like I changed overnight.  VERY, VERY scarey, as my face started to change, and I couldn't make normal facial expressions.  So, I DID get disfigured for a while, and am thankful that this has reversed as well.  Sounds like you are very early on in your disease, and AP seems to work well early on–not to say that it can't work later on but, why would you risk the potential damage to your body??

Feel free to PM me if you want to discuss my experience with AP and how SD started and progressed for me.

Maria

[RickinCA]

Thank you, Maria, for those very direct answers to my questions.  I assume that after you got a firm dx, you never sought the traditional treatments (which are intimidating in themselves.)   For instance, I live close to UCLA, a teaching hospital, and have a couple of appointments this week.  I know I will be given some very difficult choices as far as how to proceed.  By then I will have also called Dr. F, since I am relatively close to him as well.   My proximity to these centers is definitely fortunate(!)   I hope he will see me quickly, because I want to address and hopefully nip it in the bud.  

Weighing the two alternatives, it seems like people are responding well to AP.   I have zero idea how they are responding to the current traditional methods.  I guess this week will be my education big time.

Fingers crossed.. (ouch!)

Thanks again to you and everyone for the valuable input.  It is appreciated every bit as much as you would imagine.

Rick

[RickinCA]

Yes, Maz.. I know what you (and Steve) are saying regarding the minocine.  If my pcp won't prescribe it for me, I may have to look elsewhere to acquire some quickly.  I'm not into “meds” at all and it frustrates my pcp when I won't take something he might prescribe.  And I'm definitely not into self medicating, but in this case, I may get started w/ or w/o a doc if I can't see someone soon.  (I'm the one who is rambling here!)

Thank you again for your encouragement and help.

Rick

[judy cash]

Rick,

I don't have SD, I have RA, so the point I have to make is for any disease that can be treated with AP…..O.K. now after saying that, let me say,….. what do you have to lose by going ahead and starting AP, its a safe antibiotic. I hve watched this board for well over a year, and I can tell you that SD is not a disease that you want  to wait on treatment for. So many people have been helped by AP, that  if I were in your shoes I would get started as soon as I could. I have been watching your posts and I know that you are scared,,, I was in the beginning too.   You feel like,” can this be real and doctors don't believe in it”.   Really thought, look at it like this, this treatment is an antibiotic, so as a first step, it can't hurt, unless you are allergic….  Have you read the book by Henry Scammell about this treatment (AP) and SCLERODERMA? I forgot the exact name of the book, but I would read it if you can… I'm not a doctor, and these are only my thoughts. SORRY FOR RAMBLING!!!!!!!!!!! It has to be your decision, best of luck to you.

Judy

[RickinCA]

Thanks, Judy.  Points well taken.  Although I am allergic to penicillin, I'm ok with erythromicin and derivatives, which I think minocycline is.   The shock of all of this is still part of it and I'm trying to stay balanced and rational in light of that.  One of those things where you have to shake the dust off quickly.  I am curious as to what terrible things the conventional doctors will have to say regarding the AP.  And I know there will be some. 

Thank you again for your valuable input.

Rick

[Parisa]

Hi Rick,

When my husband first became sick, they thought he might have scleroderma and we made a trip to UCLA.  Unless something has changed in the past couple of years, they are not friendly at all to the idea of AP.  I have been on this board for almost 5 years now and have seen many “miracles” and “spontaneous remissions.” 

[RSCHAFF]

Hi Rick:

 

Like you i was just diagnosed and plan AP and was wondering how long did you have to wait to schedule and appt with Dr F? I think that i am going to fly to California to see him. From my careful research, AP apears to be the correct path, and if there are any internal issues to treat those symptoms as well with whatever meds needed to treat that issue.

 

I am hoping and praying that I only have skin issues so far. When is your visit and could you post a summary of what DR F says when you see him???????

 

Good luck. Likle you, I was shell shocked when I got my diagnosis. I only had hand issues at the time and thought that a I had arthritis or some infection and AP or steriods would knock it out.

[RickinCA]

Hello RS,

I go in for an evaluation at UCLA this week.  I will begin the appointment process to see Dr. F. tomorrow, although I sense that it will take weeks.  I'm not sure anyone can afford to wait weeks before beginning at least some treatment, but obviously I am not feeling confident in the conventional approach at UCLA at this point.  On his website, Dr. F. states his successes are fairly exclusive to the patient pool that has no organ tissue involvement.  I don't know think I have that and will hopefully know that for a fact after I go to UCLA.  My symptoms now are swelling in either toe(s) or finger(s) from day to day, and that is a tapering down from my full hands to my feet.   Praying that in itself is a good thing.  Yesterday I went an entire day with no swelling anywhere.  That was a GOOD day.  BTW, I'm taking a zantac 150 and a zyrtec before bed.  Refuse to take anymore prenisone until I talk to an MD.

Will keep you posted. 

Rick

edited by RBF to remove doctor's full name, thanks for understanding.

p.s. I'm in Los Angeles, thus good proximity to either center.

[Steve201]

look..I know this is scary stuff….I wouldn't want to wish this on my ex-wife…and I'd wish alot on her!!:shock:

this doc your waiting for sounds like he's running a control group of some sort….if it were me….I'd look for a rhumetologist that isn't trying to make a name for himself….I'd find a doc that will work with you….you need a team approach here….

but that's just me…

 

 

Steve

 

[RickinCA]

I hear ya, Steve.  And your ex should be thankful!

Did you find a doc other than Dr F in Riverside who would work with you on the AP? 

I'd do that tomorrow here in LA if I thought I could find the right one. 

Rick

[Steve201]

Rick

I went to Dr. F here in Seattle……he later went to UCLA or someplace down there to do a study and research on SD….I have been with the same Rhummy up here in Everett for 10 yrs….if I asked for something ..we'd discuss it…he'd see if there could be any reaction to what I was taking and then if nothing could affect me adversly…he'd go ahead and call it in to the pharmacy….

what you need is a team approach….everyone needs to report to your rhummy….everything I did or wanted to do went thru

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