Scleroderma- HELP WITH NEW DIAGNOSIS

[Lynne G.SD]

Hi RS;
       It took several years to get to100% as I did not know about the Celiac and Lyme.The celiac had cause severe damage without symptoms and I ended up with leaky gut,multiple food sensetivities and systemic yeast that just agrivated my immune system and stopped the AP from working properly.It took a good 18 months to reverse this damage and once that was fixed an other 18 months to remission.Hands took longer than the rest of my body.
            It was definately the minocin that did it as I was on no meds at that point and even now if I forget to take it for several days I can feel it starting up in my hands again.Take the mino for 2 consecutive days and it subsides
   

[RSCHAFF]

Did you have Diffuse or limited? Did you progress slow or rapid?

[RickinCA]

Curious as to how many AP remissions were dx'd with the scl-70 antibody upon initial testing?   Any responses would be so appreciated.  I am newly introduced to all of this as of today.   Will I sleep tonight?   Not much!

Thanks for your help re my first official post.

[Maz]

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

Thanks for your help re my first official post.

Hi RickinCA,

Welcome to the Road Back discussion forum, but sorry you had to seek us out. I'm sure the others with scleroderma will chime in to answer your questions when they can…sometimes weekends can be a bit slow, but someone will eventually answer.

In the meantime, if you need help with AP resources and a physician list for your state, just let us know. Btw, it really helps to generate responses to posts when folk add a signature line with their diagnosis and current meds. It's easy to do this by just going up to the My Account button, clicking on the Profile tab, scrolling down and just filling in and saving the signature info you type in the box. This info then appears on all your posts whenever you post and saves having to repeat your info. It's also useful to add your location as others in your state can then offer more local info for you on docs, etc.

Hope this helps to get started….have you found the main siteand books yet? Also worth reading through the Newcomers and Education sections on the main site.

Peace, Maz

[Cheryl F]

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

Curious as to how many AP remissions were dx'd with the scl-70 antibody upon initial testing?   Any responses would be so appreciated.  I am newly introduced to all of this as of today.   Will I sleep tonight?   Not much!

Thanks for your help re my first official post.

Hello RickinCA:

My best advice is to pace yourself in the gathering of information.  I am pretty sure that I didn't sleep for several months when my then 16 year old daughter was diagnosed with limited systemic scleroderma (via ANA anti-centromere and symptoms which included documented lung involvement).

You will want to spend a good deal of time reading, but do try to set a schedule of time when you do this, don't let it take over your life (do what I say not what I did).  The information available on the net and in books, I believe is very important so that you can become educated about your choices and make a well informed decision for your treatment path.

Having participated on this forum, as well as the Scleroderma Foundation discussion forum nearly daily for over four years, I can tell you that I believe that you should use the internet to learn your options, and then find a doctor who will support your treatment choice, and NOT just follow what the one doctor you happen to end up with recommends.  Even amoung the traditional rheumatologists, the treatment options offered vary widely.  The doctor who diagnosed my daughter recommended that she begin a drug that had been proven ineffective years ago.  Learn all of the options and then choose the one that makes the most sense to you.

To answer your question, in my time here, I have seen people with SCL and anti-centromere labs go into remission and have their labs return to normal.  I have also seen people with systemic scleroderma diagnosed by symptoms and or skin biopsy that never had elevated ANA SCL or anti-Centromere and they have gone into remission.  Still others I have seen report that they had positive ANA (SCL or anti-cent) and they reached symptomatic remission, but their ANA remained elevated.

My daughter is in the last group.  Her SD symptoms are all but completely gone, she has very minor raynauds sometimes when she gets really cold (like swim practice in the 52 degree ocean).  Other than that she is very well, she is a college athlete, she is a full time student, she works part time in a highly demanding job, and she is in the process of applying to grad school (which is almost a full time job alone).

Welcome to the RBFBB, there are alot of really great people here that will share theire experiences with you and I believe that for me, that was the best way to leverage my time and energy in choosing my daughter's treatment for systemic SD.

Good Luck!

Cheryl

[RickinCA]

Maz and Cheryl, thank you for your responses.  As many of the posters here, I am feeling pretty overwhelmed by the turn of events over the last few months with regard to my health.   Yes, piecing it together one day at a time is the way to progress, to be sure.  Lots of decisions ahead it seems. 

I've enjoyed the gift of good active healthy life up to this point (age 64).  But the last few months have been literally scary.  Without going through the entire chronology of what has happened I'll attempt to put this as succinctly as I can.   A few months ago, I went to the ER with a swollen tongue.  ER doc dx'd as angioedema.  Sent me home with a medrol script and told me to follow up with my primary.  I was out of town at the time and was not able to do that until a couple of months later.   In that time I began to experience more swellings in random places, including both hands, my feet, especially the soles, my upper lip and right cheek. I had to take three courses of medrol to control this inflammation, which my doctor and my cuz, also a phys, very reluctantly prescribed only because I was on the road.  The medrol worked great, but I knew I had to wean and begin to take the antihistamines instead, although they just weakened the intensity of the swelling(s).  

I finally saw my doctor who sent me for blood tests and ultimately told me this past Wednesday that my last test came back positive for the Scl-70 antibody at 1.3.  He did not really elaborate and only said I would have to find a rheumy to proceed.  I have been extremely stressed over all of this, as I have not been able to stabilize.  The swelling has been in my hands and feet for the most part at this point, and though less intense, still extremely uncomfortable, especially in the soles of my feet, where it feels like I am walking on thickened pads and also hurts like hell.   My diet has been me forcing myself to eat so I don't lose anymore weight (down about 15lbs).  Not sure if that is anxiety or the disease or both.  My digestion has definitely changed.  I think the medrol had an effect on my stomach and bowels.  I don't have the pain I was having while taking the steroid.  But my appetite sucks because I'm afraid anything I eat will cause the swelling and inflammation to worsen. 

Anyway, here am I.  I expect to get a dx of SD given my blood tests.  Where I go from there is a great mystery at this point.  Praying I can get well again.

Thanks for reading.

r

[Cheryl F]

Rick:

If you do end up with an SD diagnosis, starting on AP quickly seems to be very effective for most people. There are too many people to list that have gone from what seemed to be a dire health situation back to full health. Being in LA you are near one of the most experienced AP physicians, in Riverside CA.

If it is SD-you absolutely can regain your health.

Cheryl

[RickinCA]

Thanks, Maz.  The Riverside doctor has been mentioned to me on another site, so he must be “the” guy..   I have his phone number and intend to include him in the mix. 

May I ask if the description of the symptoms I described to you in my last post typify those of many here?  I have inquired as to the frequency of the Scl-70 antibody which seems to be key in all the lit I have read.  

Thanks for your kindness and help.

Rick

[RickinCA]

Sorry Cheryl,

Typo'd your name by looking to far above your post!

Thank you!

Rick

[RSCHAFF]

Hi Steve: How long took drugs and nature and severity of side effects? Did you have Diffuse SD? Rapid or slow moving when diagnosed? Please advise.

[Maz]

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

I finally saw my doctor who sent me for blood tests and ultimately told me this past Wednesday that my last test came back positive for the Scl-70 antibody at 1.3.  He did not really elaborate and only said I would have to find a rheumy to proceed.  I have been extremely stressed over all of this, as I have not been able to stabilize.  The swelling has been in my hands and feet for the most part at this point, and though less intense, still extremely uncomfortable, especially in the soles of my feet, where it feels like I am walking on thickened pads and also hurts like hell.  

 

Rick, so sorry to hear of your health challenges and your anticipated SD diagnosis. I don't have scleroderma, I have RA, but I've been around here long enough to have heard your description of symptoms many times over. The hand and feet swelling is common, as is the very sore thickened soles. Our other volunteer, Kim, is away for a couple more weeks, but she could share her experience of this with you when she returns. She is now in remission! Here is her story to provide you with some hope…just scroll to the Remission Corner story at the end of last Fall's eBulletin:

https://www.roadback.org/EmailBlasts/ebulletin_fall09.html

And, here are a few more remission stories for you to read:

Richard (Richie) Stone's remission update:

https://www.roadback.org/EmailBlasts/ebulletin_spring09.html

Jessica Ferguson's remission update:

https://www.roadback.org/EmailBlasts/ebulletin_summer09.html

Steve Stephens remission corner story:

https://www.roadback.org/emailblasts/ebulletin_spring10.html

AP works for scleroderma and it works most swiftly if started as early as possible before too much damage has occured. SD can be a bit of a freight train, so the goal is to slow it down and halt it….then the improvements just keep coming, bearing in mind it's a longterm therapy and most SD patients will prefer to remain on AP for life to prevent the chance of relapse. The most beautiful thing about AP? It's a simple, pretty benign antibiotic given to kids for acne every day and it has some amazing immune-modulating properties for SD patients to slow and reverse the disease in addition to its antibacterial properties.

Some SD patients prefer to take the aggressive route with AP and also include intermittant IV clindamycin, as described in the Scammell books.

If you stick around here, you'll meet some of the folks in the remission stories above as well as learn about some terrific ways to support your health on your road back to recovery, like far-infrared sauna, diet, supps, etc.

Getting these life-altering diagnoses is shocking and painful and the grief that set in can bring about a good deal of stress. Stress hurts immune-function in a big way….but this forum is a place of hope and, after talking with some of the amazing, kind, courageous folk here, and getting started on AP, you'll begin to feel renewed hope and the stress will lift. Hang in there, Rick…we're all here to support you. 🙂

Peace, Maz

[RickinCA]

Thank you, Maz.  Those are incredible stories to read.   Also frightening when hearing Steve mention his original prognosis of six months(!)  I am not sure how I will react if I hear those words from one of the doctors I will see this week.  Oddly, I don't “feel” that badly as far as fatigue, but for the stress and the weight it brings.  In fact today, I ate, and out of appetite, not just forcing myself.  The swelling in my feet and hands is giving me a break, but who knows what will be when I wake tomorrow morning.  When I put my feet on the floor, that's when I can tell if it's going to be a drag of a day or not. 

Are the people that respond to AP more the exception than the rule?  I have heard so many extremes with this vague and apparent destroyer of life.  It starts, it stops.  It starts, it kills you.  Some people exhibit the anti-Scl-70 and have diffuse systemic SD and some have it and don't have SD at all.  It starts and decides to leave on its own?  This might be the cruelest disease I've ever heard of… and here I am dancing with it.  In the words of Dylan, I might as well try and catch the wind.

I guess this will be perhaps the most important week in my life.

I appreciate all of your insight(s) and support.

Rick

[RSCHAFF]

Thank you for the reply. I may go with the same doctor over the phone. What is name and phone number?

[Maz]

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

Thank you for the reply. I may go with the same doctor over the phone. What is name and phone number?

RS, do you mean the AP doc in Riverside, CA?

Peace, Maz

[RSCHAFF]

I am looking for a Doc that will help over phone. I am in Denver and so far not impressed wiyj doctor here. None of them seem to spealize in AP, No mention on their website. Are you referring to Dr F, who I am thinking of going with?

RBFV Edit to remove AP physician's full name to protect physician's privacy, as per forum guidelines. Thank you for your understanding.  

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