Questions about SSD/AP.

[paper tiger]

Hi, I'm new here. I tried searching through old threads to find the information I was looking for, but it was proving a bit difficult, so I figured I'd just create my own thread. I apologise if this all seems repetitive to you!

I am 23 years old. I first noticed symptoms of Raynaud's Disease in January 2008, had it diagnosed within a couple of weeks, and promptly forgot about it. My doctor mentioned that it could be related to a more serious condition, but she didn't seem too convinced about it, and I was leaving on holiday to Europe, so I forgot all about my follow-up and just presumed I had crappy circulation. Case closed.

Except that I've recently met two girls who also suffer from Raynaud's who are about my age. We all wrote an exam together recently, and I found the room so chilly, I had to ask the invigilator to let me write it elsewhere where the AC wasn't on. We later met up; they noticed it was cold, but it hadn't been an impediment to them. Meanwhile, my hand had seized up and I couldn't even hold my pen.

That's when it occured to me that my Raynaud's was definitely worse than theirs. I recalled my doctor saying something about secondary Raynaud's being more severe than primary. While doing an unrelated search for puffy, swollen nail-beds, I came across some information about connection tissue diseases. I dismissed it at first, but when I realised that my nailfold capillaries are visible to the naked eye, it hit me that something's not right.

I've since seen two doctors who clearly knew nothing about scleroderma, and I'm off to see a new rheumatologist in about 3 hours. Hopefully this one can provide some real answers for me, but I am understandably scared out of my mind. I've read all sorts of awful things on the internet. I'm young! I want to travel! I'm supposed to leave to Japan in seven days but I'm far too terrified to go because all I can think about is renal failure and possible amputation of my fingers; it seems like I'll be cancelling my trip.

The only thing that has given me hope is what I've read here on RB. So bearing this in mind, my questions are:

1 – If my ANA comes back positive and a capillaroscopy confirms an SSD pattern in my nailfold capillaries, despite the absence of any other physical symptoms (no hand swelling, no tightening, no digestive problems, good energy, etc.) should I consider starting AP? The “nip it in the bud” philosophy?

2 – Would you recommend a person begin AP before trying other options? I want to beat SSD if I have it, not just treat its symptoms. But having never tried the standard treatment, I don't know if it works for some people (possibly me?)

3 – When people start AP, does the possibility of weaning off of it exist? Is this a life-long commitment, or if SSD is indeed caused by bacteria, can the bacteria be completely destroyed?

I understand that I have no clear diagnosis yet, but I believe that information is power, which is why I am doing all sorts of research now, even though to most, it would seem as though nothing is wrong with me. If symptoms do begin to pop up, I don't want to feel totally lost, I want to know what my options are.

Anyway, if any of you can help me, please respond!

Thank you,
Tracy.

[Randy]

Hi Paper Tiger,

Wow! 23 and off to Japan! Awesome!

Go for it Paper Tiger!

Assuming you are coming back, book an appointment now to see an AP doc when you get back.

There are other symptoms of Scleroderma (SD) that help docs make the dx of SD. I do not believe Raynauds and nail capillary stuff is enough for now. 

You sound like you are in good health besides Raynauds.  Have a great trip!

Randy

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"

[paper tiger]

Hi Randy, thanks for your reply!

I certainly will make an appointment with an AP doc; I've already e-mailed the RB contact for a local AP-friendly rheumy.

Nonetheless, you yourself, did you start with the usual course of drugs or did you start with AP immediately? If the former, if you could go back, would you have started with AP right away? I'm just educating myself now and trying to hear from “real people”, because that oft-cited study that only 6 of 11 people completed isn't too much to go on!

Tracy

[JOJO19551]

Hi Paper Tiger, How wonderful to be going to Japan.  Have a wonderful trip.

We probably were as scared as you are when we were at your point of the process.  All you can do is think “what is going to happen to me?”  Try to stay calm.  You have a new group of friends on here that will help you along the way.  I refused all harsh treatments (methotrexate, d-penicillamine).  They only work so long, then they move to a harsher drug.  No thanks.  I do not see a Rheumatologist; they are negative and gloomy.  My scleroderma is followed by a Dermatologist who gives me my minocycline.  She did a biopsy on my arm to confirm the diagnosis, which gave me assurance that it was scleroderma.  After that you start trying options.  One thing that has been tremendously helpful for me is grapeseed extract, one tablet two times per day.  My raynaud's is unbelievably better.  I also bought a infrared sauna and after 10 days I have seen better circulation. 

Please post your questions so we can help you through this tough time. 

Enjoy your trip,  JoAnn

[Lynne G.SD]

Hi Paper Tiger;
     I side with Randy,enjoy yourself.Life is so short and one day you will be sorry if you don't go.I had a very bad case of SD but am in remission now and leading a crazy,busy life.AP definately worksIf you start AP before much damage is done you have a far,far better outlook.I must stay on antibiotics as I have found out that if I stop for more that 3 days I start to get stiffish again.Cheryl's daughter,Jess is about your age,maybe a bit younger and maybe you could chat with herCheryl normally posts often but she had a house fire that  has her side tracked for the moment so read her old posts by using the “search” at the top of the page.
             

[Kim]

Hi Tracy, and welcome to this board.

Sorry you're going through these worries at such a young age.  I am a success story using only antibiotics for Scleroderma.  One word of caution would be that SD can progress rapidly for some so please pay attention to your symptoms and be ready to treat aggressively with antibiotics.  Early treatment is always best.

Good luck and have a great trip. 🙂

kim

[Randy]

[user=1359]paper tiger[/user] wrote:

… you yourself, did you start with the usual course of drugs or did you start with AP immediately? If the former, if you could go back, would you have started with AP right away? I'm just educating myself now and trying to hear from “real people…

Tracy,

You are a very astute 23 yr old! Great questions!  I'm not sure Japan will be ready for you!

Almost all of us SD folks have a long story of docs and meds and tests and … etc., but to make my long story short, I was on AP (doxycycline) about 6 months before I was dx'd with SD.  Shortly after my 1st idiot rheumy directed me to stop taking the doxy, my SD “woke up” and my symptoms became much more apparent to enable a dx.  My AP doc said that is is possible that the early AP could have derailed my SD from getting going in the first place. So if I could go back….yes, I would have started AP even sooner, and kept on it!

Randy  

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"

[Cheryl F]

Traci,

Welcome, we're glad you found us.

As Lynne said above, I have a daughter who is now 19 who has systemic scleroderma, diagnosed at age 16. Assuming you are in the US, it would be easiest for me to chat by telephone if you are willing. You can reach me at 916-532-2142.

Cheryl Ferguson

[paper tiger]

Thank you everyone for your responses! I really appreciate your input.

I just met with the latest rheumatologist. He ran the usual tests for ANA etc., did an EKG that came back as normal and sent for some chest x-rays. I asked him to perform a capillaroscopy and he said “Huh?”, which made me a bit nervous. He said he'd take a look at my nail beds next time we meet, which was very frustrating, because I was hoping to have that resolved today. He also told me that I won't be able to see anything without a microscope + x10 lens… so why is it I can see some of my capillaries with my naked eye? My last question was, in the event that I develop more recognisable symptoms, would he be open to treating it with antibiotics. His answer was absolutely not. He's an old guy from an older school of medicine. I'm definitely anxious to hear back from RB and to get in touch with another specialist…

Jojo19551: Wow, a dermatologist! Huh, I never would've thought to seek out a dermatologist instead. I don't have one right now, the one I previously used went private, but certainly, if I wanted a widely prescribed anti-acne drug, that'd be the route to take.

Randy: What were you taking doxycycline for prior to diagnosis? And why on earth were you asked to stop?!

And as an open question, in general, what do you think of pursuing AP concurrently with the standard meds? Can it be done, or is it just too much for the body to handle?

[user=2]Cheryl F[/user] wrote:

Traci,

Welcome, we're glad you found us.

As Lynne said above, I have a daughter who is now 19 who has systemic scleroderma, diagnosed at age 16. Assuming you are in the US, it would be easiest for me to chat by telephone if you are willing. You can reach me at 916-532-2142.

Cheryl Ferguson

Wow, to have you be so open, it's really touching and a relief to know people like you are out there. I'm in Canada, but one day I may call you anyhow!

Right now, I have no concrete diagnosis. I have one confirmed symptom (Raynaud's), one “element of concern” (my unusual nail fold capillary pattern), and a family history of rheumatic disease on my father's side. I understand that (a) most cases of Raynaud's remain unrelated to CTDs; (b) even with the presence of RP and nailfold erythema that generally suggests my RP is secondary, there is a chance I won't develop SSD/CTD; and (c) my nailfold erythema could also be brought on by something else.

I suppose that's what makes this so scary. This feeling of being in limbo. I want to go to Japan, but that would mean I don't meet with another doctor for another month (I'd go for 18 days, plus the next 7 where my test results aren't yet in, plus the obvious three days I'll be out cold with jet lag). Can I go a month with all sorts of questions on my mind? What if my ANA comes back positive, my capillaroscopy indicates an SSD pattern, but I don't exhibit outward symptoms. Do I just sit and wait, then?

But, more to the point, if I were to call you now, you would just have a very nervous, very scared overgrown kid on the line. I feel like I don't have anything concrete to hold onto. My boyfriend is sick of hearing me talk about this; it's his birthday on Saturday and he wants to think about happier things. My mother loves me and is very supportive, but she isn't the best person to unload onto. I suppose that's why I've ended up in this community. I don't even have a diagnosis yet, but already I feel better!

So Cheryl, one day, I may indeed take you up on your offer and call you. I hope I never have to, though! I am trying to think positive and hope for the best. But I'm here now, in case I have to face the worst, so that I can face it with the information I need.

Tracy

[lynnie_sydney]

Tracy – welcome! My ten cents worth is to get to see someone BEFORE your trip to Japan or try and DO something before you go. Reason for that? I can tell by your post that you will be stewing on this and probably will either not even notice where you are or maybe even find the whole experience of being away from home irritating whilst something big is on your mind. One possible thing you could do is get a prescription for a course of doxycycline for the time you are away. I did that when I went to Thailand………it's the current favoured malaria preventative. Do you have a family doctor that might do this for you? That way, you'd be in a holding pattern while you're travelling and give yourself the space with which to fully experience it and enjoy. Lynnie   

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Maz]

Hi Tracy,

I've sent you the full listing of AP docs for Canada by private message. To retrieve it, just go to the top right of this page and click where it will say, “You have 1 new message.”

Also, I've given you the Japanese AP network contact email address, as this person may be able to help you with info on a doc in Japan who can help you out.

Peace, Maz

[lynnie_sydney]

Maz – thought Tracy was only going to Japan for 18 days. That's why I suggested a short course of doxy as a possibility. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Maz]

[user=30]lynnie_sydney[/user] wrote:

Maz – thought Tracy was only going to Japan for 18 days. That's why I suggested a short course of doxy as a possibility.

 

Hi Lynnie,

Your idea was a very good suggestion. Just wondered if it might be a means to get started if it wasn't possible before going away…and maybe reassuring to have a contact in Japan if worried about things while there?

Canada is a bit thin on the ground for AP docs. The best one in Ottawa isn't taking new patients and the other one is on the opposite coast in BC. There is one in Montreal, but he's a bit questionable in terms of willingness to “come out. He might be worth a try, though.

Peace, Maz

[Lynne G.SD]

Hi Tracy;
      I live just down the road from you and I was in MTL last night for our monthly orchid society meeting.As far as I know there are no AP docs in MTL.I see Dr. A in Ottawa XXX-XXX-XXXX if my memory serves me well.She now has a more than 2 year waiting list so call as soon as you can.She is a great doctor who was virtually bedridden with Fibro and Chronic Fatigue for a couple of years.She got out of her sticky wicket and now helps others.Make sure you have copies of all your labs .Docs will probably try to refuse them but by law you can have a copy if you pay for ithe Xerox
                                    Lynne

RBFV Edit to Remove Physician Phone #. RBF support forum policy asks that physician initials only be used and all contact info be kept private. Thank you for your understanding.

[Maz]

[user=31]Lynne G./SD[/user] wrote:

I see Dr. A in Ottawa

 

Lynne, is Dr A taking new patients again? Last I heard she had a wait list of 2 years and more recently stopped having a wait list. 😕 Can you confirm if her status has changed now?

According to the AP doc list, there is a Dr D in Montreal on St Joseph Blvd, Est. The notes say he's worried about publicity, but has rx'd for RA and sclero in the past. Any info on this doc? Have you tried him?

Thanks!

Peace, Maz

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