Checking In – Diffuse Systemic Scleroderma

[Kameep]

Hello all – it's been a long time since I've checked in.  Probably about 9 months!  For a little background – I was diagnosed with rapidly progressing Diffuse Systemic Scleroderma in Dec of 07 at Georgetown University Hospital with grim prognosis.  I was prescribed the normal toxic meds that kill your immune system.  I talked the doctor into giving me minocycline also and she would only on the agreement that I take both in conjunction.  On January 1st, I switched over to Kaiser on my new husband's plan and told that doctor that I was taking only the AP therapy.  So – I never did take the other meds.  I  have been on generic minocycline 2x a day since December 07.  Other than that I take lisinopril to protect my kidneys (I did a stint in the hospital in 12/07 because SD attacked my kidneys – now take the lowest dosage and have low low BP).  I'm also on prescription prilosec for my esophogus and 100 mcg of thyroid replacement because my thyroid was affected also.

I am happy to report that I consider myself to be close to remission!!  I have my grip back – my skin is almost back to normal – the peach fuzzy hair has grown back on my arms/hands – the band of SD looking skin on my chest is gone – my face/arms/chest/neck are no longer tight – my BP stays low – I am no longer fatigued – I got off the prednisone back in 5/08 and have had no returning joint problems. 

I do still have issues with Reynauds and I cannot miss my dose of prilosec (omniprezole) or I will feel it within a couple hours.  I suspect I will always have to be on the thyroid meds.. and I am prepared to take the minocycline the rest of my life… and I am okay with that!! 🙂

Hope all are doing well!

Amy

 

 

 

 

[JBJBJB]

Amy,

Another wonderful and amazing news! Thank you for sharing. Do you take Clindy IV on a regular basis?

You need to go back to that GT Univ doctor to show her your improvement. These doctors would never take us seriously. The doctor you talked about perhaps is the same doctor I consulted with. 

However, one thing I had to thank her was she advised me NOT to take 60 mg predneson as my rheumatologist suggested. She found many patients in her research reviews developed kidney problems. Conventional thought this was part of systemic scleroderma —- problems with kidney.  When she conducted the research,  had a control group and experiment group, she found the group did not take pred, had a less patients with kidney problem.

Cheers,

JB

[Kim]

Thanks, Amy, this post is another WOW!  So kind of you to post because it helps those who may be in a low place at the moment.

I've been using an infrared sauna for a few months and it has improved my circulation to the point where my Raynaud's is almost totally gone.  Something you may want to consider. 😉

So happy for your progress………kim

[Kameep]

Thank you ladies for the kind words and encouragement!  My doctor at Georgetown was Dr. Steen – she was a wonderful and kind doctor – but had no confidence in AP.  Luckily that didn't keep her from prescribing it.  I do have her e-mail still and should send her a note.  I have done nothing but the minocycline 100 mg 2x a day.  I have not done clindy treatments or anything else.  I feel very very fortunate at this time.  My symptoms started in 06 with the reynauds and what I thought was carpal tunnel syndrome..  but about 11/08 everything spiraled downhill quickly.. within a month or two I was in very bad shape.  My new husband (married 10/07) was very scared and very confused how this could happen.  He knew I was having issues with my hands/grip and being cold and tired all the time (thyroid?).. but that was just the tip of the iceburg at the time.  Plus I think I hid my general ill-feeling quite well.  Around 11/07 I started having issues with walking up and down the stairs, sitting/standing, even walking because my hip joints ached..   I went on 10 mg of prednisone and that stopped that immediately.  I weaned myself off of it after being on AP for 3 months and the pain has not returned.  That experience was miserable.  I'd go to the movies and sit for 2 hours and have terrible time walking once I got out of the seat.  I hid it all well though.. my husband didn't even realize.. I just didn't want to be a burden so soon in our marriage!  What I couldn't hide was the BP issues that started in 12/08 soon after my diagnosis.  My readings were showing 180/110 at one point and wouldn't come down.. so they admitted me in Gtown for 4 days to get it stabilized and to stop the attack on my kidneys.  Since starting AP, I have not had any more issues with BP and continue to take the lowest dosage possible.  My BP remains low at 90-95/55 and the doctor prefers it to stay there.  Anyway – now I am just rattling on!!

I am doing VERY well.  I am back the gym 4-5 times a week.. back to doing weights (though I can't do bodypump classes where you have to grip the weights for an hour at a time).. back to life as normal, keeping up with my 9 year olds social life..  🙂

That sauna treatment – could you tell me more, Kim?

 

[Maz]

Amy, you can “rattle on” forever if you want! 😀 Your story is a miracle in the unfolding and my heart goes out to you that you had to go through this profoundly life-altering experience as a newlywed. These diseases are never easy at any stage of life, but just when you're starting life out with your new husband, all your joint hopes and dreams before you….well, it's just unimaginable.

Just from reading your messages, it's clear you're a woman of incredible strength and courage and I bet your hubby is more in love with you than the day he married you, especially now that he's witnessed the incredible qualities in the woman he chose to spend his life with. :dude: 

Thank you so much for coming back to share your uplifting improvements with us. Your posts had me smiling from ear to ear and can't wait to learn more about your Road Back as time goes by! 😀 In no time at all, we'll be nagging you for your website testimonial!!!!

Peace, Maz

[JeffN]

Amy what great news! It seems that you and I are in a similar place. I too am on the same dosage of generic mino and the prilosec. Fortunately I did not have the kidney problems. Still have the reflux issue a little, I have been wondering lately if I could reduce the prilosec dosage and wean myself off. Anybody know if that ever works? I also have Raynauds but I am hopeful about that also. I was also fortunate in that I found my way to AP pretty directly after DX and did not use any other courses of treatment.

I am so happy that things are working out for you, may the progress continue – it feels great doesn't it.

PS – Please keep checking in we need more sclero voices 😉

[JBJBJB]

Yes, that is the doctor I talked to Dr. V. S. She is really a very nice lady. 

 

[Kim]

[user=605]Kameep[/user] wrote:

That sauna treatment – could you tell me more, Kim?

Amy, this is an alternative medicine article written by a doctor not selling saunas.  Under the “Research Support for Health Benefits” section there is an interesting part on collagen. 

http://altmed.creighton.edu/sauna/

I have an infrared sauna that has my head exposed so I'm able to breathe fresh air.  That was my personal preference, but others have had good results using the cabinet style.  My hands still feel cool to touch, but they are not spasming and turning red, white, and blue like they used to, and they don't hurt.

kim

[Kameep]

Thank you everyone for such kindness!  I haven't checked in – in a very long time and just wanted to share because I have had such positive things happen and I KNOW it is the AP treatment- it has to be – I'm sure this disease does not just run it's course or go away or start to get better on it's own within such a short period of time. 

I have a friend who has a 7 year old that was just diagnosed with Lupis.  I strongly suggested she check out this website and borrow my scleroderma book as it does apply “across the board” with rheumatoid diseases. 

I feel this treatment has saved my life as I would surely be in wheelchair or worse by now, without it and prayer.  🙂 I cannot leave God out of equation..

 

 

[Kameep]

Jeff – I do know that if I miss my 40mg dose first thing in the morning – I am uncomfortable by 10-11:00.  My esophogus makes noise and bubbles here and there or if I am laying on my left hand side.   That has not gone away..  I'm hoping it does!!

Amy

[JeffN]

Amy – Thanks I currently am on 20mg once a day. I think they make a 10 and was thinking of trying that, if it does not work I can just resume the 20s. I tried a while back to just stopping the prilosec but I noticed a difference and I started taking it again after five days. I had a couple of other things going on at that point so it probably was not a good time to stop. I'll ask my GP about it next appointment.

Thanks

[Maz]

[user=605]Kameep[/user] wrote:

I have a friend who has a 7 year old that was just diagnosed with Lupis.  I strongly suggested she check out this website and borrow my scleroderma book as it does apply “across the board” with rheumatoid diseases. 

Hi Amy,

Worth noting that the AP physicians willing to treat children often require a bit of a journey. There is a Dr B. in Pennsylvania, whose wife had Lupus and he got her well on AP. He treats kids, but also follows his own protocols of supps and adjuncts. This doc would be about the closest to VA of which I'm aware. The others would probably involve a flight.

Here is a link to the Fall 2008 RBF eBulletin, which your friend may enjoy reading, as it covers the longterm remission update of a Lupus/dermatomyositis patient, Karen N. If your friend follows the link at the end of the article, it will take her directly to Karen's remission story on the main site….wonderfully inspiring!

https://www.roadback.org/EmailBlasts/ebulletin_fall08.html

There are also some great Lupus stories in The New Arthritis Breakthrough, by Henry Scammell.

Peace, Maz

[lynnie_sydney]

Thank you so much Amy! Your wonderful story will give much hope to others walking on your difficult – and often frightening – path. Because the nature of this Board is support and education, it is primarily visited by people who need…support and education! It is truly wonderful when people report back here their successes as you have done. Would you consider (prior to a testimonial) copying over your uplifting and hope-giving post to the Personal History and Progress thread? Lots of people who visit the site read through those updsates and, that way, your post wont drop down after a couple of days. Way to Go! 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)

[BrendanG]

Hi Amy

I get the same bubble and gurgles when I lay on my leaft side as well.  GP has prescribed Nexium for the reflux.  Not sure what this is called in the US

 

[BrendanG]

Hi Amy

 

Inspirational – especially since I am commencing mino 200mg per day tommorrow.  Seems to be too many  getting results from AP for it to just be natural remission. 

 

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