Tell me this works!

[kramstine]

Tell me this works!

 

Is it really possible? I need more confidence and some encouragement.

I started AP the 25^th of April. I

[Goodwife]

YES!

AP has worked for my husband wonderfully.  Although he did not have the lung involvement, there are others on this board (some who don't post too often) who did have lung involvement and it too helped them.  Cheryl F, whose  daughter had lung involvement, made tremendous improvements.  Maybe she will reply to you once she sees your post.  My hubby's symptoms started somewhat mild, raynauds, acid reflux, fatigue, and then quickly escalated to extremely swollen hands, ulcers that wouldn't heal, weight loss, more fatigue, stiff and achy joints, etc.   At 17 months on AP, he is his old self.  I am working on his story to post in either the testimonial portion of this site or progress thread.  I still can't say “remission” because raynauds is still a daily issue – but it has greatly improved from what it was.  There are many people who have been treated successfully using AP.  When I started posting after his diagnosis, I was terrified, depressed, frustrated, you name it.  I posted constantly looking for reassurance, guidance, information and support.  Even when I had huge doubts, I was reassured to be patient, that it would work.  I am happy to say that I am on the other end now, where I can tell people, yes, it works, be patient.  A word of warning:  As with most people, when my hubby started AP, things got worse before getting better.  That was scary, very scary.  For him, the first 4-5 months were worse, so it was definitely difficult to be positive about this.  But things did improve around month 6, coincidentally (?) when he started the IVs.  It has been a gradual climb ever since.  Good luck to you and TRY to be patient – it is not easy.  Looking forward to hearing of your improvements!

[Lynne G.SD]

Yes it works!!!!!! I have systemic SD and the doctors did not think I would last one more year from the time I was diagnosed.I did not have lung problems but did have Sjogren's overlap as well as peripheral neuropathy and heart problems.
  It took me over 5 years to figure out what antibiotics helped and which did not.The best for me were  Minocin,Zithromax and Clindamycin.Heavy doses did not help and low dose did.Mino 100mg 3 times a week.Zith 250mf once evry 10 days and Clindamycin 1200mg a week for a few months and taperd down to 150 2 times a week.I am in total remission and the only visible sighn is ridged finger nails.I now have a serious yeast problem but eventually will fix it also.Lynne

[Maz]

[user=263]kramstine[/user] wrote:

I have just posted my personal history on the ?personal history and progress threads-section?. I hope someone can reassure me ? just a little.

Kristine….thank you so much for sharing your story in the progress threads. You've been through so much and now you're on your way with AP! How wonderful that you have the support of doctors in your family!!! :roll-laugh: 

The scleroderma gang here are incredible people and, though I just can't imagine what you amazing folk must have to endure, each one has inspired me with their courage and tenacity to turn their disease around…and I feel sure you will be similarly inspired and encouraged.

AP works…just hang in there and keep posting your questions and concerns as you go…one of these wonderful people will be there for you…of both these things I have no doubt. 😉

Peace, Maz  

[kramstine]

Thank you, Goodwife.

Great to hear from you. I

[kramstine]

Hi Maz, Thank you. I do feel encouraged and inspired by the people here. Thanks.

[kramstine]

Hi Lynne. Thank you for your wonderful story. I can

[steph-sclero]

Hi Kramstine,

First let me say how awful that you have such an aggressive form of sclero. and that your lungs have been so badly damaged. You have every right to feel discouraged among many other things, too many to list. Are you going to be getting any further treatments with clindy IV's? I would definitely, strongly recommend regular clindy IV treatments (i.e. 5 days, once a month). You can't fool around with diffuse sclero. especially with obvious substantial lung fibrosis. Yes, absolutely the AP therapy works for diffuse sclero. but it does not work over night. So it's very important that you remain on some main stream med's while you give the antibiotics time to kill off years of infectious buildup in your body. Sclero. must not be given any chance to continue it's path of destruction while AP works at healing your body. Immuno-suppressants are very crucial while you are in this period of your healing. Please do not feel at any point that you are alone in all this. There are a lot of caring, knowledgeable, experienced, compassionate and down right loving people on this board who will be an invaluable support to you through this horrible fight for your life. Don't ever hesitate to come here and drop the heavy emotional/mental burden this disease has saddled you with right now. As for all your physical challenges right now, fire away any/all questions you might have. There is also lots of info. contained in previous posts on this board which will be helpful to you and you can access in the search area of this site. There will be ups and downs, steps forward and steps back, a lot of trail and error along the way and of course life's ever consistent ebb and flow to it all. Through it all though always remember to remain as positive as you can, (there is always hope), hold tight to your belief system (whether that be some form of higher power), rely on any/all support system you have and hold tight to the fact that there are better days to come. One day at a time, you are only given enough for each day so don't carry yesterday into today and don't worry about tomorrow today.  Hope this is helpful and do take care of yourself.

All the Best,

Steph

[Lynne G.SD]

Hi Kramstine;
     Gee kid,you should have a shorter name  …hehehe..If I was in your shoes I would definately give AP a darn good shot before ever having a lung transplant.Once you have it ,you are on immune suppressants for the rest of your life so that you do not reject them.On top of that you do not know how long you will have those lungs and you might have to do it over again….if they allow it.Transplants of any kind have a limited life and being on  a suppressant will make you vulnerable to any disease that floats by in the wind.
        The most important thing is to get control of some sort with existing meds and find what antibiotics help you the most.I often thought I would kick the bucket before finding what worked for me but I won the battle.
         I will try to get my friend Dolores do do a posting here.Her SD started internally and she had about every possible problem,misdiagnosis and surgeries before finding out she had SD.She had severe heart and lung problems,gave AP a 2 year trial and moved on to MP and is doing very,very well.The docs don't even find a hint of trouble with her lungs,at least that is what she told me a few months ago.
         Hang in kid and don't get in the dumps.  Lynne xxxxx

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