Another update and more good news

[GayG]

Hello everyone…I just got back Friday from a 7 night stay in Jackson Hole, WY.  This isn't the first vacation I've taken since I started getting better (we went to New York City on Spring Break this year) BUT this trip was definitely more strenuous since it inlcuded a lot of walking and some hiking in Yellowstone.  Some of this hiking was uphill and I was surprised how well that went.  The longest of those uphill hikes was 1 mile and the second longest was 1/2 mile.  I did really great on the mile hike but went faster on the 1/2 mile one and had to stop 1/2 way inbetween to catch my breath and let the heart rate slow down a bit.   I walk a mile at home w/o any problems at all but that is on flat pavement, both of these hikes were uphill so that was a real test of endurance for me.  This is a huge thing to me because when I first started to walk for exercise while I was still so sick I could barely make it half way around my block and would drag myself huffing and puffing up my driveway, all of that has changed now.

I've been on minocin 100mg twice a day now for 13 months and have gone from being in a lot of pain and not being able to do much of anything for myself to doing just about anything I want.  I swim 30-40 minutes each day or walk 1 mile, sometimes I do both.  Am up to doing 50 stomach crunches each night and do 2 lb weight lifting for my arms.  I have so much energy I don't know what to do with it all.  The bad thing about that though is that it causes me to have insomnia almost every night and that has been going on for several months now.   I discovered on this last trip that when I started early and went all day to the point of being totally exhausted by the end of the day “then” I would sleep all night, otherwise, if I don't exhaust myself like that, I don't get much sleep, maybe a 2-4 hours.  I'm not sure what this is all about but hopefully it will normalise with time.  I'll take this energy over the fatigue I was having, even w/o the sleep, any day!.

I had skin involvement on both cheeks, hands and forearms, upper arms, upper chest, abdomen, and both upper and lower legs.  The skin on my cheeks, upper chest and abdomen has softened to normal and the other skin involvement is still there but a lot better since I can put on my own shoes, get down on my knees w/ a lot less effort and noticed recently that I can reach behind me almost to the middle of my back.  Before I could only reach behind and could only get my arms and hands a little above my waste.  So things are loosening up.  I haven't had any new skin progression in a long time.  All blood work, Pulmonary function test, and last echocardiogram still shows no internal involvement.  I did have an upper GI a good while ago that showed mild reflux and I take Nexium for that.  My next goal is to cure that with better eating habits and accupuncture so that hopefully someday I won't have to take the Nexium any longer.  I still have Reynaud's but even that has improved somewhat, I get fewer atacks of that than before particularly in my feet.  I've never had problems with ulcers on my fingers and still have use of my fingers and they are straight.  I believe some of these issues were avoided because I started minocin pretty quickly after I was diagnosed.  I'm pretty convinced of that and I'm basing that on how sick I was…w/o the minocin I do believe that I was headed for a lot of trouble and very quickly, so I'm very glad I found this website and got help here early on.  (thks! to you all for that help!, I wouldn't be reporting this progress otherwise).  I thank God for leading me here when He did.  

I've come a long way from where I was last year when this all started in May 2007with congestive heart failure and renal crisis and my blood pressure going through the roof.  Then the skin progression started.  I was very sick, fatigued, felt like crap more days than not and couldn't do much of anything including I had to have help dressing.  The symptoms of Reynaud's started first in October of 2006 so this October will be two years since this all actually started.  I started Minocin in June of 2007. 

I keep writing these things periodically because I hope that someone else will read and be encouraged because it does take patience and persistence and a stubborn will to get better also helps.  I'm not completely in remission because I still have some of the skin involvement but I've improved enough to get off pain medication and I have my life back at this point…Some days when I'm really busy I forget that any of this even happened. I hope that within another year, if not sooner, that I will be reporting a complete remission.  Blessings and healing to everybody! Gay

 

[lynnie_sydney]

Fantastic news Gay – thank you so much for sharing your progress and success – there will be quite a few others right now who will take great heart from it. Be well. 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)

[JOJO19551]

It is great to hear such a positive outcome!  I also started minocin very early after being diagnosed.  You are a true inspiration.  Congratulations.  I hope I am posting such good news in a few months.   JoAnn

[Kim]

I love it, I love it, I love it!  What a nice way to start my day to read this post.

I know it's been a long 13 months for you Gay, but surely your 'can-do' attitude played a big part in your recovery.  How important it is to not let this disease define you, rather learn to deal with it while still living your life.  Of course, you have to make adjustments, but you have choices to make:  you can be a victim or you can fight like hell.  I think we all know what choice you made.

You mentioned tons of energy and insomnia which rang a bell with me.  The first year I was sick I went from being hypothyroid to hyperthyroid in a matter of months and was super-woman putting in long days at lightening fast speed on no sleep.  This lasted about 4-6 months and I lost weight (yeah) and got lots done, all while my thyroid was burning out.  I am now back to being hypothyroid and would give my right arm for that kind of energy again, but it wasn't normal or healthy.  Even with supplementation it is a juggling act and you're never quite sure if it's the right dose for you as mine keeps changing.  Seems like most people with SD report some sleep problems — even men with night-sweats, agitation, etc. 

Enjoy the rest of your summer and keep us smiling!:blush::blush::blush::blush::blush:  kim

[GayG]

Thank you Kim, I will definitely mention this to my doctor because if it is Thyroid I want to find out soon and get that taken care of because it isn't normal.  And if it's not that then maybe it is just sleep disturbance from the SD…and hopefully if it is due to the SD then that it will go away in time….I didn't sleep at all night before last and thankfully last night I was exhausted from the no sleep and did sleep good last night.  But I bet I have insomnia again tonight!….and your right about the fighting back part, I was determined to get my life back.  Not to say I didn't  hit a low point, I did, and I backed off and worked on healing myself emotionally as well (and with the help of Wellbutrin)!  I believe that our attitude towards illnesses like this is very critical in recovery and faith in God's will and prayer helped more than anything.  I was ready for whatever way this was going to go but prayed that if I go into remission I'll spend the rest of my life seeking what He wants me to do.  Now that I'm getting better I can get back to that calling as well in the Singles Ministry at my church.  I also never forgot what Annie told me on this website a long time ago.  She said to DEFINITELY not become sedentary, that you will pay a big price for that with this illness.  She said keep going as much as you can, continue to cook, do housework, etc., as much as you can.  She told me that when she got sick her mother came and took care of everything and she stopped and that wasn't a good thing for her her in the long run, so I remembered that advice and did what she said and I believe it helped tremendously.  That's why I say this website has helped save my life!  So far, so good!  Gay

[MaryP]

Big congrats, Gay!!!!! 

It's wonderful to see and feel all those teeny baby steps forward start to add up.  Yesterday was my 2 year AP anniversary and diagnosis and like you, I credit my improvement to AP and the folks on this board.  Support and encouragement are important.  Hope you keep going strong!

[Randy]

WOW!!!!!

Thank you VERY much for posting this. VERY encouraging!

You have literally brought tears to my eyes, that I too will soon be better and healthy enough to hike in Yellowstone; and I will in you honor!  Thanks again!

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"

[GayG]

I have no doubt that you will do the same…not only does Minocin work but you also have a fighting spirit that will also do a lot of good in the longrun…I was determined to fight this thing with all I had…..I'll be looking forward to your posts when you do that hiking!  Gay

[Goodwife]

Gay,

what an amazing post – I was thrilled to read of alll your improvements – especially “I have my life back” – that is how my hubby and I feel after his dx of SD in Aug 06.  He is not yet in remission, and right now we are in a bit of a backslide, but I think coming out of it.  But from where we were 2 yrs ago, yes, we have our life back!  I am so happy for you and I know your post will be so helpful to others.

[Maz]

Gay…wonderful to hear from you and that you are continuing so well on your road back! Your post is tremendously uplifting and returning to the BB like this to inspire us all is such a generous gift. Thank you!

I was only just thinking back to last year when you had such painful, swollen legs and we were all suggesting ways to get your circulation going….now you're doing these cross-country hikes!!!! 😯 

Ahhhh….the miracle of AP in combination with that warrior spirit of yours!

Peace and God Bless to you, Maz

PS…oh! meant to add to Kim's wise comments about thyroid…insomnia is also a pretty common theme that goes along with “the change.” I know countless women, none of whom have a chronic disease, who are all going through this stage of sleepless nights. So, just thought to add this as another potential consideration, if your thyroid turns out not to be at issue.

[GayG]

Thank you Maz!  and Yes, my legs have been one of my worst problems since I have so much skin involvement there and it made walking difficult and all of that advice I got to get off my butt and get going really paid off…and in the beginning I was retaining SO much water and swelled all the time, it was horrible.  I don't have the swelling anymore and got off the water pills a while back….my legs are still tight in both upper and lower legs but nothing like they used to be….my feet are normal and soft now….I can actually get down on my knees and back up by myself without much effort….there was a time when I couldn't do that at all…OR even get out of a sitting position w/o help I was so stiff and in so much pain….I could go grocery shopping but after about 30 min. I had to have my son go get me one of those scooters…..I'm so amazed at the many improvements…..not 100% yet but a miracle to get this far and to be exercizing this much and be this active!…..also, thank you for mentioning the change of life thing as a possible issue causing the insomnia….I'm 52 and defnitely post menopausal and I never thought that might be the problem but it certainly could be since I do still have occasional phases of hot flashes….I'll have my thyroid checked but if that checks out OK maybe I should look into some of the hormonal cream. Dr. M. in Houston told me the last time I saw her that it was perfectly safe to take low dose prescription hormone replacement for the hot flashes if I wanted to and it wouldn't have an adverse effect on the SD but I just didn't want to take the risk of messing up any of these improvements…..I just have a gut feeling to not take the hormone replacement pills for some reason. 

I've also been thinking about contacting you…it's weird I can't remember what I had for breakfast yesterday but I remember a specific post that you did a long while back.  You had mentioned to someone that you have a dermatologist that zaps those areas of tangectialis (sp probably wrong) (those red spots that show up).  I was wondering what type of laser he was using.  The guy that I used for some past laser on some broken veins on my legs is afraid to use laser on my face or anywhere now since I'm taking Minocin and he said it could burn my skin since Minocin makes you sun sensetive….actually I have read hair and fare skin and all it's done is give me a tan all over (everywhere except my face which I thought was odd) and getting in the sun, even with sun screen, which I wear religiously, just makes me darker, I kind of like the tan……Do you know what your dermatologist uses and did you have any burning issues with it?

Edit Note: Gay, sorry to edit your post and know it was just an oversight, but just dubbed out the physician name and left the initial. 😉 Know you'll understand.

[Maz]

I was wondering what type of laser he was using.  The guy that I used for some past laser on some broken veins on my legs is afraid to use laser on my face or anywhere now since I'm taking Minocin and he said it could burn my skin since Minocin makes you sun sensetive….actually I have read hair and fare skin and all it's done is give me a tan all over (everywhere except my face which I thought was odd) and getting in the sun, even with sun screen, which I wear religiously, just makes me darker, I kind of like the tan……Do you know what your dermatologist uses and did you have any burning issues with it?

Hi Gay….you know, I can't remember what type of lazer my dermatologist used, but it was definitely like a cauterizer….he injected me with a local anesthetic on my face and then just zapped away the red spots and broken, sun-damaged capilliaries. He called it his “zapper!” Looked sort of like a dental instrument that was plugged into the wall by a coiled wire. The end had a metal tip that was kind of bent. That much I do remember. As the areas he treated healed, I was left with very small scabs that healed over in a matter of days. The last few I had zapped on my face were while I was on tetracycline, though….not mino.

Dermatologists are pretty conversant with the use of minocycline, prescribing it all the time for spotty teens, so I am sure a good derm doc would know if there were any contraindications for “zapping” while taking this med. One thing that may be of concern for you, as a sclero patient may be your healing factor…that is, how well you will heal, if your facial skin is still tight at all. For this reason, you may want to put it off a little longer until it's sufficiently softened to guarantee a decent result – too much scabbing leaves more scar tissue. A good dermatologist would probably know all about scleroderma and how well you'd respond to treatment in this regard, given your degree of current improvement.

Another option is to see if you have any lazer specialty facilities in your area and to call them to ask your questions. We have a place here in the locality that does nothing but cosmetic procedures, like lazering.

Sorry not to be of much more help on this. Would love to know how you get on, though, if you do decide to follow up with this. I loved my result!

Peace, Maz

[Kim]

Boy, Gay, if I were you, I'd be afraid to rock the boat with any new treatments while you are on such a nice roll here.  I'm not sure I agree that there are no downsides to hormone replacement so if you're doing OK now, I'd let your body do the adjusting.  Your body's been slammed with enough changes in the last year or two.

The lazer really makes me nervous for you.  SD skin is not like normal skin.  Mine went from being really thick and tight to paper-thin in spots.  Strange — my arms have returned to normal texture and color (for a while they were slick and lost all arm hair) with new baby fine hair, but my hands are a different color from my arms.  What a freak show!  I really don't know what to expect from day to day.  The skin on my hands is like tissue paper and appears to have lost most of the pigment.  Even when I put bronzer on my hands to try to get them to match my arms, they won't pick up the color.  I would hate for your body to start throwing more collagen at trying to heal a lazer treatment.

Just my totally unsolicited opinion……kim 😉

[GayG]

Thank you Maz and Kim for your replies…I think I'm going to leave well enough alone, including the over the counter hormone creams…even with the suggestion from Dr. M in Houston that SD patient can take hormone replacement safely I have this little voice in the back of my head saying “don't do it” and I'm gong to pay attention to that….I think she's wonderful but if I had listened to everything all of these doctors told me by know it would not have always been a good thing.  I can't make it without the very good doctors that I now have but I had to fire a few in the process! …..and it's true things are going too good to do anything that might mess it up…. my dermatologist has a cream that they suggested that I use for the vein issue instead of any type of laser so I may go that route…he said it may take a couple of tubes to get it done but it's only a few light places on my face so that may be the safer route…..Blessings! Gay

[Maz]

Gay, I think Kim's suggestion to avoid lazers till you're well in remission is a very smart one and relieved you agree! I don't know enough about sclero and how one's skin heals when in recovery mode and that part did concern me…so I really appreciate Kim chiming in with her good insights! Thanks, Kim!!!

Hey…by the way, Kim…you know something, you radiant inner and outer beauty just shines in your picture. It brought a tear to my eye when you joked about being a “freak show.” Gosh, you have been to hell and back and well on your way to wellness…I don't see a freak show, at all…I see a courageous, beautiful woman….and, must also tell you…you are one of my personal heroines and I listen to all your wisdom, knowing it comes from someone who has a wealth of experience that you so generously share in very balanced and practical ways! I'm so glad you're here to walk alongside us. 😀

Peace, Maz

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