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I AM IN NEED OF ADVISE. I HAVE BEEN DIAGNOSED IN THE PAST 6 MONTHS WITH SCLERODERMA, CREST. I HAVE RAYNAUD'S AND MY SKIN BIOPSY SHOWS SCLERODERMA ON MY ARMS, LEGS, FEET, HANDS AND FACE. THERE IS NO INTERNAL ORGAN INVOLVEMENT AT THIS TIME. I AM TAKING A CALCIUM CHANNEL BLOCKER, ,MINOCIN AND USING A STEROIDAL CREAM ON MY HANDS. I ALSO AM RECEIVING PUVA, THE LIGHT THERAPY. I RECEIVED 9 TREATMENTS SO FAR. I AM UNSURE WHAT TO EXPECT WITH FEELING BETTER. I HAVE JOINT PAIN, MY HANDS ARE TIGHT AND AM OVERALL MISERABLE. I HAVE TAKEN THE MINOCIN FOR 40 DAYS NOW. WHEN CAN I EXPECT TO START FEELING BETTER? I AM VERY FRUSTRATED. THANKS, JO ANN
Dear Jo Ann,
Great job getting started on AP and being so proactive in getting your life back! You'll find a wealth of info here on the site and many other sclero patients who can share the story of their road back with you. Mino works very well for scleroderma, by all accounts, but it can take a while to kick in and some do experience worsening before improving. This is normal. If this helps, the way I try to look at it is that it's probably taken a lifetime of pathogen load to build up to the point of triggering my disease, so it's going to take a while to turn it around.
Have you read the Scammell books, yet? “Scleroderma, the Proven Therapy That Can Save Your Life?” If not, this book and “The New Arthritis Breakthrough” should give you lots of hope and information about what to expect with AP.
The early months can be very frustrating and I empathize greatly. I had severe RA and it's taken me about 20 months now to get to the 95% improved mark (with some uncomfortable herx days interspersed in between), so I understand how you must feel with this…some days it just feels like you're getting nowhere, but I'm sure the sclero patients here will be a comfort and be able to tell you to hang in there for the better things to come. In the meantime, if you haven't read the April issue of Womans' Day Magazine, this article should keep you going! This story is such an inpiration for anyone with scleroderma who is starting AP:
http://www.womansday.com/health/12875/i-didnt-recognize-myself.html
Peace, Maz
Hi Jo Ann,
I am at 4 1/2 mos AP, and I believe I am seeing the first indications of skin softening – specifically my forearms. Additionally the debilitating fatigue is gone (although my recent Rx of Lyrica could be responsible). Fingertip ulcers (you didn't mention this) were really improved within the 1st month of AP.
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"hey jojo,
I was diagnosed with scleroderma Crest and polymyocytis and interstitial lung disease in 1999. I took the steroids and immunosuppressants, which helped at first, but I knew it wasn't the answer. So I went with the AP therapy in 2001. I weened off ALL the other stuff and only take the Minocin for the auto-immunes. when I started I herxed pretty good, so, as far as feeling better, it took a couple of months. I started noticing the tightness getting better after about 3 months. I had such tightness in my hands and arms I couldn't reach over my head without my skin feeling like it was gonna rip. My mouth was so tight I was only able to take tiny bites of anything. took me forever to eat (lost 20 lbs.) and my neck was so tight that when I tilted my head back it lifted my boobs. :blush: I have no tightness now, and haven't for many years. my lungs have improved as far as capacity, and DLCO has doubled. Iget a little improvement it seems every year.
I know it seems like forever but hang in there, it WILL get a lot better.
wishing you all good things,
jan h
THANKS MAZ FOR THE ENCOURAGING INFORMATION; I TRULY APPRECIATE IT. I DID READ THE BOOKS; THEY WERE VERY HELPFUL. I HOPE WE ALL CAN HELP SUPPORT EACH OTHER. JO ANN
RANDY, I DO NOT HAVE THE SKIN ULCERS, FORTUNATELY. GLAD TO HEAR 4 1/2 MONTHS AND SEEING IMPROVEMENT; THAT IS VERY ENCOURAGING. THANKS, JO ANN
oh….I forgot to tell you that putting the steroid cream on your hands (i use for eczema) may or may not help, but it does toughen the skin and make it thicker.
🙂
jan h
[user=512]jan h. pm, crest[/user] wrote:
I was diagnosed with scleroderma Crest and polymyocytis and interstitial lung disease in 1999. I took the steroids and immunosuppressants, which helped at first, but I knew it wasn't the answer. So I went with the AP therapy in 2001.
Jan,Thanks for joining the RBF Bulletin Board. It is so nice to see another paticipant who has been on AP for a few years.
Please consider submitting your story for posting on the RBF main Website. Send it to testimonial@roadback.org.
WELCOME!
Cheryl Ferguson
Hi Jo Ann
I also have scleroderma crest, I am taking 100mg doxicycline twice a day, and have been taking it for about 90 days, I can say that it has been in the last week that little things seem better, I am not as tired, and my hands don't seem to be as swollen as they use to be, my joints still ache a lot and I am hoping that this will subside soon, just hang in there it will get better even if it is a little at a time
Darlene
Hi
I had a bad case of diffuse scleroderma -the skin on my hands was so tight that all my fingers curled —it is good that you are taking a calcium channel blocker that helps with Raynauds –you might also speak to the doctor about an ACE inhibbitor –that helps with kidneys and pulmonary hypertension —bear in mind it takes quite awhile to see any progress –with me it took about 6 months for the fatigue to lift –then about a year or so for skin to start improving —longer for stiff tendons and other things –the curled fingers totally straightened after about three years —an important point to remember —Along the way you may even pick up more symptoms –I did —Swallowing became an issue after about one year on minocin and Raynauds actually got worse —long story short today –I am completely in remission with my hands back to full strength and fingers totally straight –its a long fight but its a winning fight -Dont miss doses of the minocin and stick to it carefully –it will work
richie
Hi Jo Ann,
At another site last week a well-known doc said that Scleroderma should be treated aggressively with Clindomyacin I.V.'s and Minocin. Is it possible for you to get five days in a row of I.V.'s then maybe once a week for a time? I did this for two years. It will accelerate your healing. Just doing Minocin will take a lot longer. If you are really in a bad way, please suggest this to your doc. Be sure to take probiotics and maybe some Diflucan if you go more with an aggressive treatment.
Hugs,
Diane/WI
Hey Jo Ann, and welcome.
I agree with what Diane said. I took Mino for about a year which knocked down a large bacterial load and things sort of plateaued, then had a round of Clindy IVs in Iowa with Dr. S. which got things moving again in the right direction. We then tried several oral abx combos, but the one that worked best for me was Mino/Zith.
Patience is the name of the game here. Good luck……..kim
[user=16]richie[/user] wrote:
I am completely in remission with my hands back to full strength and fingers totally straight
This is so encouraging. These type of stories keep me going each day, Richie. May your healing continues and some day you will completely off the medicine.
Do you still have Raynaud's? That's something really bothers me. I started Raynaud's last Sept, and Indiana winter was pretty bad. I had a bad winter. This winter I will try to get some Infrared electric heater to keep my house warmer.
In health we cheer!
JB
[user=512]jan h. pm, crest[/user] wrote:
I have no tightness now, and haven't for many years. my lungs have improved as far as capacity…
Hi Jan h. everytime I read something positive about lung improvement w. AP, I get happy and hopeful. Right now I can hardly carry myself from the bedroom to the bathroom because of my lungs. If you get time I
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