Scleroderma- HELP WITH NEW DIAGNOSIS

[RSCHAFF]

Has anyone had sucess with minocin for systemic Scleroderma ? What was dosage and frequency and how long took it before results? Current symptoms are only swelling of both hands with hardened skin. Did have stiffness in both knees in past and should der pain, which resolved. Now have just hands and lower arm thickness of skin and limited cvrange of motioin of fingers. Can not make a strong grip.

Pleae advise.

[richie]

Hi–If you would scroll through the archives and individual patient stories you would find many success stories using minocin in the treatment of systemic scleroderma –your initial symptoms are all too familiar and rather common for systemic scleroderma —The first goal in treating a progressive disease is to stop the progression —untreated from here things can certainly go down hill –internal involvement –raynauds –swallowing –reflux etc etc —this is a long term treatment –it took me almost 4-5 years for complete remission –First step is to find a knowledgable doctor –because in addition to the antibiotic very often supporting meds are important –for the Raynauds –to protect kidneys etc —I am certain folks around here would be pleased to give you some names of doctors —

Richie

[Kim]

Yes, yes, yes, this protocol has been extremely effective for many patients with Scleroderma, some even near the end of the road with extensive involvement.  I am an AP success story, and as Richie said you should know this is a long-term treatment.  Each person will have to tweak the protocol to figure what will work best for them so it's best to have an open-minded doctor (which most AP docs are) that will welcome your input and allow you to be involved in making those adjustments.

If you haven't read the book, Scleroderma, The Proven Therapy That Can Save Your Life, by Henry Scammell, you would find it helpful in explaining the rationale behind the protocol.  It also contains inspiring patient stories.

Scleroderma is not something you “wait and see” how it progresses :shock:, which is what my rheumy suggested to me. :headbang:  He's now my ex-rheumy. :headbang::headbang::headbang:

Welcome to the board and let us know what we can do to help.

Take care…..kim

[RSCHAFF]

Thank you very much for the reply. I read that AP normally only works for people that have a mycoplasm isue and not all with Scleroderma. Agree? Did uou have this mycoplasm? Are you in full remission? Were you diagnosed with limited or diffuse?

[Lynne G.SD]

Hi RS;
     Add me to the list of people who are now just as normal as can be.Mino does not only act on micoplasma,it also slows down an enzyme that is needed to form collagen.YUP! I am now a wrinkled old bag. hehehe and wish for some of it back.
   It took me several years as I did not know I had Celiac and lyme that were just agrivating my immune system even more.Once the celiac was controlled AP had me in remission in 18 months.I still get an od ache here and there but it never happens unless I am super over tired.

[JOJO19551]

Hi RS, Add me to the list.  It is 26 months since I started minocycline and I am doing quite well.  I also take Grapseed extract for the Raynaud's and coconut oil tablets which works as an antii inflammatory as well as other things.  Everyone one here is great; this is a great resource for questions and guidance.  You should list in your profile where you are from so Maz or Kim can recommend an AP Doctor.  Best wishes,

JoAnn

[RSCHAFF]

Thaks again for your response. I am so worried that this illness is going to ruin my life, or worse kill me. I have a 17 month old 1st child that i so much want to watch grow up, play with, and have the health to do and share my life with and my wife.

 

Did you have negative labs or abnormal numbers that are now in normal limits?

 

I am from Denver, buy grew up in New Orleans. 🙂

[JOJO19551]

RS, We know the feeling.  I worried for about one year that it would kill me and kind of had some anxiety issues over it, which I think is normal.  My SCLA blood test showed if I would have organ involvement it would be kidneys, so for about 16 months I did a microalbumin urinalysis and they were always fine.  Six months after I started antibiotics I could tell a big difference.  It continued to get better and better.

I also did a light therapy for 26 months, which I just stopped in June.  It is called PUVA.  The light helped break down the collagen.

Thanks to Kim I learned about the infrared sauna and purchased a portable one (about $400) which helped me back to sweating which I believe gets rid of toxins. 

Read as much literature as you can about the disease to get a better understandinhg.  Also see if your community has a support group.  We have a group of 6 yo 7 and meet once every other month to share our progress, suggestions, experiences.  We became a rather close group.

Keep your chin up!!

JoAnn

[Lynne G.SD]

Hey RS;
     Strange as this may sound,my doctor had to go by what she saw as all my labs were normal except for white and red bloods cells that were just a tad off.I have come to the conclusion that this disease ir really weird and no two people react the same or get better the same way.You will be amazed to see how many of us have Lyme also.

[Kim]

[user=1977]RSCHAFF[/user] wrote

I am from Denver, buy grew up in New Orleans. 🙂

Really!!! 😯  I live in Indiana, but grew up in New Orleans too.  Did you relocate to Denver after Katrina?  If so, oftentimes a stressful event can be just what tipped the apple cart to have your immune system go haywire.

My labs have never been “remarkable”, a few out of whack, and one of the more obscure SD markers showed up, but for the most part not bad.  In my case, I learned after I started antibiotic treatment that I also had Lyme which actually induced my SD.  Lyme is very immunosuppressive so many people won't show antibodies to their infections at the very time they are the sickest and trying to get a diagnosis.

Learning to be your own health advocate when you're dealing with a rare condition like SD will serve you well, especially if you choose AP.  You have to be prepared for a dose of negativity from doctors that will tell you you are making a mistake.  My rheumy told me that, but even he said he had nothing good to offer at that time for SD, all the while refusing to help me with the Antibiotic Protocol. :headbang:  I found a doctor who would and now I'm better and haven't looked back.

What I've learned is that time is your enemy with SD.  If I had it to do all over again I would have gone door to door to every doctor in town just to get a prescription for Minocin, any doctor, just start.  My family doc was willing to help me and then I traveled to one of the more experienced AP docs.  Let us know if you'd like a doctor's list for your area.

Take care…..kim

[RSCHAFF]

Wow! Would you believe that i had a sort of intuitive feeling that you had some sort of connection to te city and this is why i decided to not just comment on where i live now. I have been here since july 1994, and was actually on vacation in Europe when Katrina struck.

 

I just got back from the eye doctor and he said that my tearing was excellent, so I now wait for the labs to see if Schlerma is confirmed and what type. I do realoize that all labs can come back negative and i can still have this, or some other disorder, or mixed connective ,Y current symptoms are mild chewing difficulty, which I noticed before I had any notion of a health issue and thick skin only on the top of my hands and top of lower forearms, and minor itchy feeling in the thigh area and bottom of forearms.

 

Minor aches

[Kim]

Nice to meet you, Richard. 🙂

Oh, those mouth issues with SD. :doh:  As my mouth started shrinking, my teeth became misaligned and I was breaking off the corners of my back teeth.  I opted for Invisalign braces to correct the alignment problem and also serve as a mouth guard at night to prevent grinding.

My fibrosis has mostly been muscle fibrosis so I didn't have the typical SD skin that looks burned and leathery………more like a botched Botox job. 😕  Improving your circulation is crucial with SD which I've been able to do with systemic enzymes and frequent use of an infrared sauna.  Others have had success with vasodilators such as Revatio and Viagara, hey, whatever works.  My Raynaud's was really bad in my hands, feet, and ears, and now is almost toally gone, which means I've been able to thin my blood and get it moving again.

Have you started on any antibiotics?

Take care…..kim

[charli]

Hey Kim-  Just wondering if you noticed a difference in your mouth symptoms when you added the Neprinol.  I just ordered neprinol and am really hoping it will help alleviate the symptoms I have with my mouth.  I have pos scl 70 antibodies and have been trying to take the minocin on and off for about a year.  I still only take 50 mg MWF.  I still feel very sensitive to it but don't want to give it up.  I do not have an AP doctor or even a rheumatologist.  I use my PCP to rx it for me.  Just curious and hoping the neprinol will help with pain and my mouth stuff!!

Thanks and take care! 

Charli

[Lynne G.SD]

Hi Charli;
            Depending on which country you are in you might have Lyme like so many of us SDers.Have you been tested?I wasted a decade of time on just AP and now have to start all over.FRIG!Could you add a bit of info to your profile.
                Lynne

[Steve201]

I'm in washington state….otherwise known as Warshin-ton….had been diagnosed with systemic SD with lung, skin involvement and internal organ problems..(don't like to say failures)…anyway..wasn't given 6mos when first seen…

I was put on Cytoxan 100mgs x 3 per day and minocycline at 250mgs x 3 per day….10 yrs later I'm still vertical and still kickin….so..in my experience…it works well…had to change to a different AP ..tetracycline only cuz I was getting this killer tan and all the homies were hi 5'ing me…..

 

definitely recommend you getting on some sort of ap..

 

Steve

[Author]

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