Potaba

[Daubs]

I finally received my old medical records from 1961 when I was first Dxed with SD @ age 11. I am now 60.
I wanted to find out the medication that the Drs gave me back in 1961 because the SD when away except for my left arm remaining smaller and crampy. The SD did not progress or even effect my life until it came back big time @ age 59.
The medication that the Drs gave me at age 11 was

POTABA

I researched a few sites and this is what I learned.
This is amazing!!!!!!!!!!

From Drugs .com
“What is Potaba (potassium aminobenzoate)?
Potassium aminobenzoate is a form of Vitamin B, which supports many important body functions.

Potassium aminobenzoate works by causing a softening of skin or tissues when used over time. It also raises oxygen levels in tissues of the body.

Potassium aminobenzoate is used to treat conditions that cause skin or tissues to harden, including scleroderma (skler-oh-DERM-a), dermatomyositis (der-mat-oh-mye-oh-SYE-tis), and Peyronie's (pe-ROE-neez) disease.

Read more: http://www.drugs.com/mtm/potaba.html#”

From Net Dr

“Main Use:
Hard or thickened skin
Active Ingredient:
Potassium (para-) aminobenzoate
Manufacturer:
Glenwood

How does it work?
Potassium aminobenzoate is a chemical that belongs to the Vitamin B group. It is used to break down parts of skin that are hard and fibrous.

It is not fully understood how potassium aminobenzoate helps break down fibrous tissue. It is thought to increase the amount of oxygen taken up into the tissues. Oxygen is required for a chemical in the body called monoamine oxidase (MAO) to function. MAO acts to break down fibrous tissue. By increasing the levels of oxygen in the skin, potassium aminobenzoate is thought to increase the activity of MAO on hard and fibrous tissue.

This medicine potassium aminobenzoate has been used for treating disorders of excessive scar-like tissue formation (fibrosis) such as Peyronie's disease. It is available as capsules, crushable tablets or granules.

What is it used for?
Chronic disease characterised by thickening and scarring of the skin, joints and internal organs (scleroderma)”

Wow! I can't wait to share this with my present Drs

I currently have been on AP treatment for a month. I have a very positive attitude that I will be better in time. Potaba seems like something good to add to my treatment. It worked when I was a young boy and I feel it can work again.
Daubs

[redrock]

Where has this medication gone? Is it still prescribed?

[Maz]

Hi Daubs,

Nice to meet you and welcome to the RBF forum! 🙂

If you type in potaba in the search box above, all past threads with mention of it in previous discussions will come up, if you want to talk about this with those who have tried it.

All the best with your new road on AP and look forward to hearing of your improvements as time passes.

Peace, Maz

[Kim]

Good luck, Daubs, and please let us know how it works for you.  As a fellow SDer, always curious. 😉

Take care…..kim

[aynurrzepa]

Daubs, your story stroke a cord in me… I have SD (diffuse antibodies but limited only to hands/face) from probably as early as 3.5 years of age… And it did not really bother me to date (I'm 33 now) except for Raynaud's from age 3 which I would call mild but here I hear if I have ulcers then it's more than mild.

I was hoping that SD doesn't get worse or come back after a long period of “no progression, stabilisation, little and no new symptoms”, and considered myself lucky and felt spared from the horrible outcomes of this frightening desease. I still feel lucky…

However, deep inside the fear remains… Which is the reason I have started AP 1.5 months ago. Because I want to catch the bull by it's horns before it even starts thinking about hitting me again… I am very positive, too. Done it once can do again!

As a kid, I was told my condition will slow down, stabilise and maybe even stop or go away completely after puberty (i.e. hormonal changes). Which it did. I then recently read on the net that one lady was told almost the same thing except for she was warned about changes (towards good or bad) that can happen once she hit the manopause… That was the fist time I seriously felt I was still at risk and now after your post the second. Until then I was really hoping such things don't happen :(… Never mind.

I am glad that you are so positive about fighting SD now that it come back. I believe and wish with AP plus whatever supplementation suits you most, you will send it back away for another 50 years again!

I never took any meds for my SD/Raynaud's. Doxycycline is the only drug I have ever taken for it, the rest are all supplements. I did not even take supplements as a kid… Not sure how I managed but hey, here I am, typing away fast with almost 100% normal fingers (minus mild ulcers and slight hardening).

I have been thinking about potaba (aka PABA) for a while. I even bought it. But still not taking it. I read one with SD has to take it in real high doses to get the desired terapeutic effect…

As Kim also mentioned, there are also systemic enzymes. And I will certainly invest in sauna one day (when I have more money and manage to convince my hubby). I think both are great for anbody with SD, no matter what degree of it you have… I also take MSM (it reduces inflammation which I don't have but it's also recommended for softening skin).

And I am still wondering to add PABA/potaba or not, if it would be too much with systemic enzymes, MSM and tetra abx also contributing to collagen breakdown and slowing of its formation. I am sure as any of us here, I would try absolutely anything if I knew it was good for eliminating SD's effects. And as anybody else here I also need to know when not to overdo.

If I may ask, what SD type did you/ do you have? Have you ever had Raynaud's? I wonder if you remember how much potaba you were taking as a kid? Please let us know what dosage you get prescribed now? Our doctors here in the UAE have no clue…

[Daubs]

I had linear SD as a child. Now it's systemic. It has progressed very quickly in the past year and I can hardly function. My fingers were blue and get blue easily. My fingertips were almost all ulcerated and scabbed and I couldn't use them. A combo of nifedipin and silver shield cream helped my fingers and now they are doing much better. My whole body seems to be effected and I can hardly move. I have constant diarrhea and bloating. Life as I once knew it isn't there anymore. When the SD came back it seemed to start in my fingers.

Looking over my med records is difficult because they are very hard to read. It seems that they had the wrong DX for 2 yrs. Then in June of 1963 they finally dxed the SD. The RX on record says Potaba+ 6       4 capsules 4x's daily. It says I followed the same protocol till Oct of 65 and I was considered pretty much well.

I'm going to ask to get Potaba tomorrow when I go to the Dr. I want to stay on the mino and see if I can do both. It seems like the med is just a special synergistic blend of potassium and a B vitamin. It's a prescription and not an over the counter supplement. It seems that it can be used without the bad side effects of the chemicals that the mainstream Dr's. prescribe.

You are the 1st person that i met here that has a similar background with the child onset of SD that basically goes away. This place is great for helping one another. Thank You

Together we will make it

Good luck and think possitive  

[Kim]

Daubs,

Have you considered that when your SD came back with a vengeance  after being in remission from Linear SD, that you could have been infected with Lyme (you live in an endemic area for Lyme) which induced the Systemic SD?

I am one of the many people on this board that have SD induced by Lyme.  I didn't know I had Lyme when I was dx/d with SD and had had improvements, good improvements, on AP alone, but then plateaued and was still sick.  It was then that I insisted on being tested for Lyme (Igenex Labs only) and tested “positive.”  Treating the Lyme has cleaned up almost all of my remaining SD symptoms.

When you get time you might want to “search” the board for previous discussions on Lyme testing.

Take care…..kim

[Daubs]

Kim,

Yes I definitely feel that Lyme was a main factor to bringing back the SD in full destructive force. I have been bit by so many ticks over the past years that I stopped counting. Ticks in my area are horrible. I have always been an active outdoors person and love the woods. I asked the regular med Dr to test me for Lyme but he said it came back negative. I never believed him. A natural Dr told me I definitely had Lyme without even a blood test and was the first Dr to mention SD. It seems that in our area so many people and even our pets are coming down with all the symptoms of Lyme. It is so sad. 

I found my AP Dr from someone here that e-mailed me 3 Dr's in PA that did AP. I am blessed to have found her. She is wonderful. She wanted to start the AP immediately because the SD is so far advanced. She said she is definitely testing me for Lyme and sending it to the only lab she trusts which is in CA.

I will keep everyone informed on how things are going. I thank everyone here for all the help and knowledge.

Jim
 

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