Help needed from scleroderma AP users

[lanolin]

Hi all.

I’m torn between my sceroderma specialist (covered by insurance) and my AP doctor (does not accept insurance).

Today the scleroderma specialist told me that he isnt a believer of minocin, that no one has been able to replicate the work of dr. Threntham. I have been on minocycline for 7 weeks. Now on 100mg twice a day, MWF. I’ve experienced some relief in my hip joint, my lips don’t stick to my upper teeth at night anymore (don’t know why that happened – I have no facial skin involvement), my foot and hand swelling is not consistently better but some days are, some progression of skin shininess on back of hand.

The specialist says that because I have darkening on my feet (not from minocin) that I should NOT use minocin and should start cellcept. Quite frankly, because darkening is the most obvious symptom of mine, darkening from minocin does scare me.

My AP doc will only give meaningful advice with another appointment. Each appointment is a hefty sum. I’ve been to about 6 in 6 months.

All I want is to get better and not get more down with side effects.

I felt very strongly about doing AP and not starting cellcept. I have minimal skin and minimal lung involvement. DCLO of 70%.

Do I give up on AP forever, or do both? Or just cellcept? I feel as though I don’t have the time to do all of this trial and error.

Any advice appreciated.

[jasregadoo]

Do you have a GP you could talk to? That would be my next thought. And if you’re scared of the skin darkening on Minocin, what about trying Doxy?

I don’t have scleroderma, and I’m newer here, so I don”t have a lot of info. But those are my thoughts. If you don’t want to take the Cellcept, try to find another way.

It’s a pain, I know. I do wish this treatment were more readily accepted and supported.

[Lynne G.SD]

Hi Lanolin;
Don’t expect much to happen for at least the first year and yes,there is a period where the SD still progresses but that only lasts a few months until the mino really kicks in.Cellcept is a good med but you can only take it for a2-4 years and by then it has pretty well destroyed your immune system and you have to stop.Then what do you do?
Blue patches come after quite a few years on mino but I would turn blue from head to foot rather than have my old petryfied body back.YES,I say petryfied because it was happening to me.I am an archeologist and I was beginning to look just like the mummies I used to work on.Bad hyper pigmentation is part of SD also

[PhilC]

@lanolin wrote:

I’m torn between my sceroderma specialist (covered by insurance) and my AP doctor (does not accept insurance).

When doctors say that they don’t accept insurance, what they’re really saying is that they don’t want to deal with insurance companies, and won’t file the paperwork for you. You can still file the claims yourself and try to get reimbursed by the insurance company.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[JustDiagnosedChris]

“no one has been able to replicate the work of Dr. Trentham”… baloney! How about the hundreds of patients who docs like mine have years worth of records and recorded progress of getting better? You sound like I did 11 months ago, all skeptical and whatnot. The bottom line is AP reverses fibrosis in Scleroderma. The antibiotics counter the over-production of collagen. My heart and a really messed up beat. It wasn’t even consistent in how messed up it was. For 8 years straight! In 6.5 months mt heart now beats as normal as it has in 8 years. And the raised brown skin I had on my legs is totally gone. The morphea in my arm, softened with tons of hair. My energy is coming back. I think your “specialist” needs to specialize in something else. I had calcinosis on my left ring finger. It disappeared in 2 months on AP. You gotta give it time. 7 weeks ain’t nothin!

[JustDiagnosedChris]

Another note, my GP is a very prominent doc here in riverside county. Well known and respected. He’s all for AP. He thinks that since he sees it working that its way better than taking the crap that doesn’t even try to reverse the disease.

[lanolin]

Has anyone done both cellcept and AP?

Specialist related a story of patient from massachusettes he had who was a firm believer of AP and they parted ways because they didn’t agree. He made sure to mention he has pulmonary hypertension now.

So difficult a decision.

[lanolin]

Did not know that PhilC. Interesting

[Lynne G.SD]

Good morning Lanolin;
You might not even need an AP doctor unless you are very sick.How about your GP?Re Cellcept,If you have lung or heart problems you might want to use the two meds but must remember it takes around 6 months of Cellcept before it even starts to kick in.Been there,done that.

[lanolin]

Thanks all.

I’ve scared myself enough from taking cellcept after some googling. I’m going to continue minocycline till my next PFT in July. That will be the deciding factor.

I’ve realised I may not be on the right dosage. I’m on MWF Only. Reading that it’s supposed to be every day?

[richie]

Hi Dr Trenthams protocol called for 200 mg daily every day –Talk to your GP and you might inquire about another doctor who uses antibiotic —-I have a personal policy of not attempting to convince anyone that they must use an AP approach –I dont wan t to peddle any protocol or approach —I go all out to help if someone is starting the antibiotic approach –I give plenty of advice and tips based on my own experiences in recovering from scleroderma —but as far as what to use -its all your decision !!!!
richie

[richie]

Hi Did this so called scleroderma specialist give you a calcium channel blocker to aid in preventing pulmonary hypertension or some other med to strengthen your lungs —You mention a PFT in July -Is there any lung involvement now

---

All these so called specialists and experts hop from one drug to another with lousy results –Now its cellcept –UCLA had cyclosporine a few years ago when I first got sick there was a drug called relaxin —Over a 16 year period these hot shots have not come up with anything to treat the over all disease of scleroderma – THe only improvement is in treating the lungs –They have only produced a lousy 10 year mortality rate for diffuse scleroderma —With me its 16 years later and I am just fine –I will also bet my scleroderma was much much worse than yours !!!!!!!!!!!!!!!!!! If you plan on giving it two months –dont waste your time –give up the minocycline now !!!Two months is nothing –it took me 5–6 years to get all better !!!! BY the way –Not being able to replicate Dr Trenthams results is just so much BS —There is a doctor in Riverside California who is just as effective as Dr Trentham was with a tremendous amount of success stories in treating scleroderma with antibiotic –there is also a doctor in Iowa who is also very successful in treating scleroderma using antibiotic —I am a gambling person —-I would love to bet your so-called specialist that these two doctors success rates absolutely and positively dwarfs his results –I am sure there are other doctors as well who use antibiotic and are successful —-

[JustDiagnosedChris]

To add to Richies comment, that doc in riverside is personally my doc. Just saw him yesterday. There was an article about him and his patients in USATODAY about 15 years ago. He’s the best there is. And oddly enough, I ended up moving to riverside county just a few months before I found out I had SD. If you want any info on him I can help you out. P.S. my doc is a real certified rheumatologist as well.

[lanolin]

Thanks guys. I’m in upstate NY (3+ hours north of NYC). I Don’t have confidence in my GP for this. I’ll have to see if this specialist will just work with me to monitor my organs and overall symptoms while on AP. I’m not sure he will be willing but I’m going to try. I’m not trying to make him a believer, I just want the confidence of being closely monitored. Wish I was closer to a reputable AP doctor.

[Lynne G.SD]

Hi Lonolin;
I had several doctors like you have.I eventually figured out that the trick was just not to tell them I was on AP.I just took their prescriptions and never filled them.Once I was well I went back to see one of the worst and rub his nose in it.Today he is prescribing mino to others but is not monitoring them.Probably just too lazy to learn about it .

[Author]

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