Experiences with Massachusetts AP Docs

[jasonjuul]

Hello,

  The Roadback Foundation graciously provided me a list of about 5 or 6 AP docs in Massachusetts. Unfortunately the one I most wanted to take my now 14-year old daughter to, who has Mixed Connective Tissue Disease, is Dr. T in Boston. Unfortunately his hospital doesn't allow him to treat patients under 15. My daughter doesn't turn 15 until next year and I don't want to wait that long.

  If anyone on this board has experience with other AP docs in Massachusetts, could you send me a private message. I would rather not just pick one at random. I would prefer to go to someone who comes on good recommendation.

  A little background: When my daughter was dx'd with MCTD back in late 2003, I learned about AP and wanted to try that approach before putting her on things like Methotrexate. I went against my better judgement and decided to follow the recommendations of her Pediatric Rheumatologist. She started on MTX in early 2004. She tolerated the MTX well and seemed to respond to the treatment.

  Back in April of 2008, one of her Pulmonary Function tests, the diffusion capacity (DLCO) showed some decline. Her Ped. Rheum. thought the MTX was affecting her lungs and so switched her to Cellcept. After a year of losing a few points on her DLCO with every PFT, he began talk of switching her to something even stronger, such as Cyclophosphamide or something called Gleevec. Just the alternate name of Cyclophosphamide (Cytoxin) has scared the heck out of me. Before embarking down this road, he increased her dose of the Cellcept to see if that has a salubrious effect on her lung function. Normally they only do the PFTs every 3 months. We got them to agree to do the test after 6 weeks so we go back in early August to at least perform the DLCO test.

  I'm feeling like AP is my last best hope. Her Ped. Rheum said he had no problem prescribing Minocin to my daughter but he doesn't really believe in it (as evidenced by his comment that he didn't think it would work) but this is a far cry from 5 or 6 years ago when I asked him about it and he completely dismissed it. I think I would rather AP be prescribed by a doctor who believes in it though.

  I've seen a lot of the success stories here and have even corresponded with a couple of you. Thank you all. You provide a great service and give an angst-ridden father a much needed morale boost.

-John M.

 

[Suzanne]

If you really want to see Dr. T, I'd say take the mino from your current ped rheum and make an appt. with Dr. T on your daughter's 15th birthday.

You might have to wait awhile to see any AP dr., so since she can start mino now, I'd want to wait to see the doctor I preferred.  Plus, you will still have a relationship with your current ped rheum who knows a lot about your daughter's history.

Good luck and keep us updated!

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Maz]

Hi John,

I will send you a PM (private message) with some info about two of the docs on the list other than Dr T for you. To retrieve the message, just go to the above right of this page and click where it will say, “You have 1 new message.”

Peace, Maz

[superperroRA]

John, I live in MA and I went to see Dr. T a few times. Different people have different opinions about him. You better search the roadback.org bulletin board archives to see what people have said about him. Personally, I think he is the worst doctor I've had in my entire life. Richie thinks he is very good.

I have RA.  I  take
Minocin 100mg  twice  a day on MWF
azythromycin 250mg on Thurs and Sun
Votaren(in suppositories) 50mg every 9 hrs.

I end this post by cutting and pasting my standard advice:
==============================

IMP: Make sure you get tested for Lyme (by one of the standard labs like Quest, or
preferably by IGENEX)

For RA:

You need to take an anti-inflammatory besides the minocin.
I would avoid methotrexate and prednisone like the plague.

I would give a trial to all 3 of the following NSAIDs as soon as possible.

Mobic, Celebrex and Voltaren.

Different nsaids work differently for different people. That
is why I advise you to try each for a few days. (Taking
two different nsaids at the same time is dangerous.
You can rotate them though).

I find that for me Mobic does nothing (some people find it highly effective.)
For me, Celebrex works okay, and voltaren works great.

Celebrex and Mobic are COX2 so they are milder on the stomach,
but they can cause strokes.

Voltaren is not COX2 so it is harsher on the stomach but less
likely to give strokes.

Many people take prilosec (or some other proton pump inhibitor)
to protect the stomach lining from the nsaids. The nsaids tell
the stomach to produce less mucus, and the mucus is what protects
the stomach lining from the gastric acid. The prilosec reduces the gastric
acid.

Taking an NSAID in pill form  means 100% reaches the stomach, whereas
taking it as suppository means much less (let's guess 50% reaches the stomach).
So, besides taking prilosec, taking the NSAID as suppository can help reduce
ulcers. That's why I take my Voltaren in suppository form

Celebrex is real expensive in the US, but you can buy it for 1/5 the price
in Canada (for example, at buylowdrugs)

Voltaren suppositories are not available in the US, but
can be purchased in Canada (for example, at buylowdrugs)

Edited to remove doctor's full name as per Road Back policy. RBFV

Added Lyme testing comment and corrected some misspellings. SuperPerro

[richie]

Hi

I dont just think he is very good –I think he is the best and all credit to him for not only saving my life but getting me all better –for MCTD or Scleroderma in my opinion he is THE man !!!–

richie

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