Newbie Losing Patience (and hope)

[ZeZoZo]

I was diagnosed with RA by my family doctor in October, and a Rheumatologist in November. Now the fun is starting!

I function pretty well just by taking one Motrin daily. I still have pain in the morning when getting up, but it's manageable, and once the Motrin kicks in I do pretty well. I saw a local Rheumatologist who prescribed Prednisone, folic acid and Methotrexate. After reading up on the Methotrexate (and seeing what Prednisone did to my Grandma), I decided not to take the medication. I suggested AP to my Rheumatologist, who's tone and words basically said if I wanted to go that route I should find another doctor.

I have since seen a doctor who was on the list of doctors I received from RBF, but I think they're backing away from Minocycline. My last conversation with the doctor was about my next appointment and getting started on Plaquenil.

At this point, I'm unhappy, tired, sometimes in pain, and just want to get started on the protocol already! Why is it so hard for the doctors to prescribe this form of treatment? Are there any other doctors in the Northern Illinois area who will listen?

I apologize for my pity party.

[maz.aust]

Sorry to hear you are having what seems to be a hard time of it … but believe me when I say it's early days for you, & even if you can find someone to prescribe what you want you may need to tweak the doses until you get one that is right for you.

Seems to me it is difficult for the rheumatology profession to accept or even contemplate a treatment path that is different to the one they learned about during their training.   

If your current doctor prescribes AP as a treatment path they maybe they are contemplating giving you the plaquenil as well/ instead of minocin to stabise you ?? Next time you see him/her ask them — questions are always good!

Please don't worry about not taking minocin, it isn't the only abx available to you, if you look at my signature line you will see that although I am on AP myself I am not taking minocin.

Good luck,
Maz – aust

 

  

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[marg]

So good you're thinking of AP so soon after DX. It does seem that if you can get started close to onset you have a really good chance of getting results fairly quickly – though AP requires patience as it is not a 24 hour miracle treatment! My daughter, who started early on for severe RA had very good results. Best of luck!

[m.]

I traveled from the Chicago area to Iowa to see Dr. S, and thought it was very worth the trouble and time.

[Randy]

Please don't feel sorry for yourself.  You are way ahead of the power curve and you should pat yourself on the back!  What you have already found out takes most of us a lot longer, and going through a number of Rheumys is pretty typical. Maria, from Chicago, went through a dozen or so, I think.  Others tend to be on DMARDS and Prednisone for a long time before getting smart.  So, good going, and get yourself to another (more experienced) AP doctor.  With your proactiveness, you will soon be getting better.

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"

[Joe M]

[user=223]Randy[/user] wrote:

Others tend to be on DMARDS and Prednisone for a long time before getting smart. 

Hmm, not sure I would agree with your definition of “smart”.  Insanity, as they say, is doing the same thing over and over and expecting different results….

[bonnielou]

I am in the north suburbs of Chicago – and my rheumatologist — while not an AP or RBF doctor, was willing to prescribe mino for me as long as I agreed to start on plaquenil as well. It has proven to be a great combination for me. Over the last 2 years, as I have improved, she has cut the plaquenil way back — started at 400 mg/day, and now I take 200 mg, just on Saturday and Sunday. It's a very low maintenance dose. I have been taking the mino MWF the whole time. I know it wouldn't be her choice of medications, but she keeps refilling the prescription. And she knows I am doing well. She would credit the plaquenil, but she's willing to humour me!

She is a really good doctor — takes her time, listens to you, is personable and very thorough. Obviously going to Iowa to see Dr. S is a great AP choice — but it's not  practical for everyone — and it's not always necessary — particularly since you are getting such an early start. I will be happy to send you her contact information if you like. ….

Don't lose hope — you are in a great position and you can get this under control.

Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[ZeZoZo]

bonnielou, I would love the contact info! I thought about going to Iowa, but it's so far away, and I just don't have the vacation time right now.

[orchid]

Zezozo –

I sent you a PM with the name of a doctor in Northen IL willing to prescribe minocin. She is not an AP doctor but a very nice rheumatologist and willing to work with her patients on their treatment.

[Jo]

[user=515]orchid[/user] wrote:

Zezozo –

I sent you a PM with the name of a doctor in Northen IL willing to prescribe minocin. She is not an AP doctor but a very nice rheumatologist and willing to work with her patients on their treatment.

 

This thread is sooo NOT what I hoped to see tonight, though no doubt it was what I needed to see.

I would very much appreciate it, if anyone in the Chicago area who has a fabulous AP doctor could send me a PM with contact info.

My brother in law has finally agreed to check it out – and the last thing I need, is a doctor who is backing off of AP, turning him totally off the program.

Mr Perfect is doing fabulous, finished with the treatment phase, and simply doing the maintenence phase now.   Still rotating every 2 years so that hopefully we don't run into the “did it for ten (or more) years but it's no longer working phase.

Jo

[suera]

Zezozo, don't lose hope! That you are getting by on Motrin alone is unbelievable!! I think you have caught this monster early on and are off to a great start. Good luck.

Sue

[PhilC]

[user=61]bonnielou[/user] wrote:

I am in the north suburbs of Chicago – and my rheumatologist — while not an AP or RBF doctor, was willing to prescribe mino for me as long as I agreed to start on plaquenil as well. It has proven to be a great combination for me.

Plaquenil is not a bad idea, actually, since it kills protozoa. Bacteria are not the only microbes that can cause inflammatory diseases. Given a choice, I'd much rather take that than prednisone or methotrexate.

Phil

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

[ZeZoZo]

I agree – methotrexate scares me to no end.

I think I'm going to talk to my current doctor and see what he has in mind. I can always say no, right? 🙂

And I just want to thank everyone for their replies. It is SO nice to be able to talk to people who understand.

[Maz]

[user=1786]ZeZoZo[/user] wrote:

I think I'm going to talk to my current doctor and see what he has in mind. I can always say no, right? 🙂

Sezozo, we've recently had a request by a DO in Chicago to be added to the RBF physician list. Although he's not yet officially on the list as we are waiting for details on the services he supplies, I'd be happy to PM you his details.

To retrieve your PM, just look to the top right of this page where it will say, “You have 1 new message.”

At this point, we can't confirm how AP Literate this doc is or what AP services (minocyline only or combination antibiotics? IVs?) he supplies other than what is on his website, but if you're interested in researching this doc further and giving them a call, then you could see if he'd help. From his website, he offers a ton of things from homeopathy and bio-identical hormone therapy to accupuncture…but I can't find any mention of AP. Nevertheless, he must be aware of Road Back to have asked to be included on the AP doc list.

Maybe a possible alternative, if your current doc won't help? This guy also takes a broad range of insurance types, which is a plus.

Peace, Maz

PS If he is willing to help you with AP but not able to individualise the protocol to your needs, he may also be willing to consult with Dr S in Ida Grove, who is also a DO. 😉 Dr S would also give him details of IV Clindy therapy, if needed.

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