Doing Research on AP and Have a Question

[Jesse88]

I'm seriously considering AP to treat my undifferentiated connective tissue disease.  I want to get off the Plaquenil and MTX ASAP and am in the process of researching this therapy. 

Can anyone tell me what percentage of people on AP successfully stop their RA drugs and what pecentage are able to cut back on their meds?  Thank you for your help. 

 

 

[Jesse88]

Oh wait a minute.  I just found the Harris poll which gives me much of the information I need. 

[prix560]

Could you post the link to the Harris Poll?

[Maz]

Hi Prix,

The complete Harris Poll results, funded by RBF, has a link on the main website main page. Here it is:

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/416.html

Peace, Maz

[JBJBJB]

Hi,

I have been told that I have UCTD. Here is my information on AP treatment. http://www.rbfbb.org/view_topic.php?id=340&forum_id=1&highlight=dr.+S+in+iowa

Right now I am having some bad pain because I dropped all my 400 mg plaquenil. Before my AP, I dropped prednison, too. I remembered John McDonald mentioned this also happened to him when he was off plaquenil. I have some very good days and some bad days (with 400 mg plaquenil), but over all, I do feel I have more energy. My pain level went down to 2 out of 10 (while I was still on 200 mg plaquenil). I hope this pain 7 without plaquenil will soon get a little reduced. I've been on AP for almost 4 months.

I also have very dark skin and stained teeth after I am on minocycline. I don't mind it at all if AP can control my inflammation.

Hope this helps! Good luck on your research.

JB

 

 

[Jesse88]

JB, your comment about stained teeth alarms me.  I read about the darkening of the skin, but I thoght it was only children whose teeth sometimes become stained from tetracycline.  I assume mino. can do the same since they are related drugs.  Can anyone give me more information on the teeth staining issue?   

[John McDonald]

Everyone so far reports that the stained teeth are superficial and that it comes off at the next hygiene visit. It seems to be a bacterial die-off of some sort in the mouth. Most of us also get much better dental report cards after we start AP so the die-off would make sense.  My teeth and gums are way better than before AP.

[Jesse88]

Whew!  Thank you John.  That really had me spooked.  I appreciate your quick response.  It's nice to know that when/if I'm able to get my RD to go along with AP, I'll have this forum to help me through it.  I'm sure I'll have many questions along the way. 

[Jesse88]

JB, thanks for the link you provided.  I was surprised to see you started this whole process with IVs.  I thought that was reserved for the very serious autoimmune diseases.  My understanding is UCTD is not as serious as full blown RA, lupus, etc. although it is treated with the same RA drugs.  Can anyone tell me what determines whether or not you have to have the IVs first? 

Sorry everyone.  I know I'm already starting in on a lot of questions, but I know I'm going to get some (or maybe total) resistance from my RD and I want to be sure I'm well versed in all of this if I decide to fight for AP. 

 

[JeffN]

Jesse88 – What John said! First few months quite a bit of brown “stuff” mostly on my lower front teeth. Came off fairly hard with one cleaning but it did come off. That was the worst of it next visit the little bit that was there came off quickly. Not a deal breaker by any stretch.

[richie]

Hi
In some instances minocycline can cause hyper-pigmentation –In fact im some RARE instances –organs turn dark in color as well as body fluids –why this occurs is really unknown – I dont buy a die-off –Again in rare instances teeth can darken as well as gums —it reverses in children when the med is stopped –in adults it requires the teeth being bleached –IMO a very small price to pay to successfully treat UCTD —And certainly more effective than plaquenil —
Richie

[lynnie_sydney]

My understanding is UCTD is not as serious as full blown RA, lupus, etc. although it is treated with the same RA drugs

No Jesse this is not correct. JB has had varying diagnoses to date, including scleroderma. She just doesnt have all the symptoms, blood markers etc that are completely typical for any of them, hence the possible UCTD, which is generally why this 'label' is given. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[JBJBJB]

Lynnie was correct. Make a long story short. I was told by three doctors I had Mixed Connect Tissue Disorder, or UCTD, plus I had some symptoms of systemic scleroderma because I have acid reflux. One pulmonary doctor said I had pulmonary fibrosis.

That's why I went to Iowa to seek the treatment. After I came back from Iowa, two months later, I went to see Dr. John Varga of Northwestern University, who is one of the leading scleroderma experts. His initial diagnosis was that he did not believe I had scleroderma. I will need to go back to see him in October again. Please pray for me.

Then I went to see a second opinion for my lung. This doctor in Indiana University believes the scar tissue in the bottom both sides of my lung was not fibrosis. It was the scar tissue due to chronicle bronchitis and perhaps pneumonia. This was consistent with Dr. Varga's diagnosis.

So, it's still a mystery of what I have. I will be able to know everything after Novemeber.

Just a couple weeks ago, my family doctor found I have some thyroid problem, my TSH was 5.08. I am just wondering if this thyroid problem could be the key which caused my MCTD. However, I read up a link, it is said, actually a lot of patients with RA, MCTD, SD, and CFS have low thyroid function. I don't know which came first, the chicken or the egg.

To be honest with you, I love the feeling of having more energy after AP. If I indeed do not have scleroderma, nor pulmonary fibrosis, I will try to do pulsing on MWF after my pain reduces to 2 or 3 (out of 10).  Right now I am taking 200 mg every day. I may switch to Doxy which may not affect my skin and teeth.

I use Advance White toothpaste by Arm & Hammer. It takes a good care of the stains.

JB

 

[richie]

Hi
Quite right Lynnie –UCTD can affect major organs muscles and joints –however not enough definite symptoms have yet appeared to make a definitive diagnosis of a definite disease –In other words its just a label to help the doctor give the illness a name when he or she is unable to make a diagnosis –Personally-to me a dx of UCTD means go to another doctor who is more up on his game
Roichie

[JBJBJB]

[user=16]richie[/user] wrote:

Personally-to me a dx of UCTD means go to another doctor who is more up on his game

Richie,

You are too funny, but it is very true about UCTD label. The doctor first told me I had Lupus, then, Mixed Connective Tissue Disorder, some CREST symptoms, some scleroderma…. and finally after some tests came back negative, and he said I had UCTD.

You hit the nail on the head. :roll-laugh:

JB

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