Considering AP

[reddyp]

Hello All,
I am a 34 yr old male diagnosed with Palindromic RA about an year ago. My symptoms started about 5 yrs ago with occasional swelling and redness in toes/heel and sometimes fingers. From the past 2 years, the attacks became (comparatively) more frequent with a 6 month on and 6 month off cycle. The flares migrate for eg. starting in the left knee, then to the right knee, various points in the hand joints/some times tendons etc. My tests done in 2010 came back all negative. My rheumatologist suggested using an anti inflammatory every day .. that’s about it. I have been only taking ibuprofen whenever there is a flare. It helps a lot ,but the pain doesn’t completely go away for a few days. Recently i noticed it lingers for about 7-10 days. I do not have any other symptoms – fatigue/fevers etc. I went through the forums looking for people with mild-moderate palindromic RA symptoms and how they went about with their treatment (AP or others), but couldn’t find any. Specifically, i would like to know if a more aggressive approach is recommended at this stage.

Thanks for all your help!
Reddy

[Pip]

Hey, Reddy –

I think the RB has quite a few PRAers and I’m sure they’ll chime in soon.

I was diagnosed early onset severe PRA in March, 2006. By June, I had to stop working. By July I was on a walker at night. By August I flew to LA to see an AP doc and needed a wheelchair to navigate airports. I started AP on 8/25. By Halloween, I could dance with my daughter. By Thanksgiving I could cook for 16 with only one hand flare (looked like Felix the Cat’s glove). By Xmas, I could do just about everything I did before, and by January, was able to get on the roof and deal with Xmas lights.

Should you do something now – heck yes! Palindromics have something in our bodies trying like heck to beat this off (so says my AP rheumy). My PRA was like yours, every 6 months etc before I went to ‘every day’. I wish I knew more about AP then because it was over 2 years before I started AP and by then had a lot to reverse.

Should you do traditionals? I wouldn’t. Check out http://www.palindromicrheumatism.org for yourself. Lots of traditional meds; no relief. My board certified rheumatologist at a Great U told me himself…’most of my meds won’t work for you’ (Palindromic).

If you need more info and want to, just send me a PM.

Thanks,

Pip

[reddyp]

Hi Pip,

Sounds like you made some rapid progress on AP ..Good for you!

On one hand i’m hoping my PR will slowly go into remission without any meds ..but i realize that is asking too much. It makes more sense to do something about it now. If i may ask, how long did it take for your PRA to progress from 6 month cycle to everyday. I’m against using the traditional meds and i am slowly making up my mind to do AP. I’m not sure if my rheumy would be open to do AP, my other option is to drive 200 miles for this other doc. Once i’m ready, will hit you up on your PM. Thanks for your help!

Reddy

[Pip]

Hi back, Reddy –

My PRA started with dental work. They pulled an abscessed tooth and I got all this really weird metallic taste in my mouth. And really bad pain in my jaw. 3 weeks later the DDS sent me for a cat scan and the cat scan doc said ‘let me know if you have any other autoimmune reactions’. WTH? 6 months later the right shoulder went off. 6 months later it was the left knee. Then another 6 months and the big toe went off and they were checking for gout. A few months later it was the other shoulder. Finally, a few months after that, it started to change to monthly and definitely related to my cycle (you don’t have to worry about that – LOL). After about 4 – 5 months of that, it went to all the time ‘kill me now’ pain. I wish I could be more precise but the time leading up to the actual diagnosis was a blur of pain. And I’ve been on AP 5 1/2 years now…so that’s a long time. LOL

I still spend most of my time researching because, who knew, I actually like reading this stuff. I do think there’s a way to get a permanent med-free remission, but most of us are unwilling to do what needs to be done. I know I wasn’t willing to give up my morning bagel.

http://tedxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Min;search:tag:%22tedxiowacity%22

While this seems to be ‘only for MS’ that is not entirely true. While this diet is more for neurodegeneration, who’s to say slanting the same idea towards collegen replacement wouldn’t work? And either way, there is no disputing that the modern diet is full of processed foods, additives, carcinogens etc. This sure as heck couldn’t hurt and it might be replacing enough ‘vitamin stores’ to get your body back on track.

After all, you’re Palindromic and your body is geered to fighting this off.

Pip

[vera]

Hi Pip,

You are making the light bulb go on for me! I just had my last dental amalgam removed, two teeth prepared (ground down), and a bridge put in my mouth. Since then, my feet, especially my left foot, have been giving me enormous grief and pain. Could it be related to the dental work? I’ve had plantar faciitis (sp?) in my feet before, and it has kicked up into high gear since this procedure. Any thoughts?

Lori

[Pip]

Arrgh – I just lost my long post.

I’ll go more in depth tomorrow – the upshot is yes, it could be dental in nature.

Check this out –

http://www.rheumatology.org/education/annual/FinalAbstract2010.pdf

This is short and sweet –

http://tristarpub.com/acr2010/?p=34

This is what is going on with me –

http://y2khealthanddetox.com/cavitations.htm

More tomorrow when I recover from losing my entire post!

[lynnie_sydney]

reddy – welcome to the Road Back Discussion Forum!
I was dx’d with PRA back in the early 90’s (unexplained symptoms from 1987). So, I’ve been managing this for a good while, as you can see (and pretty well, with no big hitting meds, except a short stint on sulphasalazine).

You might want to get tested for Lyme Disease (Igenex is the recommended lab) as it is notorious as beginning as the palindromic variety of rheumatoid. Also lots of interesting info on the http://www.cpnhelp.org site – including combined antibiotic protocols. I believe CPn is one of my chronic pathogens – lots of things can be triggers. My original testimonial is on the main site which you may find interesting as a comparison. I provide the link below. These days I am on a combined antibiotic protocol – had great success with mino alone for 4 years but, ultimately, there was more to deal with (some of which, including neck issues, I had never connected with my condition. I know better now!)

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html

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)

[reddyp]

Thanks Lynn!
Wow! You seem to have managed it pretty well for 20 yrs.

I had the Western Blot Serum and Western Blot Serum lyme tests and the only thing present was igM P41 Ab. My rheumy said that it all looked clean. Now, i realize this test is not very reliable compared to the one from igenex. Do you still recommend this test without having any symptoms, rash or memory of a tick bite?

Thanks!
Reddy

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