New Here – 25 & Just Diagnosed with Psoriatic Arthritis

[Ali]

Hi Todd,

Thanks for your quick reply. You say that you're getting decent results after two months – do you mind me asking, how bad were you to begin with? I can walk but am often housebound as my ankles/knee get too swollen stiff and sore to go shopping etc.  Do people actually go into remission with this stuff as I've never been in remission for many years, but I'll give things a try if there's any chance it'll work. Is there anything that people take whilst on it to compact any side effects?, I know I've read a couple of people mention that they take stuff to put back the good bacteria in the gut. Sorry to ask so many questions!

Ali

 

[Pip]

Hi Ali!

Yes, we're all of us on probiotics.  You can get them at most natural food stores.  Or you can learn to make your own like kefir.  Since we're on antibiotics we're constantly killing off the good gut bacteria with the bad mycvoplasma.  Replaceing the good stuff makes us stronger as up to 75% of our immunity is made in the gut. 

I've heard its harder to get help in the UK with docs doing AP and hope the RB is trying to get a list together.  I do know some of the interesting research is coming out of there so you might try a Google search to see which docs are 'experimenting' with minocycline there.  Or maybe other UKers will jump in and offer some suggestions. 

Even on this end of the pond we have trouble finding docs that will help us.  It took me 10 docs to get monitored and I had to move to get help.  LOL  Glad I did.

I had Palindromic RA for almost 2 years before diagnosis and started AP in 8/06.  So here it is nineteen months later and I'm going strong.

If this makes sense to you – go for it.  It was the ONLY thing that made sense to me.

Pip

[Ali]

Hi Pip,

I thought people were on probiotics…does that mean that in theory people on this protocol are more open to catching infections?

Thanks,

Ali

 

[Todd WI]

Hi Ali,
 
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Most here believe that you need to take a good probiotic, anything beyond that gets fuzzy pretty fast.
 
<<>>
 
My PsA was long standing, but not particularly severe.  When I was first diagnosed ~12 years ago, I started on the stair step of traditional meds.  I quickly went from one swollen finger to many swollen fingers, both thumbs (which were ?cured? after cortisone injections), and several toes.  I fired my doc, got off the meds, fixed my diet and exercised like crazy.  I wouldn?t say that I was ever in remission, but my disease was (almost) under control and I was able to live with it without any major problems for most of the last 12 years. I lived with several swollen toes and fingers, but I had occasional flares where other joints were affected, particularly ankles, Achilles tendons and joints in the feet.  A handful of times the disease knocked me on my butt, but mostly I could live with it.
 
However it slowly progressed on me.  2007 was a bad year, where my ankles and knees became more involved.  I hobbled intermittently through the first part of the year, but was on crutches more often than not in November and December. I was eating Aleve?s like they were candy, and they really weren?t helping much.  I was to the point where I needed to do something.  I started AP in February.  Since starting I?ve had two periods which I like to call ?mini-remissions?.  The first one lasted only 4 days, during which my ankles and knees didn?t bother me at all.  It was the best I?ve felt in over a year.  I?m currently in the second mini-remission, have been for a couple of days.  Again, my ankles and knees are great, not perfect, but still so much better than they had been.  Today I was expecting a phone call and when it finally came, I found myself downstairs when the phone was upstairs.  I had 4 rings before it would roll over to voice mail.  I sprinted up the steps two at a time and caught the call in time.  It?s been a long time since I?ve run up steps. I love mini-remissions, and await a more permanent remission.
 
Things aren?t perfect yet.  My fingers and toes are as they have been most of the last decade.  But for now I?m happy with the improvement in my ankles/knees. I?ve think I?ve had some other improvements, but it?s a bit early to be sure so I?m not ready to talk about them. 
 
Todd

[Ali]

Hi Todd,

I'm so happy for you getting remission like that, even if it's only for a few days!. It must be wonderful to be able to run up the stairs. I used to be very active playing tennis and other sports so I'm not liking sedatory life much these days.. but I still think there is an answer out there for me somewhere and I'll persevere until I find it. Hope your remission lasts and gives you the chance to do lots more of what you want to do.

Ali

 

[Pip]

No, we're less likely to get infections because of the antibiotics.  Seriously, I live with a 7 year old petrie dish and was SICK all the time before AP.  Now, I've gone 2 winters (with the exception of my pneumonia herx at 6 months) without even a cold!  Even my pneumonia herx was NOTHING compared to pre-AP – only one dose of levanox killed it instead of the 3 Zpacks as usual.

The reason we take probiotics is we want AP to work – badly.  If we kill off the good gut flora – AP can (and usually will) fail because our guts is where we convert our food to needed vitamins and minerals.  When I first found the Roadback I was looking for 'patterns' in what worked and what didn't.  I noticed a disturbing pattern of people saying AP was failing around the 18 month mark.  On questioning, most of those people were NOT taking their probiotics or were only taking them sporadically(spelling). 

So, knowing how important these probiotics were to the continued success of AP logically, emotionally it hadn't sunk in.  So, we move across the country and in the confusion etc. I forget my probiotics for 6 weeks.  And felt like AP was failing.  I had pain return to my hands and feet.  And I got scared.  It wasn't until later and after much research that I figured out how close I came to dodging a bullet.  And, if I hadn't been able to come here and ask for advice, I would have easily been talked into more 'traditonal' meds.

So, please, take the antibiotics and the probiotics. 

Hugs,

Pip

[A Friend]

 
Amy, JL, Linda, Ali…did I miss anyone,
 
The following article on psoriasis from ArthritisTrust is very interesting, and the writer said the treatment has not failed to work.  Sounded encouraging and I wanted to share it with you.  Hope it is helpful.  There are two versions of each article… HTML and PDF.  (If the first link does not work, just click on the articles link to find it. 
 
AF
 
 
http://www.arthritistrust.org/Articles/The%20Surprising%20Psoriasis%20Treatment/index.htm
 
For more articles on different problems and diagnoses, go to the Articles list:
http://www.arthritistrust.org/articlescurrent.htm

[Author]

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