New Here – 25 & Just Diagnosed with Psoriatic Arthritis

[Anonymous]

Hello everyone.  Four months ago I was diagnosed with psoriatic arthritis.  The pain started when I was on my honeymoon.  I woke up one morning and the joints in my feet were hurting.  A few weeks went by and I noticed the pain in my fingers.  I knew something was wrong…this wasn't normal.  I went to see a local rheumatologist and he diagnosed me with psoriatic arthritis and prescribed a generic form of plaquenil.  I don't think I've been on it long enough yet to see any improvements.  I'm just trying to educate myself and be proactive.  Everyday it seems to get a little bit worse and I want to do as much as I can early on.  I was wondering if there was anyone who has tried the antibiotic protocol that has psoriatic arthritis?  I can't seem to find much research that says it is beneficial for this type of arthritis.  Any info would be greatly appreciated.  I hope everyone continues on the road to good health and happiness.  God Bless.

Amy

[JL]

Hi there  –

Congrats on finding this so soon!  It took me a while to stumble on to this, man I was discouraged. 

I have Psoriatic Arthritis as well, It is really hard to find info on it.  

I'm on the AP now and it's helping.  I couldn't find anyone who was on it for PA when I first started either, so I hope I can help you out.  

First thing, and this is really important, there is a great chance of you getting better despite what the docs may or may not say.  

Email me if you would like to talk about it.

[Anonymous]

[Todd WI]

Hi Amy,

I've got psoriatic arthritis as well.  I've only been on the antibiotics for a bit more than a month, so it's too early to tell if its working but I'm cautiously optimistic.

There are two testimonials of people with psoriatic arthritis on the testimonials page that you may want to check out:

Quick Response in Psoriatic Arthritis
Psoriatic Arthritis
HW
May 22, 2006

My Story
PA
John Greenly
January 7,2002

Todd

[DragonSlayer]

Hi, Amy:

PsA can sometimes be indirectly caused by celiac disease.  There are several tests for this, but they must be done together to be accurate.

I hope that you find the answers you need,
John

[linda]

You're very fortunate to have found out about AP so early in your diagnosis. You'll do very well on this treatment because of that. Have you read the book by Henry Scammell, “The New Arthritis Breakthrough”?

I was diagnosed with PsA at about your age, but I didn't find out about AP until a few yrs ago. I'm now 45. I can tell you a little bit about how it differs from RA. You won't test positive for a rheumaoid factor. Your toe and finger joints, if affected, will have a sausage shape. The joints affected may not be symmetrical. It is not as damaging to joints as RA, but it can be more painful because the inflammation affects the bone, muscle and tendons surrounding the joint.  The psoriasis of those who develop PsA is often mild, but involves the nails.

It is treated by rheumatologists the same way that they treat RA. The same is true for antibiotic therapy. AP is considered a disease modifying treatment by the American Board of Rheumatology, but is recommended for use pretty much as a last resort. They also state that it works best if used early in the disease process. If that sounds contradictory, it's because it is. If you want to give AP a try, this is the best time to do it. There is a little information you and your doctor will need to know, unless you are lucky enough to live near an AP physician. Let us know what you decide, there are many people here who can help with that.

I hope your doctor explained the side effects of plaquenil to you, especially those involving your eyes. You will need to be on some kind of anti-inflammatory when you begin AP, so don't stop taking it; just keep a eye on your eyes! Good luck,

linda

[Lynne G.SD]

Hi Amy,welcome to the group.If my memory serves me correctly there is someone that posts on the  http://www.rheumatic.org  site that is in remission.I don't know the story so maybe you could do a posting there and see what pops up.  Lynne G./SD

[linda]

Hi, me again,

I forgot to tell you that the pattern of my flares initially was that the arthritis would go into remission when I was pregnant, but about 6 wks after delivery, the inflammation would return, and it worsened with each child. With my first son, I only had one finger joint involved. My second child, I had several more joints involved, but the pain was mild and I could manage it with motrin. I expected it by the time my third and last child was born, but when it returned it came back with a vengeance, almost disabling me. At that time I was given gold, indocin and prednisone, the gold was replaced by plaquenil because of severe hives. The plaquenil didn't last long either as I got the ocular side effects. That flare lasted 1.5 yrs, then went away as quickly as it had begun. I stayed in remission for a lttle over 5 yrs, then the PsA slowly returned and has not been in remission since. I'm currently trying to find a doctor who does the AP with IVs because I can't tolerate the pills; my stomach has been damaged from long term use of NSAIDS and prednisone.

I wanted to tell you this because you are young and just married; if you decide on AP and get better, you may get a flare if you decide to have children. Don't let it discourage you, an adjustment in the antibiotics would take care of it. The problems with intestinal damage are inevitable in long term use of steroids and NSAIDS. I wish I had known about AP when I was your age!

linda

[JL]

Good post.  I agree that the PsA is usually mild (it is in my case) but I've read of others having severe Ps with PsA.   Also, and I may be really odd here, but I've never had any of the nail issues associated with PsA, so I guess that isn't always the case.

[linda]

Yes, PsA can be very severe, but it's rare, thank goodness. There are 4 or 5 different sub categories of diagnosis, depending on symptoms and location of joints invloved. Some involve the spine, others fingers and toes mostly, etc; and they can also overlap each other. Arthritis mutilans is the one that causes rapid, severe joint damage. Just like with other AI dxs, the symptoms vary, I have spine involvement and rheumatoid -like (symmetrical), w/ nail pitting. The nail involvement can be in the form of pitting, or actual psoriasis under the nail that causes the nail to separate from the bed. Some people never have psoriasis with it. It's a difficult disease to diagnose because there is no definitive blood test and the symptoms are so various. Sometimes the only symptom that can be used to diagnose it is the classic sausage shaped fingers or toes. And we still don't know why some people w/psoriasis develop arthritis and others don't. Sometimes the complexity of these diseases is overwhelming to me.

[Cheryl F]

Amy,

Welcome!  While there are not too many PsA patients as it is much less common than RA, this treatment can be effective for your illness.  And, I believe that most will agree, the sooner you start the better!

If you decide that you want to pursue this treatment and your current Rheumatologist will not work with you to use this protocol, the Road Back Foundation can supply you with a listing of doctors who use this therapy.  You can request the listing by emailing your request, including your state to apdoctors@roadback.org

Cheryl Ferguson

[Anonymous]

I actually developed the psoriasis first.  I was 21 and it appeared on my scalp.  Although it has been difficult to treat over the past four years, I am thankful that it is just on my scalp.  Recently it has went into remission.  I have had a clear scalp for about 2 months now! 

Also, just wanted to comment that I have not had any nail pitting or spine involvemnet…at least not yet.  You're right, the complexity of this diseases can be overwhelming.

Thank you so much for sharing your stories and helpful information.  I will keep you posted.

[Pip]

Hi Amy!

I don't have PsA – I'm Palindromic (maybe or not a subset of AP depending on who you ask)  When I found the RB, there were no PRA posts or posters and I felt like I was jumping off a cliff about starting this.  Not only that, I saw 10 docs and every one told me it wouldn't work.  After creepy-breast-exam-doc-number 5, hubby and I gave up and flew out of state – just praying these guys weren't crazy cult members. 

I started AP on 8/25/06 so I'm at almost 17 months if I'm doing math OK this late at night. 🙂  I went from being on a walker 4 months after diagnosis and needing a wheelchair in the fifth to being able to boogie board last summer.  It wasn't pretty, pudgy middle aged woman in a bathing suit – but I DID it!

This works.  Learn all you can about it.  How to heal the gut, how to keep this working for you!  You've got something like 55 years to go with this disease.  Let's make them fun ones!

Pip

[Ali]

Hi all! I've just discovered this site and am very interested in the idea of antibiotics for PSA. I've had the illness now for17 years, ever since I was 18 and had my hair permed and took badly to the chemicals and ended up with severe scalp psoriasis, and then joints followed. If AP works get in quick, I only wish I'd found it earlier as an option. I was on sulphasalazine for only about a year and a half, worked well, until had to stop as liver function affected, then methotrexate for 10 months which didn't work but just made my hair fall out, been on Lodine for a number of years, had knee arthroscopy, many knee drainings, total knee replacement, and even Humira for several months and even that stopped working! Does the antibiotic stuff work for those that have had long standing illness? Do you have to take it forever and what are the side effects from long term use – does anyone know? Also, I live in the UK and would very much like to hear from anyone who's having treatment over there, as most of you seem to be from the states – not sure if treatment is as recognised where I come from.

Thanks!

Ali

 

[Todd WI]

Hi Ali,
 
You ask some good questions.  Here?s a first cut at some answers:
 
<<>>
Yes, but the progress on AP is felt to slower the more long standing the disease  However, everyone is different.  I?ve had PsA for ~12 years and have seen decent results in my first 2 months of AP (note that I?m still in the ?hoping the results stick around? phase).
 
<<>>
??In patients with long-standing and/or severe disease, antibiotic therapy should be looked upon as a therapy for the patient's lifetime, but kept to a maintenance level (3 days a week) once re mission is achieved and to prevent a return of symptoms. If the disease is caught early, medication can sometimes be discontinued.? (source:
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/118.html)
 
<<>>
An excerpt from Henry Scammell?s book ?The New Arthritis Breakthrough?:
??Dr Thomas McPherson Brown was an exception. Over the course of his long career he prescribed the off label use of antibiotics to some 10,000 patients with connective tissue disease. He knew as well as everyone else in medicine that tetracyclines are famous for their benign profile, and he had ?not seen any toxic effects in forty years in anybody?. Nor did one of those many patients ever complain of a single instance of malpractice or misfeasance.  Indeed, dermatologist Alan R. Cantwell, Jr., describes antibiotic therapy as ?far safer than steroids, aspirin, non-steroidal anti-inflammatory agents, gold and methotrexate.?
 
Tetracyclines, in common with any other medicine can sometimes have side effects, but beyond sun sensitivity during the course of therapy and occasional vaginal yeast infections in women (easily corrected  with nothing more drastic than a small helping of yogurt), adverse responses are rare and few.  The antibiotic can cause transient dizziness and stomach queasiness, and occasional discoloration of skin and, in young children, of the teeth.  More serious reactions, such as hypersensitivity syndrome reaction, serum sickness, and what has been described as a drug-induced form of lupus, occur with such infrequency that they collectively amount to a tiny fraction of one percent of the far more deadly complaints associated with non-steroidal anti-inflammatories (NSAIDs) alone.  There are contraindications for the use of any medicine, but most practitioners, like Cantwell, ?have never heard of anyone becoming seriously ill with tetracycline, or even minoccyline???
 
<<>>
 
I don?t know that I?d characterize it as ?recognized? here.
 
Todd

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