Anyone Undifferentiated Spondyloarthropathy AP Experience!?

[vance]

Hello Dragon,

I’m in Angeles City so we are almost neighbors. Were I not so tired I’d tell you more about myself. You stated in a post you made; “I can send to You my own “AP for AS,” to use as a very general guideline with a good physician to help You decide what is best in Your own case.”
I would love to take a look at it. vanceee@yahoo.com.

Thank you!
Vance

[skitty kitty]

Hi. I read this thread with great interest. My diagnosis is “undifferentiated arthritis”. I got a prescription for Plaquinil on the spot from Rheummy and no discussion … I wasn’t very happy you know?

I am thinking this is a reactive type of disease stemming from Lymes exposure (diagnosed 2 years ago summer) and also from possible mycoplasms from tick bits (had 6 bites in 3 weeks – leading to Lymes diagnosis)

I have Hashimotos – racing/slowing thyroid with antibodies present. My brother has psoriasis (so bad he had to use enembrel) and I am wondering now, if that is what I have – either a reactive arthritis or triggered psoritic arthritis – despite the fact I’ve had no skin leisons that might make you think “psorisis”.

My blood work is very close to normal eg. very very low levels of the “diagnostic” parameters for RA or other arthritis or even Lupus.

From what I’ve read Planquinil and Prenisone are both given to lupies if I’m not wrong on that?

After my diagnosis I made an apt to go back to the Rhummy in 3 months. At that time, she wants blood panels and to see how the Planquinil worked or did not…

Concurrently I have made the very scary decsion to put myself on Doxy MWF and Zithro T&R with a pulse of Flagyl for 3 days (t0 5 days once every 4 weeks). If I can’t hack T&Thur zithro, I’ll do just one day of Zithro on Fridays.

I will do this protocol as long as the zithro holds out (6 wk supply at the rate of once per wk) And at the same time being the hunt for a doctor GP or otherwise who will “consult” and help me manage my treatment either long distance or once every 4-6 months – with tests and prescriptions.

I am fully aware I am gambling with my health here, but I cannot get to see any of th ABX docs listed by the Road Back via my insurance (need primary care referrals and doc won’t give one) plus none near me plus HUGE wait lists. Maybe if I travel I wold have better luck? I have done all the reading and I believe in my heart I probably have a trigger that has caused the joint swelling in my fingers (my primary symptoms) and aching and stiffness I experience to a great or lesser degree (flares up goes away, comes back).

I take a bunch of supplements already -probiotics, Magnesium Malate, fish oil, Wobenzyme, NAC and vit D3 – all of which are useful for chronic diseases – as anti inflamatories and to boost the immune system (eg NAC). I haven’t done the full dietary elimination – I eat healthy as it is and I think that’s enough for now. I exercise regularly with weights and do yoga for flexibility.

Anyway I guess what I’m hoping to hear is that there are others with “undifferentiated” arthritis out there who have managed to reverse or “cure” the joint swellings and stiffness and pain, or at least achieve remissions…I’m only 46 waaay too young for this disease process I’m having.

Thanks for listening and reading and commenting. Advice and pointers are always welcome. And I just got 2 new tips on docs to try so that’s what I’ll be doing *the rest* of this month!

[mirdell]

Hey there,

It has been around 2 years since my diagnosis of “undifferentiated spondyloarthropathy.” Yes I tried antibiotic treatment (if only relatively briefly), read all the books, etc. I got into this theory of infection really based out of fear and desperation for an answer. I wracked up thousands and thousands in medical bills, saw specialists, physical therapy, etc. After all of that, I still have no answers, and no magic bullet. I am 26 years old myself and had to get out of the fire station as jumping out of the engine was too painful for my knees, and standing for longer than 30 mins or so is very challenging. All in all however I am doing pretty well still.

After two years all of my labs are normal and I have not had any evidence of joint damage. This despite almost constant finger pain and achiness in every joint of my body. My good days happen when I havent worked out in a while, and I take 400 mg of ibuprofen. With that I am generally normally functional. So despite your current diagnosis, there is hope!

I quit the Mino because I personally did not see much benefit unfortunately. Also I had to drive 4 hours to see the doctor I used, and to be quite frank I did not have a ton of faith in her helping me. I DO believe that a lot of people can be helped by the Mino, but someone like me with all normal labs, and no clear cut diagnosis I didn’t feel confident in the treatment. She even told me that same thing, that “generally people with RA and abnormal labs DO get benefit, in your case I’m not too sure.”

Skitty Kitty, you sound like you have some clear cut auto-immune hx (thyroid issue, brother with psoriasis) so the Mino may be of more benefit to you.

If you are financially able, I would recommend multiple opinions from different Rheumys. I saw 5 different ones and got 5 different answers to my questions. One put me on Plaquenil, Sulfasalaizine, and Indomethicin; while another told me to stop all of that because it would not help me. Yet another said this should go away in a year or so, when yet another said they have no idea why I have joint paint literally from my toes up to my cervical spine. I at least have a doc that I now trust, get my joints x-rayed annually, and am simply monitored. I have had EVERY test that there is, and there is NO abnormalities noted. Are grinding joints that sound like an un-greased hinge normal in a 26 year old? No, but I have no idea as to why I feel like I do, and apparently neither do a dozen doctors.

I have tried starch free, gluten free, etc diets until I was starved and lost 20 pounds. Granted I could only last 2-3 weeks, but I felt no benefit. People may say that I didn’t give it enough time. I have tried exercise, taking all the drugs mentioned, and even Rakey (sp?), and still no magic bullet.

I wish you SO MUCH luck in finding what works for you. The worst part for me when all this began is how fearful I was. Visions of being a wheelchair bound 34 year old terrified me, when the month before I was working out 5 times a week and working for one of the busiest fire departments in the country, but I am more at peace now and know my body better. I have to admit, the support of this website, and knowing we are not alone is a comfort. Please email me whenever you wish, and I hope you find your answers!!!

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