Introduction

Introduction

Hi all - I just realized this morning that I have never introduced myself and just sort of jumped in here. Thanks for having me!

A little background: I was in the revenue / management side of healthcare for my entire career, running registration / charge control / insurance management / registration / billing / charity and bad debt for everything from small hospitals in the US to major four-campus medical centers. I was really good at what I did and loved it, but six years ago, I got laid off (not my fault - our President signed the business I was responsible for out of business), and at the same time my mother in law fell. I had to take everything out of her house, renovate it, and help sell it. I started a business (making candles, soaps and health / beauty items), started working on my Masters in Herbology (got to certified Herbalist), and started renovating OUR house.

Bottom line, my RA kicked off big time and I had to stop pretty much everything I was still working on in 2014 when I started the MTX.

I have RA, Hypothyroidism, Allergies, Asthma, Sjogren's syndrome and some smaller things.

My current therapy is 200 mgs of Minocyline with Folate and Pilocarpine, as well as some others not related to the RA.

Hope you are all having a wonderful day, Caeryl in the US

29 Replies

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  • You too were all a friendly bunch here xxx

  • Thanks for that - I have been a member of other boards and ended up after one or two posts just fading away. It doesn't take much to make someone feel disenfranchised :-)

  • Hi , I was in nursing management whey RA hit but I can honestly say my life changed bit on a lot of ways for the better.

  • I'm in nursing too

    Cut down my hours as full time became too much.

  • My RA was diagnosed earlier this year

  • I'm getting closer to retirement. I'm getting very tired especially after the second day look forward to my days off. But may have go sick to get retired on medical grounds

  • Hi Matilda - I cannot actually imagine trying to work going through what I was the first year or so.. Exhaustion is almost - well, not quite, but almost as bad as the pain. And then, when you get better, the exhaustion becomes the worst enemy.. Sheesh... It makes sense to look at a medical retirement..

  • Hi CaerylUSA.....I so agree with you...I was diagnosed just after I retired & as I jumped from one med to another & spent days in my PJ's as I couldn't move enough to get dressed, I was SO grateful this horrid disease waited until I didn't work to descend on me.

    No more Jimmy Choos was a bit of a blow.....but I'm used to ritzy trainers now!

    Welcome to this site ....I'm sure you will see how our medical services differ from the States......some better some worse!

    AC

  • Hi AC - I laughed at the "no more Jimmy Choos" - ha ha. Actually I gave the heels up years ago due to my work schedule. I lived in Virginia and worked in San Francisco for almost 8 years, so all that airport hiking took away anything not functional first... Thanks for the welcome. I'm enjoying the folks here. They seem nicer than most other boards..

  • I was long haul cabin crew so I certainly wouldn't have been able to totter through airports on my stilettos if this wretched disease had arrived earlier.

    Did you live anywhere near Roanoke..I spent many a happy time there when I lived in NY!

    AC

  • Actually I live in Virginia, but further east - VA Beach area. Roanoke is gorgeous...

    Yeah - Stilettos in the airport - ha ha ...

  • Ye I was lucky they told me I wasn't fit for work ! Ok money is less but I got my pension early and don't have to go out in pain which is a godsend .

    Just been to Turkey from r a week which was great on the joints and marvellous having someone doing all the cooking h and cleaning!

  • Hmm - better... Mine too in some ways - I have to admit that I am much more laid back than I used to be - type A for sure. Now more of a type A with a type C limitation - ha ha ha

  • Welcome. You got an Inflammatory Arthritis? You're going to be at home here.

  • Hi Mickeyjoints - no, just plain old RA with about a half dozen other things too - ha ha. And actually you all have done a great job of making me feel welcome. Thanks so much for that!

  • In the UK when you haven't got RA factor in your blood work - i.e., they don't know what's causing your arthritis - they call it Inflammatory Arthritis.

  • Ahhh - That makes sense.. yes - Inflammatory - Thanks for the explanation!

  • My Rhuematoid factor was normal but the anti CCP was high and I believe this is more specific to RA.

  • It's funny - There is a test out there called the Vectra DA. It is a $1200.00 test that our insurance, at least, considers experimental. It measures 12 different biomarkers with the idea of giving a better idea of how much RA the person has. The rheumy I was going to kept looking at my usual test results, then my body and trying to reconcile the two. She had the test done, and it surprised both of us that I came back as "severe and aggressive" - in the highest category. It just seems to me that a lot of the diagnosis is guessing while using medieval tools. I feel sorry for the docs trying to guess, and for the patients they guess wrong on...

  • Hi CaerylUSA and welcome to the site. This is a very caring and supportive site. We are based in the UK but welcome everyone from around the world so if something sounds odd it is generally because we are talking about the UK!

    Beverley (NRAS Helpline)

  • Funny girl. I think everything can be odd if you are not familiar with it, right?

  • :-)

  • I'm new too on here and I didn't introduce myself either!! I'm Ally from South Wales, UK. Was diagnosed RA five years ago but only recently had to start MTX after repeated flares. Everyone on here is so friendly and supportive. I love it 😊.

  • Welcome Ally Welsh Dragon! Yes, it is a wonderful board..

  • Welcome 🤗🤗 this is the place to get information, support, rant and have a good laugh! XX

  • Welcome Caeryl i was a 3rd level lecturer devtl psychology / child care, retired on other health grounds'98 now resolved but then diagnosed c2000 with pmr and 2015 with RA but suspect it was in me much earlier and that many 'pmr' cases are early RA?? off mtx 6 weeks and in total flare - mtx w/drawn til lung scan done [nxt sunday so cross fingrs if u can lol]. hope to be back on mtx soon.

    BUT big question - how is the minocin working 4u - have tried reading up on it but don't think it's offered in uk instead of more toxic mtx etc. anybody else know more? sorry 1 fingr typin at the mo

    WLCOME XX

  • Hi GranAmie - You know, I suspect you are right, that the RA may actually have been there earlier. I was extremely lucky with my GP. I knew something was wrong but didn't think to complain or ask about it. Every other time I brought something up, I was told it was due to aging :-( So, I quit asking. She actually did several of the tests without me knowing and then gave me the news...

    The Minocycline works wonderfully well, at least for me. The hardest part for me were the first two months. People go through varying degrees of "Herxheimer" (called Herx) reaction. (http://biovedawellness.com/2010/02/the-herxheimer-reaction-feeling-worse-before-feeling-better/) I caught the flu about the same time so the first two months I was really sick, and I had to work up to the full done of the Minocycline to, but I read on the website that was normal, so I just kept pushing through. Then the third month, I noticed that my hands didn't hurt as much. As time went on, they got less red, less swollen and my toe stopped turning in toward the others. I started sleeping better at night and one day I was able to walk in "real" shoes (you know, not Crocs - ha ha), and I snapped my fingers without screaming, and was able to hear the snap. I went around the house snapping until my hands did hurt just because I could :-). The best information is on the Road Back Foundation - Rheumatic Disease Treatments website. There is an FAQ section that you can print to discuss with your doc, which is what I did. BTW - Minocycline is approved by the RA Foundation as a valid (one off) use for RA.

    When my doc wasn't sure, I gave her several pages I had printed out from the two sites, and reminded her that every teenager in the country got the same thing just for zits if they needed it. (That was probably not fair, but she did think about it in a different way ;-)..)

    I have only been on it for about 10 months, but I am doing so much better. I am not close to remission yet, but I can get up, shower, get dressed, make a meal, take care of the cat, clean house now and then, do laundry a couple of times a week, etc. etc. It's wonderful. It is my understanding that it will take 3 - 5 years to get to full remission, and in the meantime there will still be flares (I've had one since I started the Mino), but overall I am really thrilled with the results to date.

    PMR sounds incredibly painful. I wish you the best of luck with your next appointment... Let us know what they say

  • thanks so much 4 speedy n informative reply. i look foward to wearing my rings again and more than just crocs / ankle boots w/velcro. lol. am also looking at the diet - no dairy/gluten / nightshade veg / meat etc. but luv peperonata / ratatouille etc so may be diff 4 me. but not imposs if convinced. take care of yrself too xx

    pmr was bad but ra flare was worse xx

  • Yeah - I love pepperoni too, but like you no gluten. I do eat dairy though.. And it is nice to wear sneakers, and flats and my nice expensive sandals... Have a wonderful day!