I started out with Palindromic Arthritis and I know two other people who did too!
One woman, like me, morphed into severe RA, the other, one day the pain just stopped, and she never had another flare.

I do know Palindromic was different in a few ways. The pain of the flares were intense, but they only lasted about 24 hours, then on to another joint. I was not given any medication, because I was told I did not need it, because it does not cause damage to the joints!

Woe! What terrible medicine! I wasn't even offered pain killers! I was teaching at the time, and the joints needed to be bound up, in a tensor bandage, and I could not use the hand, knee or whatever was flared. I can't believe I pushed through that!

I kept working, because I was told it wasn't bad. Now, from the point of damage, no, Palindromic isn't bad. But, like fibromyalgia - the pain is terrible.

I wish I had known that Plaquenil could have been used. By the time I got on Plaquenil, about 4 years later, it was much too mild, and the Palindromic had become RA, with flares settling in for months, and my feet showing signs of damage.

So, my prayer for you is that Palindromic will burn itself out, and you will not have to endure this pain and suffering. Over 50% of people with Palindromic the diseases just stops. But if it does turns into RA we have lots of experience and can share what we have been through.

Good to meet you and welcome to the group!

Thanks for the reply!!

Wow, I cannot believe you were not treated!! My rheumy said the idea is to modify the disease now so it doesn't turn into full RA. She said I do show some signs of RA (mild erosion in a finger joint) so I'll be closely monitored.

I'm grateful for the lack of joint damage, but man the pain and stiffness is debilitating. I can be completely fine one minute, and then an hour or two later be experiencing such an intense flare I lose mobility of the joint. It moves around. One day it'll be the right wrist, the next day it could be the left shoulder. For a long time I just thought I was crazy.

Plaq takes up to 6 months for full effect, I'm 2.5 months in and seem to be experiencing fewer flares. THough before I could easily go a month or two with no pain, then have pain every day for a month. So who knows. It's just a wait and see thing.

I did know I needed to join a group with people who understand. Sometimes I feel all alone and like I need to suffer in silence.

And I hope your RA is managed as well as possible and that you're feeling ok!

I don't know about Palindromic Arthritis treatment......Marlene, don't they believe in aggressive treatment as well?

Hi SassyAndSore
From what I read of palindromic RA, I belive that's how mine started out. Intense, debilitating pain in a wrist or shoulder or ankle for a day or so would disappear, with a few weeks or months between pains. I'd sometimes put it down to some exertion like gardening which hadn't seemed excessive at the time, but I'd tell myself it must've been the cause. Other times there just was no logical cause. Gradually began affecting more joints more frequently or for longer spells.
It wasn't diagnosed as palindromic RA. Rheumatologist could see no erosion in xrays or ultrasounds, and would tell me "you don't have ra yet!“, and he didn't offer treatment.
Fast forward a couple of years, and I do have ra now!

I'm glad you're being treated, and I hope it helps. It is hard to explain that you had to take a day off work because you couldn't walk all of a sudden, especially when you're walking perfectly normally at work next day. I was sure my boss/gp/colleagues thought I was malingering or maybe just a hypochondriac. I tried not to mention it if I could help it. Latterly, when the symptoms got worse and more frequent it was no longer an invisible illness. A blind man on a galloping horse could see that every movement was painful for me by then.
So in some ways the diagnosis of ra gave more validation than the earlier symptoms, but I hope yours doesn't develop further.

Wow, Zee! From what I'm hearing, I'm very lucky to be getting treated now before I get much worse. Getting the diagnoses of PR was so validating for me. It totally sucks that you had to progress to RA to get diagnosed. This makes me more optimistic that treatment now will prevent me from getting RA.
Thanks for your comment!

We're all different. I hope you're one of the lucky ones!

Sassy, back 19 or 20 years ago, they didn't even treat my RA which was serious, let alone Palindromic. And, I never saw a rheumatologist for Palindromic, just an internalist, who was clueless, including when I got RA.

That set me looking for a rheumatologist who had a clue. Sadly, it took 3 more specialists, who all wrote me off because I was sero-negative, before I found a really old guy, who diagnosed me by symptoms, which is how he was trained long, long ago. I guess blood tests were supposed to be a reliable tool, that didn't pan out that way. You know, sero-positive being severe, sero-negative, not being severe. NOT!

Too bad for me I didn't see him 3 years earlier. He was shocked that any rheumatologist could have seen me and not diagnosed me as severe. A friend, who had Psoriatic Arthritis couldn't get a diagnosis, also having gone to 3 specialists, and no one had a clue! She gave me the name, and I got my family doc to recommend me. He had never heard of him, but fortunately, that friend had.

And Sassy, your symptoms sound exactly like mine. If they start to be more flares, especially if they stay longer, that is a danger sign. But if they are less, and Plaquenil is helping already, so good to hear you might have caught it on time.

you sound very similar to me at age 34. I have had various dx plastered on me, but, eh, to me, NOW I KNOW what it is, I understand it and don't care what they call it. *They* call it RA/lupus, but I first had very achy joints ... every single joint in my body except my spine. No one understood it and after a while I had to come to terms with it. *If* they *did* understand that, then, that would be bad b/c that would mean they were very ill. sigh. I worked from home, so that helped quite a lot. What helped me was plaqueinil, 10mg methotrexate a week and tons and tons of lifestyle/diet changes. I also got acupuncture 1/week for 18 months among other things. If you want to talk more about any of that feel free to message me.