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[lovemydoggy]

Hi all,

I'm a newbie from America. My symptoms seem to fit PR Test negative but was told it doesn't mean I don't have it. It's getting worse. Anxiety and stress cause flares. It did disaspear completely at times. Now there is always so.e pain if I stretch out my hands. Just had my biggest flare yet, but my finger joint was hugely swollen, red, hot, horribly painful. Next day just mild swelling and my thumb joint became swollen and painful. Pain moves within minutes all over different parts of my body. Sometime I feel swollen all over, sometimes not. So much more to post, but does this sound like anyone else's symptoms? Also, should it be treated to prevent worsening? I'm afraid to take meds, but open to it.

[nablur]

Hi. Where are u located? I’m in California.

Do u have fibromyalgia too? I do and ra.

I don’t think I’d manage without meds. Did they offer you any?

[lovemydoggy in reply to nablur]

I'm in Oregon. Lived in California, LA, for 9 years. I don't think I have fibermyalgia, but do have intermittent nerve pain on the ends of my fingers. When I went to the rheumatologist it had just started maybe a month prior. She said I have some type of hyper mobility syndrome, which means my joints are too flexible. I believe that is also an autoimmune thing. She told me that I can get in same day if I have a big flare up, which I did but it was on the weekend. Wouldn't you know it. Haven't been offered meds. It is getting worse. I'm wondering if RA is possible. If that's the case then I guess meds are pretty much required to slow progression and prevent injury.

[nablur in reply to lovemydoggy]

I would insist on a neurological workup.

[SnooW]

Hi, only just seen your post. I'm wondering whether you may have palindromic rheumatism or a migratory type of arthritis? Although it is also possible to have rheumatoid arthritis but be sero-negative rather than sero-positive. I'm no expert at all, hardly understand it myself, but didn't want to leave your post unanswered, so maybe go back to your doctor or rheumatologist if you have been referred already, and ask for further tests. If it does turn out to be RA then you really need to get onto some proper meds as soon as poss. Don't be scared of what you read about them. Taking them is far preferable to allowing RA (if you do have that) to progress and start causing deformities to your joints. You may be lucky that the first one you try works and has no side effects. I really hope that is the case. I'm sure someone else will be along soon with much more advice and info than I can give. I've had RA for 3 years but still learning about the disease and the meds!

[lovemydoggy in reply to SnooW]

Did it take many meds to find the right one? I suppose it's just a crap shoot, and obviously different for everyone. From researching I only just discovered early agressive treatment is recommended. I had a great aunt who had RA. She lived to a ripe old age and stayed active (I'm sure she had a lot of pain), but got horrible deformities. I don't know if she ever took meds, but at the time there weren't the choices we have now.

[SnooW in reply to lovemydoggy]

Hi, I went through three DMARDs before being put onto biologics, so I first was put on Methotrexate, which I managed to stay on for 18 months, with hydroxchloroquine added in the last few of those months. They both gave me nasty side effects and metho made me feel so ill that I eventually refused to take it any more, and was then put onto Leflunomide which also gave nasty side effects so had to stop that as well. I was then put onto my current med which is a biologic called Benepali and this gives no side effects, and is helping somewhat but I don't think it is doing enough. So when I see my rheumy in two weeks time I shall discuss and see whether she thinks I need something added or something different altogether. So it's been a bit trial and error, as I said! Some are lucky and hit on the first drug being the right one for them. (My grandmother had RA, according to my sister (got no parents left who I can ask about her though sadly), and sis doesn't remember a lot, except for her pain, her misshapen, deformed fingers, and that she had Gold injections and survived on Codeine. I remember my Gran always saying, 'ow, ow, ow' if I touched her hands but at my young age I thought she was playing and didn't realise the gravity of it. I now realise how sore her poor hands must have been. ) Anyhow, I wish you luck on your journey and hopefully get a proper diagnosis and onto meds that will work quickly for you. Do keep us posted on here, won't you?

[nablur in reply to SnooW]

Thank you so much!

[stbernhard]

Hello, you are understandably worried and confused. Being confronted with a possibly life changing diagnosis is a lot to cope with. My advice is to try and take one step at the time. Don't use Dr. Google to self diagnose or find out about drugs and their side effects. Rely on sound advice from informed sources; your physician, consultant, specialist charities such as NRAS in the UK etc, once you have a firm diagnosis. All the best and keep in touch.

[lovemydoggy in reply to stbernhard]

Thanks. Especially for the advice about Dr Google. That can really be stress inducing.

[lovemydoggy in reply to stbernhard]

Thanks so much for the info. My great aunt had RA and horrible deformities. As a kid It freaked me out. She must've been in horrible pain. No idea what kind of meds were available then, but she may have just taken pain meds.

[Beviej]

I have both RA and Palindromic .Right now I'm on arava and it has helped son what

[pitfa13]

Hi lovemydoggy! Welcome to the best place for encouragement, advice and just a place to vent etc.. That was good advice from stbernhard, googling side effects re the meds, not really a good thing. All questions you have should be asked of the rheumatologist and the rheumatology nurse, if possible, face to face! When something pops into your mind, write it down and take with you to appt and go over with the dr and nurse. Wish you well on this new journey!!

[lovemydoggy in reply to pitfa13]

Taking notes is a great idea. The symptoms change so quickly it's hard to remember much except pain. Was amazed the doctor told me I could come in same day with a major flare up. I want to make sure she can see something so haven't been back. My right hand looked awful, very painful, red, swollen and hot. Wouldn't you know it, it was a Sunday. Monday it had shifted to my thumb, but not as "visually impressive".

[Gnarli]

Hello and welcome. You've already been given good advice by others so I can't add too much more and I sincerely wish you didn't need to be here. The weird world of inflammatory arthritis is a difficult place to be and it seems that everything can feel overwhelming, painful, frustrating and slow. I decided early on that any meds would be better than the awful symptoms and the risk of damage to my joints but it is very much down to the individual to decide what they do and don't want. I sincerely hope that you get the answers and you get all the help you need. Huge virtual hugs

J

[lovemydoggy in reply to Gnarli]

Thanks. I'm so happy to have found this forum!

[Gnarli in reply to lovemydoggy]

Ps I think your user name is gorgeous and I love my doggy too, even though she snores a lot

[lovemydoggy in reply to Gnarli]

What would we do without out furry companions?