Another Newb Says Hi!

Stu69

Hi all,

Just registered and thought I'd drop by to say hello!

I shall take some time to get up to speed and read a lot of postings and advice. I can lend sympathetic ears too and am happy to exchange stories, ideas and experiences; it's not a one-way street after all!

Briefly, I am diagnosed RA although original diagnosis some 6 years ago was PR (Palindromic Rheumatism). The last 3 and a half years have been spent as an RA sufferer. I've been through most meds now apart from biologics. Diagnosis took about 5 years (seriously!) and I spent way too much time on ibuprofen and repeat trips to a GP who was at best, uneducated with respect to RA.

Currently I am almost flare-free, with just an occasional mini flare which as we all can appreciate, is easily tolerated compared to the awful and relentless excruciating pain of multiple joint flares. Typically, I used to flare in up to 5 joints simultaneously, the only one not hurting sometimes was my hip, as everything else seemed fair game to my immune system.

For meds I am on a low dose MTX injection which is just brilliant. I've been on that since February this year after 18 months of the pills and prior to that, 3 years of SFZ which simply stopped having any effect on my RA. I much prefer injecting to the dreaded yellow pills and it seems more tolerable and more effective too. Folic is at 4x5mg weekly.

Against the RA I have myriad other AI niggles and a particularly lovely herniated disc that is leeching chemicals causing some pretty spectacular and horrendously painful nerve involvement, however that is something that I'm waiting for treatment for; spinal manipulation under general anaesthesia, anyone? :shock: In the meantime the only thing I can take is painkillers however like most folks I find there is little to combat nerve pain, or RA flare pain for that matter!

So, that's about it in a nutshell... a bit of a big nutshell I'll admit, however I was trying to be succinct, honest!

stickywicket

I'm pretty rubbish at succinct too, Stu69. Mind you, you have plenty to be unsuccinct about.

Welcome to the forum. Mine's RA too - well, Still's Disease if we're going to be exact. That sounded OK when I was 15 but at 65 it seems a bit odd to say you have a children's form of RA so I tend to keep it simple.

Good that you're currently doing well on the meds. Me too. I'm on MTX & Hydroxychloroquine with the inevitable folic acid tossed in.

Herniated disc, leeching chemicals, spinal manipulation? Gee, lovely! Glad I've no experience of that.

Just wander about and join in anywhere. We're a friendly bunch with no scarey initiation ceremonies for newbies. LWA & Chit Chat are where most people hang out. Look forward to seeing you around.

Stu69

Why say one word when a thousand will do, that's how I seem to work!

Thank you for the warm and friendly welcome, and yes, I'll surely pay a visit to the LWA and Chit Chat too. I do hope there is a section for warped humoured folks? 8)

I had to look up Still's disease. I see there is an adult form anyhow so I guess whatever way you paint it, it's all blooming most unwelcome! I'm hoping your meds are helpful? I'm 42 now so hopefully my MTX injections will keep the pesky thing at bay for longer than the Sulfa did.

Hehehehehe... back, or spinal woes, are just what you need when you have RA. My only fortune is that as my RA started becoming less painful, the cervical spine issue became horrible, helped by falling off of my roof too, no doubt (a long story). Anyhooo, the manipulation is to try to get the disc back in place. Fingers x'd as the pain from this disc is a bit... hurty... to say the least. It's not good for social occasions either as unwanted nerve spasms can do odd things to ones limbs. I get some odd looks sometimes - that's all I'm saying!

See you around, no doubt, and thanks again!

stickywicket

Stu69 wrote:

I do hope there is a section for warped humoured folks?

Oh yes! Quite a big section. Some of us could do with being sectioned anyway.

No need to explain about falling off a roof. You're a bloke. 'Nuff said. My own dear spouse specialises in getting apples off our tree by wanging a big claw hammer attached to a length of twine at them. One day it'll come down on his head and may well knock a bit of sense into him.

I promise to keep well away from you at social functions when you have a drink in your hand - especially if I also have one in mine.

Take care.

soraya

Hi Stu69 im new to this aswell and am 43 and trying to get diagnosed, welcome to this forum they are a great bunch, and really friendly and helpful, enjoy not being on your own in this experience because i dont think they allow it, they are fantastic support and its always hard when you are going through something like this, i to endure a back problem that started as sciatica and has now merged with my flare ups, so can just appreciate what you might be feeling like, although certainly not to your degree thank goodness in the nicest possible way, anyway enjoy letting of all the steam you want on this site, again they are brillaint

frogmorton

Hi Stu

Good to meet you!!

I have inflammatory arthritis too sometimes called Ra or pallindromic by my rheumatologist too....he has no idea due to negative bloods. :roll: l can see you understand this too!

I am taking hydroxy and colchicine as well as arcoxia and butrans patches and co-cos as an when.

I have had back surgery about 8 years ago so am very interested to hear your 'manipulation' due to happen soon??? :shock: :shock:

Please do get posting l am sure you have lots of info to give and we will give you some back too

Love

toni xx

Ankyspond

Hello there,

Nice to meet you, I am 43 with AS and same awful frustrating problems as everyone else!

Stay with us there is always somebody posting something useful, funny or just downright silly. Xx

Stu69

stickywicket wrote:

My own dear spouse specialises in getting apples off our tree by wanging a big claw hammer attached to a length of twine at them.

I've read that 5 times now - it just gets funnier every time! :oops:

Seriously, thanks again, and will catch up soon no doubt!

Stu.

Stu69

soraya wrote:

Hi Stu69 im new to this aswell and am 43 and trying to get diagnosed, welcome to this forum they are a great bunch, and really friendly and helpful, enjoy not being on your own in this experience because i dont think they allow it, they are fantastic support and its always hard when you are going through something like this, i to endure a back problem that started as sciatica and has now merged with my flare ups, so can just appreciate what you might be feeling like, although certainly not to your degree thank goodness in the nicest possible way, anyway enjoy letting of all the steam you want on this site, again they are brillaint

Hey... thanks for the welcome! I've read a fair amount here now, the posting will ensue imminently! Anyhow, I hope I can give back as much, too, you know?

I do feel (sorta) like an old hand at this RA stuff, so although almost flare free at the mo, am never in any doubt how debilitating, how painful - disgustingly and nauseatingly so too - a bad flare is... so I really hope you get your dx soon and if I can help in any way, just feel free to ask, you know!

Cheers!

Stu.

Stu69

frogmorton wrote:

Hi Stu

Good to meet you!!

I have inflammatory arthritis too sometimes called Ra or pallindromic by my rheumatologist too....he has no idea due to negative bloods. :roll: l can see you understand this too!

I am taking hydroxy and colchicine as well as arcoxia and butrans patches and co-cos as an when.

I have had back surgery about 8 years ago so am very interested to hear your 'manipulation' due to happen soon??? :shock: :shock:

Please do get posting l am sure you have lots of info to give and we will give you some back too

Love

toni xx

Hi Toni, and thanks... good to meet you to! Thank you for the welcome!

Yup, went around the house for the dx - a long story - many have trod the path!

Ooooh - you're also PR x RA... Yay (in a good way). Isn't it a confusing mire? I only went to a RA dx after neg bloods with PR until a blood test 3 years later came back with a RF of 67 and antiCCP of 322, ergo the RA dx. I still think it's palindromic - it will hit anywhere apart from my hips.

I take Arcoxia too when req'd - took a year to get them prescribed! They're good, although they change my taste perception something terrible. Beer tastes disgusting now.

Butrans - have them too! I have used them quite a bit in the past. Crikey, very similar, oh and coco's are my fav friend in a flare!

That I guess is why I went MTX injections, after weighing up the amount of stuff I was taking, I needed to gamble on this and just folic, and it worked... so far, but there are plenty of other ai hiccups to keep me amused while the flares are in remission.

Oh, the manipulation? Traction, or manipulation under anaesthesia I believe. They have marked the procedure form with "rheumatoid" in BIG letters

There is an interesting Youtube vid about traction under anaesthesia, here (1:20 on just looks lovely... ish!): http://www.youtube.com/watch?v=GMiv7prKD7E

Hopefully something like that - I'm a chiro fan at heart!

Thanks again,

Stu x.

Stu69

Ankyspond wrote:

Hello there,

Nice to meet you, I am 43 with AS and same awful frustrating problems as everyone else!

Stay with us there is always somebody posting something useful, funny or just downright silly. Xx

Hey, thank you soooooooo much for the fabby welcome!

I'm just humbled by the number of folks on here whom, like you, stare in the face of awful AI issues, of which there are many but with a common denominator of pain; I would not wish any of this on an enemy at all.

I hope you are getting good help and treatment?

I intend to stay, thanks... oh, and useful is good, funny is lifting and silly is the best medicine! Count me in!!!!

Stu

dreamdaisy

Hi Stu, it's nice to meet you. I have PA and OA (the latter caused by the PA damage I reckon) and am in my fifiteenth year of this new (and not very entertaining) life which apparently is mine. I took a while to be diagnosed too, initially it was PVNS (pigmented villonodular synovitis, 2002 after 5 years of swelling in one knee) then that was altered to an inflammatory arthritis (2003 when the other knee joined in) but then, after a bout of psoriasis and more affected joints, that was altered again to PA. It makes no odds tho, the meds remained the same.

There are some grand folk on here and it is a good place to be. I hope you are as OK as you can be today and I wish you well. DD

Stu69

Hi DD,

And thank you also for the lovely welcome!

You are so right - it's not at all entertaining is it, and I'm so sorry that you have such a right ol' mixture of it either.... crikey, that's some change of DX over the years isn't it!

It seems very lovely here - I've read loads but not posted quite so much yet but that will change, I'm just getting my feet under the table at the mo, but envisage I'll spend a fair while posting, and hopefully, maybe in some small way I can give something useful back in time!

I guess I know I've had this pesky thing for some time - I read up on it before my DX 6 years ago, so wasn't surprised when I finally saw a Rheumy. Usual story really by the sounds of it. Anyhow, my MTX jabs seem to help 85% of it which makes the 15% (mostly) tolerable!

Hoping you're having a great and pain free day, and thank again for the warm welcome!!

Stu

frogmorton

Hi Stu

looking forward to seeing you around and about now you have met a few of us and hopefully you have seeen we are pretty harmless bunch.

How like me you are l agree.

sticky is funny isn't she? go and have a look at some of the stuff on chit chat....there is usually something going on for everyone....you choose whatever to join in - l know you will be very welcome.

Love

Toni xx

Stu69

frogmorton wrote:

Hi Stu

looking forward to seeing you around and about now you have met a few of us and hopefully you have seeen we are pretty harmless bunch.

How like me you are l agree.

sticky is funny isn't she? go and have a look at some of the stuff on chit chat....there is usually something going on for everyone....you choose whatever to join in - l know you will be very welcome.

Love

Toni xx

Hi Toni,

Yep - it's really cool here. Love the humour. I'm finding my feet with the board and I'm sure my post count will ramp up exponentially soon.

I've been on a good few boards over the last 15 years - mostly car forums (bore alert!) and have posted upwards of 30,000 posts on one board alone, however it died, and you know, I never thought of joining a board with respect to our conditions, so it's great to have a cool outlet that is also a wealth of info from people who know what this funny old RA thing (and the rest!) is like. Brilliant forum, this! The people make it so, of course!!

I've pottered onto chit chat here and there and replied to the odd post. I'll create some posts too once I know where the boundaries are with respect to humour... netiquette and all that at the mo, being an old stager of the 'net, so, gently gently for now until I get the gist of things.

I hope you are well and fabby, or as much as can be, Toni.

Take care,

Stu x

tillytop

Hello Stu

And a belated "welcome" to the forum (late for everything me :roll:).

Glad you have found us and look forward to seeing you posting around the forum in due course.

Tilly xxx

Stu69

tillytop wrote:

Hello Stu

And a belated "welcome" to the forum (late for everything me :roll:).

Glad you have found us and look forward to seeing you posting around the forum in due course.

Tilly xxx

Hiya Tilly!

And a belated thank you! :oops: I hadn't seen your post, I'm so sorry!!

Yup - having posted a bit now I think I'm getting comfy, although I'm not sure any post I've made has had any use so far!

Stu x

angie1973

Belated welcome from me too since I've not been on here to do any welcoming (shame on me!).

30,000 posts on a car forum eh? That's impressive typing mate, you must have rocket fingers! I have only managed 9,000 on my other forum unrelated to arthur, and I thought I was doing well!

Nice to have you board although in reality, it would be nice if none of us had to be here at all, and we were all Greek athlete's, fit, toned, slightly tanned would be an advantage (talking from an English Rose perspective). But life doesn't seem to want that for us lot. Still, it did at least provide us with the means to come together and have a good laugh, moan, shout, cry and share some good stuff.

So welcome from me too. Roof and falls. Yup, my dad spent 40 years on rooftops in all weather's, and never had one accident. Cue week before Christmas, send him up the loft for the deccy's and out he falls breaking his hip - you couldn't make it up!!

Ange..xx