Newbie to forum

achinbones

Hi I'm achinbones, 37 years old and have been troubled by RA on and off for the last 24 years. I was diagnosed with Palindromic Rheumatoid Arthritis about 2 years ago though the rheumy is still not 100% certain as my symptoms are very unusual. I have been up and down with Methotrexate and various anti-inflamatories. I am currently off Dicloifenac cause it 'bungs me up' and my gp is trying to find an alternative. I now am being tested for underactive thyroid as I am beginning to have trouble with my weight. I two kids and have had some fabulous flexible times along with some frighteningly stiff and sore flare ups. I don't know anyone else in the same situation and am hoping the forum will connect me to some people who actually understand what it's like when you can't even scratch your own nose!

vonski

Hi

Sorry I can't offer any advice but I know people soon will. Just wanted to welcome you to the forum. We all listen

Love
Vonski x

skezier

Hi,
Should also like to say HI as well. I hope you find it as helpful a site as I have, take care, Cris

elnafinn

Hi achinbones

Welcome to the forum. Your diagnosis is quite rare isn't it, or am I wrong on that one? It is good to hear that you have at least had some time when you have felt brilliant but not so good with the bad flare ups. I had a thyroid op when I was 16 years old - a long time ago - and have taken thyroxine daily ever since. I had to come of diclo after a couple of years because of stomach problems and am now prescribed Arcoxia (Etoricoxib) 60 mg tabs and I take 2 daily which seems to suit me fine.

Hope to hear from you again. There may not be many with your diagnosis on here but we do all know about the pain in greater or lesser degrees and how it affects our lives and the reactions many of us get from family and friends, when they just do not appear to understand what we are up against.

Chin up,

Luv
Elna

achinbones

elnafinn wrote:

Hi achinbones

Welcome to the forum. Your diagnosis is quite rare isn't it, or am I wrong on that one? It is good to hear that you have at least had some time when you have felt brilliant but not so good with the bad flare ups. I had a thyroid op when I was 16 years old - a long time ago - and have taken thyroxine daily ever since. I had to come of diclo after a couple of years because of stomach problems and am now prescribed Arcoxia (Etoricoxib) 60 mg tabs and I take 2 daily which seems to suit me fine.

Hope to hear from you again. There may not be many with your diagnosis on here but we do all know about the pain in greater or lesser degrees and how it affects our lives and the reactions many of us get from family and friends, when they just do not appear to understand what we are up against.

Chin up,

Luv
Elna

Hi all,

Thanks for the replies.

Elna,

As far as I know my RA is quite rare. The rhumy said he had never seen one like me before and had only read about it. It almost makes me feel quite special but I'd rather not have it at all (wouldn't all of us). I'm at GP today to get an alternative to diclo and hope that this will work without the tummy problems. It's good to know there are others that understand because no matter how much the family tries they don't understand the flare ups and the frustration they cause. Is thyroid trouble connected to RA? I know it's another auto immune disease but that's about it.

Luv
Achinbones.

elnafinn

Hi Achinbones,

Love the name, by they way! Often gps prescribe a tum protector drug along with the diclo. The arcoxia I take now seems to suit me. Good luck with the new med.

Thyroid trouble is not connected to arthritis. It is easy to manage once the right dosage of thyroxine has been sorted out. This is done by blood tests. I have a blood test every 6 months or so now just to see if my dosage should be changed or not. For years and years it stayed the same but recently has had to be lowered a couple of times - probably age related! Once you are on thyroid you can get an exemption card to obtain all your prescriptions free but I expect you are aware of that.

Look forward to seeing your name more on here. This forum really is brilliant for somewhere to go to keep sane with all that this arthritis throws up at us.

Keep smiling

Luv
Elna x

achinbones

elnafinn wrote:

Hi Achinbones,

Love the name, by they way! Often gps prescribe a tum protector drug along with the diclo. The arcoxia I take now seems to suit me. Good luck with the new med.

Thyroid trouble is not connected to arthritis. It is easy to manage once the right dosage of thyroxine has been sorted out. This is done by blood tests. I have a blood test every 6 months or so now just to see if my dosage should be changed or not. For years and years it stayed the same but recently has had to be lowered a couple of times - probably age related! Once you are on thyroid you can get an exemption card to obtain all your prescriptions free but I expect you are aware of that.

Look forward to seeing your name more on here. This forum really is brilliant for somewhere to go to keep sane with all that this arthritis throws up at us.

Keep smiling

Luv
Elna x

Hi Elna,

Thanks for that. I have just looked on t'internet about Thyroid and have found that I appear to have several of the symptoms. It seems that another of life's little challenges is being thrown at me. (I wish the aim was a little off and would miss!)

Luv
Achinbones. :roll:

elaine5000

achinbones wrote:

Hi I'm achinbones, 37 years old and have been troubled by RA on and off for the last 24 years. I was diagnosed with Palindromic Rheumatoid Arthritis about 2 years ago though the rheumy is still not 100% certain as my symptoms are very unusual. I have been up and down with Methotrexate and various anti-inflamatories. I am currently off Dicloifenac cause it 'bungs me up' and my gp is trying to find an alternative. I now am being tested for underactive thyroid as I am beginning to have trouble with my weight. I two kids and have had some fabulous flexible times along with some frighteningly stiff and sore flare ups. I don't know anyone else in the same situation and am hoping the forum will connect me to some people who actually understand what it's like when you can't even scratch your own nose!

Hi Achinbones
I sooo understand how you are feeling, hun...sending you some very gentle cyberhugs.
I was diagnosed with Palindromic Rheumatism (PR or PRA) in 2001 at the age of 41. At that time it was concidered a rare form of Arthritis with hardly any information available on-line. Now it seems to be more common as more doctors are aware of its existance and more meds are now prescribed instead of struggling with just pain meds.
Basically it's an intermittent form of Arthritis (comes & goes) that moves from joint to joint but as you know is extremely painful when it flares. Some suffers eventually move on to develop RA or another form of Inflamm Arthritis and some peeps stay Palindromic.
My flares became more prolonged and bi-lateral and in 2005 had an MRI & was diagnosed no longer Palindromic but another form of Inflamm Arthritis (poss RA negative but like yourself...unsure).
I'm taking Hydroxychloroquine which I'm doing well with...just the odd minor flare.
Sorry but I'm not really familiar with NSAIDs because I'm seriously allergic to Diclofenac & many others.
I hope I'm not breaking any site rules with this, but there is a very informative site on PR and it's well worth you taking a look. It's the International Palindromic Rheumatism Society and they have a great forum too. There are lots of very friendly peeps there to share the one thing in common...PR/PRA.
Hang in there lovey
Lots of love & hugs
Elaine x

achinbones

elaine5000 wrote:

achinbones wrote:

Hi I'm achinbones, 37 years old and have been troubled by RA on and off for the last 24 years. I was diagnosed with Palindromic Rheumatoid Arthritis about 2 years ago though the rheumy is still not 100% certain as my symptoms are very unusual. I have been up and down with Methotrexate and various anti-inflamatories. I am currently off Dicloifenac cause it 'bungs me up' and my gp is trying to find an alternative. I now am being tested for underactive thyroid as I am beginning to have trouble with my weight. I two kids and have had some fabulous flexible times along with some frighteningly stiff and sore flare ups. I don't know anyone else in the same situation and am hoping the forum will connect me to some people who actually understand what it's like when you can't even scratch your own nose!

Hi Achinbones
I sooo understand how you are feeling, hun...sending you some very gentle cyberhugs.
I was diagnosed with Palindromic Rheumatism (PR or PRA) in 2001 at the age of 41. At that time it was concidered a rare form of Arthritis with hardly any information available on-line. Now it seems to be more common as more doctors are aware of its existance and more meds are now prescribed instead of struggling with just pain meds.
Basically it's an intermittent form of Arthritis (comes & goes) that moves from joint to joint but as you know is extremely painful when it flares. Some suffers eventually move on to develop RA or another form of Inflamm Arthritis and some peeps stay Palindromic.
My flares became more prolonged and bi-lateral and in 2005 had an MRI & was diagnosed no longer Palindromic but another form of Inflamm Arthritis (poss RA negative but like yourself...unsure).
I'm taking Hydroxychloroquine which I'm doing well with...just the odd minor flare.
Sorry but I'm not really familiar with NSAIDs because I'm seriously allergic to Diclofenac & many others.
I hope I'm not breaking any site rules with this, but there is a very informative site on PR and it's well worth you taking a look. It's the International Palindromic Rheumatism Society and they have a great forum too. There are lots of very friendly peeps there to share the one thing in common...PR/PRA.
Hang in there lovey
Lots of love & hugs
Elaine x

Hi Elaine, nice to hear from someone who has heard of PRA. I went on line to find out about it and found that my flare ups are not like those described so I challenged my rheumy. He was a bit surprised but told me even though it looked different it was more PRA than RA because (as you said) it comes and goes. I have just been given Mefenamic acid to replace diclo and have made the mistake of reading the leaflet inside the packet. A list of side effects like my shopping list! Have you or any one heard of it? It's new to me and I would be interested to find out personal experiences.
Thanks for the support.
Luv
Achinbones

elaine5000

Sorry I'm not familiar with Mefenamic acid but hopefully someone here is.
Although you say you can't really relate to the symptoms you have read about PRA but yours are intermittent, not everyone is the same. We all suffer in different ways. Some get flu-like symptoms & severe fatigue (like myself) as well as joint pain. Some don't experience any joint swelling but others suffer badly with it. By being in touch with many other PR peeps I have realised how we all suffer differently but are diagnosed with the same condition. This is what makes it so difficult to diagnose and treat. The diagnosis is often based on the fact of it's intermittent nature.

Elaine x

pluggathome

Hi Achinbones.

Great choice of name by the way.

My hospital letters show me as RA and Palondromic Arthur so I am a little confused now so I thinks I have some questions for my rhuemy as I know exactly how you feel.

I joke that RA/PA (whatever) in my body has a nightly meeting about where it is going to attack next. You go to bed being able wipe your bum and wake up not. One day you can brush your teeth, one day not and it goes on.

I have persistent problems with my hands and wrists and intermittant with feet,shoulders, elbows and jaw. That prob why I have both on my list.

I had diclofenac first, nightmare, then arcoxia, nightmare continued, hydoxy..... no help, steriods, good quick fix but make me jitty, back with the rhuemy in couple of weeks to discuss methotrexate.

I shall quiz my rheumy when I see him as he his great and if I gain any pearls of wisdom I shall pass them on.

Plugg

yesmeducky

achinbones wrote:

Hi I'm achinbones, 37 years old and have been troubled by RA on and off for the last 24 years. I was diagnosed with Palindromic Rheumatoid Arthritis about 2 years ago though the rheumy is still not 100% certain as my symptoms are very unusual. I have been up and down with Methotrexate and various anti-inflamatories. I am currently off Dicloifenac cause it 'bungs me up' and my gp is trying to find an alternative. I now am being tested for underactive thyroid as I am beginning to have trouble with my weight. I two kids and have had some fabulous flexible times along with some frighteningly stiff and sore flare ups. I don't know anyone else in the same situation and am hoping the forum will connect me to some people who actually understand what it's like when you can't even scratch your own nose!

Welcome Achinbones,
I think you'll find many of us here have days when we can't scratch our noses so please join in! Look forward to your posts. Take care,
Heidi

pixiepint

hi, i have been prescribed this for pain, and because it also reduces bleeding which helps with my anemia. i haven't had any side effects with it, but the pain relief is not good. For me it doesn't touch the pain, but seems to help inflamation. having said that, i know that for some people it really works. I'd say give it a try, the side effects are probably rare, and those leaflets really freak you out.

Love

pixiepint

elnafinn

This thread is bumped up for Yoyo.

Elna x

woodbon

Just to say hello and welcome to the forum. I hope you find it useful. Love Suexxx

tjt6768

Hi and welcome to the forum from me too.
Really sorry that you are having such a tough time.. You will hopefully find lots of great advice and help on here. It's a great place for it.

Hope today is a good day for you..

Best wishes.

salamander

Hi, welcome to the forum.

I took Mefenamic Acid for over 30 years for dysmenorrhoea, which is what it is often prescribed for. Not bad as a pain killer. It's an NSAID but won't bung you up like the diclo. Had the opposite effect on me. Sorry eveyone!
Hope it works for you.

bubbadog

Hi and welcome to the forum, so sorry your having such a hard time. You've come to the right place to meet people in the same boat as you. Hope you enjoy the forum as much as I do! bubbadog/Amanda