Arthritis in young people

adub

Hi,
I am a 20 yr old who was diagnosed with psoriatic arthritis about 2 years ago and thought it would be a good idea to create a place where young people can discuss their experiences of arthritis and look for support from their peers. as we all know its very hard to adjust to a long term illness at an early age so if anyone feels it would be helpful to talk online this would be ideal. from diagnosis to medication....

LegacyUser

Hiya,

I've PA too, diagnosed early 20's (bout 10 years ago)...
I reckon it's a good idea to educate yourself a bit about the condition and different treatment options etc - I think you need to be able to take ownership of your own treatment - you know better than anyone how you're feeling etc.

I got almost complete remission of both Psoriasis and Arthritis with Methotrexate and Enbrel, but it took a long time to get to that stage, as the doctors will want to work up the ladder of treatment options before they bring out the 'big guns'.

Excercise is very important, and I found Hydrotherapy to be the best - check with your doctors where your nearest Hydro pool is (even a normal pool will do but water must be quite warm to be effective).

Having said about the great results with the Enbrel and Methotrexate, you really do need to be careful with drugs this powerful - I'm currently off both since Christmas, when I had emrergency surgery due to abcesses of the bowel (in hospital at the moment also, just after more surgery to reverse a colostomy I was left with because of this)...

Don't want to scare you, but I mention it to emphasise my point about being assertive over your own treatment.

I visited the doctor 3 times around Christmas before he sent me to hospital when the abcesses were found.
If I had been put straight onto antibiotics at the time, I probably could have avoided the surgery, but the GP didn't prescribe them, thinking I had a viral infection...

I will go back on to the drugs - the relief I get is brilliant, both from the Psoriasis (skin and nails almost completely clear) and the arthritis.

I will, however, make sure than any time I'm unwell I insist on getting seen to properly!

Hope this helps (and doesn't just freak you out!)

If you have any questions, just ask

The_Conductor

I think the idea of this thread is a good idea- I'm going to sticky it- so it'll be easier to find. Just keep in mind- *no medical advice* to be given to anyone...... this is purely for people to discuss their own conditions, as it pertains to them.

Shane

LegacyUser

Hi

i'm 25 years old and was diagnosed with rheumatoid arthritis when i was 18. I have been on all the new mediactions enbrel, humira, infliximab, rituximab and now tocilizumab (hopefully this one will work as the others hav failed!!) I've also been on methotrexate since i was diagnosed and steroids although i hav managed to lower the dosage.

I had my hip replaced 2 years ago and have just had sugery to fuse a joint in my foot. I seem to b in the minority in that most people respond to drugs now a days and don't suffer joint damage. In fact when i was diagnosed I was given a leaflet saying there are probably people in the doctors surgery crippled and with the new treatments u won't end up like that. 6 years on I am that person!! but i try not to let it get me down, it's true wat they say u just have to get on with it!!!

i-digress

I'm 22, just been diagnosed with inflammatory arthritis this week, although I've been having symptoms for a while. I was fairly sure I knew what it was because my mum has a mix of rheumatoid arthritis, lupus arthritis and sjogren's syndrome. So I found out I have a, as yet undefined, version of that. I can deal with the pain, the stiffness, the lack of mobility. It's the being out of kilter with other girls my age I find so hard.

krudler

Am 28 and I was diagnosed with anklyosing spondilitis recently, sucks to say the least, had really bad pains in my right ankle and my elbows and now my left knee is as stiff as they come, have had problems with my back for a while which is where it mostly affects, right now am on arcoxia and deltacortoril steroids, 4 a day. have an x-ray on my back in a few weeks , being that I work in an office and spend 8 hours a day sitting down glued to a computer this isnt the best disease to have gotten, the tablets help and I try to swim as much as I can to loosen up as I cant run

i-digress

I'm on arcoxia too...how do you find it?

krudler

It helps a lot, didnt take it one day just to see how much of a difference it made and i really felt it

i-digress

Yeah I find it good too. I've just moved up to a higher dose so I'm hoping that has an impact

Ms. Captain M

adub wrote: »

Hi,
I am a 20 yr old who was diagnosed with psoriatic arthritis about 2 years ago and thought it would be a good idea to create a place where young people can discuss their experiences of arthritis and look for support from their peers. as we all know its very hard to adjust to a long term illness at an early age so if anyone feels it would be helpful to talk online this would be ideal. from diagnosis to medication....

I've had scalp psoriasis for the last 10 years and in the last few months have developed nail psoriasis. My doctor told me to keep an eye out for signs of arthritis, as apparently this can be a first sign of psoriatic arthritis. Was this the first sign for anyone?

LegacyUser

I'm glad I found this thread. I'm 24 and have had ongoing stiffness in my knees for years. Have had many different treatments but had a scope on my knee a few weeks ago and just went to get the results today. Was told by me consultant that I have arthritis and have been referred to a rheumatoligist. I'm pretty distraught. I have stiffness and pain in other joints on and off; fingers, ankles, wrists; so I'm terrified that I've rheumatoid arthritis. I'm feeling pretty down now, I just want to be able to do normal things like other girls my age. Sounds stupid but even small things like not being able to wear high heels gets me really down! I'm overweight and have been trying to lose weight recently but am going to really take it seriously now.

I've been reading up online and a lot of what I've read seems pretty hopeless...can people get arthritis at a young age and go on to live a reasonably normal life? Reading about chances of ending up disabled, having deformed joints, etc. is really scaring me

gustavo

Hi All

I've been pretty much diagnosed with Ankylosing Spondylitis , I'm 28 and will probably be going on a course of Humira pretty soon

LegacyUser

ArthritisHelp wrote: »

I'm glad I found this thread. I'm 24 and have had ongoing stiffness in my knees for years. Have had many different treatments but had a scope on my knee a few weeks ago and just went to get the results today. Was told by me consultant that I have arthritis and have been referred to a rheumatoligist. I'm pretty distraught. I have stiffness and pain in other joints on and off; fingers, ankles, wrists; so I'm terrified that I've rheumatoid arthritis. I'm feeling pretty down now, I just want to be able to do normal things like other girls my age. Sounds stupid but even small things like not being able to wear high heels gets me really down! I'm overweight and have been trying to lose weight recently but am going to really take it seriously now.

I've been reading up online and a lot of what I've read seems pretty hopeless...can people get arthritis at a young age and go on to live a reasonably normal life? Reading about chances of ending up disabled, having deformed joints, etc. is really scaring me

Hi, as i said in a previous post i was diagnosed with RA at 18 (i'm 25 now) and it definitely was scary. however, the most important thing is to get seen by a rheumatologist as soon as u can. Early treatment is so crucial and there is every chance, if you respond to the treatments that you will go on to live a "normal" life.

I have experienced the down side of not responding to drugs and having to have surgery on some joints however i have come out the other side of it knowing it was worth it. I have given up on high heels apart from weddings (thank god flat pumps are fashionable &are sold everywhere!!) I have had to make other compromises like going out with a walking stick prior to my hip replacement, but friends of mine bought me a cool blue one on ebay so i wasn't like a granny goin around!! and i then had to use a wheelchair for a while when going shopping etc..very difficult having ppl staring and stuff but it sure as hell opened my eyes to the difficulties ppl who are permanently in a wheelchair face and i was thankful i was only there temporarily. I am in the minority tho and its worth remembering that there are only a handful of ppl who don't respond to treatments and so most ppl do live normal lives!

it sounds cheesy but the support i have from my friends and family really help me through the tough times and stay positive. like on nights out with friends they would always make sure they got me a stool in pubs or nightclubs or my sister used to take me shopping in the wheelchair and was awful at steering it and we always crashed into things or took half a rail of clothes with us...embarrassing but it made me laugh!!

sparkling sea

I was diagnosed with Ankylosing Spondylitis a good few years ago. Have it in every joint on the left side of my body from my jaw to my foot.

I also have GERD, because I was on my medication for so long without being prescribed anything to counteract things like stomach ulcers, etc. Have to take 40mg of Nexium twice a day because of this. I also get flare ups of Uveitis.

Its really important to get an early diagnoses and this involves telling your GP or consultant all your symptoms and you also need to be persistant and stand up for yourself.

When you have this kind of condition you need to trust yourself and if you feel something is wrong get it sorted out straight away. I was on Humira about three years ago for about two months and I found it to be very good but I started to have problems with my hearing and so my consultant will not let me take anti TNF medication now. However when I rang the hospital initally to ask if they was a possible link, they said absolutely not and I was to continue with the medication. Trust yourself, only you know how you feel

I have been taking 25mg methotrexate once a week for about 4 years. I take sulphasalazine,5mg deltacortril, difene and paramol daily. I am supposed to take 10mg of diazepam if I start to feel that the other medication is not controlling the pain. I only take these if I have a really bad flare up and they work very well at controlling spasms, but for any taking these I would keep them for emergency only.

I am also meant to take Amitriptyline if I am a lot of pain and haven't been able to sleep for a couple of days but I found that although I did sleep when I took these I was very tired when I woke up and not able to cope as well with the pain.

I know severely people who have AS who are in their late teens or early twenties, I often see them when I visit my consultant. All those who are on anti TNF medication seem to be doing very well, it seems to almost stop the AS from progressing any further. They also have little or no pain which is brillant.

Exercise is key with this disease, you have to stop yourself from stiffening up. You must do your stretches everyday no excuses ( unless you are having a flare up, then you have to wait for the inflammation to go down). Also plenty of rest is needed, tiredness is associated with AS so have a couple of power naps in the day if you, and if you are really tired go to bed. Stress is another contributing factor, so try not to put yourself in stressful situations or to be around people who stress you out. If you have family who can help you let them - if you dont they will stop asking. Finally dont lift things, it really does aggravate AS - learn to say no I can't.

AS is a sero negative disease so keep an eye out for symptoms of other sero negative diseases as these can also cause you problems, but if you deal with this you can stop these other diseases progressing.

I was diagnosed with AS almost 20 years ago now. About ten years ago I was told I needed to use crutches and that I was to stop exercising, I was to take short walks only and to do light stretches.
In the past five years no one has every asked me if I have hurt my leg or arm - or if I have a problem with my hip or shoulder. I take pilates classes 3 times a week and have never been as fit or had as much energy as I have now. I also have an exercise bike and an ordinary bike and I cycle one or the other every day. The only thing that stops me now is if I have a bad flare which only happens about once a month for a couple of days.

Life's a peach - dont leave something like this stop you doing what you want to.

gustavo

Took my first Humira injection about 3 weeks ago

After 2 weeks I could notice I wasn't as stiff as I used to be before,No improvement in the psoriasis but I wasn't expecting that anyway

Anyway of course just before I was due to take the 2nd one I get a chest infection so I had to stop for a week , Annoying

Giggles1982

Can anyone tell me ...

mod edit

we cant give medical advice here.

he needs to see a doctor

star-pants

Your uncle needs to see a doctor - no one here can really say it is or it isn't something.
If it's fluid filled he might need something to reduce the swelling.
Either way you need to insist he goes.

Giggles1982

Thanks starpants . Im working on it - ill get him there, he said after christmas so hopefully ! Bloody men.....;)

star-pants

Aye I know, even my mother can be stubborn.
But it just doesn't sound like a 'touch of arthritis' to me. My mother has severe rheumatoid arthritis, and whilst you can get a range of things - I can't say whether or not what your uncle has is that (or not). So the doc is your best bet to get to the bottom of it.

krudler

Forgot I posted in here ages back Turns out I dont have ankylosing spondylitis, but i got arthritis after i had gastroenteritis (sp) at the end of the summer, something to do with the immune system attacking my joints, am on methotrexate and still on steroids, down from 6 a day to 1 day though, no longer on anti inflammatories, anyone got any experience of being on methotrexate? been noticing my hair is starting to thin a bit and its listed as one of the side effects, now it could just be nature taking its course as im heading into my 30's but I've noticed the hair on the backs of my legs is awful patchy lately, hope to christ i dont get alopecia or something, that i can do without, gonna say it to my doc next time i'm in as i get blood tests done every 2 weeks

star-pants

Well just my mothers experience, she was on methotrexate for years, thinned her hair out quite a bit (she still has thin hair now) and it did /does upset her as she never got the thickeness back.
But like she never had bald patches or anything, just a general loss of hair making it look very thin. Obviously your doc can discuss it better with you, just letting you know my mother had the same issue.

(btw yay on being off anti inflams and cutting down on the rest)

cobweb

Hi, brilliant idea for a thread!

I dont know if I qualify anymore as a young person but I was diagnosed with psoriasis when I was 19, had pitting of nail beds and nothing else until mid 20s, when I developed scalp psoriasis and it spread rapidly over my body but mainly the face and torso area.

Since I was 34 I have had PA in one toe on my foot, sounds small but had me on crutches on and off for the 6 months it took to diagnose (I thought it was a bad fracture) I then had a couple of steroid injections to treat the PA in the joint.

Really upset me when it was diagonsed as I felt it was something old people get and I still feel 24and until recently reg got mistaken for being 26/27.

Luckily so far, the injection to my toe joint worked and it hasn't reoccured to the extent of needing crutches, so I dont have to think about it. I was offered the humeira injection to help with Psoriasis but did not take it as I wanted to have children (so have had number 1) and hope nothing further develops so I can have number 2.

At the moment, I have had a second round of TLO treatment for psoriasis, which worked well and am periodically treating scalp with xamicol.

How do people find the xamicol?

I am not on any other meds as I dont like meds I have done the rounds and got fed up with nothing working or working for a short while then my body adapting. I think the attitude of the doctors didnt help and I find with psoriasis I would rub cabbage on my head at this stage if someone told me it would help.

Glad this thread is here as I have never mentioned out loud about my psoriasis or how bad it can make me feel sometimes, I got a fright when my dermatologist told me it was extremely bad and she was surprised that I was coping so well, basically I go around with my face on show good days or bad and often people stare, I also do a very public job so lots of people see me.and often people stare and whisper when its bad.

I have never mentioned about the PA as I am afraid it would interfer with job prospects, anyone else ever feel like that?

oops too long post sorry for rattling on but hi

krudler

star-pants wrote: »

Well just my mothers experience, she was on methotrexate for years, thinned her hair out quite a bit (she still has thin hair now) and it did /does upset her as she never got the thickeness back.
But like she never had bald patches or anything, just a general loss of hair making it look very thin. Obviously your doc can discuss it better with you, just letting you know my mother had the same issue.

(btw yay on being off anti inflams and cutting down on the rest)

Thanks for sharing, been doing a bit of reading up and apparently increasing the daily dosage of folic acid between days i take MTX may help the thinning hair, its not hugely noticable yet but as with all these things as soon as you notice yourself you imagine everyone will see it as badly as you do,even though I've said it to people and they've said they cant see any difference, I have a failr high hairline anyway

Did your mum ever have problems with her sight or just general fatigue if you dont mind me asking? I take MTX on Mondays as my regular dosage day and those days, well lets just say I dont make any plans, i feel like I'm almost in a fog, feel very restless and cant relax but at the same time have almost no energy, havent been sleeping well either lately, and my vision is definitely suffering, it could be the lack of sleep but my depth perception is messed up sometime and i constantly have "tired eyes"

star-pants

Yeah, my mother used to take 7 on fridays and well.. she'd not be quite well at all for the Friday or Saturday. She was put on folic acid too. And she'd be on courses of steroids here and there.
Her eyesight would be affected a little with the tiredness and as you say 'fog' - I know there were other medications that affected her eyesight in later years so I can't say it was definitely the MTX.

Obviously go through all of these things with your doc to make sure it is normal and so forth, but I do remember my mother suffering a lot of the same.

krudler

star-pants wrote: »

Yeah, my mother used to take 7 on fridays and well.. she'd not be quite well at all for the Friday or Saturday. She was put on folic acid too. And she'd be on courses of steroids here and there.
Her eyesight would be affected a little with the tiredness and as you say 'fog' - I know there were other medications that affected her eyesight in later years so I can't say it was definitely the MTX.

Obviously go through all of these things with your doc to make sure it is normal and so forth, but I do remember my mother suffering a lot of the same.

Ok, I was doing a bit of reading up on it earlier and some sites recommended increasing the folic acid or taking another supplement to help with the hair thinning, will say it to my doc about the eyesight thing, thanks for the reply:)

suraheg

Hey guys,

Good topic for a thread, Am 23 and have been having pains in my joints in both arms for 2 months now. I had a bad back at 13, and the doc said i had arthritic changes in my lower back.. at 13! So anyway went to the doctor yesterday and he said he thinks its arthritis. Am having bloods and xrays of my hands done next Friday and am just kinda worried!! Have been scaring myself by reading up on r. arthritis. He has me on at the moment Prednisolone and Arcoxia. Just thought I'd share and see what other kind of symptoms you guys had at the start of your diagnosis.

Thanks
Sarah

Tallon

This is so depressing waiting for test results

I cant fooking walk most days....

I've been reading this thread from the start and I really find all the stories comforting. I really had no idea of the large number of Young people that suffer from it....

Thanks guys



24 BTW

Tal

star-pants

It's horrible to think people get it so young. My mother developed rheumatoid arthritis when she was in her mid twenties, not long after having me. (seems pregnancy can trigger it if it's in your system)
Started with little things like her knee buckling, and pains here and there. Throughout my childhood and growing up I've seen her go through an awful lot, R.A., the meds, other minor conditions. But I admire her strength. She went on to have two more children, having to stop meds whilst pregnant, and runs a tight ship in the household.
Things weren't really that well researched when she was diagnosed, she was put on lots of 'new' drugs, good and bad. Research has come a long way in the last 25+years and so people developing it now have a much better chance at getting it under control. More doctors are in the know about it and it's not just an 'old people' illness.

So like Tallon I think this thread is great for people to share their experiences and be able to see they're not alone. Thus I thought I'd share my mothers' story, so you can see that life doesn't stop or rather she won't let her illness stop it

cuoriagitati

Hi all,

I too have been recently diagnosed with Rheumatoid Arthritis. I am 29 and so it came as quite a shock. My youger sis (17) has Juvenile Arthritis and i broke my wrist x2 playing footie so i don't think any of that helped! Gave up football after breaking my wrist the 2nd time and took up running. Managed to lose 4 stone in two years. I was only starting to feel properly fit and healthy when i started getting all theses symptoms, sore wrists, knees, feet especially in the morning before Xmas! Put a lot of it down to running and the fact that i am in training for a marathon and ignored it for a while until one morning i had to ring in sick because i was in so much pain. Funny thing is i live literally next to my job but just couldn't face it. I have also started on Methotrexate, Folic acid and a 3 week course of steroids. I have also been experiencing more weight loss despite the fact that i eat for Ireland!! It gets annoying also when every person i know keeps telling me i look very pale!!! Anyway, hopes spring eternal and i am doing the Rome marathon in 5 weeks time with my docs blessing of course. I refuse to let this beat me while i still have some control over it and so nothing would stop me running. What i am trying to say is there is still things we can all do. Sometimes its easy to lose yourself when times are tough with the pain, low self esteem that can come with arhtritis. I find that no matter how bad i feel on any given day, once i get out for a run i always, always feel better when i get back!

Keep the faith!

ibarelycare

I keep forgetting to come back and reply to this thread! I'm not going to bother going unregistered this time. I wrote the post below back in November and I can't believe how much has changed since then. I went to a brilliant rheumatologist in the Bons Secour in Dublin who diagnosed me with Psoriatic Arthritis. When I think about it now, I don't know why no one else diagnosed it before. I have had psoriasis on my scalp since I was a child. It has become milder as I got older but I've always mentioned it when seeking medical advice and no one put two and two together!

I went to see him in early December and he prescribed me methothrexate and folic acid. He also prescribed me some steroids for the immediate pain and said the meth would probably take a couple of months to kick in. The chemist I went to had to order the steroids in and I only got around to collecting them 3 weeks later and by then there was already a huge improvement. The pains I had been getting in fingers, wrists, ankles had completely subsided and the swelling in my knees had gone down loads, so I decided against taking the steroids.

I was also seeing an osteopath at the same time, who also used acupuncture on me, and I really feel he helped a huge too. I was meant to make an appointment with him again after Christmas but I haven't felt the need. Since the start of the year, the change in me has been astonishing. I have started running up and down the stairs instead of walking...just because I can! Somedays I feel like skipping instead of walking because I'm so happy that I can I still get quite sore after walking long distances but I'm just trying to build myself up slowly.

The biggest event for me was going out last Saturday night and...wearing high heels!! Lol it may be a small thing but it was huge for me. I went through my shoe collection and found all these gorgeous shoes that I hadn't even seen in nearly two years

I'm going to Australia for a 2 week holiday next weekend. The last time I was on holidays I couldn't do much active stuff...now I'm looking forward to going for long walks on the beach, and doing loads of sightseeing.

I was meant to be going back to my doctor on 3rd March but I had to change the date because of my holiday so not going until April now. He did say that there was probably irreversible damage caused by the arthritis and that I may need a knee replacement at some stage and also surgery on a finger that is bent out of shape from it but he made me feel very at ease about it all.

So there's a big difference between the person writing this post know and the one who posted in November. I have been following this thread and the posts from other people do really make me feel quite positive, so thanks!

Also the post above is very inspiring, best of luck in your marathon

ArthritisHelp wrote: »

I'm glad I found this thread. I'm 24 and have had ongoing stiffness in my knees for years. Have had many different treatments but had a scope on my knee a few weeks ago and just went to get the results today. Was told by me consultant that I have arthritis and have been referred to a rheumatoligist. I'm pretty distraught. I have stiffness and pain in other joints on and off; fingers, ankles, wrists; so I'm terrified that I've rheumatoid arthritis. I'm feeling pretty down now, I just want to be able to do normal things like other girls my age. Sounds stupid but even small things like not being able to wear high heels gets me really down! I'm overweight and have been trying to lose weight recently but am going to really take it seriously now.

I've been reading up online and a lot of what I've read seems pretty hopeless...can people get arthritis at a young age and go on to live a reasonably normal life? Reading about chances of ending up disabled, having deformed joints, etc. is really scaring me

am i bovvered

Got diagnosed with AS today. I feel so stupid because even though my brother was diagnosed 4 years ago ( he takes weekly injections) it still came as a shock to me.
I have had back pain for over 10 years but my doctor (x-rays), chiropractor and physio all said I did not have AS. My brother has insisted all along that there was a big chance, so to find out once and for all I asked to see a consultant. I was confident he would rule out AS.
Seen Dr Carey in Galway today and he has prescribed Sulfasalazine for 3 months and then to see him again. I take Diphene when needed.
I am very active, run (5k on a treadmill with a heat belt) and stretch most days but everything revolves around "how is your back today ?" I listened to this http://www.nass.co.uk/public/podcasts.htm and am now angry with myself for being so naive about not pushing harder for an earlier diagnosis, and will have to admit my brother and his partner was right all along !! (they will be a great help
I am not a that young..... 37 but am a keen skier and had hoped to ski my whole life ???
Some of the posts here are very encouraging.
Any advice is greatly appreciated

snowstreams

Im 28 & I got diagnosed with Ankylosing Spondylitis last year, but had severe hip pain for 2 years before that & mild hip/back pain since i was 18 or so.
I went to so many physios over the years, but none of them noticed anything wrong. It wasnt till i couldnt walk anymore that i found out. I used to think it was just tight muscles from cycling and running, but being unable to walk was too much.
I dont run anymore because its too painful but i swim as much as i can when i dont have a flare up. I take salazopyrin all the time which seems to help, but i take diphene when i get a flare up.
Does anyone notice what causes their flare ups?
I feel i get flare ups when ever i catch colds or get stomach bugs, does anyone else think that?
I have noticed that skiing and cold weather seem to cause flare ups too, but I just take plenty of diphene on skiing trips.

StinkySocs

Hi

I have Rheumatoid Arthritis for 7 years now, and it's such a PAIN!!!

I've tried most of the drugs mentioned and now I'm on monthly infusions now, which aren't really working:(

I'm in a support group that's built for young ppl with Arthritis - 18 to 35 - 40 years old, it's only new but we are working with Arthtitis Ireland to promote it. It's not medical advice - as we're not qualified for that but it is helpful for support and totally confidential. We all have different types of Arthritis so there is a wide range of experience.

Please feel free to PM to find out more information, as I'm not sure if I'm allowed put the information up here.

Chat to you then:)

lily lou

Hi everyone, Check out the facebook page FAB Fighting Arthritis Back, hope it helps:)

Captain Danger

Hi all,

Great idea for a thread. I'm 29, got RA when I was 19 and I've never even met anyone near my own age in a similar position. It's sorta comforting to know there's a few more out there!

up for anything

I hope you don't mind me joining in even though I'm an oldie by your terms. I was diagnosed with PA two years ago when I was nearly 47 and my husband was diagnosed with AS 16 years ago when he was 37. Both of us older than the norm. I have four children between the ages of 8 and 15 and constantly worry, in the back of my mind, about them developing arthritis and missing out on the signs of it.

I have been taking Methotrexate since I was diagnosed and find that during the hours following taking it that I am wiped out. No energy, no motivation and so tired. It does help keep the aches at bay though.

StinkySocs

Hi! your more than welcome to join our group!

I know how you feel, being totally wiped out, it's a drag! i take an iron tonic that my local chemist makes up for me. My doc says it fine for me to take it. You should check with ur gp, as I find it really helpful, but like i said just check at ur next consultation- no harm in asking!

This is our facebook page: http://www.facebook.com/home.php?#!/pages/FAB-For-18-35s-with-Arthritis/121463641200950?ref=ts

(Mods please feel free to edit if i shouldn't put it up)

Were having a meetin/catch-up on the 12th June, please feel free to email us on joinfab@gmail.com if your interested.

Thanks for the interest!
SS

StinkySocs

Hi
FAB are having a night at the dogs in harolds cross on the 12th June, if anyone wants to join us!!!

Hope to see ye there!

LegacyUser

Hi all

Have just stopped taking salazopyrin 3grms daily and mobic 15mg since Sunday, I have Seronegative polyarthritis, affecting my knee 3 toes and ankle, on different feet.

Started methotrexate monday 7.5g, with nothing else yet.
Now I know not to expect anything for at least 3 to 4 weeks, but i am litterally doubled over trying to walk.

Was told to take paracetamol for the pain. Not working at all.

Has anyone successfully taken something else to combat the stiffness and pain other than paracetamol?

star-pants

I would suggest asking your doctor what else you could take if paracetamol isn't helping.
Someone here could suggest a painkiller but wouldn't be qualified to say you should/could definitely take it. I know my mother got very very nauseous on methotrexate, so paracetamol is mild on the stomach which is why it was probably suggested.

Depending, with some people, applying gentle heat can help ease the pain, my mother has rheumatoid arthritis everywhere and she finds it can sometimes make it bearable. Again, check with your doctor first perhaps.

bizzy_lizzy

Does anyone have the name of a consultant who would deal with young children (age 8), I was told at Crumlin hospital that it could be March before we get an appointment there (and that is via Private Clinic)!
Just wondering if any of the posters here had referrals while in Paediatric care.

thanks in advance

adub

Hi, I am the girl who first started this thread and I completely forgot about it until i was on this website for a different reason a few days ago. I was so happy to see the amount of replies that this topic got and that it provided support to people. I did not know myself that there were so many young people out there with arthritis. I just thought that i'd give you all an update anyway. Well it has been two years since i posted i am now 22 and have discovered that it was not psoriatic arthritis that I have, they dont actually know what type i have as there is no rheumatoid factor in my blood so they say its a sero negative inflammatory type of arthritis. my situation is kinda weird cos autoimmune diseases kind of run in my family as my little brother has crohn's disease (he was 4 when he got it which is extremely rare for his age) and there is quite a close link between crohns disease and arthritis as i found out after getting put on an arthritis drug which gave me symptoms of crohns!!!! I tried mtx for altogether 4 years on the max dose for my weight and it did nothing so my rheumatologist - the amazing Killian O rourke put me on Humira which at first was a miracle drug. after i got used to the injection every two weeks (i have the pen, couldnt even try the normal needle!) it was grand but i now get a very bad flare up every month or so and because of the humira i have a basically non existant immune system so i catch every cold,flu etc thats going. for example i have a chest infection now so i cant take the humira while im sick and i am in absolute agonly every joint in my body aches from my knuckles to my neck, shoulders, lower back, hips, knees, elbows, ankles, toes and wrists (which are the worst). the worst part of having arthritis at a young age (in my opinion) is you dont want to admit to people your age that you are sick so you try and keep up as much as you can which can often make you sicker. i tried for about two/three years to keep going out every weekend dancing with my friends but i realised in the end theres no point and that you need to find out who are your real friends. i lost a lot of friends through them being unable and unwilling to accept that i was really that sick/tired/swollen to go out or even move! but i am thankful now for the amazing friends i have. i would advise anyone who has found out they have arthritis to talk to ur arthritis nurse-drs dont always have the time, and to also join the facebook page there's incredible support out there, unfortunately we're all in the same boat!!!

adub wrote: »

Hi,
I am a 20 yr old who was diagnosed with psoriatic arthritis about 2 years ago and thought it would be a good idea to create a place where young people can discuss their experiences of arthritis and look for support from their peers. as we all know its very hard to adjust to a long term illness at an early age so if anyone feels it would be helpful to talk online this would be ideal. from diagnosis to medication....

Tallon

This thread has made a real difference to me...

It's nice to know there are more people in the same position as me and who have came through it ok

Thanks adub

adub

thanks tallon uv made my saturday!!

Tallon wrote: »

This thread has made a real difference to me...

It's nice to know there are more people in the same position as me and who have came through it ok

Thanks adub

The_Conductor

I've found it to be helpful too- and some of the comments sent me off in a particular direction to see what the likely longterm outcome of my Crohn's is (I've already been diagnosed with osteopenia and osteoarthritis- along with a bewildering array of other afflictions.......) I dread to think what our kids are going to make of both of us crocks.......

adub

it's strange how when you get something you suddenly find yourself riddled with afflictions isn't it? I can sypmathise with you as i know first hand what arthritis is like i also have osteopenia and my little brother has crohns - he's just out of icu in crumlin hospital unfortunately they know him by name now!! it's so sad to see an eleven year old reduced to wearing nappies at nite and having to clean up blood and feaces off the bathroom floor

smccarrick wrote: »

I've found it to be helpful too- and some of the comments sent me off in a particular direction to see what the likely longterm outcome of my Crohn's is (I've already been diagnosed with osteopenia and osteoarthritis- along with a bewildering array of other afflictions.......) I dread to think what our kids are going to make of both of us crocks.......

astra2000

I have RA I have it almost 7 yrs, got it when I was 30, but prior to that I had always been achey/stiff. I too have tried a few different meds but none of them really did a whole lot. The best results I got was on methetrexate20g and plaquenil, but still wasnt wonderful. I found while I was taking any of these meds I was always sick and never felt right. I stopped taking them 18mths ago and now just take difene75 every day if I am having a bad flare I take one in the morn and one in the eve. Since I have stopped taking the immune supressers I do have more pain but I feel much better in myself, it is over a year since I have had a cold or any illness a huge improvement on having been sick at least once a month and more often than not more than once. I have learned to cope with and bear the pain better, I am a full time mum and tbh having a job outside the home would probably be impossible for me to cope with as I would end up taking a lot of time off.
I realise that at some stage in the future I may have to look at other medications, but for now while I am managing and my overall quality of life is good I am staying away.
I would just like to say to anyone recently diagnoised with a similar illness or having the symptons of one, that you will adjust to it, it wont take over your life, sure you will have to make changes but you will learn to adapt and in time it will take a back seat in your life as opposed to taking it over as it surely does in the beginning. Get a good consultant and gp dont stand for been told any of your symptons are in your mind, you know how YOU feel and dont allow anybody else to undermine you. Dont doubt yourself or begin to think its all in your mind, do what it takes to get an answer and help.

adub

God i wish i could do what you do it sounds so great but i also have low platelets in my blood so cant take difene or any painkillers or anitinflammatries!

The_Conductor

adub wrote: »

God i wish i could do what you do it sounds so great but i also have low platelets in my blood so cant take difene or any painkillers or anitinflammatries!

Talk to your consultant- or get your GP to refer you to a consultant haematologist. There are very effective treatments out there for those of us (me included) who suffer from low platelets (up to and including transfusions).

adub

smccarrick wrote: »

Talk to your consultant- or get your GP to refer you to a consultant haematologist. There are very effective treatments out there for those of us (me included) who suffer from low platelets (up to and including transfusions).

i do have a haematologist but they still wont let me take anti inflammatries as they thin the blood

astra2000

adub wrote: »

God i wish i could do what you do it sounds so great but i also have low platelets in my blood so cant take difene or any painkillers or anitinflammatries!

So many people have problems taking strong pain killers it makes a bad situation even worse. Is it possible as smmcarrick suggested that there are other means of treating the pain without affecting blood pallets? Would it be possible to use neurofen patches/gels on the affected area.
One of my friends has RA she never took any treatment apart from difene as she was planning on starting a family. She altered her diet hugely got info from a book on RA, she took fish oils and evening primrose oil and it made a huge difference, it took about 12 weeks for her to see a change. My own experience was a couple of years ago I took drastic action (never again) to losr weight and went on a milk shake diet liprotrim, during that time I hardly had much pain. Now I cant say for sure that this works most rheuatologists will say diet makes little difference but a lot of people who have RA say different. Might be worth taking fish oils, evening primrose oils and having a look at reccommended diet, its basically a diet high in oily fish lean chicken not too much red meat, no citrus fruits and foods like porridge that are a natural antiinflamatory food.