Just been dignosed with RA

camillo

Seems very agressive - immediate case for Methotroxate (Spelling??)

Debilitaing pains etc.. (I guess you all know the score)

So im glad you guys are here...

Just wandering what support i can get???

I work full time - so imagine any sort of benefit is out/not necessary????
I have HSE coming into work to give me an assesment - for working conditions and parking etc...
Have trouble driving etc - so applying for a blue badge (WHats the chances of getting one of those?? - I genuinely suffer when driving and walking is very difficult - any tips?)

Have bought a few books - Another Alice and a few nutriitonal books

Looking for a self help group/meeting in the West Midlands ish area...

Just clutching at straws at the moment and trying to avoid staring into the abyss to be honest...

As my fav poem states...


Do NOT go gentle... 8)

Sorry if the post is in the wrong place or if it looks like im a rambling maniac...

Thank you if you respond.

Camillo

speedalong

Hi Camillo,

welcome to the forum, though sorry that you have been diagnosed with RA.

OA is my thing, but others with personal experience of RA will be along to answer your post.

Debilitaing pains etc.. (I guess you all know the score)

You could try for DLA (disability living allowance)- it isn't means tested ... if you decide to apply for this get the CAB (citizens advice bureau) to help you.

If you get high rate mobility component of DLA then you automatically get a blue badge ... if not you can still apply, like I did, takes longer and means more battling - but it is possible.

The "In your area" tab or ringing the helpline will be able to put you in touch with self help groups and meetings and AC also run courses.

Finding out as much as you can is a good idea - knowledge is power!!

Keep reading and posting - we will never think your posts are silly - we have all gone through the diagnosis and coming to terms with it (or not) process.

Speedy

jenzie06

Hi Camillo
Sorry to hear about your diagnosis but to be honest the diagnosis is usually the start of feeling better so don't fret.
I've had RA and fibromyalgia for the past 12 years and yes it is a pain in the bum but life carries on (I've just become a mum).
I would definitely go to a support group if you can and surround yourself with positive people.
Definitely apply for DLA and get the CAB to help you fill out the form (I always laugh at the question 'do you have problems filling in forms' as its on page 16! Why not put it on page 1?!). As Speedy says its not means tested and it doesn't matter if you work (of course if you do a manual job such as bricklaying they do question some of your answers if you say you can walk or lift anything).

Methotrexate is a great drug if it does the trick and gets the RA under control. Side effects can be a pain but as long as they are manageable and it makes your RA better then its worth it in the long run. I've tried most drugs (RA related!) up to anti-TNFs.

Keep your chin up, Keep positive and laugh as much as possible.
Sending you a hug.
Jen

tarasmygirl

Hi Camillo

I too am recently diagnosed with RA and started Metho 2 weeks ago, I also work full time.

Getting the diagnosis does help as there are so many people, inlcuding those on this site, who can help with advice and laughs to cheer you up when things look bad.
I've found the Metho , plus anti inflamatories and painkillers, have brought pain level down greatly. hoping that as I get further on with Metho, I may be able to cut back on others, but will have to wait and see.
I expect you will have the same where some days you have felt pain was extreme and hopefully you will also be getting support from both medics and family as well as your work.
My visit to the day ward next month is to see the OH so they can determine what help I need.
That's the thing I have found so far with RA - yesterday I was able to walk a good distance before feelng pain in feet. Last week it was 30-40 yards then I had to stop. I've thought about applying for a blue badge as I have to walk 200 yards plus from parking to office, but have decided to wait until I see OH plus see how Metho is ehlping in a couple of weeks
take care
Cath

dreamdaisy

Hello camillo, and welcome to one of the worst clubs in the world. I am so sorry to hear your news, it is truly devastating at first. I don't have RA but PA, which is very similar but with the added benefit of P (psoriasis). I too am on methotrexate plus a shed-load of other gunk. Methotrexate is effective for some, not so helpful for others and as much use as a iron feather for the rest. I fall into the last category - I've just had two weeks off it and feel so much better! I sincerely hope you fall into the first groups tho - it can work wonders and the only way to find that out is to try it. Are you on tablets or jabs? Sickness is a common side-effect but again, it varies widely from person to person. I started on tablets but was taken off those when I developed a rash. I've been on the injected stuff for ages and only had one dose of nausea. You should also have been prescribed folic acid, to take on the following day or more frequently (docs seem to vary as widely as their patients' responses on this) but you don't take it on the same day as meth. Once you're on it keep out of the sun or use a high-strength sunscreen: meth affects the skin's ability to deal with UV.

There is a plus-side: you know what you are fighting, and the meds may well help to slow the progress of the disease. They are not a cure, that doesn't exist, but if you are treated early enough it can be very effective. Don't frighten yourself with internet research on RA - talk to us, we're the people that know, we all battle with arthritis, and we understand. I wish you well. Dreamdaisy

tillytop

Hello and welcome from me too.
So sorry about your diagnosis, but you have come to the right place for support and advice. Sorry I can’t help on the benefits questions but obviously other peeps can advise on those.
I have had RA for 14 years now so understand what you are going through. Hopefully once the Metho kicks in you will start to feel better – and if, for some reason, the Metho isn’t the right drug for you, then there are lots of others out there so don’t despair.
Just a word of warning if buying books about RA – I have found that many of them are quite out of date and as such can be quite frightening. For example the first book I bought suggested the Metho was only used for the most aggressive cases of RA when in fact it’s now used routinely early on, to try to get the inflammation under control.
Please do keep posting with any questions – and don’t ever worry about “rambling” – we’ve all been there!
Love Tilly x

dorcas

Hi camillo and welcome to the forum

you've had lots of good advice about DLA etc...just wanted to add that if you have physical difficulties with driving you can ask your doc or rheummy to refer you for a Driving Assessment. In Scotland there is a specialist centre that people get referred to. I imagine it'll be the same where you are although it might have a different name...but your GP should know.

They will assess what aids or adaptations you might need to help you get in/ out of the car, hand brake adaptations etc. (list is endless and obviously depends on what you need). The waiting list is long so ask the doc to refer you as soon as pos.

As others have said Mtx is a useful drug but can (for some) cause side effects. It is well worth sticking with if it helps dampen down the RA, and if not..well there are other meds.

Keep posting and ask anything you want to ask...there's no such thing as a 'wrong' question.
I hope we will see you posting around the forum...join in at any time! we are a friendly bunch and help each other as we go along.

..have posted you a link for this website's publications on RA...much safer reading than a lot of text books!

http://www.arthritiscare.org.uk/Search/search_results_page_view?SearchableText=rheumatoid+arthritis

Iris x

elnafinn

Hi Camillo

Welcome to the forum. You are in the right place and top marks to you for finding us at the beginning of your journey with "arthur". You have arrived at a good place where we all try to help and support each other. There is help out there, it is knowing what is available and this is the place to read old postings and ask, ask, ask. Knowledge is power, I always think. We often answer the same questions over and over again, but we do not mind in the least, so just ask away.

I have read a few of Alice Peterson, books, both fiction and non fiction.

I am sure you can apply for the Blue Badge via your gp. My mum did. That is all she has applied for and it came through quickly. She does not drive but has it to use if friends take her out in their car.

I have OA so have not been prescribed metho but many people are helped by this drug. So any questions you have about that, you will get loads of replies.

Your post does not make you sound like a rambling maniac at all, but we like people like that, anyway!

Look after yourself,

Luv
Elna x

marooned

HI MY DAUGHTER WAS DIAGNOSED A FEW MONTHS AGO AGED 23 AFTER SUFFERING FOR ABOUT A YEAR UNDIAGNOSED, HER CONSULTANT SUGGESTED SHE START MTX STRAIGHT AWAY . SHE HAS BEEN ON IT ABOUT 3MONTHS ALONG WITH THE SULPHAR, INITIALLY SHE COULD SEE NO BENEFITS SHE HAD TO STOP RIDING ECT DUE TO THE PAIN, SHE IS NOW BACK RIDING AND GOING OUT EVEN GOING ON A DATE LOL , THE MTX SEEMS TO BE WORKING WONDERS SHE IS A 100% BETTER SO I HOPE IT DOES THE SAME FOR YOU , ALL THE BEST

carola

Hi Camillo

Welcome to this site and sorry about your diagnosis.

I was initially diagnosed with RA but rediagnosed with SLE and Polyarthritis.

I bought lots of books on Rheumatoid Arthritis when we thought I had it and the most handy was for being NEWLY diagnosed was by MEA McNeil "The first year - Rheumatoid Arthritis". Only my opinion though.

You will get lots of handy tips here from everyone. My handy tip today is to when you are at the Rheumatologists, ask to meet the Rheumy Nurse. I have found this to be so valuable to me as after my first visit which was in April this year, the next available appointment was January NEXT YEAR!! I then spoke with a Rheumy Nurse and she secured an appointment for me last week and then one for Sept 1st so a great person to have on your side!!

Keep positive and sit down and cry when you need to so you can get rid of frustrations. Be kind to yourself when you get tired or sore. Above all, DO NOT GIVE UP, keep questionning the docs for explanations and help.
Keep us updated and keep smiling Carol

frogmorton

Hi camillo
and welcome from me.

It came on suddenly for me too - from no-where almost

Where are you?

A few of us on here are in staffordshire??

LOve

Toni xx

camillo

Thanks to everyone of you that responded..

I am truely overwhelmed...

Reading some of the posts made me well up - a few times - just an explosion of emotions! :shock:

Im still at the stage when i HATE this.I gotta be honest.Im angry and scared...

It affects me in every way - emotional physical - spiritually the lot....
Ive used people as verbal punch bags - and I know its wrong...so i gotta stop that...i guess it comes through in stages - the old 5 stages of grief thing...

i will get there...

But i miss my sports( Was a british champion for the last 3 years - now its just stopped) - ability to do my blokey things for my family without cringing in pain :shock:

I got to adjust - and you are all so right - STOP reading everything on the tinterweb!

Im gonna stick witht he winners - and they seem to be here...

So im going nowhere - Im near Warwick BTW...

Need to find some self help groups and starting talking with fellow Arthurs

frogmorton

Hi Camillo

You are so right - you ahve to work thorugh those stages talking and redaing are good, but talking to those who KNOW and understand is best.

This forum saved my sanity when this kicked off for me. Information helps you to be able to 'predict' the future better which makes you less terrified. Fear of the fuure and the unknown is the worst

Family are frightened too and so sometimes it is better to take some of it 'out' on us lot and save them some of it.

I went to an A/C event at leamington last year - there are people that way including at least one in Rugby.

Once you get things under control you will feel your life back under your control a bit and that helps no end.

There is life after diagnosis - YOU are still there - maybe not the same life but good all the same.

You are right - a lot of people on here are really positive and certainly winners.

Love

Toni xx

barbara12

Hi Cammilo
Has you can see you have come to the right place, you will get lots of good advice, and it is first hand.
Now you have been diagnosed, you can start on your journey to feeling better, it is a mater of what drugs suit you.
Hope things improve for you very soon.
Love
Barbara x

tillytop

Hey Camillo - Very impressed by the British Champion sporting acheivements! What is your sport?
Tilly x

camillo

tillytop wrote:

Hey Camillo - Very impressed by the British Champion sporting acheivements! What is your sport?
Tilly x

Thanks Tilly - I played Hurling - Irish National Sport - with big sticks and few rules...

So turning my attention to rambling and swimming will be tricky unless im allowed to hit someone
Hers a little education for you all...


http://www.youtube.com/watch?v=TmzivRetelE

marion1952

Hi Camllo

Very sorry to hear about your diagnosis.. I found the early months after diagnosis very scary and difficult (I didn't know about this forum then!)

Once the drugs kick in you WILL feel better, but it does take time.

MY RA came on completely out of the blue too - 2 years ago - I knew something was wrong with my body but didn't know what it was, and then over a period of about 8 days my body just seized up and I couldn't move. I know things will never be that bad again though. as I know 'the system' now and know when and how to get help from my rheumatologist and the rheumy nurse.

The thing that can be hurtful is that other people (employers/friends/family) just don't understand what it's like to have RA/PA/inflammatory arthritis. - that's why this forum is so helpful...

Please keep posting and let us know how you are getting on.

Marion

camillo

WHat a palava...

Prior to my diagnosis - my wife and I had a miscarriage - we really want another child...

Just after diagnosis and being put on Pred - we tried again and failed... twice...

I was advised to start Metho - but refused because i was advised mby the consultant that it was an unknown how it could affect the process
Then after a few weeks and REALLY feeling the RA - I chatted to him again and he said that it was my decision but the major concern with Metho would be with the women and not the man - and if i really wanted to go on Metho and keep trying...

Elated i told my wife and took my first course 11 months after the attacks started - about 6 months on Pred at 30mg a day...

Took one course and then my wife checked with her GP - who advise dthat we couldnt and shouldnt do this

So after 1 course of metho I stopped it - but also being sick of Pred i stopped that too - i didnt do what the doc advised and scale down my pred - i went from 30mg to Zero - i was sick of being sick with it... weight gain up 2 stone in a matter of months - teneage acne pains in my head moon face etc...

So i got sick from the reduction....I fkkking hate this illness...and the drugs....

Anyways - im really trrying hard to keep it together - the greatest thing i want right now is to see my wife contendedly pregnant - as she does too

So I am back to pred and all that goes with it...
Does anyone have any experience of metho and pregnancy/getting pregnant

I want to get better and i want to get of pred - i want to start my metho and feel potential benefits....

Currently im just getting sicker and the RA is becoming really evident...im struggling.

thanks

williamlargs

Hello mate

Sorry I can't help you with the pregnancy thing as I am 50 and am at the grandad stage.

I was diagnosed 7 years ago and had 3-4 years on sulphasalazine which controlled the ra and it eventually went into remission.

It flared up again early this year and I am now on MTX which seems to be doing the trick. I have managed to cut my diclofenic and paracetomol in half. I have given up the 5 asides but now swim 3 times a week and walk for at least an hour every day.

There are alot of poor people on here much worse than me I appreciate, but what I'm trying to get through is it ain't all doom and gloom for a lot of us so keep the chin up.

Try not to read into too much on the web as there is alot of shoite on there. This is the place to be

Good luck