I'm brand new to this site.

DaveBoynton

Hi all,

I was diagnosed with RA back in May 2009 and was finished from work on medical grounds and have found it a massive up hill battle to stay on ESA and just to cope with the pain all day everyday. I have it in my feet/ankles, knees, hands/wrists, lower back and now my right shoulder. I managed to get through the first year ... just with thought of being put on the next step meds but was destroyed when the specialist said that because my inflammation was under control i was fine and so i am still subjected to triple treatment of Methotrexate, Sulfasalazine and Hydroxychloroquine along with folic acid, ibuprofen, paracetamol, zomorph including numerous anti constipation stuff. I'm struggling with the mental side of having RA in so i having counselling at my GPs. I was refused DLA and so have to go to a tribunal on 1st March, the first was Dec '11 but was so drained n in to much pain i wrote to say i couldn't fight it anymore but i now i have to this time. I like everyone on here am sick of just how much we have to do to prove we are as bad as we say when others not suffer with anything except a back bone get all they want and more. Back in 2009 i was forgotten about by the hospital for 6 months taking (i didn't know at time) double dose of Hydroxychloroquine then when they realise it got dropped to its normal dosage followed by pneumonia and flu jabs .. couple weeks later i ended up in hospital on the thin edge of having liver and kidney failure, week and half in hospital on steroid and fluid drips followed by a biopsy on my thigh to find out why it happened (something they SAY they don't know). It's over a year later now and i still have a limp n part of my thigh is still dead to the world but all they keep saying is ... it'll get better.

The biggest thing for me is the fact the specialists just brush you off cos you tick their boxes and not because your in a situation where you can get back to doing normal things like hoovering up, washing up, changing your son's nappy etc. I was told right back when my RA was diagnosed by my specialist that i had to take the triple treatment before being moved onto biotic treatment, after he told me that once people got on this biotic stuff you wouldn't even think they had arthritis and that is what kept me going through the first year but then because my inflammation was controlled (as i ranted above) i couldn't go on it, i was furious and destroyed at the fact i had to continue with this agonising daily pain. I know there are people out there much worse than me but for me it is the worst.

I apologies for ranting and hope people don't think i'm moaning.

Thankyou,

Dave

Poppyg1rl

Hi Dave,
My hands are bad so sorry for short reply and naff spelling :oops:
Firstly Welcome, though sorry you've had to find us, I understand completely how you feel, it is a lot to get your head around isn't it? I do believe that for my first year of being diagnosed I was in denial, desperately trying to run my own business, run the home, look after my 3 lads and somehow remain the same upbeat, smiley, person I am even though I was in chronically ill with bad pain.
You do get through it Dave, it takes time, and you'll go through a whole range of emotions something akin to grief, we are mourning out old lives though aren't we? Thing is, as my wonderful friend DD here on the forum says "you can dip your toe in the pool of self pity for a little paddle, but you can't dive in and sink there" she's right, get your head in the right place and it will make fighting this disease so much easier for you. That's where we come in Dave, we know what it's like, we understand the pain, fatigue, frustrations of disappointing appts be it Rheumy or GP or physio the whole medley of healthcare proffesionals that we have to deal with now. Feel free to rant, have a moan or just a good laugh over on chit chat. You're among friends now Dave, take care and I look forward to seeing you posting soon

valval

hi welcome sorry you need to find us but you will find a lot of suport on here sorry you have to fight for what should be yours by right just when you do not need to but that is the way of the beast these days it was not much of a moan you should hear us when we get going.
stay strong ask all you need to some one will have answers val

DaveBoynton

Thanks guys, it could of been much longer lol, i don't like going on about it. I started to try learn Tai Chi as i've been told it's really good for you n helps with joint strength and Range of Movement. It's also something i've always wanted to do but real life didn't allow it, i also started going to a local spiritualist church which has helped me in a lot of ways. I was in a massive black hole of self pitty for so long and did something stupid but managed to claw myself out and into a position where i could get by .. mentally. It feels nice to be in a place where i fit in and can speak with like minded people.

Again thankyou,

Dave

flossy47

Hi Dave. You mention trying to learn tai chi. Was that a class? I've just finished an arthritis education programme at my local hospital and they used a dvd about tai chi for arthritis. If you want some info please feel free to pm me.

DaveBoynton

flossy47 wrote:

Hi Dave. You mention trying to learn tai chi. Was that a class? I've just finished an arthritis education programme at my local hospital and they used a dvd about tai chi for arthritis. If you want some info please feel free to pm me.

Flossy47, no it's a dvd i bought off ebay called Tai Chi for Arthritis by Dr Paul Lam. I've been looking through this site and have put an interest in a workshop hopefully coming to Bradford although i live near Pontefract so still fair way to go.

Thankyou for the offer of info,

Dave

Colin1

Hi Dave and welcome to the site it’s just a pity you had to find us. However you have come to the right place Dave plenty of help and support here and always someone to talk to. Many of us have travelled the same road and had our ups and downs with our disease and medical staff. I have RA and Pa and some other stuff. It is hard to cope at times all you can do is hang in, I know how much this disease can mess with your head, as Poppy says it’s a long journey with plenty of stages Poppy mentioned it being similar to grief and she is spot on with that, I think I went through similar stuff as you. You have so many stages you have to be so strong. Its hard to cope day to day let alone think about the future. I was so bitter and angry, it took away my job , my hobby and a big chunk of my life. I’m still suffering and its still a day to day battle but I cope better and I try to keep my mind occupied. Dave it’s not the end mate you need to see it as a new beginning a new challenge you have to find a way through this not just for you but your family. Those around you and closest to you will also be suffering those who love you will suffer just as much as you. Well Dave this is starting to look a bit like chapter one of a book. Anti TNF drugs yes they work for some. There is one thing you can ask for that helps. A DEPOT MEDRONE INJECTION you get it in the bum and it can take away the pain for weeks its like a holiday when you get it and it gives you so much relief. It gives you time to regroup and gather your thoughts. Depression is the bad bit once you are so far depressed its hard to get out. You have plenty of people here to talk to and you can talk to me anytime. Take care and I know its hard but keep your chin up. I also had the pneumonia just like you pluss heart attack but hey i'm sat here writing to you. Its my birthday in a week or two and thats something i never thought i would see a few years ago. I'm still in pain but come to terms with it i would say apart from pain my life is good and i'm surrounded by people i love. You never said how old you are or what part of the country your from.
Colin.

dreamdaisy

Hello, it's nice to meet you though I am sorry you have had to find us. I read your post and one sentence leapt out at me: your consultant said that those who are on biologics don't know they have arthritis. What an idiot. That may well be the case for you when you are given your chance but believe you me, that ain't generally the case, it involves as much trial and error as all the rest of the meds.

I think you are currently learning a major lesson about the drugs' treatment: if the bloods are lovely and the disease appears to be controlled then the medicos are generally happy, but us, the patients, are still left with pain and trouble. I am on my third biologic, combined with meth and sulphasalazine, but despite wondrous blood results by heck I know I have arthritis. There are one or two on here who are having a good result from humira etc, so good in fact that they rarely post as they are busy living life. To papraphrase G.B. Shaw: those who can do, those who can't usually post on here. Rest assured, DaveBoynton, you are now with a whole gaggle of arthritic friends who know and understand what you are going through, and we will do our best to help you through not only the bad, but also the good (when it deigns to appear. ) I wish you well. DD (who is rather grumpy as the France/Ireland game has just been cancelled due to a complete and utter LACK of foresight by dippy French officials.)

hileena111

Hi
Welcome to the forum....I've got OA so cant really help with meds etc
but can uderstand your pain. As for a rant......you come on and rant as much as you want to or just to talk.
There are lots of people here who know what they are talking about where RA is concerened so hope you find the forum helpful
Love
Hileena

DaveBoynton

Colin1 wrote:

Hi Dave and welcome to the site it’s just a pity you had to find us. However you have come to the right place Dave plenty of help and support here and always someone to talk to. Many of us have travelled the same road and had our ups and downs with our disease and medical staff. I have RA and Pa and some other stuff. It is hard to cope at times all you can do is hang in, I know how much this disease can mess with your head, as Poppy says it’s a long journey with plenty of stages Poppy mentioned it being similar to grief and she is spot on with that, I think I went through similar stuff as you. You have so many stages you have to be so strong. Its hard to cope day to day let alone think about the future. I was so bitter and angry, it took away my job , my hobby and a big chunk of my life. I’m still suffering and its still a day to day battle but I cope better and I try to keep my mind occupied. Dave it’s not the end mate you need to see it as a new beginning a new challenge you have to find a way through this not just for you but your family. Those around you and closest to you will also be suffering those who love you will suffer just as much as you. Well Dave this is starting to look a bit like chapter one of a book. Anti TNF drugs yes they work for some. There is one thing you can ask for that helps. A DEPOT MEDRONE INJECTION you get it in the bum and it can take away the pain for weeks its like a holiday when you get it and it gives you so much relief. It gives you time to regroup and gather your thoughts. Depression is the bad bit once you are so far depressed its hard to get out. You have plenty of people here to talk to and you can talk to me anytime. Take care and I know its hard but keep your chin up. I also had the pneumonia just like you pluss heart attack but hey i'm sat here writing to you. Its my birthday in a week or two and thats something i never thought i would see a few years ago. I'm still in pain but come to terms with it i would say apart from pain my life is good and i'm surrounded by people i love. You never said how old you are or what part of the country your from.
Colin.

Hi Colin,

Thankyou for the ... lengthy reply lol. I struggle with the physical stuff but which was the biggest thing that hit me. I was 35, 38 this May, when it hit me, after a life of training at the gym etc to then become unable to hoover up was destroying but i'm kind of coming round to the fact that this is how it is now but the mental side still hits home and have been put on anti depressants. I started a day course at my local college to get my gcse maths and english to try improve my chances of .. eventually getting into an inside job on computers. Just done my first exams last Wednesday, hoping that they will come back as a pass and give a positive boost.

It's nice to be around people going through similier situations. I you ,and everyone on this site, go from strength to strength with each hill climbed. I finally found where I needed to go last year when i started going to a spiritualist church in Castleford near where i live and that has helped me in a massive way.

Well i gonna close it there for the mo (wrists are killing) as i wanna reply to others too.

I will visit this forum and site as one of my regulars.

All the best,

Dave

DaveBoynton

Hi,

DD, yeah after my last checkup i kind of got the idea they were just ticking boxes when telling me all the different treatments etc. Like i said to colin above, it's really nice being with people who understand and are themselves going through similier if not same issues.

I see from what people have written here and other posts that it's going to be a long battle but with church and now this forum and the people on it i feel i am slowly finding the building blocks to fight and find much more positives in life.

I hope that i will be able to contribute to others like you all have to me in the last 24 hours.

Thank you and all,

Dave

Colin1

Hi Dave thaks for the reply.
I was 37 years old when i was first diagnosed but got no treatment, if you are caught and treated early it can help with the futue. I'm in a RA family must be in the genes My daughter got lupus and Fibro in her late 20s and my sister got RA in her early 20s my dad is bad with with RA to.
I do hope you can stay around mate it will good to see how you go on in the future. Take care and keep up the positive vibes.
Colin

frogmorton

Dear Dave

lovely to meet you and l am so glad you have. the shared experiences on here are a lifeline to a lot of us.

No need to appologise ever for ranting...we all do it and if there is anywhere where we can it's here.

Glad you have found support in your Church and are trying the Ti Chi and of COURSE that you found us.

Love

Toni xxx

bubbadog

Hi Dave, wanted to welcome you to the forum, You have really been dragged through it haven't you, I myself have also been through some of the the things you have been through. And finding this site was a life changing thing, I truely mean that! I was in a low place I was always down (not depressed) just felt low, and reading the posts and joining the site brought me back to being me again! My OH saw a massive change. So I hope it helps you as much as it helped me.

DaveBoynton

Colin1 wrote:

Hi Dave thaks for the reply.
I was 37 years old when i was first diagnosed but got no treatment, if you are caught and treated early it can help with the futue. I'm in a RA family must be in the genes My daughter got lupus and Fibro in her late 20s and my sister got RA in her early 20s my dad is bad with with RA to.
I do hope you can stay around mate it will good to see how you go on in the future. Take care and keep up the positive vibes.
Colin

Hi Colin,

Firstly your family seems to be put through the mill alot. My mum and sister suffer with OA and my cousin also has RA (along with other related probs) and thier just the ones i know about as our family is wide spread and we don't hear much from them. The strange thing is all the areas that i have RA have played up singularly through my life, when i was a teeneager i suffered with my knees but it went away and has plagued me on and off till diagnosed and same with my hands and wrists. I guess they were just getting worse and then all flared up in 2010 resulting in me being diagnosed. I will be here for ever although i don't get on here that much, but when i'm on this is where i come.

Toni thankyou for the message, I hate ranting but sometimes (learnt recently) it helps to have somewhere to rant and i guess this is as good a place as any with everyone being in a similier position. I think it will help massively being part of this site and the people on it as it is a source of information and communication with other people, i love it.

Bubbadog i'm glad you have been helped by this site in a big way and i hope with time i will be much better, mentally stronger, to fight and cope with my RA. It's been a boost to see all the really nice replies to my post. I know that i'm in a really nice place surrounded by good people.

That's me done typing (wrists agony).

Dave

tkachev

Hi Dave and a big welcome from me.

pain all day and everyday doesn't sound like the R.A is under control at all. Having been in this position (pain all day and everyday, and nights too!), despite being on the triple therapy of sulfa, MTX and hydroxychloroquinine I was finally offered Humira( to join with the triple therapy as the others were deemed not to be working sufficiently).

It has worked very well for me and I can tell you I have noticed the difference but for others it does not work as well. It made me wonder why I had had to put up with 9 years of constant pain before being offered this combination but I am pleased I got there in the end.

Your specialist was correct to try you on triple therapy first. But it seems he is now under the impression that the R.A is controlled and there is no need for biotics. I think you may need to impress on him how much pain you are still in.

Good luck with the appeal.

Elizabeth

dreamdaisy

Ah, unlike tkachev I'm in pain all day every despite the PsA apparently being controlled by the meth, sulph and humira (but of course they do sweet FA for the OA). At the moment it is at totally unreasonable levels and as the psoriasis bit is appearing I must make the humungous effort to trog off to the hospital and get my bloods done (which will no doubt show that everything is hunky-dory as they always bloody do! :roll: )

The docs do go by blood tests as these biologic drugs etc are very expensive: estimates of my costs have varied from £10-£15 thousand per year (depending on who I'm talking to) so being put forward for one can take time. I hope you get the chance without having to suffer too much more than you currently are: it's not on, it's not right or fair but, in these generally straightened times it's what is happening. Stay with us, DB, we're here to help and we will, as much as we can. I wish you well. DD

DaveBoynton

tkachev wrote:

Hi Dave and a big welcome from me.

pain all day and everyday doesn't sound like the R.A is under control at all. Having been in this position (pain all day and everyday, and nights too!), despite being on the triple therapy of sulfa, MTX and hydroxychloroquinine I was finally offered Humira( to join with the triple therapy as the others were deemed not to be working sufficiently).

It has worked very well for me and I can tell you I have noticed the difference but for others it does not work as well. It made me wonder why I had had to put up with 9 years of constant pain before being offered this combination but I am pleased I got there in the end.

Your specialist was correct to try you on triple therapy first. But it seems he is now under the impression that the R.A is controlled and there is no need for biotics. I think you may need to impress on him how much pain you are still in.

Good luck with the appeal.

Elizabeth

Hi Elizabeth,

Yeah i am in constant pain, nights are just as bad too. I either don't get to sleep till half 5 ish n then up at 8 ish or i get to sleep but then i wake in middle of night and can't get back to sleep with the pain.

I am hopeing that when i see my specialist in 4 months ish that i can get accross just how much pain i am in. i know that if i could get the pain under control i would be able to do much more but it's that which is stopping doing even the smallest of things, making a drink, opening a bottle of milk. I alwqays wish people who don't understand how it feels and just tick boxes could have it for one day just so they would understand because they would start ticking many more boxes if they experianced it.

I'm so glad the Humira is working well for you. It's annoying just how long we have to wait and suffer till they try something else.

Dave

dreamdaisy

Keep a diary of it all, DB, pain levels, tiredness levels, the things you can no longer do (or do as easily), where things hurt, how they hurt etc as this will furnish the rhuematologist with good information about how YOU are being affected (never mind the damn test results) and will help pleasd your case for you. DD

DaveBoynton

dreamdaisy wrote:

Ah, unlike tkachev I'm in pain all day every despite the PsA apparently being controlled by the meth, sulph and humira (but of course they do sweet FA for the OA). At the moment it is at totally unreasonable levels and as the psoriasis bit is appearing I must make the humungous effort to trog off to the hospital and get my bloods done (which will no doubt show that everything is hunky-dory as they always bloody do! :roll: )

The docs do go by blood tests as these biologic drugs etc are very expensive: estimates of my costs have varied from £10-£15 thousand per year (depending on who I'm talking to) so being put forward for one can take time. I hope you get the chance without having to suffer too much more than you currently are: it's not on, it's not right or fair but, in these generally straightened times it's what is happening. Stay with us, DB, we're here to help and we will, as much as we can. I wish you well. DD

Hi DD,

I'm so sorry to hear that. I have to trog out only once a month for my bloods but even that feels like a tour of duty sometimes. Yeah it really annoyed me when i last went to my specialist and he looked at my blood results then said that they were ok, i them told hime about the pain i was in all the time and struggled with even changing my 2 year olds nappy and he just went on using big medical terms and that he would see me in 6 mths for a check up. It was then i realised things weren't going to be as straight forward as he first told me.

Yeah that's where we have a price on our heads, looked at as a number and not a person (how i feel about it).

Yeah i started a pain diary a couple weeks ago and will add the other stuff you mentioned, thankyou so much.

You have no worries now i have found comfort in the form of this site and all of you lovely people i will be staying.

Dave

barbara12

Hi Dave
And a very warm welcome to the forum, only I ma sorry you had to find us, the best thing about being on here is that you can talk to people that understand some of what you are going through, and that will help if only a little.
Sorry I cant help with your meds, I have OA in multiple joints, and like you I was very fit, and went to the gym at least 3 times a week, so I do understand how frustrating it is not to be able to do these things, but there is one thing I have learned off here, and that is you have to stand your ground and get over how bad the pain is, I ended up changing GPs,
So dont forget when you go back we are all behind you, what I do know is that you should not be in pain day and night.
I really do wish you well with it all, and please let us know how you are getting on.

tkachev

dreamdaisy wrote:

Ah, unlike tkachev I'm in pain all day every despite the PsA apparently being controlled by the meth, sulph and humira (but of course they do sweet FA for the OA).

DD

I'm still in pain every day-its just mostly OA and my hip now . The R.A inflamation and pain has vastly improved and most of us know how awful that can be.

E x

dreamdaisy

Ah, my apologies tkachev, I did not realise that you too have OA. :oops: I am very sorry. :oops: DD