first rheumy appointment this morning

lucy145

thank you lynnmarie and tilly, you have given me some great adivise there,its good to talk to others who are going through the same and have been or are on the same meds, not that i wish this disease on anyone.

ive now got the tablets but cant take them until i go and have blood tests ,i can go and have them anytime i want to but i cant cope with it today cos am in so much pain with my feet and hips, ive been to work and am exhausted now so i will go tomorrow

that makes sense about the xrays cos it is early days for me,ive been in constant pain for just over 3 months now, how do i know when im in a flare cos the pain has never gone yet,some days like today its a lot worse then others but always there all the time, and will i still be in pain when im not in a flare? sorry about the questions but its still so much to take in

its really sinking in now that i have got arthritis,and i feel annoyed with my body for doing this to me,i feel hurt to that not all my family seem bothered at all,my daughter hasnt even rang me to see how i am,maybe im just feeling sorry for myself

hope you are all having a ok day,the sun is out here which makes things seem a bit brighter x x

frogmorton

Hi Luce

it is so so hard to accept isn't it?

talking on here is the best thing there is for getting your head around it - honestly. It is so like greiving - you have to let go of what you thought life was going to be and adapt.

My first flare was huge too - the sooner you can try the sulfa the better I am sure.

But if you are not well enough to have your bloods today that is fine too.

You take care and keep talking to us

I promise you there IS life after arthritis - maybe not the same, but it's ok

Love

Toni xx

lucy145

thank you toni, i just feel like crying today,i know i expected to be dianosed with arthritis but being told i got it is so final, i dont know what i would do if i couldnt come on here and really say how im feeling,i dont expect my family to keep talking about it but theyre not talking about it at all but i feel bad for thinking like that cos i know its hard for them and people who havent got it to understand, at least work are being good about it all.

i will defintely go for the blood tests tomorrow,hopefully i will feel better then,maybe being nervous and doing a lot at the weekend has made the pain worse

how long have you had arthritis and what type have you got? did it take you a long time to come to terms with it? x x

frogmorton

HI Lucy

Honestly feeling like crying is the very first step and if you need to do it you should read these posts an bawl your head off!! When I first came on here I bawled and bawled and bawled - these people were the same as me!!

I didnt want to be the same as them though :oops: I wanted everything to be the same as before when things were bad but I didnt know. I thought the pains and problems were all part of my 'back' which has been a problem most of my life. My back made my ankled ache because I walked funny.

I have been on hydroxy now for 2 and half years and am about to add another DMARD any day now too.

Over time reading, listening, talking on here I came to realise that being one of US is absolutely fine and to be proud to be one of these people who cope every day with life and pain and difficulties that me before didnt even think about. I am certain I am a better person for knowing this rabble and I wouldnt know them if it weren't for having this would I?

Thing is you have to be kind to you Luce - take the time it takes (I know my family probably didnt not want to listen as much as I wanted to talk and worry and cry and fret and panic), to accept it - WE will help if you want us to.

I promise there IS life after diagnosis - not the same I agree - you will likley take pills for the rest of your life and NEVER again take your health for granted - but it is OK .Pretty well everything you had planned for yourself can still happen.

Everything you feel - we have all felt.

if I could hold your hand while you take the first pill I would.

Love and HUGE hugs

Toni xx

lucy145

hi toni,

thank you for your last msg,and thank you for being here your right if it wasnt for arthritis none of us would have each other on here, i wouldnt be speaking to such lovely people who are suffering but still there for each other whatever

i told my mum about being nervous about the tablets and she just told me not to take them then i went on to say the reasons i have to and she said that doesnt matter,maybe she just doesnt understand but i have got to the stage where i dont want to mention any of it to my family because it just makes me feel worse.

i will pretend you are here with me when i take the first tablet tomorrow and know that will help me feel better and im going to think what i can do not what i cant,im a fighter anyway so know i can do that,when i get around all this then things will get better.

lucy x x

woodbon

Hi, Its nice to hear when everything goes well, it makes everyone feel better. Take care, love Sue (Sorry, I seem to have got muddled up somewhere. I appologise. :oops:) love Sue

dreamdaisy

Hi lucy145, don't fret. Sulph has worked ok for most of us, I regard it as the most benign drug I take as I don't notice it at all now. Side effects are not guaranteed, you may have none and it might work well for you. Don't fret. DD

wibberley

Lucy, it is perfectly normal to feel nervous about taking new meds - not helped by the fact doc's bombard you with all the worst case scenarios, to cover them against being sued!

You will be very closely monitored with regular blood tests and if something does show up on the blood tests, they will act on it immediately.

Hopefully, once you get started, you will get some relief from the pain which can only be a good thing.

Lois x

lucy145

hi

i will try not to frett anymore and any relief from the pain will be a good thing so i gotta think the tablets are my friends and the arthritis my enemy, which it is,i think i worry about working if im feeling sick or got headaches but will worry about that if it happens

i only work part time at the moment but need to start thinking about working full time but im really struggling with the hours i do now let alone anymore but as i lose tax credits next year i wont have any choice,will it be hard to get a job when i tell them i got arthritis and would i be capable of doing it x

frogmorton

That's it Lucy

just take it - I will be there with you - in fact all of us will.

You have to take it future damage or prevention of depends on it.

Just make sure you let us know when you have done the biz

You aRE strong enough - trust me.

Love

Toni xx

cebeem

Hi Lucy

I have been on sulpha for many a year and when I was in remission once they took me off it completely.
Hence when I was next flaring I had to start the whole gradual getting up to dose process again.

They told me it takes around 3 months to have full effect ..the most noticeable for me was the relief from overwhelming tiredness (although I still get wipe out times).

Now adays they don't withdraw it if you have remission...but keep you on a maintenance dose, which is supposed to help keep it at bay more.

Getting used to it gave me all the above symptoms but they do fade.
They don't seem to do much for my pain but Im sure they have kept it from developing rapidly (diagnosed around 25 years ago) .

Also I don't get the blood tests every 3 months anymore ..as they said that if it has been taken for more than 2 years with no adverse effects I'll be ok with it (don't know if anyone else has had that advice).

Keep your chin up Lucy ..everyone is here to help..and they really do!

There is no short cut to experience...LOTS of that here too!
Where would you get the benefit of such experience all in one place?

wibberley

Hi Cebeem,

What is the maintenance dose?

Lois x

Wonkylegs

HI Lucy

well done on getting the sulpha and finding so many people on here to advise you

I took SUlpha fo ages - up to 6 a day at one time - and yes, the orange wee is the most noticeable, but I also found myself very thirsty whilst on that particular med, and used to carry water with me at all times. THis really helped me, and being well hydrated I believe helped me avoide the headache problems as I never had them myself.

we are all different though, so as someone (I think it was DD) said ... know the side effects and then forget about them until anything worrying happens, that way you don't waste valuable energy worrying about nothing.

wishing you a speedy & positive response

WOnky

cebeem

wibberley wrote:

Hi Cebeem,

What is the maintenance dose?

Lois x

Hi Lois I'm sure it was 1 500mg twice per day.

frogmorton

Morning Lucy

Hoping you are well enough to have your bloods done today and you can start the meds later too.


Thinking of you

Love

Toni xx

lucy145

hi everyone, hope you all are having a good day.

im all set to go for my blood tests now and am leaving in a minute,then i will come home and take the sulpha feet are a bit better today so will manage to walk to the department i need

thank you again for all your advice and support,i dont know what i would do without you all now, still heard nothing from my daughter but am accepting that now cos i dont have a choice,im thinking of all the people who are there for me and its all of you

speak later x x

frogmorton

Hi Lucy

Are you back yet?

Your daughter will get in touch when she is ready. - how old is she?

Are you ready to take it then?

Thinking of you

Toni xx

tillytop

Hi Lucy
How are you doing today? Have you felt well enough to go for the blood tests?

I think Toni’s answer is brilliant and really “says it all” (but “rabble” Toni – really?!!! ). For me the hardest thing to get my head round was the fact that, with arthritis, there are no clear answers. Like you I had so many questions and just wanted someone to say “oh yes, take these pills and it will all go away” and it is hard to accept that that’s not going to happen. But, now you have a diagnosis you have taken a huge step towards getting things more under control. You ask about whether you will still be in pain between flares – well, unfortunately that’s another of those questions without a definite answer. The aim of the DMARDs are to suppress the inflammation, which is what causes the pain in early arthritis and to prevent the inflammation damaging your joints. So hopefully, if the inflammation can be controlled successfuly, the pain will decrease and life will get much easier for you. These drugs can take a while to work though, so you do have to be patient.

Like Toni says sharing with others who understand what you are going through can be hugely helpful – and hopefully, once you begin to come to terms with things, talking to your family about it will be easier. Please do just ask away – anything you can think of and we will do everything we can to help and support you. It’s fine too, just to come on to say you need cheering up – we are good at that here too! I only wish that the forum had been around when I was first diagnosed.

Thinking of you – and please do keep posting so we know how you are doing.

Lots love Tilly xxx

lucy145

hi, thank you tilly, i dont know how i would manage without this forum,its the only place i can express how im feeling,i told my friend i have been diagnosed with arthritis and she said "oh well at least you havent got cancer" that is very true but not the answer i was looking for then she went on to tell me she has a cold and her nose has gone all red,i just smiled

well had bloods done,and have taken the first tablet and im still here only joking,now ive taken one i will be ok, its that first one i was scared of i think,will get blood results in about a week to see about rheumatoid arthritis

i cant see your msgs but carrying a bottle of water with me is a very good idea,im always thirsty anyway at the best of times and if it helps avoid headaches too that will be good.

hope everyone is ok and had a good day and thank you all again,you are all lovely x x

dreamdaisy

It is not easy, accepting that you have to take these meds. Fingers crossed they work for you. I sincerely hope so. So, how did it begin? It's been so long! One a day for a week, then one night and morning for a week, then two in the morning, one at night etc etc etc - is that right? DD

lucy145

morning DD

how are you today? your right start on one sulpha a day for one week then two for the second week then three then upto four,i was tempted to wash it down with a nice cold glass of wine yesterday lol but thought better not.

am waiting for the anti ccp test results now to see if i have RA but i do feel lucky in that i got referred and am on treatment so quick,its been just over three months and i know some people have to wait so long for a diagnosis.

Toni, sorry i didnt answer your question yesterday,my daughter is 21 and have still heard nothing from her.

lucy x x

dreamdaisy

Why not wash it down with wine - alcohol is permitted! How do you think I do my evening three? No, seriously, you are right: everyone reacts differently to these meds, which makes them a right pain in the Harris, so go easy, ensure you have your regular blood tests and perhaps keep a note of your figures for your own info. You will be fine. DD

lucy145

hi DD

how are you today? i will certainly be washing the evening tablet down with a glass of wine next week,with a cigarette in the other hand i dont drink much but im glad its ok to still be able too,arthritis is taking enough away from me already without alcohol too

is it ok to ring the rheumy nurse later in the week for my blood results do you think, she gave me her card with her number on and said i could ring if i had any questions or anything but dont want to be a pain when i know how busy they are,but i would like to know the result from the anti ccp test and dont want to have to wait 8wks for it,lucy x x

lucy145

oh was also meant to say she gave me a blood work book to record my blood results in, the white blood count and liver function,i dont know what the other columms are for tho :? x

tillytop

Hi Lucy

How's it going after the first sulpha tablet?

Your comment about your friend's response when you told her you had arthritis is fairly typical, but frustrating none the less. I had to have my rings cut off recently because my fingers swelled significantly and when I told my friend, who I thought understood fairly well about my RA, she said "oh, so what made your hands swell then?" Honestly. I give up :roll: It's a very hard thing for people to understand I'm afraid which does make it more difficult when you are trying to get your head round it yourself. But you are not on your own there - we've all been there, which is why it's good to be able to share with peeps who do understand what it's like.

Re the blood tests - yes, I would phone to ask for the results - you could just ask them to post a printout to you so you have them and can record them on your record card. I like to keep an eye on my blood test results so I know what it going on and I usually have to chase for them. I guess you will have regular blood tests at your GP now you are taking Sulpha so you might find it helpful at each blood test appt, to ask for a copy of your last results. That way you can keep a track and always have the most recent ones available for consultant visits.

I think that the other blood test results on your card will probably be ESR and CRP, which show the levels of inflammation, full blood count, kidney and liver function and all of these should be recorded on your card so that there is a complete record.

Good luck with the sulpha and do keep us posted on your progress.

Thinking of you.

Love Tilly x