Hello everyone

Milly8

Hello everyone I am new to this board but not new I am afford to arthritics.i have had pa for 5 and half years now.took two and a half years to get to see a rheumy thanks to a very lovely new doctor at our surgery .took rheumy doctor 6 months before telling I had inflammatory arthritics and other year before told me it was pa( pa before psoriasis )
Started off on sulfalazine and then mtx ( my wonder drug for a while)
Was great for one and a half years but slowly it stopped working.went to rheumy last week expecting him to up my mtx but was told time for anti tnf's as pa was quite active.i came out of there and now my heads in the shed so to speak.i think I have always been in Denial that I was as Ill as I am .i just carry on and adapted so needed but I can't do that for ever.i know I need anti tnf's but I have been living in a bubble that I would be fine for ever on mtx and now that's bubble burst and I am finding it hard.i spend two and a half years with doctors telling me there's nothing wrong with me and it's stuck in my head.even after my doctor referred me to the rheumy I went to my surgery to get a sick paper only to be told I don't why she is sending you to see an rheumy as there's nothing wrong with you.since last week I can't stop thinking about everything and this dam pa is ruling my life again.i am worried that I will not pass my second set of tests in three weeks,worried that I am going to pass and where that will take me.omg I am so fed up right now. I am so scared about it and just need my head to stop spinning.sorry for rattling on I think I just needed to write it down.

tillytop

Hello Milly8 and welcome to the forum.

I am so sorry things are so difficult for you at the moment but you have come to the right place for support because, even if our situations are slightly different, we do understand.

I am sorry I can't reply properly now - just about to eat - but will do a proper reply tomorrow.

But just wanted to say "hello" and that I am thinking of you.

Tillyxxx

earthspirit

hil milly
im only a new person on here too and have RA
i cant give you much advice on your condition but the people here are right behind you when you fall. many have been srtuggling away on the arthritic path for many years and have walked the path of the multimeds

for my little bit of input, i have refused meth and would rather be taking the sort of drugs you are being offered - i think perhaps they are less damaging to the body and also more effective though very expensive treatment.

stay calm - and i hope you arent actually feeling too ill or in pain at the moment but i understand the dilema you find yourself in. i have had this RA a lifetime and never diagnosed till 18months ago and its not just come gently upon me this time, but like a whilrwind of pain and disability.

having to take medication that makes me feel so ill is so not how i like to treat illness. im a homeopath and believe in the natural way but now im in the postition of not really having much choice to save my health

i dont do hugs but im sure the advice and support in here will make you feel much better about your future treatment x

valval

hi dd the one who knows a lor about pa but as it weekend not sure when she will pop in, i have got as far as inflimation a yep still waiting a name for the beast.
but as for you wishing hoping being scared well i think that totally normal you want the best treatment but do not want to be bad enough to need it good luck got a feeling you will pass and have fingers crossed it will help . we do great pocket duties where we hope in the pocket of who ever has app and needs suport makes you feel less alone so call on us if you need suport val

dreamdaisy

Hello Milly8, I am so glad you have found us as we do know what this is like and yes, it can be scary. I was undiagnosed for a number of years, I started in '97, I was reluctantly taken under rheumatology's wing in 2002 (their reluctance, not mine!) and began with sulphasalazine. You name it I've tried it and am currently doing relatively OK on a mix of injected methotrexate, injected humira (an anti TNF) plus the sulph. I am lucky in that my skin trouble is not anywhere near as bad as it could be but the joint damage is not good and has led to OA in both knees and ankles.

I never had that much success with meth alone, you have and it must be very disappointing that that has come to an end but one of the things I have learned over the past few years is that whatever one takes (and works) you can bet your bottom dollar it won't last for ever, probably because nothing does. All we can do is try another combination of meds, then another and maybe another. Everyone is different in what works and what doesn't and one person's 'miracle' is another's disaster which makes this whole malarkey so tricky. I never thought twice about starting a new med and I never will. The anti TNFs can work - and those for whom they do don't post so much on here as they are busy getting on with life - and who knows, you too could be in their number and I sincerely hope you are. I wish you well. DD

dreamdaisy

Hello again, how are you feeling today? DD

fowls48

Hi Milly

Just saying hello as i cannot help you , know how your feeling though its hard to keep a straight head when you do not know whats going on , keep pushing the doctors untill you are satisfied with whats going on .


karen xx

Milly8

Thank you for your lovely replies and dd I still don't know I how am feeling today .i thought maybe I would feel better after the weekend .i just feel out of control and a don't like it.i have always been the positive one in our family and nothing knocks me down for long.so,it's hard to open up to them about how I feel.i keep thinking maybe I'm making a fuss about nothing and I am not as bad I think.because once the pills kick in and the swelling go's I think I'm fine and I am wasting the doctors time but i guess bloods tests dont lie.been worse than I feel now and I know the mtx helped and if I don't have the anti tnf's I will go back there again.dragging myself out of bed and using my elbow to open the door as my hands would not work.taking pills and going back to bed until they kicked in.going to see him last week has turned my world upside down.i just keep thinking will I pass ,will I not pass and where I go from there and it's all I can think about.I have just read all that back omg I'm not happy am I .i sure time will help so thank you all for listening to me moaning.

dreamdaisy

Of course you're not happy, I suspect that very few of us on here are happy about the fact we have arthritis - I know I'm not. There are days when it does all get too much and trying to keep positive and up-beat is not easy - I'm having one of those times at the moment but I know it will pass 'cos all things do. I'm tired of the pain, the meds, the lack of energy, my inability to do what I used but hey, there's no point in moaning too much as that won't change a thing. I have arthritis and this is what it does. That is where the forum is such a help because people on here know exactly how hard it can all be, there is nothing like talking to the initiated. My rheumatologist is very kind and helpful but not arthritic. DD

Colin1

Hello Milly
Yes the whole thing is daunting but you must remember your mind plays a great part in your illness. I have RA PA FM at times i hardly know what to say or do. One thing is for sure i cant fix it they cant fix it so i have to try live with it the best way i can. Constant pain is a terrible thing to have to deal with and at times life just is not fare but alas its the hand we are dealt with. I think many of us are like you and it takes so long to get a propper diagnosis in my case years. if only they could spot it sooner hey. Some GPs just havent got a clue others just not very sympathetic. I done the methotrexate and like you it lasted about 2 years then stopped working. to date i have gone through all the anti tnfs and i'm now on rituximab and feeling better for it. Its being withdrawn at the moment because i've had a heart attack but i see my rheumy today so rather hope i can get back on it again. You will find a medication that helps you and once you return from the shed you will start to feel better. I used to think if someone tells me they know how it feels or one more person says keep your chin up ill kill them LOL. my biggest worry at the moment is exersise following the heart attack and the rituximab worn off so that i can hardly move but somewhere i will find the answer you just keep trying. You take care and dare i say keep you chin up. My wife used to say to me there is always someone worse off but when your down in the dumps and feeling so ill there cant be anyone worse off than yourself. catch you soon
Colin

bubbadog

Welcome to AC forum Milly! I can't assist you with your Arther as it's not the type I have. But just wanted to say Hi welcome and you've made a wise choice joining us.

tillytop

Hello again Milly.

I am so sorry you are feeling in such turmoil about all this and I can completely understand why you feel it has turned your world upside down just when you thought you knew what was what.

You say you are worried about whether you will pass the second set of tests and qualify for anti-tnfs but just to say that, if you don't there are lots of other non-methotrexate drug options for you to try.

As for the anti-tnfs if you do qualify - well they could be a really positive step for you. I know they don't work for everybody but when I started my first anti-tnf it was like a miracle and for 5 years after that I pretty much didn't know I had RA at all! And although the other biologics have not worked quite so well for me, I am still better, joint wise, than I could ever have imagined before these drugs came along.

I can see why it is all so confusing for you at the moment Milly but hopefully, once you know the outcome of your next set of tests, and know where you go from here, you will start to be able to come to terms with it.

Thinking of you.

Tillyxxx

Milly8

Thank you everyone again for your replies.as you said it the uncertainty of it all.i have been there before and picked myself so will do it again.going to see gp next week about other things so will talk to her how I'm feeling .she is a lovely doctor and always ready to listen as are you all so thank you again.sorry to hear about how you are feeling but guess we're all in the same boat at different times.so I think it's time to pick myself up.on a good note been to hospital today and got some new insoles and hoping they will help my feet .their are very strange at the moment.hopefully the will help and i can go walking for longer.i love walking it blows the cob webs from my brain.i sit on my rock listen to some music and have a think.thats just what I need at moment.

tjt6768

just wanted to say hi. Hope you enjoy your walk, the rick isn't too cold on ya bum and that the cobwebs are blown far far away

dreamdaisy

Any arthritis leads to a roller-coaster ride, admittedly there seems to be more swooping lows than highs, and the highs take a lot of achieving but they do come along every now and again. I hope the insoles help with the walking once you've become used to them. DD

dreamdaisy

Hello, did you manage your walk? I am trying to gear myself up to go and get a paper! I hope you are feeling a little better about things: the anti TNFs are a big step but they can work and work well: you won't know until you try. The monitoring that takes place when one is on them is important and must be done conscientiously but, if they help, it's worth it. The PsA is not going to go away, it isn't going to stop, it isn't going to vanish so it needs to be confronted and dealt with. You know how bad it can be so I hope you can take the chance to make it less so. DD

Milly8

Good morning.thanks for the reply.i went for a walk to the local shops and back .we have a big mountain behind our house which I love to walk up when well.just looked at it yesterday and thought no I can't do at the moment .the veiw from the top is stunning .i can't move when get home but it's worth it.as for going on anti tnf my head is still all over the place not about taking them now but about passing the second set of tests.i keep thinking will my swelling be visible on the day.its driving me mad .a friend of mine told me to stop taking my mtx .not a very good idea but I wonder if other people have done that not I want to.just hope my test in on one of my bad days.just got a letter with a date this morning and I have to wait another 5 weeks before the test .that will be 6 weeks after the first.so longer to wait.i will be a nervous wreck by then.thanks again for the rely.
                                    Milly

dreamdaisy

Stopping the meth is not a good idea, what are your blood tests showing for the ESR abd CRP? They can still be raised although swelling is not visible. Mine are the other way around, both measures are minimal but I have fat knees at the moment, probably thanks to the OA and the walk to get the paper!

It's been years since I had my first anti TNF and I honestly cannot remember the processes I underwent to get it. It was infliximab, the one that worked so well for tilly (and some others too). I think I had that in 2004, I had to try so many meds before I was given the option as the thinking at that time was that you had to 'fail' with meth, sulph, leflunomide etc. I thoroughly enjoyed having that done, I sat in a very comfy recliner for a couple of hours, sipping tea, nibbling biscuits and chatting to other patients - it was fun! If you are still able to walk without aids then that is a good thing and the anti TNF should help to prevent any joint erosion/damage which can only be a good thing. I had mine far too late and am paying the price but c'est la vie. The thinking on these things has changed and now you can be offered them within six months to a year, and I am sure that can make a good difference, especially if an early diagnosis is involved. DD

tjt6768

hi Milly. Glad that you had your walk. Living near the mountain sounds wonderful... Not that I could make it up there lol.. I love in a ground floor flat cos I struggle with a few steps
Best of luck with the test

Milly8

Thanks .doctor said my crp and esr are raised forgot to ask numbers.dont get them done at the doctors only when I go to the hospital every four months.sadly I am having to use a crutch at the moment.I know my thumb is swollen and that never go down much .i can't even bend it anymore.my one toe is quite bent as well.my ankle and foot are always swollen but only hurts when walked on.Lower back is bad my shoulders and my hands swell up by the knuckles and and go down just as quick.i am not planning on coming off my meds I am bad enough now and I can't imagine how I would feel if I did that( well I can image as I know so no going there).The test says you have to have three swollen joints and three tendor joints ( no lee way there) and have tried dmards and there are not working and have raised crp and esr levels.I am just going to get my head around what will be will be.i the worst thing is I am my husbands carer( that's a joke at the moment) he registed blind .i knew 26 years ago when i met him he could loss more sight as years went by but i would not change a thing hes a lovely lovely man.I have to stay as well as I can for me and him.
Milly

tillytop

Hello Milly

First just wanted to say how lovely it is that you and your husband are so happy together and continue to be so despite both of your difficulties. I too am very happily married and know how lucky I am!

Just going back to your second set of tests - I completely understand why you are worried but if what they are doing is a standard "Disease Activity -DAS -score, I know from experience that tender joints "count" in the assessment, even if they are not swollen. My joints rarely swell (or at least rarely swell very much) even when my inflammation levels are high. My understanding of the DAS assessment is that it is meant to be a way to give an objective assessment, taking various factors into account, giving consideration to the number of swollen and/or tender joints and the CRP/ESR levels, as well as your own assessment about how you are doing. I have had a high DAS score sometimes, even when I have thought I was doing better, because they take all those things into consideration. The National Rheumatoid Arthritis Society (NRAS) has a good information leaflet on their website explaining how the DAS scores are calculated so you might find it useful to have a look at that. Sorry if I am telling you things you know already.

As for stopping the meth to try to influence the results - please don't do that because that is not going to help you in the long run (and will probably upset your consultant hugely in the process :shock:).

Glad you enjoyed your walk - I too love walking in the fresh air, even on days when I can't walk far. Nothing beats it does it?

Thinking of you.

Tillyxxx

Milly8

Thank you every one again and no I am not going to stop taking my meds it just a friend mentioned it and just wandered if other people had done and how unfair it would be on nhs resources.the first of tests were without warning so if I passed the first set when I have been taken my meds then it shows I need further help along the way and I guess if not then its a good thing as taking anti tnf's is a big step( I think I am getting my head around this at last must be the talking to someone and not bottling it up).I guess we just have to take things as they come along and just Carry on best we can.

Heather65

Hi milly,
and welcome, im quite new on here and found the forum very welcoming and helpfull,there are lots of people on here who understand what you are going through,keep posting and you will get advice and tips ,
Heather 65

julie47

Hi Milly

I just wanted to drop in and welcome you to the forum

They are a great bunch of people and have been a great help to me on numerous occasions

Take care
Love Juliepf x

frogmorton

Hi Milly

Lovely to meet you

i think i just replied to you on the other thread about pain meds.

You do have your work cut out, but you have hit the nail on the head....you wouldn't change a thing - your husband sounds a real treasure

Take care and look forward to seeing you here and there.
#
Love
toni xxx