help??

poppy72

Hi I am a forum virgin so please bear with me if i do something wrong!!!

I got diagnosed 6 yrs ago with ra and have gotten worse every year since in my hands feet and wrists I am 37, I am married with a 10yr old daughter the guilt is incredible where she is concerned!!

i have jumped thru all the hoops and been in pain all these years and have hopefully got the green light for anti tnf, but they tested me with the tb test and i my skin reacted (just my luck!!!!) so now am aiting for results of another blood test b4 they allow it,,,,,,

can't seem to shake this awful blackpit of despair at the moment ,,, steroids aren't helping and zamadol makes me into a zombie

any help anyone? tips ideas? comforting words??? :?: :?:

lindalegs

Hi Poppy,

Welcome to the forum but sorry you've had to join the club.

I've had RA since I was 27 and have brought up two sons with my husband, I'm now 52. I do know what you're going through as many others on here do too.

You're bound to feel low it's only natural but you're not alone. Try to listen to your body and rest when/if you're able. Things will get better I promise you. Your Rheumy team will help and we'll answer anything we can in the meantime.

Hang in there RA is a bitter pill to swallow but there will still be good times ahead - just don't give in to it.

Luv Legs

marion1952

Hello Poppy

Welcome to the forum, but sorry to hear that you are having a rough time.

I have had RA since 2008, but am just on methotrexate, so I can't help you about the anti-tnfs - but there are plenty of people on the forum who will be along soon who will be able to help/advise you.

I'm sure you will find a wealth of knowledge and support (and yes, a few laughs) from the people here.. I wish I had known about the forum when I was first diagnosed.

I will be watching this thread with interest, as I guess I might also go on anti-tnfs at some stage in the future.


Take care

Marion

barbara12

Hi Poppy
Sorry you are going through all this, I cant help with the RA, but I can offer some comforting words.
You have come to the right place for support, we are always here when you need to talk or rant.
I do hope you get the right treatment very soon, but please don't forget were we are.
Love and loads of hugs (((((((())))))
Barbara xx

dreamdaisy

One of the worst things about this appalling business of arthritis is the time it takes to find the right drug combination that will work for you. I have had experience of three anti TNFs but, due to over-exertion last night I am wiped out and too tired to go into detail now. I promise I will post more fully tomorrow when, hopefully, I'll be feeling a little brighter. Hang on in there girl, we'll get you thro this. Dreamdaisy

woodbon

Hello, I'm sorry that you are going through all this. I don't know about the RA, as I have OA but, I do know about the waiting and the frustration that brings. Also, one of the symptoms of ra is depression, just to put the 'tin hat' on it! and also the pain is bound to cause the strongest of us to feel depressed.

I hope the medics get their act together, and give you something to really help you feel better. Meanwhile, take care and be kind to yourself, try not to worry too much. Love Sue xx

chris7

Hi Poppy

So sorry you have to deal with all that and are feeling so low at the moment. I can't advise on RA as my demon is OA, but I just wanted to acknowledge your post and let you know these peeps make good listeners and alway try to give relevant advise and support when they can. Hang in there and keep posting when you can. We are on your side love. I send some hugs and hope tomorrow is a better day. ((((( )))))
Chris

ironic

Hi Poppy,
Please keep posting and dont feel you are on your own.
I know this has been a knock back for you but please hang on in there.
When do you have your next appointment? If not soon perhaps a trip to your Dr's could help. Maybe different meds could help until you get some answers from your Rhummy.
Until then try and get some rest and do not be to hard on yourself.

Lv, Ix

skezier

Hi Poppy,

I am another that doesn't have ra but I do know about how isolating all this bone stuff can make you feel. I am sure you haven't let your daughter down cus you love her and that's all any child really needs. This I do know.

I hope you find a med that can help and its so unfortunate that you had a reaction to the tb jab but it might be ok with the next bloods. If not Poppy they will give you a course of treatment and you will be able to have the drugs. Have they said which one they are thinking about giving you? I so hope it all sorts out and here you are never alone. Nice to meet you and sending a ((( ))) and a hope it sorts out soon for you. Cris x

dreamdaisy

Right, it's me, I'm back, slightly refreshed after a night of what is laughingly called 'sleep'. Firstly, very wise words from skezier: a child needs love. Simples. If you love your daughter, than that's sorted. Secondly, anti TNFs. I speak plainly, I don't believe in giving people false hope - unlike doctors.

My PA (like RA but with the added extra of psoriasis) began in 1997. By 2002 the medical profession were reluctantly taking me sewriously and I embarked upon the 'wonderful' journey of taking medication to treat an 'unspecified inflammatory arthritic condition'. I started on sulphasalazine tablets, and they have been the constant factor since then. I have also flirted with tablet meth, leflunomide, oral steroids, injected meth, celebrex and naproxen and cyclosporin. I think that's everything. I have also had infliximab and enbrel.

I had my first infliximab infusion on 21 June 2005. Lovely it was too. Instant results, felt wonderful, thought I had the whole thing licked. By the end of August I wasn't responding to it - I had almost instantly created the antibodies that halted its effect. This can happen: the body gets used to the med and blocks its effects. That was a major let down.

I then had a year or so of not very much: indeed I can only remember the sulpha and anti inflammatories as a constant (I cannot recall what meth, if any, I was on then) my consultant obtained funding for me to try enbrel. I began that in August 2006 (I think). It didn't have any effect on pain or inflammation levels and by October my liver was beginning to go haywire. They pulled me off that virtually overnight after a dodgy blood test result, and I had to go to gastroenterology, plus dermatology as I suddenly had psoriasis for the first time, on my soles and palms. They then diagnosed PA. Again I was taken off everything apart from the sulphasalazine as that was suppposed to help clear the P. I ended up by spending three months in bed, everything hurt, I lost my appetite (!) and lived on full fat Coke and hula hoops. I lost weight - some diet, huh? In the February I was at such a low ebb that my consultant put me on prednislaone: within four hours of my first 20mg dose I felt 'better' in myself. I've been on varying doses of that ever since. Again I had to wait for enbrel to clear my system and my consultant applied yet again for funding. This time we went for humira.

I began that in July last year and my inflammation markers are in single figures and have been since my first dose. Much to my disappointment, however, I am also taking injected meth, naproxen, omeprazole, sulpha and oral steroids: stuff she told me I would be able to drop if the humira worked. See? Lies and false hope. Yes, the H has worked in that my markers are so low, but the pain has NEVER gone, my walking has not improved one iota (I've been on crutches since 2002), and I still flare.

Yes, antiTNFs can make a difference, and for some a huge difference, but they are not necessarily the whole answer. I am certain that once the humira stops working (which it will, they all do eventually) then that will be it for me. I have had 3 goes at these treatments, yes there are others I could try but I reckon the funding won't be there - I'm not the only person my health authority is paying for! They are presented as the silver bullet against the vampire that is arthritis: they are not. Don't get your hopes up too high: the crushing disappointment isn't worth it. I sincerely hope you are able to try one fo these treatments, and I sincerely hope you are one for whom they really work. When i first joined here I remember reading a post from someone, a bloke, who was on humira. He reported that he had spent the day laying a concrete drive. He's obviously still doing well 'cos I dont think he's posted since. I'm still clattering about on the metal props, a five minute walk home from the curry house on Saturday took me 20, including two sit-downs for a nice rest! It is what it is. We are all so different in how we react to these things.

Things will get sorted for you but it does take time. The merry-go-round of trying meds isn't fun, but it is an essential process. The impact on life is huge, but if you have a supportive spouse and
a settled, happy family life, then that is treasure beyond value. You've found us here: we've all been there, done that, got numerous Tshirts (most of them for courage and bravery under extreme circumstances!), we know our onions, we're here to listen to moans and rants and grumbles and complaints and, just occasionally, some good news. Stick with us, hun, we'll get you through this. DD

dorcas

Hello Poppy and welcome to the forum from me too.

I have PA not RA but both cause inflammed joints, swelling and stiffness and are treated very similarly by the rheummys.

I can understand how anxious you are about the ant tnf treatment options....as you wait for the results of more tests. :roll: I do hope that you can have a trial of one of them and am sure the docs will do their very best...... but they do have to balance risk and will have your ultimate health and safety at heart.

There are new drugs being developed and there are certainly new biologics so don't despair......there may yet be something that will suit you.

There are lots of peeps here..some have already answered your post...who know what it is to have RA and be a mum. Guilt is a destructive emotion and as having RA is completely out with your control you cannot blame yourself for the limitations arther is imposing. As others have said...arther does not take away any of the love you have and can show your little one.

So hang on in there! we are here to support you and will be with you every step of your journey so keep posting. :!:

(((((hugs)))))

Iris x

julie47

Hi poppy

I got my RA at the age of 25 just after having my daughter, who is now 22. I found it extremly difficult too. I then started gold injections and after a while the benefits kicked in. (do they still play with gold nowadays)
I still had the tiredness and pain but i could manage.
I worked part time when my daughter started school.

I eventually had to stop work as I could no longer do the job.

I am now on meth,leflunomide,celebrex,hydroxi, and paracetamol

I found that it was important to help my daughter with school work so i rested in the afternoon and was sort of refreshed for when she came home. I helped her till she got to A level then from then on it was beyond me , as for uni that was a completly a different language.

She has now graduated and we are so proud of her and also of me as when I was not feeling myself I still battled on.

We have a great relationship and I think because she has grown up with me having RAshe is a very thoughtful person and caring to others too. She is my best shopping buddy (hubby not so keen on clothes shopping but does take me ) and along with OH best friend

Anyway I do hope that you can start to feel better soon and that you get the right meds.

love juliepf xx

cebeem

Hi and welcome poppy 72

Nice to meet you
There seems a common thread here!
The age for diagnosis or start of the prob is the same for Julie ,yourself, Lindalegs and I, some following pregnancy like myself which is common (in the sense that those prone to get it often kick off after pregnancy).

I joined the forum only a couple of weeks ago and I could not have been at a lower point...but the advice..particularly from Iris has been invaluable and the fun I have on that Karaoke (even though there is no one in there half the time) has well and truly lifted me!

Took me a while to fathom out what was going on....thought they really were all going on a picnic last week with Trisher!!!!
:?

My sero neg A has been slow to progress its in my hands mostly but if I'm late with the medication I can feel it in a lot of places.

The tiredness is bad ...do a little and often, give yourself an achievable goal then have a rest to recover....do a bit more then treat yourself to a peek at the forum....bit more and tea and biscuits etc. keeps you going and focussed!

With the hand involvement I find the clumsiness most frustrating and get the fiddly things done on good days!
Recently bought a TENS machine and I cant praise it enough 7.49 from Ll**ds Pharm*y well worth it.

Keep your chin up we are here for you!

*CB*