After how long since diagnosis did your RA become better controlled or in remission?

Hi I keep wondering to myself will I ever get anywere near a better life than Ive been lumbered with since RA. Good (ish) days are very few and far between and when I get a good day (I know I shouldnt) but I always make the most off it and end up suffering for days.

Yesterday was a good day so my better half had treated me to some shopping pennys so Monday was spent shopping with my sister and niece (in my electric wheelchair), but since then I had to nap when I got back yesterday afternoon and was in bed by 7pm, up and down most off night in pain then when finally eased with pain relief and heat pads I slept till 2pm today! Then just had another duvet day all day! Just managed to get the energy together to come on laptop.

I always get down on days like this and keep asking myself when will I feel better. I read stories of remission and days with no pain and think why can I not be like that.

I think I am feeling a little more fed up too as my anti tnf nurse told me to expect a big change in my ra and mobility within a month of starting Enbrel and still I feel no difference!

So just want to know if and when you started to feel any better?

Julie xx

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Hi Julie, sorry your having a bad time but I do know where your coming from here. Firstly it is difficult when you have a good day to stop yourself from making the most of it, it's what I always did and then suffer terribly the next day. Although I've had RA 17 yrs I have never had a remission, sorry I know that's not what you want to hear. Don't get me wrong I can get about more now and the pain is not like it was, well not at the moment anyway but it never seems to leave me free from pain. I have been told that this is because I had a very late diagnosis, all the time the RA was getting more and more aggressive. The main drugs available then was Sulphsalazine and MTX. I was put on the Sulphsalazine and had to wait for it to work, as we do, but it was useless. I was never given MTX until many years later it was far to late, all they kept doing was admitting me into the hospital to try and control it with prednisolone infusions.

Now of course the evidence is clear with all the operations I have had and many more to come.

Don't give up hope on the Enbrel there is still time and I know you are positive about things so that's good, the only thing is if they find its not working and try another Anti-tnf its a waiting game all over again.

Try not to over do things when you are feeling better, very hard sometimes though as we want to make up for what we have missed out on.

Hang in there Julie,

Take care

luv mand xx

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Thanks Mand and I am so glad you have told me the honest truth.

Me and my GP and rheumy nurse now belive that I had RA for at least 4 years before diagnosis, my hand and wrists pains were put down to RSI by my old gp, leg neck knee and back pains were put down to trapped nerves, pulled muscles, siatica etc, and because these were sometimes appart and not always at there worst together I just accepted what I was told and got on with it. My fatigue was put down to me being overweight and he said I was depressed, but I certainly dident feel it my only problem in life was all these illness's and not being taken serioulsy!

I was even made to feel a hypocondriact.

Now I have a new GP and I am getting the right treatment, but this only came because I was hospitalized due to the pain and swellings etc being so bad I couldnt lift my own head of a pillow.

I am better than I was in hospital, but still have days were I feel I cant lift my own head off the pillow.

Ive had mthx and am still on it this dosent seem to have helped other than not swelling quite as much, but bloods still show high esr and crp,and I still feel crap.

Sulphsalazine gave me terible migranes.

I am still on predisolone and trying to control it with this too, but what happens when they take me off it, my doctor is already trying to reduce me because of stomach pains.

Thanks again for telling me the truth maybe now I can try and get on without false hope and If I do get better with treatment then thats a bonus.

I dont know how you have coped for 17 years I am only 2 years diagnosed and still struggling to come to terms with it properly.

I know what you mean about pacing but its so hard to do when you feel crap most off the time.

Thanks so much for your reply

Julie xx

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Hi Julie, like Cece said stop fighting it, you will never win. Sometimes we think its the right thing to do, fight the disease but it's one of those illnesses you just can't fight as it gets stronger.

Like Cece said the more you can accept and come to terms with it the better you will be. You have a lot going on at the moment so I realise that this is difficult.

Glad you appreciated my honesty never now how others will take it.

Take care Julie,

mand xx

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Hi Julie,

I'm sorry that you're feeling so low today I think we all know that place where you have some energy and 'overdo' it and then suffer afterwards. It's very hard to accept that this is how things are, I certainly know that, and you have other health problems that will complicate things. Fibromyalgia fatigue will be be mixed in with all this too and coping with young children is exhausting even if you're fit and well.

Psychologically it gets easier when you reach a stage of acceptance and stop fighting it - this is how it is and there's no certainty about what comes next. I've found that using mindfulness techniques and staying really present in my life today helps me accept things and allays anxiety about the future - if you're really 'here' you can't also be worrying about the future. (see the Breathworks website breathworks-meditation.org)

Like you I've had a difficult few days (nasty flare) and have been sleeping off the effects of all the tramadol that I've taken over the week-end When it's really bad I just tell myself "this too will pass", medicate as much as I need to and rest. Another day comes and the sunrises again and the worst is past

Be kind and gentle with yourself and keep talking to us about all this, it helps and you're not alone now.

Cece x

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spent weekend well sun blubbing.. achieved 8 good months now back to almost square one lost a lot of mobility , grip etc fed up.. walked with sticks to local shop it almost killed me no noe exagerating.. had friend meetinig me for tea didnt ge back in time as so slow.. they came met me mmade me tea.. had to sit before tea so we watched some of weakest link first.. well my brain still works.. questiions on there so easy.. my friend andy watson was a contestant on it got to final three two or three years ago.. tall bird watcher with glasses v clever..like stimulating company keeps me sane..just.. got rheum nurse appt tomoorow.. that will be uplifting im sure.. wonder if she willdo. tell me my das score never had before.. taking nras / roches das score book with me lol xx

[Gina_K]

It took me four months on Humira before I felt better. still on plaquinil & methotrexate. I am off steroids since xmas, was on them 2 years. I was given the choice of embril or humira consultant would'nt choose! I chose humira because i thought was newer, was very scared injecting at first, now year later I could inject (if I had to) on the bus!! I still pace myself, but I can honestly say, I feel fine most of the time. It was a long road getting used to meds and regime, it was very expensive too for 2 years, as nothing is free in Ireland (except humira!) My consultant is worth her weight in gold! she knows Rheumtoid Arthritis, it is her lifes work! Anyway, I hope the embrel works - by the way why embril not humira???

[lisalockit]

Hi Julie I too like everyone else know exactly how you are feeling, I don't believe anyone ever really achieves full remission, I was diagnosed in 2005 and after stong doses of steroid, sulphasalazine and a few other pills I achieved a good standard of mobility until 2006 when boy did it come back with a vengeance I don't think I had one joint that didn't hurt or wasn't swollen was put back on the steroids had methotrexate introduced which was told took time to work (it never did work for me) I went on like this for months and months until finally after a trip to see the consultant with my sister (who wasn't going to leave the office till she demanded they take more action with me!) I had both knees injected a whopping dose of steroid and was put forward for anti tnf injections (embrel) the only downside to this being that they had to make me worse again by withdrawing the steroids so that I passed the criteria! but long story short finally got sorted in 2007 and touch wood since I have been relatively controlled and can lead a normal life with some limitation. I do still have odd flaring joints but nothing like I was and I do still know when I've overdone it lol I would say that different health authorities differ in how well they treat us with RA but keep pushing and don't let them fob you off, only you truely know how you feel.

Lisa xxxxx

[Andrea_Shapiro]

It took a good 18 months to-ing and fro-ing with different meds, and rheumatology not really listening, if I'm honest. I was telling them that the drugs weren't working, but they kept on telling me that they should be. I was so happy on the prednisolone, because I felt normal again, but I knew that I couldn't remain on them long term. Unfortunately for me, I expected miracles with everything that came thereafter. Big mistake. Message alert ****EVERYONE WITH RA, DON'T EXPECT MIRACLES!** I think we have to use a comparison with how we feel on a good day, not how we USED to feel. I saw my GP yesterday, and told her that I'm not bothered about pains in my feet & knees, as long as my hands work OK. I think my expectations have been lowered! I still get told by Rheumatology that I SHOULD be better, but even my consultant has told me that my inflammatory markers were sky rocket high & this is the best I can expect. It's still a hell of a lot better than it was, and I thank the Enbrel for that. Stick with the medication and tell them everything when you have a review. Also, when you go to the hospital, take a close family member who sees you at your worst.

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All medication takes time to build up in the system and start to work. Enbrel and Humira are both known to take up to three/four months to become effective. Your anti-tnf nurse was wrong to suggest a month would bring big changes!

From my experience (of two anti-tnfs and a wagon load of other stuff!) the first thing you may notice is that you feel a little more alive, nothing specific just a better feeling of wellness. Then the inflammation starts to settle down and with it the pain eases. A few months later with ongoing improving you may start to feel you can use your hands better, start to be a little more mobile etc. It all takes time, they are not miracle drugs after all!

My 'best' drug was Infliximab, which is an infusion, that did bring quick almost remarkable results. Sadly its wonderment fizzled out quickly too.

Cece is right, acceptance brings about a change of mental state, a positivity that goes a long way to taking each day for what it is. Making the most of good days, sensibly, and accepting the bad days. If we overdo on the good days we pay with bad days ... back to teaspoons ... don't use them up in one go ... save some for a rainy day!

Lyn x

[javgb]

Please read this book:

The Soul Medicine, Eric Rolf

there are lots of answers to our pain