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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Hi All,
I've missed you guys so much. I was RA pain and symptom free for a few months after coming off MTX but now its back with a vengeance!!!
I cant sit still, I cant move, breathe, think, without the pain! I have my old friend Flu like symptoms back too!!
I am seriously thinking of ringing rheumy nurse up and asking for drugs! But I am scared... I know, I know, stupid to be scared when you've been there before, many times, but still....
Leflunomide or Gold??
My DAS Score is 4.22 but they dont include my ankles and toes!
What would you do??
Today I am upbeat, yesterday I was very down.
Wishing you a pain free day and gentle hugs to everyone!
Lxxx
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Rank: Member
Groups: Registered
Joined: 7/6/2011
Posts: 11
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Hi Louise
That does not sound nice. I really hope you find some comfort soon.
I am not really sure what to advice but I think it must be very unpleasant to be in so much pain constantly. I do not know your history about why you came off the MTX but is there something else you can take to relieve your symptoms? Perhaps it is worth calling up your rhemmy nurse to run through your options as to your next steps. Being in pain is not good and it can effect your health in other ways as well cos I know I try to move too much when I am in pain which then has all sorts of affects on my joints and it can also affect sleeping patterns.
Good luck with your decision. Sorry I have not been much help but I can send you a cyber hug if it helps........
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Please phone the nurse and get some help and advice. Damage to body tissues can occur quickly in a severe flare. I know this because I am still suffering with the effects of the damage that was done in a few short months of intense flaring last year. Sorry you are feeling so poorly. I understand the fear. It IS scary to feel that ill. But we've been there too and understand what you're going through. Phone the NRAS helpline if you are at all reticent about getting in touch with the nurse. I have called twice and the person I spoke to on each occasion was so helpful, sympathetic, understanding and knowledgeable. Help is out there for you Louise.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Hi Louise
I am sorry to hear you are in so much pain and misery. You really need an urgent appointment with your rheumy team to assess your disease and drug options. Staying off drugs with high inflammation means the disease will not be controlled. I have had numerous infections the past 12 months, I have been forced to keep stopping the medication temporarily, and this disease has had a five course meal off my skeleton. My advice is don't delay too long.
It is scary for you, but believe me with no drug control this disease will cause more problems. You mentioned gold, this was one of the first medications I was prescribed. I had gold injections every month for nearly 3 years. It worked really well for me, with no side effects but eventually stopped working.
Wishing you all the best and hope you get to speak to your rheumy nurse soon.
Love
Rebecca
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Louise, Sorry to hear you are feeling so crap, it soon gets you down. No more advice to give sorry, I have been there, and always find steroids to be the best form of short term relief for me, as much as I don't like having it. Never tried gold, tried leflunomide, seemed to help slightly, but ra soon over ruled it. Really hope you get sorted soon, best wishes. x How are you now Naomi? Hope you too are feeling better by now and that the resting is continuing to help. What a life hey, I think we'd all feel a bit better if this torrential rain would just go away!!! Zena x.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Louise,
Sorry to hear you are feeling so bad but I think you know what the answer is. You need to be on the drugs!
We are all scared of the toxic drugs, it doesn't get any easier taking them, I still hate it after 11 years, but without them we risk the pain and joint damage.
Summon up the courage to call your rheumy nurse and get started on some treatment. You would benefit form having a depo steroid jab too, to calm things down while the drugs start to work.
Love Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Louise Without disease modifying drugs your RA will not be controlled; you need effective treatment! The drugs are very toxic, and we all have side affects of one sort or another at some time, but they are also very necessary. Whilst the disease is uncontrolled you at at risk of incurring joint damage. Not sure why you are off meds in the first place?? But, you certainly seem to need them now! You would only be symptom free for a few months because it takes at least that long for methotrexate to leave your system. You would still have been benefitting from the drugs. Once that wears off the symptoms of the RA re-appear. The RA itself never actually goes, it is simply controlled and the reason why meds must be continued even when we are feeling well. You need an early rheumatology appointment so that you can be reviewed and they can decide on what medication would be most suitable for you. I had gold injections about 20 years ago; it's rarely used these days as there are more effective drugs available. Don't think about ringing rheumatology any more ... do it! You need control  Good luck, hope you start to feel better soon, Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Thanks for all your replies.
I rang the nurses and I am going seeing a consultant on Thursday morning. I don't like this particular consultant as when I last saw him he dismissed me as not having anything "going on at the moment" I thought it was just my interpretation of the appointment but my mum came with me and she came out and said "how rude!". But I am determined not to leave his room until I have some answers, and mum is coming with me. It breaks her heart to see me in pain, so she can give him hell.
I came off MTX because.... well to be honest, I am so sick and tired of being dismissed as a hypochondriac and consultants changing their minds on how to treat me and what it is they are treating. A consultant told me that my RA was under control and he was reducing it, then after a flare he decided to increase it back up to 25mg inj, my hair would be yucky again and I felt so rubbish on it. I (stupidly) thought that if I came off MTX then I'd know for sure if it is RA or my mind! It sounds ridiculous when I say it out loud (or type it) but I need to know what it is I have, then I can deal with it. Sort of.... Fibro, RA or nowt!
So sorry I am being maudlin. I just having soup for lunch and cant even lift the spoon without that familiar ache building up to pain! But I know its my fault.....
Lxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Louise
I'm really sad to hear how much pain you are in.
I went down the very road you have just travelled - decided my body needed a rest from all the poisons but after 4 months crawled back to the rheummy and begged for something to take away the pain and inflammation.
Firstly, don't feel guilty or beat yourself up - you tried to survive without the drugs but it didn't work. As long as you get some help now you will be fine.
Take care and keep us posted
Love Jeanxx
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Thanks Jean,
It must be a four month thing because it is the same for me. Stopped at xmas and now look at me.
Thank you,
Lxxx
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Louise, I'm really pleased that you have this appointment, and that your mum can support you. Let us know how it goes. I hope you can work out something that you are happy with. It really is a struggle sometimes to deal with RA and all the treatments etc. Best wishes from Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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hi louise, i am at this moment of mtx, so far ive been great but will need to wait and see, if i feel bad i know i will have to go back on, like you i just want a break from taking this drug, i hope you get some relief soon i have been of mtx for 4 weeks now i know is to short a time to see if being of helps me my doctor is keeping a good eye on me i will be thinking of you good luck with your apointment i always write down what i want to ask consultant i wait till he answers me, after all its your apointment and we dont get many with him, he is the expert, so take your time when with him i know how hard that can be, as when i come out i am always saying i should have asked him this or that , take care
sylvia xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Louise
So glade you have managed to get an early appointment - to get you sorted ? My area would be weeks for a wait
so well done you. Hope your Mum is good support for you
Let us know how you do under this posting
Rose
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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I went to see my Consultant and I am back on MTX, starting at 15mg inj!
He noticed swelling in my knee but not fluid so at least he didnt stick a needle in to drain it. I just need to wait for the delivery of MTX then I can start Folic Acid again too. He has also increased my pregabalin to 150mg a day as he says I should have been on that anyway. Its so confusing when 1 consultant says one thing and another contradicts them!
Anyway, the good news is I'm back!
Thanks for all your support and I wish you a pain free weekend. Lets hope it stays fine.
Lxxx
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Rank: Member  Groups: Registered
Joined: 3/9/2012 Posts: 15 Location: Sidcup S E London
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Hi Louise,
Hope it goes well for you, and you get some relief from the pain.
Lets hope the sun starts shining soon!!
Best wishes
Mary
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