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Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Hi everyone
Just thought I would mention that I have decided to have a six month break from treatment. To be honest, I havent been well for a while, I have had one infection after another and am sick and tired of starting and stopping treatment. I feel that for every medication I have to take, I have to take another to counteract the first one. I am in a lot of pain, and the meds dont make me feel any better, so what is the point. I have talked at length to my GP who is very supportive. I have stopped my leflunomide, my steroids and humira. I cant feel any worse than I do now, so I have nothing to lose. Anyway, I just thought I would let you all know.
Louise
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Hi Louise. I'm sorry things have been so awful for you and I can understand that stopping and starting treatments must be really frustrating. I also know what it feels like to suffer awful side effects and I can remember thinking about just stopping treatment myself on a number of occasions. You said that you had discussed things with your GP but I'm wondering if you have talked to the rheumatologist too. Maybe there is a different dmard or biologic treatment that might be more suitable for you. I hope you feel better soon and can manage to get your long term treatment sorted out. Keep us posted on your progress. Best wishes from Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Louise
Sorry to hear all this, I felt just like you back in July last year after being on dmards and infliximab all of which didn t work and had a crp of 104 which really said it all. I know it really is trial and error for many of us with RA so I thought well next one please ! So off I went with the new drug Cimzia crossing everything I had hoping this would be the one after two years of constant pain and feeling so ill like you do with RA. Well it has worked overall, having added mtx by injection, which was good, I know I have RA, still stiff bit achy but I knew deep down I would never be quite the same again, but happy as things are now. My mum had RA in the 80's and only offered steroids and gold injections and slowly got worse so I am truly grateful for the drugs we have now as I know what it is like without them.
Thinking of you, love Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi, Louise, Just writing to give you my support and best wishes. This silly disease is a real trial at times. Its a job to know which bit of the crappiness is part of the R.A. and which part is the result of the drugs. Infections all the time from drugs is no joke. My immune system seems to over rule the drugs most of the time as yet, but then they don't seem to benefit me loads either! But I dare say I'd see a big difference without them. I frequently feel tired, lethargic and tearful, and feel that the drugs have a lot to do with this as well. Hopefully after you've been off them for a while, you'll feel stronger to start something new. However as the others say I would definately talk to your rheumy team about what you are doing as well as your G.P. if you haven't done so already. Best wishes Zena x.
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Yes I agree. I fully understand and support your wish to have a break and I think that mentally it will do you good. Maybe 6 months is a bit long---my consultant once told me that I could have break and he would take me off them but that I wouldn't be able to get out of bed in the morning. Maybe if you did come off for a while then you might realise that perhaps they were helping you a little tho you aren't aware of it? Do take advice and maybe think about a shorter period of time? But we'll be here for you. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Louise,
I can well understand you wanting a break from the drugs , sometimes the side effects are just too much. I agree with Julie though, maybe think about a shorter period? Mind you , your body will let you know when it's time to go back on them I'm sure! I had a 12 month break after 3 years of trial and error with different drugs but I had steroid injections every 3 months which helped, and after the 12 months I was ready to restart the mtx and I actually tolerated it better than the first time round!
Keep posting to let us know how you are.
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Louise,
sorry to hear you are feeling so poorly, i have no experience of coming of the drugs .. but i realise it's not a decision to take lightly.
it's good you have a supportive GP but am wondering if you have informed your Rheumatology Department.
by other posts i see it can work for a time, but i also feel 6 months seems a long time.
hope things improve for you soon,
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Louise,
Having just swallowed my first dose of leflunomide only 30 minutes ago after a 4 month gap I can say I'm ready for another go at it! Like you a series of infections then nasty allergic reaction to the MTX at Xmas made me say whoa, hold on, the system is rebelling! I must say I've felt better in myself being off treatment but since seeing the x-rays last week of the progression of the joint damage over the last year with the drugs I dread to think what it would have been like without. You'll know when to start again, one thing I'm learning to do better is listen to my body more especially when its screaming at me!
Take care, let us know how you get on
Sara
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Rank: Advanced Member  Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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flw93 wrote:Hi everyone
Just thought I would mention that I have decided to have a six month break from treatment. To be honest, I havent been well for a while, I have had one infection after another and am sick and tired of starting and stopping treatment. I feel that for every medication I have to take, I have to take another to counteract the first one. I am in a lot of pain, and the meds dont make me feel any better, so what is the point. I have talked at length to my GP who is very supportive. I have stopped my leflunomide, my steroids and humira. I cant feel any worse than I do now, so I have nothing to lose. Anyway, I just thought I would let you all know.
Louise hi louise, i am the same came of mtx for a while, i had a long talk with my doctor i have felt sick for long while on mtx sore gums, chest infection, cold sores that never seem to go away, i cant go into a chemist and just buy something over the counter i have to say to chemist by the way im on mtx, my doctor has said if things get bad again or flare up i can go back on mtx or another drug im fed up taking one drug then another to fix what first drug done so will have wee break and see how i get one please keep posting and i will as well see how we get on i tried to phone rhummy nurse about it but we only have 2 for the whole of north ayrshire so chances of getting to talk to one or apointment very slim, sylvia xxx
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Rank: Advanced Member Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Thanks everyone for your support and well wishes. I am lucky that I have an incredibly supportive GP. The RA team where I live are pleasant enough, but they tell me what is best for me, and dont listen to what I actually want. I remember in November being told I should try Humira. When I had huge doubts about it I went in to see the RA nurse, she said I had to have it and did the injection herself before I had chance to do anything. I just want to take some control thats all. I stopped the leflunomide and steroids last wednesday and am beginning to feel the pain and stiffness creeping back, but at least I can feel it, and can find other ways to deal with it. My GP has written to the RA consultant explaining about the 6 month break so I am just keeping my fingers crossed that I can manage to go that long.
Will keep you all posted though!!!
Louise
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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 I have been in a similar position several times and completely understand how you feel about coming off treatment. Perhaps things work differently in the north east but my rheumatology team would have a fit and a half if my GP took control of their prescribing and allowed me to stop treatment! Abrupt discontinuation of steroid treatment alone may cause severe symptoms due to the fact the normal production of steroids by the body has been turned off. Although there are ways of getting round the pain and inflammation, that is all other options will offer - symptom control; they will not slow down the disease progress. If you are already starting to feel the return of pain this suggests to me that your disease is not adequately controlled enough to be able to stop all your medication. I have a lot of joint and other damage caused by uncontrolled RA and I think you are putting yourself at huge risk of possible long term damage by not being treated. All you will succeed in doing is allowing the RA to spiral out of control to a point at which you can no longer put up with it; someone will then have to use their expertise to get you out of the hole you have dug for yourself! I know my comments are at odds with those of others who have posted a reply but I truly believe you are doing yourself a disservice. Personally, I would have sought an early appointment with rheumatology to discuss future medication and set out how I felt about the current regime. Providing you can clearly put forward your views on treatment I am sure they would have been happy to consider a mutually agreeable way forward. I am sorry I seem unsupportive but I know first hand the consequences of stopping RA treatment. It is not a recommended way forward! Please reconsider Louise, you could be putting yourself into a very difficult position. Hope you don't suffer too much in the interim. Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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I have to say that I agree 100% with Lyn on this one. A couple of years ago I took myself off everything for similar reasons. I was sick of putting all this poison into my body etc. etc. At the end of 4 months I was in absolute agony and unable to get out of bed and Xrays showed that my joints had eroded still further. Please, please talk to your rheummy team before you decide on this drastic step. I do, however, fully appreciate where you are coming from.
Lots of love
Jeanxxxxx
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Rank: Advanced Member Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Thanks for your comments everyone, and I do understand your concern. I will see my RA nurse on Thursday, but have stopped my leflunomide and steroids already. I have made the decision to stop treatment after a lot of soul searching and I have weighed up all the advantages and disadvantages. I will speak to both my GP and my rheumy team though this week.
Will let you all know how I get on.
Louise
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Rank: Advanced Member Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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hi lyn, i know what you are saying but sometime we have to try, i saw my consultant last nov i explained about wanting to come of mtx he said i should wait and he would get in touch with rhummy nurse.
that was last nov i next apointment was march this year, he still had not got in touch with rhummy nurse, i next apointment not till jan 2013,
so i am tired of waiting my doctor will keep an eye on me i have to see him in 4 weeks and still to get my bloods checked if i have a flare up i will go back on mtx
but i will feel like i tried some thing new. i will keep you all posted sylvia xx
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Rank: Advanced Member Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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hi dorat, just read your post to louise, and i feel the same as you i have taken mtx for 3 years cant say its made a lot of diffrence but that might just be me thanks for posting did your consultant say it was ok or doc i will know when or if i need to go back on mtx or mybe something else, thats not got so much side affects of mtx thanks again for your post
sylvia xxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sylvia,
Yes my consultant did agree with my decision, he knew I had had 3 years of trying different drugs and combinations of drugs with no benefit and lots of side effects and could not take any more. I had 3 monthly appointments with him and depo steroid injections to keep me going!
I'm sure you and Louise know full well the pros and especially the cons of coming off the drugs and we should respect your decision.
Sometimes we just have to try things for ourselves even though we know the downside, and that we can't be without the drugs for long. For that time it gives us back control of our bodies!
Good luck.
Love Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Hi everyone
Just a quick update. I saw my RA nurse today for my usual bloods and humira injection. I let her take my bloods and then told her that I was having a treatment break, that I stopped my leflunomide last week and I would not be having my humira. She asked my reasons why, and I exlained them to her. She then said that was okay, that it was my body, so my treatment was up to me!!! So now I just need to see how I go.
Louise
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Rank: Advanced Member Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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good luck louise, i hope it all goes well, plz keep posting, i will do the same hopefully we will be fine and if we have to go back on the drugs so be it,
take care sylvia xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/19/2009 Posts: 182 Location: kilwinning north ayrshire
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thanks doreen, i will let you know how i get on, for 2 weeks now i have felt better no sickness in morning of taking mtx my joints seem to be ok
will keep you posted on how im doing love sylvia xxxxx
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Rank: Advanced Member Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
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Hi Sylvia
I am 2 weeks without meds now. Seem to be okay, very stiff and sore but not a massive flare up like I expected. I can live with things at the moment so will carry on regardless!!
Hope all going well for you.
Louise
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