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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Rosie,
Oh poor you, firstly I hope that the op goes well on Thursday will be thinking of you. Is it in Hospital or Surgery, general
or local ? Anyway hope all goes well
I am also sorry to hear that the RA is back with a vengence. I can remember I did the same as you in the first year
I was diagnosed and I think after 4 weeks I was on the strongest pain killers and the RA and anti inflam's. I think I
also had to prove it to myself.
Take care
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Rosie, No-one will think you are stupid - you took a decision to try & do without the drugs, and had you not done so you would have always asked yourself "what if?" I`m sorry it has returned with a vengeance, and hope that your rheumy will have some suggestions for you in August. It`s all trial and error with all these drugs - a lottery as to which one will work! I had to stop leflunomide because it played havoc with my liver. Good luck on Thurday - I hope all goes well. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 7/6/2011 Posts: 65
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[size=6]Hi Rosie, I definitely do not think you're in any way silly for coming off the meds- I have tried this many times. The only proper suppression i have ever had is when I am expecting- and one cannot be pregnant forever,eh?! I most definitely agree with attempting the food elimination diet. Dr Patrick Holford has much to say about how food can affect RA and other auto-immune illnesses. http://www.amazon.co.uk/...Nutrition/dp/0749920130
I would absolutely not throw my meds out the window and follow him unconditionally, and he does say some things we all know, however there is an interesting section on allergies and he accentuates just how allergenic wheat (gluten too) can be. With MTX I always protected my liver with Milk Thistle ( Silybum marianum). It is a wonderful herb. Nettles are also very cleansing and excellent for the blood flow and contain minerals galore... The other option is treating the low feelings that RA can so easily produce- I try and take relaxing herbs to alleviate the anxiety I feel when i am flaring and Vit B and D (cod liver oil, a pure brand.) Love, Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Rosie
First of all, everything crossed for Thursday and the biopsy. It's always better to get things like this seen to straight away and hopefully, it shouldn't cause you any more probs.
As for the RA - well it's just the pits!!! During my time on mtx my Alt levels have been up to 120, at which times I have been taken off the meds. Each time this has happened, my bloods have gone back to normal and I have successfully re-started mtx. I know it's easy for me to say, but try not to worry too much, as usually things settle down when the drug is withdrawn for a while.
As for taking yourself off all drugs - well, many of my lovely friends on here will tell you that a couple of years ago I rebelled and decided enough was enough and I wasn't taking any of the damned drugs ever again! Some three months later I couldn't get out of bed, so I learned a huge lesson - and a very painful one it was!! Having said that, I would have always wondered "what if" if I hadn't done it, and can understand exactly where you are coming from. It could have worked for you and I really wish it had.
Take care and let us know how things go on Thursday.
Lots of love
Jeanxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Rosie
Been wondering how you were getting on..Its a shame the RA came back but at least you tried! Im often tempted but bit too scared so good on you! Lotsa luck for Thursday and let us know how you get on.
Love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Rosie,
Sorry to hear how you are suffering at the moment.
You are not stupid for wanting to try without drugs. I did the same about 7 years ago, didn't think I needed such toxic drugs! One way to convince us that we do need the drugs I suppose!
Good luck for the op on Thursday.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/30/2010 Posts: 55 Location: St. George, Bristol
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You are all so kind and supportive! Thank you. I am going into Day Ward at the main hospital but will be back home THursday night so shouldnt be any problems. Amanda, thank you for the link to amazon. I have just purchased milk thistle and also take magnesium, zinc and omegas 3 6 &9. I will let you know at the weekend how I am. Sun is shining here in Bristol - Summer has arrived!! xx Rosie
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Rosie i think you did a very brave thing to try it. When I asked my specialist once if i could come off the drugs he said that I could but he thought I would be bed ridden within a few months so that scared me off! Good luck with your op, let's hope that's the last you see of that sneaky little thing. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 10/21/2010
Posts: 178
Location: aberdeen
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hi rosie
you've not been silly at all, and I think most of us who are newly diagnosed, once under a bit of control with the drugs, thinks there must have been an error in diagnosis and that we dont have this wretched disease after all. I believe it is all part of the journey on the road to acceptance, if you hadn't done this you'd still be wondering. So sorry you're in pain again and hope that can be sorted out soon and of course good luck with the op tooxx
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Rank: Advanced Member Groups: Registered
Joined: 9/30/2010 Posts: 55 Location: St. George, Bristol
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Hello - me again. Woke up today minus my little basal cell carcinoma - few stitches and a headache. Really friendly surgical team - stitches out in 1 week and followup appointment at plastics department 1 month. If it is anything worse than BCC then I may require more treatment but consultant was pretty certain it wasnt melanoma. So not so bad eh?? Of course the best part of the day was being able to wear such a sexy little number for the op! Very fetching ha ha. Hope you all have a fab weekend Love Rosie  Rosie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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That's great news, Rosie. These specialists know when they remove tissue what the problem is, so, hopefully, you can now forget about it.
Take care and thanks for letting us know.
Love Jeanxxxxx
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Rank: Advanced Member Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Pleased all went well, have a nice restful weekend xx
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