Date: 20.05.2013
From: Neil
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Subject: Reactive Arthritis - Ankle pain/swelling.
I have had RA since I was 21, i'm 32 now. I had several years without any pain or problems but it came back in 2010. I have a very bad swollen right ankle and nothing I do is making it get any better. I have had injections, 4 x sulphalazine everyday and nothing seems to be working. I play football and have continued to do so with the ankle pain as I'm not letting this illness beat me but it's getting to the point now where I am so depressed due to feeling tired and in pain walking it's really getting me down. I have got Methotrexate but i'm worried about taking them as I have seen nothing but bad feedback from people taking them. Every Monday when i'm due to take them since my last hospital appointment, I just can't seem to take them as the side effect and bad stories i've seen on forums have really put me off. I'm seriously considering stopping all my medication and just putting up with the pain as I am still getting the pain now even though i'm taking the medication provided. Please if anyone can help or offer some advice it would be appreciated.
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Date: 20.05.2013
From: Colin W
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
hi Neil , the main akle joint they inject did nothing for me & endded up having both ankles fused , there is small joints within the ankle & they can inject under xray but you need to talk to your rheumatoligist or GP to arrange it , Triple Arthrodesis is the opperation I had on both ankles & imagine that is where your problems come from , getting them injected could save you a lot of problems in years to come
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Date: 20.05.2013
From: rhona
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
Hi Neil, I am so sorry that you have r/a especially at such a young age. I take mtx and have done for around 8 years without any side effects. I felt the same as you when i started it but if you take folic acid a few days after the mtx then that will help with side effects and some people take folic acid more often. I know some people also take it by injection as that can help people that suffer from any stomach upsets that is may cause. You could give it a try and if it doesn't agree with you then you could get something else. There are many new drugs out now if the mtx doesn't agree or help you. It is important that you try and prevent any joint damage and if your ankle is giving you a lot of bother then you do need something else other than the sulphasalazine, i found hydroxychloroquine (plaquenil) very helpful so you could always ask for that if you are unsure about the mtx and it doesn't have as many side effects. Sometimes wearing a support can also help but you do need the right drugs to stop or at least slow down the disease. There are lots of new drugs around now called biologic drugs but you usually have to have tried the others before they precribe them as they are very expensive. I hope you feel better soon x
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Date: 20.05.2013
From: rhona
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
Hi Neil, I have just noticed it is reactive arthritis that you have and not rheumatoid arthritis as i first thought when i read your message and as i am not familiar with that type of arthritis my above message may not be right.
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Date: 20.05.2013
From: kazz
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
ive been takin off mtx and started taken hydroxychloquine and so far so good NO SIDE EFFECTS :)
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Date: 20.05.2013
From: bsk
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
Hi Neil, I understand how you feel as I sometimes think that myself but you need to do what you can to prevent future joint damage. You are only 32 and methotrexate might well prevent problems down the line. I didn't do well on it because I have a problem with my lungs but I know people who take it with no side effects at all. Have you tried ringing one of the arthritis help lines for a chat? Arthritis Care have one I believe.
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Date: 21.05.2013
From: Neil
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
Hi all, Thanks for your comments. Normally I can handle the pain but for the past month i've been on steriod tablets given to me to work alongside the MTX but I haven't taken them as you know and have carried on with my Sulphalazine. Now the course of steriod is finished the past three days has been a nightmare, my ankle is alway swollen but the past three days it's so painful when walking it's unbearable. I think i'm worried about the side effects a lot with MTX and a friend of mine is on it and has advised me to steer clear of it. She said you aren't allowed out in the sun light (Although we get none in the UK lol) and you are advised to not drink alcohol, which isn't a big deal and the hair loss is a worry, but i'm 32 with three children and I don't want this impacting on my life too much. Fair enough when i'm older but i'm not ready to give up the fight as yet. I've seen what ankylosing spondylitis has done to my dad and he let it beat him and he has no quality of life now and I said to myself I wont let the same happen to me. Maybe a call to the Arthritis help line is what I need as I do need to talk to someone?
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Date: 21.05.2013
From: rhona
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
Hi Neil, I will just say with regards to the methetroxate i have never had any hair loss and i can still have a few glasses of wine a week if i feel like it and if i go abroad i do go out in the sun although i prefer the shade and i just wear a hat and a high factor cream. I have also read that antibiotics can help your type of arthritis but it would be an idea to talk to someone about this.
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Date: 21.05.2013
From: Colin W
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
hi Neil , realy need to be careful what advice you take , Methotrexate is take in low dose for those of us with arthritis so the side effects are not the same as when its used to treat cancer a lot of us here have been on Methotrexate a very long time , myself 15 years & dont get any hair loss & you wont have problems with the sun & can drink in moderation but without it you are doing to have problems & risking joint damage which you are getting now & once those joints are damaged there is very little apart from replacement or fusing them if you can stop the joint damage why risk it by not taking the drugs ,
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Date: 23.05.2013
From: Amelia
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
Hi Neil, have you or anyone else here tried patches or topical applications to help with pain? Just a suggestion. Also, if anyone else has tried it, which ones worked best or didn't help at all?
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Date: 24.05.2013
From: Sean
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Subject: Re: Reactive Arthritis - Ankle pain/swelling.
Hi Neil - is your reactive arthritis caused by an infection or is it unknown. My arthritis AS is a form of "so called" reactive arthritis and is partly caused by Gut bacteria that repeatedly breech the gastrointestinal tract and trigger antibodies.
I manage mine with diet, supplements and currently having good success dampening inflammation - killing the bugs (when I get it) with temporary fasting, pomegranate juice, probiotic goat milk yogurt and turmeric. You may have seen this in the press also - http://m.guardian.co.uk/society/2013/may/12/back-pain-ask-doctor-antibiotics Hope you can find some relief soon.
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