Arava and Sulfasalazine: Hi Everyone, I have been... - NRAS

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Arava and Sulfasalazine

Pat64 profile image
4 Replies

Hi Everyone,

I have been taking Sulfasalazine for three years now but it has become less effective as my RD has progressed. I'm about to start Arava as well but from reading all the posts on this site, It does appear to be a less common drug combination. I would love to hear from anyone who has been taking both Arava and Sulfa together, how effective they have been, if they take them together or space out the dosage and if there have been any unusual side effects. Thanks.

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Pat64
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medway-lady profile image
medway-lady

I just take Arava (Leflodamide) and its put my RA into remission. But after a few days it was agony the pain in my wrists, shoulders and knees was gob smackingly bad. , cold compresses and hot ones and not moving; it seemed as though this was an awful drug. BUT I was advised to keep on with it for a month or 6 weeks and be brave. I did, amongst all the angst and lots of chocolate to consume, whilst holding the tv remote control. ANYWAY then one morning I woke up the brain fog had gone I leapt out of bed (literally) and no pain. I walked around the block and felt better. Over the course of the next 3 months the pian went completely the swelling went and if I did not tell anyone I have RA, no one would know. Although you must be careful with it if you get a bug its a visit to the GP and for me at least antibiotics. But its not had any further side effects its left my hair alone and is compatible with Riveroxaban which is my priority medication as my RA caused pulmonary embolisms and dvt's in 2014. For me the risk with Arava is far outweighed by its benefits. I was given Arava, as the MTX affected my hair very badly its now normal like my life.

And please if someone tries to frighten you with any side effects story about Arava do remember it can be washed out the system

Pat64 profile image
Pat64 in reply to medway-lady

Thank you for replying to my post. It is always good to have positive feedback about drugs and to know that Arava has worked well for you. Could you please tell me if you started the drug early in your diagnosis, before RA had the chance to progress? I was diagnosed 3 years ago with a positive RF and anticcp but Sulfasalazine has never fully controlled my disease. I continue to have swelling and stiffness in my hands, with some joint erosions so I was wondering if Arava, which is about to be added, is only effective for milder forms of the disease and not those who have had it for some time.

medway-lady profile image
medway-lady in reply to Pat64

I went to the GP around 3 years ago as my right hand hurt, had odd aches and pains etc and had a positive RA blood test and because I had insurance I saw a consultant that week . More tests and on Meloxicam and MTX with a steroid jab. After an MRI and more tests I was advised to be treated aggressively as my RA was early in but an aggressive form however it would prevent damage and my prognosis was good. But the MTX had a horrific effect on my hair and it was stopped. By then the RA (and its unusual) had affected my blood and so its my belief the MTX did little anyway. My consultant said that Arava is next choice because of blood issues and compatibility with that medication. I've taken it for over 20 months and believe its actually great. Its more expensive I think than MTX , and probably more toxic, but its about risk. I don't know about milder forms as was treated early in order to prevent damage and its worth remembering this drug is very widely used in the USA where its produced. My options were limited by the Riveroxaban which always has priority, but to be honest what have you got to loose if it doesn't work its onto something else but if it does it'll be great.

rawillbebeaten profile image
rawillbebeaten

Hi Pat,

Sulfasalazine was one of the first drugs I was put on in 2002. I'm still on it, with Hydroxycloroquine and prednisolone, but other drugs have changed - I'm off Enbrel and Cyclosporine (Nerol)

- I was on Arava for over a year as an alternative, but it wasn't effective for me and seemed to push my blood pressure up. I took them together in the morning and I also take 1000mg Sulfasalazine at night. I stopped Arava in May, and to be honest I was glad to stop it, can't really say why, I just didn't feel as well on it.

I will be having a 2nd course of Rituximab soon. The one in Feb seems to have damped the RA down again. CRP and ESR are almost normal, which they haven't been for the 10 years I've been seeing my current consultant.

I hope this combination works for you, as with all drugs it will take a few months to see if it does. The possible, if rare, side effects on the leaflet are scary but that's the same when you read any of the information you get.

If things aren't going in the right way after a couple of months then I would push to change again.

I hope this is helpful

Michele

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