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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Sulfasalazine = fail - I'm badly allergic to it. MTX = partial fail. I went up to 17.5mg, got lots of mouth ulcers, diarrhoea and not a lot of benefit. It held the RA at bay but didn't improve it. The RA still spread to my knees, wrists, feet, shoulders. They reduced my MTX to 15mg a few weeks ago because of the sores/ulcers but I had to have a break after a bad cold/chest infaction. I took my second dose of 15mg after the break last night and for the first time in over 6 months I had a very bad reaction to it. I ended up sitting in a cool bath for 15 minutes to cool down after my body decided to try and reject it by any and all means necessary if you know what I mean. My back was literally dripping with sweat. I've been through this before with something else and I know it's the body's way of treating something as a poison so to say I'm a little concerned is probably understating it. Tomorrow they start me on Leflunomide as a top up to the MTX. I can't say I'm looking forward to it. I'm sick of this now an I was only diagnosed last year. 
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Oh you poor thing and I can imagine you will be nervous about adding in another drug after
your reaction last night. This sounds quite severe I think a call to your GP and Rhummy
nurse would be in order.
Let us know what they say and thinking of you
Rose
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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 Rose
Sorry you are having such a bad time with the drugs. I can only sympathise with you having had a similar experience myself. I failed on MTX and Sulp but found the Leflunomide to be okay with no side effects. It was only when they tried to mix it with Sulph that I had a bad reaction and came out in a rash from head to foot. I am now on Enbrel and not enjoying that much.
Hope things improve for you.
Louise
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Mairead-I really do feel for you, I'm not surprised you're dreading starting something else. However this may just be the one for you--got everything crossed that it is. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi
Hope your feeling bit better today must have been really scarey having a reaction likethat! No wonder your nervous about starting another drug..Im taking methotrexate injections 20mg at the mo but due to start either sulph or lefluonomide as well soon and feeling bit apprehensive about that!
Fingers crossed it goes well please keep in touch and let us know love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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How awful for you.
I'm no expert about these things, but if I was you after having such a reaction to the MTX I would just ring my GP or specialist nurse just to check. I don't want to alarm you, l may be talking a load of nonsense but a quick call for reassurance won't hurt anyone.
Paula
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Mairead, So sorry you had such a bad reaction to the MTX - it`s so very demoralising to have to try all these drugs until you find the one that works. Hope the leflunomide brings some relief for you. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Mairead,
really sorry to hear that you had a bad reaction,
was wondering if you had contacted your Rheumy Nurse or GP too.
i know it's scary at the thought of mixing drugs ... i was terrified of starting the Methotrexate alone and wondering if i will have to add to it soon.
come back and let us know how you are doing.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Mairead, how frightening for you. Please just don't accept that you've got to stick to the metho. It sounds like a horrendous reaction, please tell your consultant about it before taking any more.
Julie xx
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Rank: Advanced Member Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Hi all and thanks for the sympathy and encouragement. I'm off to the rheumy nurse tomorrow for them to start me on the Leflunamide. I have a list of everything that's happened over the last five weeks since I saw her and I'll be sure to tell her about last night. The drug I had a similar reaction to was an anti-depressant many years ago when I was going through a rough patch at work. I only took one dose and had the same reaction - incredible heat/flush, severe sweating, pounding head, confusion, vertigo, shaking and a long time spent on the loo with my head in the sink as my body tried to get it out asap. Last night was the same with the addition of an incredible thirst. I did recover very quickly after I had the sense to force some watery squash down. I just can't figure out why, after 6 months of taking MTX, this would happen? Unless it's my body saying "enough". I'll see what they say tomorrow and let you all know. Thanks again  
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Rank: Advanced Member Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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Well I'm off the MTX. They don't like the fact it hasn't done a fat lot and they're not at all happy about the incident on Sunday so no more MTX for me.
I start 10mg of leflunomide tonight. They're starting me on a low dose due to my recent history of allergies, lack of response and bad reactions but if I do ok they'll bump me up to 20mg if necessary.
Now I play the waiting game again and hope I don't flare up worse than I already am before it (hopefully) kicks in. At the moment all finger joitns, knuckles, wrists, left knee, both big toe joints, balls of both feet and ankles, both shoulders are affected and I'm having problems walking.
Ho hum!
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Rank: Advanced Member Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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So I've flared up something vicious after stopping the MTX. I rescheduled my rheumy nurse appointment and saw her yesterday. Now I'm on steroids to reduce the flare so I can do normal things like cook, wash my hair and work! Yesterday I had a senior Dr and my consultant check me out they were so concerned. They were checking to see if I'd had another bad reaction and checking temperatrure, symptoms, BP, bloods etc. They've bumped up my Lef dose to 20mg starting today. They're already talking about anti TNFs in a month's time. So far nothing's worked in over a year  Oh, and my boiler blew up Sunday so no heating/hot water this week. I've one gas fire and 2 wee little electric heaters which hasn't helped matters.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
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flw93 wrote:Hi Rose
Sorry you are having such a bad time with the drugs. I can only sympathise with you having had a similar experience myself. I failed on MTX and Sulp but found the Leflunomide to be okay with no side effects. It was only when they tried to mix it with Sulph that I had a bad reaction and came out in a rash from head to foot. I am now on Enbrel and not enjoying that much.
Hope things improve for you.
Louise Hello Louise Are you on leflunomide and enbrel ??? I take enbrel and mtx injections and the specialist wants to add leflunomide 10mgs per day into the mix. Like everyone very scared adding another med into the mix. Belinda Treat others how you wish to be treated!!
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Mairead,
Sorry you have had such a bad time . I hope the lefln increase will help you
I certainly know how you feel.
Good luck let us know how you do.
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hi Mairead Sorry to hear of your bad reaction to the drugs. I just wanted to say that i wad diagnosed in Feb 2009 and still i am not under control. After 4 DMARD's i am starting enbrel anti tnf in January to be taken along with MTX. I know from reading some of the other posts that it is often about 2 years before the right treatment for you is found so keep smiling I wish you the very best with your new treatment. Love Shirley x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Mairead, You certainly have had one awful reaction to this drug, at least you got rid of it quickly albeit unpleasant. Really hope this one works for you. I know how you feel with all your joints hurting, I can remember it so well. Try soaking in a warm bath and Pernaton green lipped muscle gel is really good for sore joints. I used it lots when I was bad. Take care, Lorna
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