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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I have just been taken off Leflunomide. I kept getting itchy hives rash on my legs and was having to take antihistamines a few hours after taking Leflunomide so the nurse advised me to stop. I had already moved to injectable Mtx because of side effects and then had to stop the injections too. I am beginning to despair and now have to wait until the 27th February with no dmards. I am panicking about joint damage, am in more and more pain and feel so frustrated that I seem to be so sensitive to these drugs. I wonder what they will try next and wonder if anyone else has had these issues with drugs. I feel really demoralised. Best wishes from Naomi.
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Rank: Newbie
Groups: Registered
Joined: 11/25/2011
Posts: 6
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Hi Naomi
I haven't had the same problems as you but I was allergic to sulpha and humira, mtx does nothing for my RA but no side effects, Golimumab(Simponi) gave me drug induced lupus, oral steroids make me throw up, steroid injections and infusions don't seem to work BUT enbrel seems to be working with no side effects other than a runny nose! They will find something that works. Can't you get an emergency appointment with your rheumy nurse? Feel free to message me if you want. Good luck,
Mary
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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So sorry to hear this Naomi - itching is absolutely no fun at all. I react to the mtx so take 3 antihistamine tabs every day to combat the effects but it's not really a good solution. I hope and pray they manage to find a suitable drug on the 27th - although, as you say, it's too long to wait when you are in pain. Have you had a depo injection in your bum to tide you over until you have the next lot of DMARDS? As the effects of the mtx usually last for around 6 weeks or so, you should be OK joint deterioration wise. Hope you manage to get something sorted out for pain relief - have you tried the GP yet?
Love Jeanxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Naomi
I am sorry you have had a reaction to your drugs and are feeling despondent.
Unfortunately I have had allergic reactions and have had to stop Leflumonide, Sulfasalazine, Humira, Enbrel and Rituximab. I also itch with Methotrexate but put up with it because it is the only drug I am on at the moment. I am waiting to try my 3rd Anti-TNF and am crossing my fingers that I will not have a reaction to this.
It really is just waiting to find the right ones for us, but as you say, it is worrying about joint damage in the meantime.
Definitely go for a depo injection if you can. I know there are scare mongers about having too many steroids but it really does help in the short term. I think we can all easily fall into depression when we are in pain and down so really trying anything is worth it.
I hope you get sorted soon.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Naomi. If you have only just stopped the mxt injs you will be ok until 27 feb. They stay in your system for about 6 weeks so try not to worry about it. Getting stressed about it will not help you. I agree with Jean, ask for a depo jab to see you through the next few weeks.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Naomi,
Sorry to hear you have had to stop the leflunamide.
Hang on in there, it's a slow process but you will eventually find a drug that works for you.
Love Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thank you for the replies everyone. In some ways I feel better knowing I'm not the only one that has these problems, though of course I wouldn't wish this on anyone. I actually stopped the Mtx about a week before Christmas and am really feeling the effects of having stopped it now (which ties in with what everyone has said about the 6 weeks). The Leflunomide, which has involved 2 false starts will hardly have had a chance to work as I have only had about 7 half doses altogether. I am pleased to say that when I phoned the hospital today they had already rescheduled my appointment for 2 weeks earlier than planned so I now only have to wait 10 days until 13th February. Thank goodness for that. I can cope with that (just). I will try to remain optimistic which is hard when one is in pain, but I know there are other people far worse off. I am in touch with some American women who have RA and am extremely grateful to have the NHS to rely on after hearing about people who have had to give up work and can't afford treatment. So I will keep plodding on, and hopefully get there in the end. X
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Naomi  Chin up ... things will get better. There are now so many medications available there will certainly be a combination that suits you. It is hard when you are in pain but remember joint damage doesn't happen over night. It can take years for arthritic changes to occur so don't worry about that for now! At some time or other many of us will have had negative responses to RA drugs one way, it's the nature of the disease unfortuantely. What is important is that you have adequate pain relief to get you you through a difficult time. Hope things improve soon, Lyn x
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