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Please advise on TNF blockers

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Rheumatoid Arthritis
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Posted 4/18/2011 2:50 PM (GMT 0)
Hi everyone,

I am a new member and hope to get some advice...

Short background: I'm 28 and have been diagnosed with RA since 2000. I was under therapy with methotrexaye (along other drugs such as sulfazalazine, quensil, costicosterids etc). Two years back, i went to see another doctor and ask for another opinion as i wasnt in good shape at all. He changed my therapy to Arava instead, with the justification that my body does not react anymore to methotrexate because of the long -period use. My joints were better in the begining, until i started feeling pain and stiffness in other joints (un-affected previously). The 'new' doctor said its normal that the disease affects different joints at times, but i just couldnt accept the fact that there is no way to control the disease. Went back to my 'first' doctor - he proposed i start using one of TNF blockers - Enbrel.

I read about Enbrel and the side effects, and i am kind of scared to start with that therapy (especialy that i am under long-distance therapy!). Would appreciate if any of you could share your experience with any of the TNF blockers.

Thanks!

Posted 4/19/2011 2:40 AM (GMT 0)
Hi, I'm on humira and really love it.
The positives of TNF blockers are if they work for you they really work, you feel 10 years younger, gives you your life back. I wake with no pain and can manage so much more...
but the negatives are they wreck your immunity. Within the first 3 months of starting humira I caught pneumonia. You have to go on anti biotics with the slightest infection. I learnt the hard way. I also seem to be more prone to thrush and its harder to get rid of.
I still feel the positives far out way the negatives. I'm just much more alert to infections, however minor. Even getting my teeth fixed, slightest infection and I'm on anti biotics...pain but worth the gain.
I've been back working. I can walk distances again, I can run around with my kids again, I feel stronger, not as tired. Still have to pace myself but its a whole new lease of life.
So thats some of the positives and negatives for you. I've also been on orencia but it didn't work as well as the humira. Partial relief only.
I think despite the risks its worth a try, because if it works for you its just magic, golitho
Posted 4/19/2011 3:02 AM (GMT 0)
Hi I have been on Humira around 7 months now. It's great for me, as Golitho said it's magic. I was scared of the side effects at the begining also but my grandma had RA too and I remember her deformities.. I will do everything to stay as long as I can in shape. I just want to have normal life and I know that Humira is stopping the progression of the joint demage - -what is the most important thing, so I think is worth a try. I take fish oil daily and so far I think it helps my immune system very well. I didn't have any problems so far. Really can't say enough good things about Humira I hope it will work as long as possible for me! And I wish you all the best!!!!
Posted 4/19/2011 2:50 PM (GMT 0)
Dear Golitho and Bstrong,

Thank you for the encouragement and the positive notes. I guess i dont have another choice anyway, but trying if it will work for me too. The doctor said that with the level of development of the disease in 4 - 5 years i may not be able to do some basic functions with my hands - such as writing using a pen - unless i start with full dosage of therapy now!

I hope it will work well for me too!

Cheers!
Posted 4/21/2011 2:47 AM (GMT 0)
Once again all the best to you and please come back here to tell us how you are doing. I remember my posts here at the beggining I was asking similar questions, I had similar concerns :) I am still afraid of side effects of the medications, you never know how long the treatment will work but we all wish it will be as long as possible and we must believe in it! But waiting in our situation and doing nothing is the worst thing we can do. RA is not waiting, doesn't want to stop progression by itself, we need to stop it with the medications.

 I was wondering why I need to take that many meds...and then I remember reading one of the RA articles which was saying that treatment of RA needs to be aggresive from the beggining.

Good Luck!!!

Posted 4/21/2011 8:59 PM (GMT 0)
I've had no issues as a result of the Enbrel, which I've been using for well over a year now. I'm quite cautious and always stop whenever I've had a chest infection or feel generally unwell - although this isn't necessarily the best idea.

It may have increased the frequency of cold/flu like symptoms, and infections do take noticeably longer to be fought off - but I can't fairly attribute this solely to Enbrel.

Some of the more serious side effects concern me, and I'm not OK with the idea of long-term Enbrel treatment. When I think I'm in a position to cease Enbrel without affecting my capacity to work, I probably will do.

In terms of efficacy, Enbrel is very good - I know several people who've had success with this, and in general anyone I know whose used biologics (i.e. Enbrel, Humira, Remicade) generally have positive things to say about it. My sister met someone in hospital who had facial skin cancer and had required significant surgery (potentially as a result of a combination of Enbrel and UV therapy for Psoriasis) and was therefore not allowed to continue
anti-TNF treatment. Apparently, her main disappointment was not that the treatment had given her Cancer, but that she couldn't carry on taking it as a result of this. The great benefits in this case come with significant risks, I suppose you have to evaluate whether it's worth it in each individual case.
Posted 5/1/2011 11:22 PM (GMT 0)
I have had RA for 12 years now and have been using Enbrel for 4 years. Previously I had been on Sulphasazine, Methotrexate, Leflunomide and steroids, so pretty much everything else was tried and eventually failed! Enbrel gave me my life back, very quickly -amazingly I was feeling a lot better within a week! I have not found myself any more vulnerable to infections. I am careful to keep away from people with illnesses but I merely do this as a caution rather than from experience. I can be totally positive about Enbrel - without it I don't know what state I would be in by now. I now have little if no pain, in particular my hands have straightened significantly (although sadly not my feet) and I no longer have that awful fatigue. The disease has been pretty well stopped in its tracks. So, BE NOT AFRAID. Attend all your regular check-ups, make sure you have all the blood tests done as necessary. and, I hope, look forward to the radical improvement in your condition such as I experienced. For me it is a miracle. Good luck, stay strong!
Posted 5/2/2011 5:31 AM (GMT 0)
Tnf drugs make it possible to live again. Go for it.
Posted 5/2/2011 5:31 AM (GMT 0)
Tnf drugs make it possible to live again. Go for it.
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