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Rank: Member
Groups: Registered
Joined: 3/2/2010
Posts: 14
Location: West Bromwich
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 Hello to all members hope someone can help me! Is there anyone on the new ANTI TNF drugs? If there is can you give me some information about it and how you feel now is there any improvement!! Sharon -D
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hello again Sharon I have just posted a message on the new members thread! Yes, I'm on anti tnf, actually I'm on my second after the first one became unresponsive. I started on Infliximab (by infusion) seven years ago and it was a miracle drug. I felt as though I had got my life back again. The disease went into remission (although by this time I had severe joint damage so was in pain from that) and I really thought I had hit the jackpot. Nine or so months later the honeymoon ended when the drug started to fail. I was considered for a second drug, Enbrel, taken in combination with Methotrexate and I have been on that for 6 years. For me it isn't wonderful, but better than nothing at all! The time is fast approaching when I may need to be considered for an alternative to anti-tnf. Some people do extremely well on these and it has been found that the earlier these drugs are started the less chance of long term joint damage occurring. There are different drugs available and these are normally discussed with you and your rheumy team before the process begins. Have you gone through the DMARDs that are available? Everyone is very different in how they react and cope with different treatments and what is great for one just doesn't work for another. There is quite a bit of discussion about different drug therapies on the 'Drugs' thread; you might find some useful information there. Take care Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sharon,
I am on Humira. I've had RA for 9 years and tried various DMARDs, on their own and in combinations, and started on humira last year.
It is one injection every two weeks which I do myself with the humira pen, very easy.
It has helped me a lot,and I have nowhere near as much swelling as I used to have. I also take mtx 15mg.
Hope you can get onto the anti-tnf soon.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Sharon, I`m on humira, for almost thre years now, having tried and failed on various DMARDs and combinations of DMARDs. At first I took humira in combo with MTX, but when that caused me respiratory problems, my rheumy was happy for me to continue with humira on its own. It has made a considerable difference to my quality of life, and works just as well for me as it did with the MTX. The injection is fortnightly, via an epi-pen, which stings for a few seconds, but no more than that. I haven`t had any side effects from it so far, touch wood!! Hope this helps, Kathlen x
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Rank: Member
Groups: Registered
Joined: 3/2/2010
Posts: 14
Location: West Bromwich
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LynW wrote:Hello again Sharon
I have just posted a message on the new members thread!
Yes, I'm on anti tnf, actually I'm on my second after the first one became unresponsive. I started on Infliximab (by infusion) seven years ago and it was a miracle drug. I felt as though I had got my life back again. The disease went into remission (although by this time I had severe joint damage so was in pain from that) and I really thought I had hit the jackpot. Nine or so months later the honeymoon ended when the drug started to fail. I was considered for a second drug, Enbrel, taken in combination with Methotrexate and I have been on that for 6 years. For me it isn't wonderful, but better than nothing at all! The time is fast approaching when I may need to be considered for an alternative to anti-tnf. Some people do extremely well on these and it has been found that the earlier these drugs are started the less chance of long term joint damage occurring.
There are different drugs available and these are normally discussed with you and your rheumy team before the process begins. Have you gone through the DMARDs that are available? Everyone is very different in how they react and cope with different treatments and what is great for one just doesn't work for another. There is quite a bit of discussion about different drug therapies on the 'Drugs' thread; you might find some useful information there.
Take care
Lyn x Hello Lyn Thanks for answering my question, I am taling steroid everyday, Leflulonmide, and methrotrexate. I had not been to bad up until Jan when it returned in my shoulder, could not stand pain so nurse gave me injection. Not been to bad last few weeks but my right foot reallyn bad now, had injectionin that last week. Walking with stick now. The hosp want me to have ANTI TNF but can you believe it I had hysterctomy 2 years ago the tumours on my ovaries where boarder line!!! They said it was like I was having a little baby. I'm not sure what to do about having the drug, worried about the side effects. Thanks Sharon
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Rank: Member
Groups: Registered
Joined: 3/2/2010
Posts: 14
Location: West Bromwich
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Kathleen_C wrote:Hi Sharon,
I`m on humira, for almost thre years now, having tried and failed on various DMARDs and combinations of DMARDs. At first I took humira in combo with MTX, but when that caused me respiratory problems, my rheumy was happy for me to continue with humira on its own. It has made a considerable difference to my quality of life, and works just as well for me as it did with the MTX.
The injection is fortnightly, via an epi-pen, which stings for a few seconds, but no more than that. I haven`t had any side effects from it so far, touch wood!!
Hope this helps,
Kathlen x Hello Kathleen Thanks for answering me. They have offered me ANTI TNF at hosp but I had tumours on my ovaries 2 years ago and had to have hysterectomy so not sure at the moment what to do. Its getting worse for me now, I have had it for 8 years, you think you adapt to it then suddenly for no reason goes worse. Hope you are feeling ok XXX Sharon - D
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Rank: Member
Groups: Registered
Joined: 3/2/2010
Posts: 14
Location: West Bromwich
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dorat wrote:Hi Sharon,
I am on Humira. I've had RA for 9 years and tried various DMARDs, on their own and in combinations, and started on humira last year.
It is one injection every two weeks which I do myself with the humira pen, very easy.
It has helped me a lot,and I have nowhere near as much swelling as I used to have. I also take mtx 15mg.
Hope you can get onto the anti-tnf soon.
Doreen xx Hello Doreen I have been offered the anti tnf but not sure at the moment what to do. Had other problems as well so got to think of side effects. Have you had any side effects from it. Im worried about that part of it will not mind injecting myself we suffer pain any way whats a little more hey!!! Love Sharon
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sharon,
I was worried about side effects too, and still do, but so far I have had no side effects at all from the Humira.
This doesn't mean that you won't have any, we all react differently, neither does it mean that I won't get any in the future!
When I was wondering whether to take Humira I decided that all the drugs I had already been on also have long lists of side effects so really the humira is not much more of a risk.
As long as you have the blood tests for monitoring, anything untoward will be picked up fairly quickly. The one problem with the anti-tnfs is that there is no data for long term use as they have only been around for a few years.
In the end I decided the risk was worth taking for a better quality of life, and just have to hope I made the right decision!
Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sharon I think the answer actually lies with your rheumy team! If they feel that the current treatment is not benefiting you any more and think it is time to move forward with a new therapy then the answer is yes, you should go for the anti-tnf. They wouldn't be offering it to you if it wasn't appropriate; many people have an uphill struggle to get onto this therapy! Although the final decision will be yours to make, would it be wise not to take the advice of a rheumatologist who knows the disease and you and possibly incur months or years of irreparable joint damage? As Doreen says all drugs have side effects, lists as long as your arms (in particular Methotrexate and steroids!) in some cases, the anti-tnfs are no different. At the end of the day it comes down to suffering the effects of the worsening RA or trying something new which may give you a much better quality of life. For me, I was too ill not to take the decision to go ahead but everyone's different. Side effects come as an unwelcome attachment but they are mainly rare and infrequently serious. Lyn x
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