Week 5 and alls well

margaretschild · 13. Jan 2010, 06:03

Week 5 of my Anti TNF and I can honestly say I have not felt this well for quite a few years.

I did stop it for a few days when I had a cold, and pain began to come back, but since re-starting all is good.

If I was not on this drug, I would not believe the results

Linda

barbara12 · 13. Jan 2010, 06:08

Hi Linda,
I have OA just wondering what TNF is I keep seeing it posted but not sure what it is.
Glad it is working for you.
Take care Barbara x

margaretschild · 13. Jan 2010, 06:32

barbara12 wrote:

Hi Linda,
I have OA just wondering what TNF is I keep seeing it posted but not sure what it is.
Glad it is working for you.
Take care Barbara x

Hi Barbara

If I have got this right, TNF is a protein in the joints hence the name of the drug Anti TNF. It only works in about 70% of people so to be honest I am waiting for the side effects or bad blood results!

I am on it for 6 months before a review, or until my results are bad.

It is an injection that you take either weekly or fortnightly, i take mine weekly, my memory would not cope with fortnightly Lol

I have RA by the way

Not sure about OA but you could ask your GP

You have to have a chest x-ray, a blood test for TB and 2 physical assessments, apparently I passed with flying colours (not sure if that is good or bad :? )

It then depends if your authority has the funds, I have been told on numerous occasions how expensive it is.

The name of the drug is Enbrel

Hope this helps a bit

Linda

c4thyg · 13. Jan 2010, 06:39

I was on enbrel but have since switched to humira. I actually want to go back to enbrel as it is weekly or biweekly injections meaning that if I get an infection it hasn't got the same amount of time to go mad on weekly injections. I was really ill for 4 weeks before Christmas and i think it was because I got an infection days after injecting and my immune system was suppressed for 2 weeks before I could fight it off!!

Anti-TNF (tumor necrosis factor) only works on inflammatory conditions. TNF is part of the inflammatory signalling pathway which is why blocking it reduces inflammation. I take it for arthritis, psoriasis and ITP. I think it's great for arthritis and haven't had any serious side effects. Humira however doesn't seem to work on ITP whereas enbrel did so that;s another reason why I might switch back.

wallysatt · 13. Jan 2010, 06:40

Hi Linda,

What anti-TNF are you on? I have been on all three since 2002 and now I'm on rituximab.

I found it amazing. I was on infliximab first and I was walking really well within days.

I hope it continues to work for you.

Sally.

elnafinn · 13. Jan 2010, 06:45

Such good news to read, Linda!

Hope you keep feeling this well for a very, very long time.

Luv
Elna x

barbara12 · 13. Jan 2010, 06:50

Thanks Linda
Thats a big help, thank god for this forum.
You carry on doing well on it
Love Barbara x

margaretschild · 13. Jan 2010, 06:56

Thank you all for your good wishes, the drug is enbrel, it is the only one they have tried with me, I hope I don't have to change, when I was on MXT I had all sorts of probs, they took me off it in the end coz of Liver probs.

Keep warm

Linda

marionlouise · 13. Jan 2010, 07:00

wallysatt wrote:

Hi Linda,

What anti-TNF are you on? I have been on all three since 2002 and now I'm on rituximab.

I found it amazing. I was on infliximab first and I was walking really well within days.

I hope it continues to work for you.

Sally.

hi iv been on rituximab since december and iv found it to be a very slow starter , been told it coukd take 2 months to work.

How long have you been on it and is it working for you yet ?

wallysatt · 13. Jan 2010, 07:21

marionlouise wrote:

wallysatt wrote:

Hi Linda,

What anti-TNF are you on? I have been on all three since 2002 and now I'm on rituximab.

I found it amazing. I was on infliximab first and I was walking really well within days.

I hope it continues to work for you.

Sally.

hi iv been on rituximab since december and iv found it to be a very slow starter , been told it coukd take 2 months to work. How long have you been on it and is it working for you yet ?

I started on it in June 2008 and then had another dose in December 2008 and then again in July 2009. I need another dose now but they can't get me in which is really annoying because I go on holiday on Saturday. It probably took over a year for it to work for me but then I had a knee replacement in May so that could have a lot to do with it. I'm apparently having one more go at it them will be going onto something else.

I know it can take a few months to work though.

I hope you get some relief soon and keep positive.

Sally.

marionlouise · 13. Jan 2010, 09:57

wallysatt wrote:

marionlouise wrote:

wallysatt wrote:

Hi Linda,

What anti-TNF are you on? I have been on all three since 2002 and now I'm on rituximab.

I found it amazing. I was on infliximab first and I was walking really well within days.

I hope it continues to work for you.

Sally.

hi iv been on rituximab since december and iv found it to be a very slow starter , been told it coukd take 2 months to work. How long have you been on it and is it working for you yet ?[/quo
I started on it in June 2008 and then had another dose in December 2008 and then again in July 2009. I need another dose now but they can't get me in which is really annoying because I go on holiday on Saturday. It probably took over a year for it to work for me but then I had a knee replacement in May so that could have a lot to do with it. I'm apparently having one more go at it them will be going onto something else.

I know it can take a few months to work though.

I hope you get some relief soon and keep positive.

Sally.

Thanks Sally I really am trying to stay positive, my count has gone down by a third so hopefully it will keep on going down down down . I'm sorry to hear they cant fit you in before your holiday thats really bad , but I hope you can still manage to enjoy your holiday .

dorcas · 13. Jan 2010, 10:27

Hi Linda,

Really good to hear how well you are doing on your anti TNF! hope it continues to be of benefit and you get great results from it. ':D'

I've been on Humira for five years almost, and in combo with Mtx injection for a year.

But rheummy's considering a change possibly to remicade as arther is not under control just now; he's waiting until March to see if things settle as he thinks this flare might be caused by stress (work related).............but I'll have to wait and see.

glad about your news! keep well. Iris x

margaretschild · 13. Jan 2010, 11:02

dorcas wrote:

Hi Linda,

Really good to hear how well you are doing on your anti TNF! hope it continues to be of benefit and you get great results from it. ':D'

I've been on Humira for five years almost, and in combo with Mtx injection for a year.

But rheummy's considering a change possibly to remicade as arther is not under control just now; he's waiting until March to see if things settle as he thinks this flare might be caused by stress (work related).............but I'll have to wait and see.

glad about your news! keep well. Iris x

Thank you Iris, it is very interesting finding out about all the different kinds of TNF. Hope your arthur is under control soon.

Keep Warm
Linda

elnafinn · 16. Feb 2010, 04:19

Bumped up for Colin
Love
Elna x

dolittle · 16. Feb 2010, 05:11

I've been on Humira now for about 6 weeks - it scares the pants off me when I read the blurb but ..........

The day after the first injection I felt more mentally alive than I have for years. Yesterday I climbed two flights of stairs (I have an ankle which needs fusing) - I haven't done that for such a long time. It was a great, great feeling.
Dolittle

Week 5 and alls well

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