Anti TNF

margaretschild

Hello all, I have been a member on here for quite a while but stopped posting when the RA made me a little depressed and everyone on here was not - well lets say positive.

Anyway after being on methatrexate sorry for the spelling! and hating it I tried to take no medication at all, I know not a good idea. However I did read in a news paper about an injection, so I asked my Consultant about it and hey prosto I started it on Monday this week.

It is amazing! the swelling has almost gone in my hands, I almost skip out of bed each morning, and what is really interesting I am hungry in the mornings and need breakfast. I hated eating in the mornings and as the pain was a little severe it was better not to eat.

Is anybody else on this? How is it going?

I would be really interested to see if anybody else is so positive about this medication.

margaretschild

delboy wrote:

I've been on Enbrel for about 2 years, initially is was brilliant but I fear that Arthur may be fighting back.

I know this is less than positive but for you it could be the Holy Grail and I hope that is the case.

Thank you for your reply, as I know nobody else personally with RA I cannot ask anybody anything your reply may not be 100% positive but everyone has different experience and I would like to know some of them.
Sorry to hear you are having problems with Enbrel delboy, but I live in hope!

margaretschild

pixyandfaries wrote:

im sorry you didnt feel you could post for so long, i know i did go away while i had a bad time but slinked back in in a few days, it can be hard to be happy when your so much in pain or again to give to others who are suffering when you are as well , what is the injection you have ?

I just felt that when I tried to be really positive and share my good experiences, nobody bothered to reply or really wanted to know what I had to say, and as you say when you are feeling low it is sometimes better not to read others problems as you cannot handle them. This may sound selfish as I know a trouble shared is a trouble halved, but I think most of the people on here know about the bad side of RA etc. and what I tried to do was be on the up side of it all.

Anyway I am on Enbrel it's a bit like an epi-pen dead easy to use although it stings when you do it (I now have a full appreciation of what people with Diabetes have to go through every single day of their lives).

I cannot believe the difference it has made in only a few days, but delboy has said that the RA just might fight back, we will just have to wait and see. Up till then I have my life back!

margaretschild

Hi Both,

Thanks for both of your replies, firstly delboy thanks for the info about fatigue this is a great problem for me especially being married to a workaholic! so far I have had one nights bad sleep, but last night I slept like a baby, but I am starting to whither a bit now so I am going to eat an early lunch and see if that helps or puts me to sleep!!! Lol

and to Faries I am sorry I did not notice of your full name and I am still getting used to this new forum. The injection is really easy, you do not see the needle, and if your school days were anything like mine, can you remember being stabbed by some horrible boy with a ball point pen? well it feels something like that and 10 seconds really isn't that long. Try reciting a poem or singing a song, then it's done.

My hospital staff were fantastic, showed me how to do the injections I have loads and loads of information, telephone numbers and I feel like I am being looked after.

My problem was making the decision to have this medication, after only 5 days I wonder what on earth I was worrying about.

margaretschild

Ah! got you Pixieanfaries - sorry

elnafinn

Hi Margaret

Welcome to the forum. On looking back I cannot see that you made any postings other than today. The forum can get a little depressing from time to time, but that is one of the reasons people post on here, as well as asking questions. Good news is posted too and there is the chitchat zone which is often very cheerful and fun, if you have the time and inclination.

I am pleased that these injections are suiting you. Long may that last.

I don't think I have ever been down on this forum, except when my mum was critically ill and I posted on the chitchat zone to let my cyber friends know why I was not posting and answering their pm's.

Look forward to seeing more postings from you,

Look after yourself,

Luv
Elna x

margaretschild

elnafinn wrote:

Hi Margaret

Welcome to the forum. On looking back I cannot see that you made any postings other than today. The forum can get a little depressing from time to time, but that is one of the reasons people post on here, as well as asking questions. Good news is posted too and there is the chitchat zone which is often very cheerful and fun, if you have the time and inclination.

I am pleased that these injections are suiting you. Long may that last.

I don't think I have ever been down on this forum, except when my mum was critically ill and I posted on the chitchat zone to let my cyber friends know why I was not posting and answering their pm's.

Look forward to seeing more postings from you,

Look after yourself,

Luv
Elna x

Hello Elna,

I do not want to upset anyone the things I wrote above were my findings while the RA was quite bad and I was struggling to not only deal with this but to understand what was happening to my body.

I most certainly did post on the site but it was probably about 3 or 4 years ago. There was no chitchat zone etc. This is much better.

Thank you for your kind wishes and I hope you have a wonderful Christmas and Good New Year

Take Care
Linda

gickygawky

Hi there Margaret!

Just thought you might like to hear that to date I have had a great deal of success with Enbrel. I have been on it since January and although it took 12 weeks to start working it has dramatically improved my condition. I have also been lucky enough not to have too many nasty side effects.

In September I also started taking Methotrexate and over the past few weeks I have felt the benefits of this combination and have started to suffer much less pain, stiffness and fatigue.

I hope that you will find your anti tnf treatment a success and start to feel more helathy shortly.

Arna x

margaretschild wrote:

Hello all, I have been a member on here for quite a while but stopped posting when the RA made me a little depressed and everyone on here was not - well lets say positive.

Anyway after being on methatrexate sorry for the spelling! and hating it I tried to take no medication at all, I know not a good idea. However I did read in a news paper about an injection, so I asked my Consultant about it and hey prosto I started it on Monday this week.

It is amazing! the swelling has almost gone in my hands, I almost skip out of bed each morning, and what is really interesting I am hungry in the mornings and need breakfast. I hated eating in the mornings and as the pain was a little severe it was better not to eat.

Is anybody else on this? How is it going?

I would be really interested to see if anybody else is so positive about this medication.

margaretschild

Hi Arna,

It really is good news to hear that you are doing well, long may that continue

errrr! Side affects? what side affects? it's early days yet and I have only had one injection so we will have to wait and see.

But so far I feel great!!!

Merry Christmas

Linda

gickygawky

Hi again Linda,
(Sorry I got your name wrong before )

There should be a list of possible side effects in your Enbrel pack, I can't remember what most of them are.

There have only been a couple of things that have been a small blip for me so far. One has been having a few more minor infections from having a lowered immune system. Things like mouth ulcers, cuts that don't heal etc. Now I carry antiseptic and bandaids everywhere and am much more careful about touching things while out and about eg, I don't touch the handrail on stairs at tube stations etc. I also brush my teeth alot and use strong mouthwash.

The other one was having an allergic reaction every time I injected. For a few months every time I injected, every place I had previously injected would swell up and itch like crazy. This has all stopped now and now i just have a localised itch at the injection site for a few hours.

I think there a a good handful of people on this site who also take anti tnf, hopefully they will be able to let you know of there experiences too as every body is different

Arna x

margaretschild

gickygawky wrote:

Hi again Linda,
(Sorry I got your name wrong before )

There should be a list of possible side effects in your Enbrel pack, I can't remember what most of them are.

There have only been a couple of things that have been a small blip for me so far. One has been having a few more minor infections from having a lowered immune system. Things like mouth ulcers, cuts that don't heal etc. Now I carry antiseptic and bandaids everywhere and am much more careful about touching things while out and about eg, I don't touch the handrail on stairs at tube stations etc. I also brush my teeth alot and use strong mouthwash.

The other one was having an allergic reaction every time I injected. For a few months every time I injected, every place I had previously injected would swell up and itch like crazy. This has all stopped now and now i just have a localised itch at the injection site for a few hours.

I think there a a good handful of people on this site who also take anti tnf, hopefully they will be able to let you know of there experiences too as every body is different

Arna x

Hi Arna,

Thanks for the tips, mouth ulcers etc I am used to, I used to take MXT, and my hair fell out, my mouth was always sore etc. I also like the tips on not touching things - makes a lot of sense to me. There is a list in the pack and I have been watching out for the bad ones. But so far nothing - not even at the site of the injection. As you say everybody is different, so fingers crossed - errrr if we can that is Lol

Don't worry about the name thing Margaret was my mothers name

Linda

skezier

Hi Linda,

Welcome back, though I am fairly new just talk too much I heard a lot of yeses there! :oops:

I hope you carry on missing the side effects, I am not on it and still just on the sulfa, which aren't really working, but there have been some really encouraging posts on it and with luck you will not get any problems with it.

Take care and stay warm, Cris x

ifeelninety

Margaret, Glad it has started well for you !

How long did it take you to get on it after your rheumy suggested it? My Rheumy put me forward at the beginning of November for screening for it, but i have not heard anything else since. I have tried 3 different dmars and unfortunatley none of them have been suitable for me.

The only thing that seems to work is the Depomedrone injections - but had 4 this year so far - but they keep me dancing Well sort of :roll:

Well hope you keep posting and all on the forum have a lovely Christmas ( and that unwanted visitor we call Arthur does not come calling )

margaretschild

Thank you all for your input (oh God! I sound like Johnny 5) it is really interesting to hear from different people about their experiences with or without the injections.

I asked my consultant about the injections in February when my liver objected strongly to Methatrexate. I went for my first tests about 2-3 months later I passed all of them with flying colours!!

I then had to make my mind up as to whether I wanted to go on the drug, I didn't want to waste money if it was not going to work or if my RA was not bad enough to warrent it. Anyway after another 2 steroid injections I decided that I needed something and as I hate MXT and had tried Sulfasalazine (please excuse spelling) it was my only option left. But it took me about 3 months to make up my mind. Silly really it's a no brainer.

I had my first i njection on Monday and so far all is good.

You have to have tried 2 different drugs before you can go onto enbrel, there is 2 types one taken once per week and one taken once per fortnight, I chose one per week, mainly coz I have a bad memory and do not want to forget and be back at square 1 .

Thank you for all your replies, I think I have found a few friends!

Merry Christmas to you all

Linda

margaretschild

delboy,

You are brave, I don't think I could have done this if I could see the needle (my hubby was very disapointed as he was hoping for a very large needle that he could stab me with, lovely man my hubby )

Do the side effects come on slowly the more drugs you take? I know this sounds a strange question but I think I expected them to be instant as it goes straight into the blood stream or where ever it goes.


Linda