Anti TNF - is anybody else on this?

clarelouise1

Hi, My RA has so far failed to respond to Methotrexate, Sulphasalasine and my rheumatologist is considering putting me on anti-tnf injections when I go back next week. I'm a bit worried about this as the thought of injection myself is upsetting, is anybody on this? What are the side effects? I just don't know what to expect. I seem to keep losing hair on traditional methods? xx

joyful164

I wasn't responding to tablet form MTX because of stomach problems so I went on to injection form starting at 10mg. I am now on 20mg. Had the occasional steroid injection to help whilst getting use to MTX. Perhaps you need this.

Joy

clarelouise1

delboy wrote:

Hi Clare,

I'm on Enbrel that I self inject with a pre-filled syringe.

You will be taught how to give yourself the injection using a syringe or pen whatever method they use and I find that it is pretty easy to do and very little discomfort, I inject in my thigh but others use the stomach.

The only side effect I have is that it has caused my folliculitis to worsen but I can live with itchy follicles.

Others will be along to tell you their experiences but I would say to go for it and don't worry about injecting.

Thanks for coming back to me. Do you get any side effects from it? Does it cause bruising? I'm worried about wearing bikini etc as I go swimming a lot. Clare

clarelouise1

joyful164 wrote:

I wasn't responding to tablet form MTX because of stomach problems so I went on to injection form starting at 10mg. I am now on 20mg. Had the occasional steroid injection to help whilst getting use to MTX. Perhaps you need this.

Joy

Hiya Joy, thanks for coming back to me, I tolerated the MTx tablet form ok it was just the hair loss and it didn't put my RA into remission unfortunately. I've had the steroid injections but it didn't help that much and after a few injections have been left with a 'dent' in my lower back/bottom area. The rheumatologist is talking about putting me on ant-tnf as a last resort but I'm apprehensive about it x

woodbon

Hi, I've not got RA, but I've heard others mention them so I'm sure you'll get lots of advice.
Hope the new drugs help you!
Love Sue

c4thyg

I'm on humira but have also been on enbrel. I think they're fantastic. Both drugs work really well for arthur in my case, i'm going back onto enbrel because it also helps some of my other conditions.

As far as injecting is concerned, it gets easier with practise. I don't even think about it any more. I inject in my tummy as I've got plenty of excess there! I found that if I pinched the skin quite tight before inserting the needle I didn't feel it. Also, make sure you allow the drug to come to room temp before injecting. You can do it from the fridge but I found that it does sting a bit if it's still cold.

Side effects... lets see. I used to get a mild reddening around the injection site but after the first 3 or 4 injects that stopped happening. I occasionally bruise but that's because my blood doesn't clot very well. On the whole I would say that now I've been on it for a while there aren't any obvious side effects. I would also add that I don't take any painkillers any more, it's just that good.

I hope this answers some of your questions and good luck, I'm sure you'll be fine.

northumbrian

I have been on Humira for over 2 years. Wonderful it gave me my life back. I am just turned 60 and was laying a concrete drive today. I used to struggle on the stairs. No side effects to speak of. As for the injection you just have to do what you have to do, anything for two weeks relief. I hope it works for you.

dorcas

Hi Clare!
I see you've had lots of good advice already.

I've been on two of the anti tnf's, Enbrel and Humira and self inject Mtx as well.

I stopped Enbrel after only two weeks as I had a reaction to it...redness, itching bruising, and a drop in white cell count. I was really sad to stop as it was so very effective almost immediately in dealing with arther! these injections were not painful at all but it does take a bit of getting used to injecting yourself

I then moved on to Humira but recently had to stop the injections, after 5yrs of being on it, because my body started to produce antibodies that stopped it working! I'm now waiting to start on my third...Infliximab!
The Humira stings a bit but I found if you make sure there's no fluid on the tip of the needle it's ok....I also inject on the stomach...I just found it a whole lot easier than the thigh and I also inject the Mtx there as well.
You just have to make sure you don't inject into the same bit twice in a row (rotate the injection site.. they call it). I used to mark where I injected on a calendar so's I wouldn't forget!

I have not had any problems injecting Humira or Mtx or any bruising.

As far as starting on anti tnfs I would say you go for it girl. you have nothing to lose by trying and you may find it hits arther on the head and gives you back some 'normal' activity.
You will be well supported, taught to inject and not left to inject yourself until you're happy with doing it. You will also be carefully monitored for any problems...... so don't worry about it!

Iris x

clarelouise1

dorcas wrote:

Hi Clare!
I see you've had lots of good advice already.

I've been on two of the anti tnf's, Enbrel and Humira and self inject Mtx as well.

I stopped Enbrel after only two weeks as I had a reaction to it...redness, itching bruising, and a drop in white cell count. I was really sad to stop as it was so very effective almost immediately in dealing with arther! these injections were not painful at all but it does take a bit of getting used to injecting yourself

I then moved on to Humira but recently had to stop the injections, after 5yrs of being on it, because my body started to produce antibodies that stopped it working! I'm now waiting to start on my third...Infliximab!
The Humira stings a bit but I found if you make sure there's no fluid on the tip of the needle it's ok....I also inject on the stomach...I just found it a whole lot easier than the thigh and I also inject the Mtx there as well.
You just have to make sure you don't inject into the same bit twice in a row (rotate the injection site.. they call it). I used to mark where I injected on a calendar so's I wouldn't forget!

I have not had any problems injecting Humira or Mtx or any bruising.

As far as starting on anti tnfs I would say you go for it girl. you have nothing to lose by trying and you may find it hits arther on the head and gives you back some 'normal' activity.
You will be well supported, taught to inject and not left to inject yourself until you're happy with doing it. You will also be carefully monitored for any problems...... so don't worry about it!

Iris x

Thank you all so much for your advice about this, its such an awful thing to have to go through at 34 so its such a relief to know that other people are in the same situation and in time I will get used to it, I just want to feel normal again and be able to do more with my son again who is only four and finds it hard to understand why mummy can't run or dance or junmp around anymore. x

c4thyg

Thank you all so much for your advice about this, its such an awful thing to have to go through at 34 so its such a relief to know that other people are in the same situation and in time I will get used to it, I just want to feel normal again and be able to do more with my son again who is only four and finds it hard to understand why mummy can't run or dance or junmp around anymore.

Claire,
I'm 33 and bring up a 3 year old daughter on my own. I felt awful last year when I couldn't do what I considered 'normal' things for my DD, like playing football or some nights even getting out of bed to go to her when she cried! I started the anti-tnfs in July and overnight I felt 10 years younger. The way I see it is if I can get this amount of relief for 5 years, then now, while DD is young is the best time to do it. In 5 years she will be more able herself and better able to understand the physical limitations that arthur brings.

If it helps think of the reason for injecting as just as much for your son as for you. The first time is nerve racking but each time it gets easier. DD even watches me inject these days and tells me to be a brave girl! Even at 3 years of age, she understands that my 'medicine' is why we can play together.

snowball

Hi Clare I have r/a and I am on mtx and had anti-tnf sadly they didn't work for me but as you can see they do work for other peeps,
I've just been taken off rituximab which works differntly to anti-tnf It did work for a while. I'm now waiting to see if I have got funding for another drug called tocilizumab.
I would try the anti-tnf as they could work for you, I was scared of injecting myself but you will be surprised at how easy it is, personly I prefered to inject in my tummy probably because there is plenty of it
Good luck with what ever you decide.

Julie

janie68

Hi Claire

I started enbrel in October last year and it took till early Feb to give me some relief. It has not given me the improvement I thought it would as hearing that it can be brilliant. I carry on taking it even though it wears off by Wednesday, I take it on Thursday but I do get 2 good days from it. For these 2 days it's worth taking for me.

Try it, you have nothing to lose and injecting is easier than you think. I now use a pen and it's a sinch.

Janie

clarelouise1

c4thyg wrote:

Thank you all so much for your advice about this, its such an awful thing to have to go through at 34 so its such a relief to know that other people are in the same situation and in time I will get used to it, I just want to feel normal again and be able to do more with my son again who is only four and finds it hard to understand why mummy can't run or dance or junmp around anymore.

Claire,
I'm 33 and bring up a 3 year old daughter on my own. I felt awful last year when I couldn't do what I considered 'normal' things for my DD, like playing football or some nights even getting out of bed to go to her when she cried! I started the anti-tnfs in July and overnight I felt 10 years younger. The way I see it is if I can get this amount of relief for 5 years, then now, while DD is young is the best time to do it. In 5 years she will be more able herself and better able to understand the physical limitations that arthur brings.

If it helps think of the reason for injecting as just as much for your son as for you. The first time is nerve racking but each time it gets easier. DD even watches me inject these days and tells me to be a brave girl! Even at 3 years of age, she understands that my 'medicine' is why we can play together.

Aaw thank you, you have given me hope that I can play with my son properly again instead odf being constantly exhausted and in pain. Take care x

ifeelninety

It was good to read all you experiences on AntiTnf- I was referred for it last November, so by the time screening and all the tests were done - I recieved my first delivery of Humira yesterday! First injection is planned for a week today. I am very apprehensive about the actual injecting part but if I get some releif it will be well worth it. I am 40 and have had RA for 4 years now. My youngest was 4 at the time so really has grown up with mum not being able to do much! My other DS is 11, but it has certainly made them more empathetic and caring I would say. At the moment I get by on steroid injections ever 4 months, but they really only last about a month now. I am looking forward to having a 'normal life again if they work - Will keep you posted!

clarelouise1

ifeelninety wrote:

It was good to read all you experiences on AntiTnf- I was referred for it last November, so by the time screening and all the tests were done - I recieved my first delivery of Humira yesterday! First injection is planned for a week today. I am very apprehensive about the actual injecting part but if I get some releif it will be well worth it. I am 40 and have had RA for 4 years now. My youngest was 4 at the time so really has grown up with mum not being able to do much! My other DS is 11, but it has certainly made them more empathetic and caring I would say. At the moment I get by on steroid injections ever 4 months, but they really only last about a month now. I am looking forward to having a 'normal life again if they work - Will keep you posted!

Thanks good luck with it, let me know how you get on x

deborahsonia

Hi Clare
I have been on Embrel injections for about a year, and inject in my stomach with no problems, (well hubby does it for me) maybe a little bit red for a bit, but they have literally changed my life, from rolling out of bed and having help getting dressed, to being fully functional, back to work and even exercising virtually pain free. If you have the opportunity,Go for it, as its means tested down here. You wont know yourself.
Deb

deborahsonia

delboy wrote:

Hi Clare,

I'm on Enbrel that I self inject with a pre-filled syringe.

You will be taught how to give yourself the injection using a syringe or pen whatever method they use and I find that it is pretty easy to do and very little discomfort, I inject in my thigh but others use the stomach.

The only side effect I have is that it has caused my folliculitis to worsen but I can live with itchy follicles.

Others will be along to tell you their experiences but I would say to go for it and don't worry about injecting.

Delboy, did not realise this was where my itchiness was coming from! trying not to scratch my legs ( uhhgh) as going on hols soon, now I have my answer. Cheers Deb, (STILL WORTH THE ITCH THOUGH)

poppy30

I'm 32 and am on Humira and MTX. I have been very fortunate and have had great results with this combination of meds .
I was very anxious about the injecting part and burst into tears when the rheumy nurse tried to show me how to do it :oops: :oops: ! I was too anxious about using the syringe so I used to pop to my doctors every fortnight and they did it for me! Fortunately for me they started putting Humira into "pen-form" and now I am able to inject myself.... just grab a bit of tummy, point, press the trigger and count to 10... done ! The only time I have experienced bruising was last week and I have been injecting (on and off) for 3 years :? :shock: . Prior to this it has never left a mark on me.

Hope this helps and good luck!

Poppy x

dreamdaisy

Hi. Anti tnf are the only treatments that have had a modicum of success with me, but unfortunately I stop reacting to them quite quickly sometimes. The injecting isn't too bad, it saves time and faffing about at hospital (always a plus for me). Regarding bruising, I think that's pot luck, it depends whether you hit a capillary or not! I'm currently on humira (I've done infliximab and enbrel)) and it has been successful in that my inflammatory markers are down to single digits, they were always up in the 50s, 60s, 70, 80s, 90s, at their worst 185/124. I'm still in pain and can't do the things I want to do but my mobility has improved - I can wipe my feet on a doormat and that, to me, is success. Good luck, persevere and reap the benefits. Dreamdaisy