My experience of anti-tnf

[cathie]

Anti-TNF experience

I’ve been on one anti-tnf for the past ten years. Its infliximab, but there are other more recent ones, but I think the procedure is more or less the same for each one. I also take 20mg methoxitrate weekly. And I should say that I’m not medically qualified in any way, this blog is about my own experience, nothing else!

Well I started about ten years ago when it was very much in the experimental stages, so the procedure was very cautious and they gradually increased the dosage, monitoring me every half hour – it took four hours to get it + a saline flush in the ‘old days’.

Today, I go in to the hospital every eight weeks for the treatment. It varies, but they do insist on me doing a blood test a few days before so they can be sure you don’t have an infection or anything. Sometimes they ask me for a urine sample which gets dipped for the same reason. This means that when you’re on anti-tnf you get carefully monitored.

The procedure is quite simple, you get checked for infection, then other obs, then a doctor Oks your treatment, then cannulated (the worst bit) and then you settle down for the drip to run through. For me it takes half an hour because they know I tolerate it well. Then a quick saline drip to make sure that we use all the precious infliximab up, more obs and then you’re free.

The impact of the anti-tnf has varied over the ten years I’ve been having it. It took a few treatments to kick in. But quite quickly I did begin to feel better able to move freely, the dreadful pain eased and I can say that I haven’t taken a pain killer for many years now. That must be a bonus. I’m still aware of my RA, I still have a pain in my knee pretty constantly, but its bearable and I have learned to live more or less with it. I still get tired, but am trying the 20 minute zizz which is supposed to be the most efficient way of day-napping.

And I can also say that the methotrexate really makes a difference too. There was a wobble at one point when I reduced my dose because I thought that’s what the consultant said, and it really set me back quite a bit. So however much I loathe taking those eight nasty yellow pills, I do now!

So don’t worry too much about the anti-tnf. In my experiences (hospitals in Oxford and Edinburgh) they monitor you very carefully. I have only once seen someone having an adverse reaction and that was dealt with within seconds. So I really do think that it’s a rare occurrence.

Since going on the anti-tnf the consultant says I’m in remission, which I understand to mean that while the RA is still there, it isn’t ravaging through my body – I hope! But most importantly I am gradually being able to do new things. I’d lost my confidence and stopped taking exercise. Now I’m doing tai chi, can walk a couple of miles easily and in the past year have started to do stairs normally. So I’m rather surprised to be able to say that I can make progress - gain rather than loss!

[sylvi]

Cathe, its so good to hear good news about you and your disease. It will encourage others with this disease who are only in the early stages of this disease.

It is sunny and very windy in the midlands today. I don't know how cold it is as i haven't been outside the door.

Take care sylvi.xx

[cathie]

I just keep looking out of the window at the sunshine, but I'm sure it's freezing here! And windy. Have to go out later to see The Artist (new award winning silent film) so am saving going out for later. But the sunshine is so welcome.

Keep warm and well, X

[sciqueen]

Hi Cathie

You are so lucky to be in remission and overall your disease seems to be well managed. Well done

You give us hope and inspiration and it's so good to hear positive good news where ra is concerned.

Hope you enjoy the film, I also want to see it.

Take care

Sci x

[Gina_K]

Great positive blog cathie, I'm starting tai chi, on Wed, looking forward to it

[cathie]

Hope my experience can help calm people's fears a little.

I'm so happy to have found tai chi. When I developed RA I felt as though someone had broken my body and reassembled it the wrong way. Tai chi - at least the way my tutor teaches it, helps you to feel your body as interconnected and internally reinforcing if that makes sense. I think its a great way to keep supple and in control of your movements.

The Artist is a lovely film, nice photography, a great sound track and quite feel good. A bit like going to the movies in the 1930s - not that I would know of course!

XX

[julieporter]

Hi Cathie

This is really helpful-i'm waiting to be assessed for anti TNF and i've heard all the negatives it's good to hear a few good experiences too!

Julie x

[cathie]

I feel a bit more confident given that I've been having it for quite a long time, and am still OK. But with all these things, its wise to be cautious in making claims. I'm just packing in as much good things as I can right now.

The hospital I used to go to had a book which the nurse in charge used to keep which had mini essays written by people' about their experiences on anti-tnf. That was worth having, and I think she was using it to build up evidence about the benefits. They had dramatically reduced the number of joint replacements needed, and wanted to document other ways in which people were put back on their feet.

[Hidden]

Great, positive blog, Cathie. You have given a detailed account of what any of us can hope to experience.

Remission is the goal. Sometimes I feel like I might be close, but Rheumy says, not yet! I have been on Simponi anti-tnf for 15 months and have just recently realized, I'm as good as I can be, even if it isn't as good as I used to be!

The combo of MTX, Leflunomide and Simponi, plus the pain meds combo of Tramadol, Neurontin, and hydrocodeine doesn't leave anything more to be expected. Pharmacists have said my Rheumy is a magician in the way he can put drugs together to get the best benefit from them.

Thanks for your blog, Cathie, I'm sure it will give others more hope and faith! Love, Loret

[cathie]

I'm glad if it helps. Incidentally, my well being has varied over the years and I don't thing that I've got as good as I might hope to get. I had an improvement about a year ago (in terms of what I could physically do) and I think that other factors like absence of stress can make a difference.

XX Cathie

[Hidden]

Hi Cathie - sorry I'm late to this great blog of yours. As a newcomer to RA I find your story very heartening indeed. I haven't got it as badly yet as many but keep wondering if it will slowly get worse and that prospect is not cheerful so it is really nice to read a positive blog about the medication making such a difference as well as your healthy seize the day attitude which I am sure contributes to your improved sense of well being too. My lesson that i repeat endlessly is "be patient and stop worrying about the future - take each day as it comes" but it is easier when more experienced RAers such as yourself set such a good example. Take care TildaTxx

[allanah]

Thanks Cathie, I am sat here in tears after reading your blog as I am still at the cant walk and pained stage. Your blog has helped so much to try to keep the belief there will be light at the end of the tunnel and when I go for my treatment tomorrow I'll think of your happy smile in your photo and your wise words.

Thank you again Axx

[Hidden in reply to allanah]

Allanah, I have been thinking of you often lately, as I think you are the only one here who is in a wheelchair-somebody correct me if I'm wrong- I totally relate to that situation , and I can say, the anti-tnf treatments will surely get you moving on your own soon.

I have a power chair, and have not used it for over a year. Just seems I phased it out of use!

Used to have to take it if I wanted to go to the Mall. Well, I don't drive anymore, so that meant whoever took me would have to load it in their van. Too much to ask of friends.

Now I can go to the Mall with my walker. I try to keep my legs strong by walking as much as I can when I go out, even though I have to use the walker to steady me, as I lost my sense of balance. A whole other story!

Hang in there, there is light and it's getting closer. All the best, Loretxx

[allanah in reply to Hidden]

Thank you soo much Axx

[helixhelix]

That is a positive story, thanks. And particularly helpful to know that you've been on it for 10 years, as one of my worries is that I'll never reach any period of stability and be permanently stuck in a cycle of constantly altering meds in years to come. Px

[Hidden]

Hi Cathy, Great blog, thank you

I need to stp worrying that now I am in remission, how long will it last for but reading your blog helps, I must stop fretting and enjoy life and not expect the worst.

xx