anti tnf - any tips?

PenJ

Hello everybody,
I was hoping for some stories about anti tnf. Ive got seronegative RA and have been on max dose methotrexate for a yr plus steroid injections,but still having symptoms. I was plodding along feeling exhausted at every turn but thinking this is just how its going to be from now on. (im 30, with a husband n 2 kiddies aged 2 and 4 and work two days a week)
Then my rheumy retired and so i got transfered to a new man, just as my symptoms flared again. I suffer from recurrent sore throats, aches, night pain and fatigue mainly and so the new guy said i would be a candidate for anti tnf.
I assumed it would just ease the symptoms but when i asked him what im aiming for, he said i should feel normal! I suppose my question is does anybody else out there feel normal on anti tnf?
I'm a bjt nervous because if the potential side effects but now ive been tempted by this "feeling normal" comment i think im gonna have a go.

Any experiences of anti tnf would be greatly received. I really want to get back to fitness, running, having energy to play with the kids 2 days in a row etc,
Thank you all so much for reading
PJ

kathbee

Hi Pen

I feel so much for people who have children and lead such busy lives, thats got to be terribly hard.

My family were grown up before my diagnosis of RA, so I was forced into early retirement at 54 due to the severity of the disease.

Over the years I have been on a varying mix of DMARD's (around 12 years) all with Methotrexate. About 3 yrs ago I was offered anti-tnf treatment. I injected Humira every 2 weeks and it did help but was short-lived unfortunately. I felt 'almost normal' for about 3 months, I could move better, felt a bit more alive and not in too much pain but then I couldnt take it any more due to too many side effects.
The next anti-tnf was Rituximab, whereby I went to hospital for an infusuon which lasted 6 hours or so, followed by the same treatment a fortnight later. Apparantly on this drug some patients can go up to 3 yrs before another infusion is required - so the rheumy nurse told me. Unfortunately I was no better at all so just had 2 lots of this 1 yr apart, the last lot being July 2012. I have not taken anything including MTX since December 2012 until just last week when I was told to start MTX again.

Am now awaiting results of some gastro results before I start with Tocilizumab, my 3rd biological drug, which I believe is infused monthly but takes around 1 hour.
My blood tests are showing my CRP as 50, so the RA is not under control.

I hope someone comes along who has been helped tremendously by the anti-tnf's. Its quite a decision to make I know but if it helps, and I'm sure it does for some, its so worth it.

Kath

toady

Hi PenJ

I've been on anti-TNF for a year after failing spectacularly on methotrexate. I am also sero-negative and went into a very bad flare around '09 & continued to nosedive partly through reluctance to start mtx and partly owing to time spent on it not working before I could be considered for biologics.

They were certainly painted to me as not just 'the next thing to try after mtx' but a step up, in terms of what they could do (the words 'transform lives' were used). I wouldn't go that far in my case but they did begin to immediately get on top of my inflammation and allowed me to stop having steroid injections, like yourself, which were the only thing propping me up.

It is hard to qualify the effects as I was not in brilliant health to start with so don't have a fit/running/sporty self to get back to - maybe if I had, I imagine the anti-tnf could certainly go a long way to helping. I would say I am not back to my pre-flare self especially in terms of energy levels but again that's hard to say why, as my inflammation had become very high and maybe I can't expect miracles. I have certainly heard (on here and elsewhere) of them helping people considerably and some are able to benefit for a good number of years.

I assume you have tried another dmard as well as mtx as that is one of the 'qualifiers'. If you do start on them I can recommend enbrel from purely personal experience in terms of effectiveness and lack of side effects. All the best, toady.

dreamdaisy

I've tried three and only felt better on one for about a month. (June 2004 I think it was but I honestly cannot remember). Not one has delivered what was promised, I've struggled on with pain, fatigue and decreasing mobility but others on here are doing a darn sight better - so better in fact they don't post any more (which doesn't help people like you). Take heart from them, not us. Good luck. DD

PenJ

Hi all,
Thank you so much for your words and stories, it's always nice to hear real life experiences.

I've tried sulfas , hydroxychlor , MTX, meloxicam, numerous steroid injections etc, so the anti TNF is the next step.

Am due to see the nurse on Monday to get started so will keep you posted

Thank you again for your time in replying

PJ

stickywicket

I'm still on meth so haven't done any anti-tnfs but I do hope it works for you.

mig

Go into it with an open mind,other people's experiences will not nessasarily be yours. Mig

Kittkat

Hi
I havn't experienced them myself but I have read comments such as people feel they have been 'reborn' on anti tnfs and 'feel alive once again'. Others get some benefit, some get hardly any it seems. Hope they work well for you

Mormodook

Hi PenJ - I realise that this isn't a new post but as I'm due to start Enbrel soon and was searching for older posts on anti TNF and came across yours. I thought I'd see if you were still on the forum to find out how you got on. Thanks

lindalegs

Mormodook wrote:

Hi PenJ - I realise that this isn't a new post but as I'm due to start Enbrel soon and was searching for older posts on anti TNF and came across yours. I thought I'd see if you were still on the forum to find out how you got on. Thanks

Hello Mormodock,

I just thought I'd answer you post being as though I'm around at the minute.

I've been on Enbrel for just over 2 years now and I find it a marvelous drug. (I've been a rheumatoid for 28 years now and have had one of two meds in my time ) I have no side effects and felt an improvement within a few hours of having my first injection! I realise that could have been psycological but hey-ho I've not looked back since.

I hope you feel the wonderful benefits and enjoy being on Enbrel as I am doing.

Luv,

PenJ

Hi ya,
Well ive been on the injections since July last year and they have really helped me. My joint symptoms have pretty much resolved and my fatigue greatly improved. The hardest thing about them is having to deal with the awful HAH company who delivers them every 8 wks, but once u get through and they actually arrive they are easy.
I give mine in my tummy as i couldn't get used to the pain of the injection in my thigh.
No side effects that i have noticed, my issues have always been with the methotrexate and nsaids causing bowel probs.
Good luck n post how u get on xx

dreamdaisy

A tip for thigh injections: do them with your legs out in front of you, sitting on the bed or a sofa. If you do them in a usual seated position or standing then the leg muscles are tensed which makes things hurt more. I am pleased it's working for you, that is good news and may encourage others who are starting this treatment. DD

barbara12

Hi Penj
Sorry I can't offer any advice but so glad to see you are doing well on the meds I do love to read positive post..long may it continue for you x

lindalegs

Funny that, I find it better to stand up to inject my thigh

Luv,

Sezeelson

Hi

I've been on Enbrel for quite some time now! About 3 years I think?
It's really helped me in a big way! I have permanent damage to some of my joints so I do still feel pains in those joints. I was diagnosed with rheumatoid at just 16 months old so I don't really know what is 'normal' but I'm a lot stronger, a lot fitter and much more mobile on enbrel then I've ever been. I've had a multitude of drugs, injections, steroids, ops etc my whole life and for the first time ever, at 21 Years, I'm finally happy with my treatment and not looking for more.

I inject in my stomach and my thighs, I have quite sensitive skin and my thighs became quite tender so I decided to use my stomach too which has really helped
I sit with the injected leg resting on a foot stool for my thighs, I stand up for my stomach but I get a bit shakey so I'm going to try the next one laying down flat on my back.

Mormodook

PenJ wrote:

Hi ya,
Well ive been on the injections since July last year and they have really helped me. My joint symptoms have pretty much resolved and my fatigue greatly improved. The hardest thing about them is having to deal with the awful HAH company who delivers them every 8 wks, but once u get through and they actually arrive they are easy.
I give mine in my tummy as i couldn't get used to the pain of the injection in my thigh.
No side effects that i have noticed, my issues have always been with the methotrexate and nsaids causing bowel probs.
Good luck n post how u get on xx

Thanks for taking the time to update us. I'm where you were back then ! So glad to hear a positive from you . Take care