Anti-TNF treatment -advice please

ficus

Hi everyone,

I am new to the forum but would like some advice. I am 24 and have had lower back problems since I was about 13. 2 years ago I was diagnosed with AS. I have tried a number of different NSAID's with little success. Over the last 2 years the AS has got worse with frequent prolonged flares. So the Rheumy is talking about trying anti-TNF treatment, although I am still quite fit and able.

I guess it would be helpful to hear other peoples experiences with these drugs and what I can expect. I am a little apprehensive as I feel it is a big (scary) step.

Any advice would be greatly appreciated

barbara12

Hi ficus
Sorry I cant help with your treatment but I can sympathy with the lower back problems
And I just want to say welcome to the the forum I am sure someone will be along soon that can offer some advice.x

phoenixoxo

Hi ficus, and welcome to the forum!

This is going to be quite a lengthy post, so I hope you're sitting as comfortably as you can

I have PsA, another illness that's treated with anti-TNFs. I began etanercept (brand name Enbrel) in August 2006 after experiencing little success with DMARDs. I was very apprehensive at the time, but the arthritis flares were so bad that I could barely get out of bed so I resigned myself to the possibility of side effects. It was my first time self-injecting, but I wasn't worried about that; and even if I had been, my visit from Healthcare At Home's nursing team would've reassured me.

The drug showed signs of working after about a month, with no side effects, but as I needed an intramuscular injection of depomedrone every two months to achieve remission my consultant decided that I should try adalimumab (brand name Humira) instead. This did absolutely nothing for me, and the pens prescribed in place of standard needles were an absolute nightmare, like stabbing myself, so I insisted that the company provide needles as they had for Enbrel.

Unfortunately my consultant was off work with a nervous breakdown around this time and it took many months to start a new treatment. This was for Enbrel again, but double the dosage, a good move for my arthritis but not for my immune system. There's quite a story in that, but not worth the telling in this context as double Enbrel is a very rare prescription. I'm currently back on the single dose and in remission thanks to combination with low-dose prednisolone.

In summary, I've found it's worth a go. If you decide to go ahead, you'll have regular blood tests to monitor your condition and to check for any problems, and the hospital should provide all the info you need and answer any questions. That said, I'm happy to share my experiences with you.

Good luck!
Phoebe

dreamdaisy

Hello and welcome to the forum, it's lovely to meet you. I suspect that the whole point of trying an anti TNF is to preserve the fitness and able-ness that you currently enjoy and, surely, that is a good thing. Some on here with AS have had very good results with their anti-TNFs and I hope you will be included in that number. I don't have AS but I do accept that the humira (and injectable methotrexate) that I currently take do keep the worst of my PsA at bay. You won't know about the benefits until you try and side effects are not guaranteed: warnings have to be given but I have been on three anti TNFs so far and only one caused trouble which was successfully overcome. I wish you well. DD

lindalegs

Hi Ficus and welcome.

I have RA and have been on Enbrel for 5 months.

I opted for the pens and get on very well with them. My results have been very positive and I feel so much better in myself. I have had no noticeable side effects so far.

I've had RA for many, many years so I have lots of mechanical damage and limited mobility but I'd forgotten what it was like to feel so well.

You will have to be assessed and screened to see if you are suitable and you will also be told about possible side effects.

Anti-TNF is offered to prevent damage especially in young people, like you. It may be worth a try.

Hope this helps.

Luv,

ficus

Thanks everyone for the replies. It is great to hear people's stories and makes me feel a little less apprehensive about the prospect of anti tnf treatment.

phoenixoxo

That's great

And do keep us posted, if you find it helps