anti TNF drugs and side effects

lynmary

Hi all,

I've been advised to post on this board. Need your views on Anti TNF drugs. After years of treatment with Meth, including for the last two years the injections, the effects are no longer as good as they were.

So my rheumo has suggested anti TNF, but my reading shows lots of side effects. Do they outweigh the benefits?

Any views please

Lynmary

stickywicket

I've never had anti-tnfs but, as Del says, they have to warn you of all possible side effects so it doesn't mean you're likely to get them. Also you'll be very well monitored while on them. Meth still does the trick for me but, if it didn't, I presume that'd be the next step. A change of meds is always a bit scary but so is the alternative.

lynmary

Hi,

Thanks for the advice.

Just one more thing (I'm a worrier).

I read that if you get a cold etc you have to stop the anti-TNF, do you find this is a problem?

Lynmary

phoenixoxo

Hi Lynmary,

I've been on anti-TNFs since 2006. To answer your question, I've been advised to stop the treatment as soon as any sign of infection presents, including a cold. It's a bit of a nuisance, but there was only one period – while I was on double dose – when I couldn't take it for more than a fortnight and going without for a couple of weeks hasn't made any difference to my joints.

Best wishes,
Phoebe

lynmary

Hi Phoebe,

Following several other positive replies, I'm feeling a lot more confident about taking these drugs.

Thanks for your input.

Lynmary

phoenixoxo

You're welcome, Lynmary

And feel free to let us know how you get on!

Best wishes,
Phoebe

lynmary

Will do Phoebe,

Always good to talk to people who understand the worries.

Lynmary

Katielawson1000

Hi I am a 21 yr old female which all this started from having a terrible car crash early in 2006 when i was 15!
My lower back pain got worse over the years and my doc and the hospital both said it was pulled muscles and bruising at the time of the crash and then further down the line whip lash that wud heal in time! I new in my heart from day one the pain and difficulty I was finding wasn't normal, we all know are own bodies! What feels right and what doesn't! I was constantly to and from the docs with different pain killers and inflammitories then they referred me to physio and eventually they sent me to a rheumatologist specialist were only roughly 2-3 years ago I was diagnosed with sacroilitis, inflammation of the lower back (sacroiliac joint) which is connected to My lower spine and pelvis.. As you people who also have this can agree its very painful and can really change and affect you as a person and ur lifestyle. I struggled hard with post traumatic stress disorder even 4-5yrs after the crash as I found it near enough impossible to accept and was convinced my life was ruined and would never be the same again because of my condition for this I received help from a councellor to help me deal with things and also I struggled being a passenger and not having control of the vehicle, also at this point I wasn't fully aware of all the treatments available to me, I tried massage as my shoulders and top half of my back and neck are very very stiff whereas my lower back is very tender to touch so gentle massage on my lower back to prevent setting the pain off!(I have massage 2 times a month depending on how bad I am) I have had acupuncture and reflexology which I found helped but only short term as well as the massage is short term relief. But every little helps. I have heat packs and pads and support belts and chair supports to try and make everything as easy and as comfortable for myself whether I'm at work or at home. I have also had cortazone injections into both of my sacroiliac joints which is a mixture of steroids and anaesthetic I found these worked amazing for me I was around 6-9 months with next to no pain and I finally felt I had a break from my pain which also helped me cope better mentally. Over time I have learnt to accept my diagnosis. I have Also been diagnosed a little while later as this I think is part of my condition I have developed Hip bursitis in both hips but my right side and right hip are my most painfullest and I have had a cortazone injection in my more sorest hip also.
I was told by the specialist when u feel ur injections are wearing off and you are beginning to feel your pain again to come back for more, and this is what I did I was having better quality life I was happy!!! Pain free!!! However they said they didn't want me on these anymore and suggested anti TNF injections which I am having my first one performed by a nurse who is coming to my house tomorrow!
My specialist has advised and they are keeping track as well as my physio that I have been goin to for 6 yrs to that my sacroilitis could turn in to Anklosing spondylitis.
Anklosing spondylitis is said to be hereditary but my family have no history of this!??
Fair to say I'm a little bit nervous but who wouldnt be!? My back condition is a big part in my life as it has took on such a big affect!
my state of mind is if it's going to help me then what's a little under the skin injection whethere it stings or not I will do anything to be able to be pain free and live my life like a normal 21 yr old should and even to wear a pair of heels on a night out and not regret it and be in agony the next day!!! Would be a treat!! The cortazone injections I had in the past were between my joints! And had to be done by X-ray so I believe I can cope with a few seconds of stinging and a under skin injection!
Hope my general brief story might help some of u out there who are finding it hard to accept.....that it is possible to accept and that ur life isn't 'over'! There is help and treatments out there! And take care of yourself I always tend to feel pain more after doing something the day after I avoid heavy lifting too at work etc and make sure u tell ur work place so they are aware of ur needs etc.
Write bk people on any info on anti TNF do they work?
Thanks Katie xxx

dreamdaisy

Hello lynmary, it's lovely to meet you and I am glad you have found us. Like all meds the anti-TNFs work brilliantly for some, not so well for others and not at all for a few. I'm on my third anti-TNF, my blood results are fantastic, I never give a thought to side effects and I know it helps my auto-immune arthritis inasmuch as it keeps it under control but it does nothing for the OA (caused by joint damage from the other). Hey-ho. :roll: If you have the chance to try these meds then I would urge you to do so, the benefits can be fantastic (and if that is the case the fear of side effects may well disappear ) and you should be closely monitored via blood tests. These will show any potential trouble and steps can be taken to ensure your health. I stop my meth and humira when I have a bug or a cold and that causes no trouble. I wish you well. DD

lynmary

I am so grateful to everyone for their help and advice. I'll be talking to my rheumo nurses soon, to arrange everything. I should say that these specialist nurses are so good. They always have time to listen, such a help to us crocks I think.

Thanks everyone.

By the way Katie, I would check that possible diagnosis of anky spon, doesn't quite sound right from experience.

Lynmary