New to this, I have AS

Ankyspond

:???: Hi Anyone,

I am 42 and have AS, on anti TNF injections and pain killers. Teach part time but feeling down with the fatigue and overall problems that come with this horrible thing. Was diagnosed at 39 and took them over 18 years to finally diagnose AS, use heat to ease the pain and wine helps he he!

Just wanted to say hello and see if there was anything anyone could suggest, chat about or discuss.

dreamdaisy

Hello AS, it's nice to meet you. I have PA and OA, know all about the anti TNFs and a few other meds besides, so yes, I also thank whoever for wine! Oh, PA is psoriatic arthritis but I don't have much of the psoriasis part.

I am currently on humira, which is my third and final anti TNF treatment. I suppose I shall miss it when it stops 'working' but somehow I doubt it. I was told I would lose most of the meds and my crutches but haven't lost either! Instead I have gained some meds but hey-ho, who cares? I hope that if I am eventually granted at least one knee replacement that the quality of life will improve but I will believe that when it actually happens - I know the true value of doctors' promises.

I work as a self-employed tutor, I used to have quite a good little business but now, thanks to the depredations of the arthritis, I don't. I will keep going for as long as I can as it takes me out of myself and sets me at least one money-earning challenge per day (as opposed to all the other not-financially-rewarded challenges we all face!|) I hope you find the forum helpful and informative. I wish you well. DD

Ankyspond

Hi DD,

Thanks for the reply and your kind words, I understand completely how it makes feel you depressed thinkn we all get to that stage at some time.

Sorry the anti TNF not working as well for you, one of the risks isnit stops working with everything with this you have to live for today and enjoy life the best you can.

I am lucky to be surrounded by great family and friends and really good medics.

What subject do you do your tutoring in, I used to fullntime but have gone part time (3days) and it works well.


Keep smiling.

dreamdaisy

The first anti TNF worked brilliantly for one dose, then failed to do anything on the next two (infliximab). I then tried enbrel and that tried to explode my liver rather than tackle the arthritis. :roll: The humira has reduced my inflammatory markers to single figures below 5 for nearly two years but more joints have been added to the affected list, I still continue to flare and now with the OA in both knees (probably thanks to the PA damage) walking is a wondrous experience of self-inflicted torture as my ankles and toes are affected. Thank whoever I am used to pain! I don't really notice it unless I am too tired to make the effort to overcome it, or it's three in the morning and sleep is a stranger. The rule with my health authority is that you have three strikes and then you are out. I am not fussed, none of them have ever delivered on the medicos promises and I cannot stand the thought of going through another disappointment. I am not depressed about the future, I know exactly what it contains and it's not a problem. I am low at the moment, however, due to the shock of discovering the OA and how advanced it is.

As for work, I specialise in coaching dyslexics of all ages and abilities.