Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Enbrel and Cox2 who cares? please kill the pain

Ok, First time doing this. I have AS for 23 years, allways thought that denial was the best, the mind is very powerful and I allways found the more I admitted I had it the worse it got. I suppose the AS finaly got the better of me a couple of years back, mainly due to the fact I was taking Difiene for 10 years. Obviously I had some major GI problems. About two years ago during a flare I was put on Arcoxia Cox-2,my prayers were answered. The stomach problems were quite managable with Losac and I could move my Jaw again and eat that steak!!
So I guess everyone now knows the problems with cox2, I found out in the news paper last December, did some searching on the web and decided to go back on the Difiene.January was a nightmare I won't bore you as we all have gone through the same. Went back on the Arcoxia at the start of Feb,my Doctor told me yesterday that since I had high blood preasure thet he has recieved a new warning and I need to stop taking it, my response was, OK so if I take the Arcoxia it might kill me, if I take the Difiene I might kill myself.
My specialist only two weeks ago finally agreed to put me on enbrel since my ESR was 48 and I have very little movment in my lower back and neck.
So I say to all those who like to knock, s**t happens, give me the meds and I take my chances the alternative sucks.
It's funny the way your body is talking to you, when I started taking Arcoxia I was feeling the benifits but I was also going through some changes I did not understand. I started having palpations,lost any strenght in my arms and sex was a nightmare. Well not the sex as such but the pain in my stomach muscles for days after, and believe me sex is no maraton 3 minutes does the trick, so you think I have problems/ Gobd bless my wife!!
Anyway for those of you who like to tell the horror stories about different meds I say to you, no two people are alike and no two people experience the same thing with pain. Understanding is the key, i'll take the enbrel and if it turns out for the worst then don't pity me, the chance of things better is worth the risk.
One more thing,for those who like to preach of the benifits of excercise, this realy gets on my wick. Its works for some but not for all, don't judge everybody by your own experieces.

Hello Bert,

Please don't let anyone get you down . At some point, we finally figure out what works for our own bodies. Hopefully by then, we have a doctor or two, who will help us treat ourselves, ie: keep us up to date on options, provide guidance and help us find what works for us. My rheumy treats my AS, my F.P. treats my pain and accompanying depression as well as everything else. I make sure they keep each other informed so everyone is up to date. My tx has evolved over years of working with both MDs.

I am on Remicade, Pred., Arava, take narcotics for pain (NSAID'S =asthma). LSD diet helps some (I have been eating that way for years before dx---go figure) but I am finding my condition is worsening anyway. Just a few weeks ago, I had to start using a cane to stay off the floor. Catching myself, after stumbling over my right foot, without it has become excruciating.

I don't know how old you are, but I have finally learned that even if others want to preach, I don't have to listen . For example, how many of us, pre-dx, tried to eat whole wheat and grains because they are so good for everyone? I find those who are judging us are either young (I used to know alot more than I do now----remember the song that said---I was so much older then, I'm younger than that now?) are not as far along in our disease or are just plain clueless.

As for those who can exercise, more power to them! I have kept active, yet am becoming less and less able to do those activities which I love. I miss being able to take long walks with my husband. The last few times we went out, he thought he might have to go home, get the truck and come back for me. Even my hunting season was only a quarter of what I have always been able to do . We don't like hunting within sight of the truck. The antelope don't like to see vehicles, and try to avoid the immideate area. It makes it hard to bring home any meat when you can't get far.

Any way, good luck with getting the treatment you need. Sometimes we have to use treatments we always sworn to avoid. It is hard to understand, until you have had to cross that "line" yourself.

Just remember, we are all in the same boat. Just maybe different decks.

Keep smiling! )

Dear Bert

First of all, welcome to KickAS. Its a friendly bunch, willing to give advice and support. The first time you post always seems like you're exposing yourself to the world, but by discussing your medication problems you are helping other people who are really shy or unaware of side-effects. There are people who 'lurk' for years, reading the messages, then suddenly post thanking everyone for being there.

I've learnt all sorts of Aussie slang on this board, now I can learn the Irish variety. (wick)

take care BlueNorthern

the exercise problem is the lack of understanding of the enthesitis process, great when you are n;t flaring and low impact appropriate for your condition stage etc falre cycle but.......

Stretching seems hard enough these days,I just pick bits to exercise at the moment or rely on stretching.

David

Hi people,

Thanks for your replies. Maryellen, I'm 40 and from Cork in southern Ireland. It's where Roy Keane the soccer player is from and "at de end ah de day like" we have lots of slang unique to Cork.I don't know the song but it sounds like something Kris Krisstoffersn would write,I'm a big fan of American country.
Well today I got my first shot of enbrel,only seven hours ago. It's 5pm here and I have not taken the Arcoxia today, I tried this a few days ago and made it as far as 2pm before I gave in and took it. The nurse said it could take a month to start working but some people felt the benifit right away.So it's so far so good.
On exerecise, I did karate when I was very young so a couple of years ago I took a course in thai chi which was great but I could not find a group which did it as a hobbie. As with a lot of these things the guy doing the course saw himself as a bit of a mind guru which took any fun out of it. As it happens there is an AS meeting in my area next week maybe I will find someone there.
For those who do not know,thai chi is like karate in slow motion,funny they used to do it in star trek,OK i'm a bit of a treky,only a bit mind!!
Yes the forum is a great place to come and find others with AS and it is good to post your experiences,I'm hooked.
Back to the song, I realy like that line it makes so much sense. I used to know it all when I was younger,I must have been a right pain but I found away around this,it's hard to addmit when your wrong and life has thought you otherwise so now I say " it's my mind and I'll change it if I want "

Hi Bert and welcome to KA!

I'm glad you've found this place. These people are some of the best I've ever met, bar none. They've always been a source of laughter, support and information. I hope you find the same thing.

I understand your wish that people not put their bad experiences with drugs out there, or not push exercise and the like. However, I would put it to you that if someone asks the group as a whole what such and such a drug is like, if I've had a bad experience with that drug, I'm going to share it. While you are correct that everyone is different, to only post rosy experiences with drugs does not present all the information and the person asking the question is less able to make an informed decision.

As for exercise, you aren't going to like this, but it is a proven fact that exercise is one of the best things we can do. The main thing is to get your fitness level checked by your doctor or a physiotherapist so that you don't overdo at first. If you are only capable of one minute of exercise at a time, then of course trying to push your body to do half an hour is going to create pain. The rule of thumb is that if the pain lasts more than two hours, you've done too much and you should back off a little until your body is used to moving.

And exercise doesn't necessarily mean going to the gym and doing a step aerobics class right after pushing weights for 45 minutes. It can be three ten minute walks a day (five minutes out and five minutes back), or 30 one minute sessions of vigorous arm movements (like pretending you're conducting an orchestra).

There are times that I'm capable of a one hour dance class once a week plus an hour of pilates two or three times a week. Other times my dance class about kills me and by the time I get home from work, I'm so drawn out that the very thought of pilates is enough to send me reeling onto the sofa never to move again. I listen to what my body is telling me.

There's a very good article in this month's edition of Arthritis Today (published by the Arthritis Foundation in the States). It talks specifically about walking, but the information can be applied to almost any form of exercise. If you can get your hands on it in Ireland, I suggest you give it a look. It's very informative and explains the mechanics of all of this much better than I ever could.

In the long run, it's up to you and I'm certainly not going to judge you (it's not my right) or slam you if you decide against it. But exercise can and does help alleviate depression, pain, sleeplessness, fatigue and weight problems; all of which exacerbate our AS and other forms of arthritis.

Hugs,

Hi Inanna,

OK so I can be a bit generalistic but I guess we are both right.I suppose I could have been a bit more precise.For many years I worked as a cabinet maker which was quite pysical so I would have been very active,I don't think you need to tell any AS sufferer that if they don't get off their butt the pian will get worse. When I talk about excerise and when you are being advised to excerese it is usually by a professional.Being active and excercising I would have seen as two different things.OK I rambling.

I changed work 6 years back as the cabinet making was killing me,I now work as a sales director which is less demanding pysically,I do keep active,walking etc but during my many flares I could not do the excercise and given that one would be quite depressed I would get pretty annoyed when advised to excercise.

Anyway,In my early teens I used to do karate and loved felling fit,now 40 it has been a long time since then.

I am happy to say that since last Thursday I have had little or no pain,I have regained some of the movment in my neck and all of this from one shot of enbrel. It has been a miricle for me so far,tommorrow morning I will be giving myself the shot for the first time,looking forward to that!!

On the subject of negitive effects,well I have nothing against anyone telling of their experieces,why I could go on and on about NSAID's and cox2.Maybe some day I will have a story about enbrel,hope not but any of the meds I have been on helped me at that time and have played their part in my journey thus far.

I do however dislike when people knock western meds in general just because they believe in eastern meds,Antonne who has posted his message in many posts fits this bill.

My advise is this, OK if you have a bad experiece share it,but for those who read it should use this to help them Identify these symptoms earlier than had they not had the information.If you were to read the info that comes with any meds as gosple then you would never take them.

Sorry for rambling but you are right this is a great place to come and I will stay.

Bert.

Bert,

hiay again, agree my expereince of nsaids and cox2's has been both are nasty on my GI.

The great thing about this place is that alot of others have been are in the same boat....

Great to hear that the enbrel has helped I hope that continues for you, just watch out for any infections, although many are fine, some do suffer early on.

Good luck I hope things really change for you now!

David

Hi Bert. Ah jeeze, it must have been very difficult to give up your craft because of this disease. I have a friend who's a master carpenter and has been experiencing bursitis in his shoulder and elbow because of all the years of heavy work. I know how disheartened he is by that, so I can imagine what it must have been like for you.

People often associate exercise with, well organized exercise. It took me a while before I realized that even my gardening could be considered a full body workout. And certainly, when you are depressed the last thing you want is to be lectured or talked at about exercise. It's just that the exercise can help alleviate the depression as well, which is one of the reasons I'm such a big proponent of it. It helps in so many areas. That's why I liked the article in Arthritis Today so much. It touched on everything, including what physically happens in the joints when we exercise, which was very cool.

As for meds, ideally, I'd like to be doing a mix of 'Western' and 'Eastern'/alternative/complementary medicine. It's one of the things I'm working toward.

Anyway, thanks for clarifying. Look forward to talking to you more.

Hugs,

Hi There,

Well the enbrel is going great,gave the shot by myself for the first time yesterday. I even had a second look to make sure the needle was in,I tell you I could not feel it at all,I'm hoping the ones in the leg go the same. I overdone it yesterday so some of the pain is back but nothing compared to the norm.

Well Dave the GI problems have got a lot better even after a couple of days, I guess years of meds will leave a lasting problem but I do feel better.

Inanna, on the eastern approach,not so much the meds but the therapy. I have tryed acupuncture,meditation,thai chi and Ki massage. They all helped, not for the condition but for my general well being and state of mind which I beleive to be most important in dealing with the pain.

I guess many will have experieced more pain after stress or a row with someone close. I have often experienced greater pain after such, I don't beleive the AS got worse because of a row or stess but only my ability to deal with it was affected.

If you think of it this way, you spend so much mental energy dealing with the pain, something comes along which takes from that so the symtoms appear worse.

Just like something as simple as a warm bath,it can't be a cure but it makes you feel better in general, same goes for massage or meditation etc.

Anyway,it's not such a bad thing on the work front. I now work in sales but the company I work for supplies the fitted kitchen,joinery and kitchen appliance industry so I still get to talk about what I have known for a long time.

Bye for now,

Bert.