Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group long term effects

Hello all,

I'm relatively new to the forum but am so grateful to have found this place to find answers to a lot of questions I have about AS... and here's another one

My history is I was diagnosed in late 2008 and was put on feldene/mobilis NSAID. That worked for a year, then my CRP (from 12.1 to 20.7) started to creep up and suddenly I was in a terrible flare - the worst I ever had. My rheumy switched me to Indocid, but three weeks after that my CRP was 33.3 and ESR 27. So he put me on sulfasalazine, which gave me terrible headaches, nausea and loss of appetite. I also seem to have lost some sense of smell? Anyway, I got an allergic rash to it, so after three weeks despite battling through the splitting headaches I had to stop it. No fusion yet, but one bout of iritis, and CRP level making my doctors nervous.

I have an appointment next week with the rheumy to discuss next steps. At the moment I'm on no meds at all. So my question is about anti-TNF. I'm not sure he'll recommend this for me, but who knows... and I want to know what people think. The thing is, I'm 25. I read that on Remicade you have to wait 6 months after getting off it before even thinking about having kids. I want to have kids in my life and being mid-twenties it's a consideration for the near to not-so-distant future. I've noticed a lot of people here on the forum have kids, and most people around seem to have more experience with the medication merry-go-round and the long-term effects of AS.

What comments do you have about going on such strong meds at this point in my life? Again I'm not sure what the rheumy will recommend, but I want to have some background knowledge. Will anti-TNF affect my chances of having kids in the future? What about other long-term effects, like effectiveness? My only concern is, going on this sort of medication in my twenties, it stopping working and then not having another level to step to... I'd be interested to know what the group thinks about this.

Hi there, I'm glad you found us.

It sounds like you've run the mill of adverse effects and ineffective NSAIDS. I'm sorry you've experienced iritis. It's horrid, isn't it.

Here's the thing, you are only in your 20s and so six months seems an awfully long time. However, your doctors are right to be confirmed and given your history with iritis, Remicade would seem to be the way to go. It wouldn't halt the progression of the AS, but it would slow it immeasurably. I would go for it, personally, if for no other reason than to give your system a break from constantly attacking itself.

I'd been on Remicade for 4.5 years when I recently switched to Enbrel. It's work beautifully for me, almost as well as Remicade did. I doubt there's cause to worry that there will be no next level of med for you. They're in clinical trials right now for what I think may be the next level, a med that targets IL-23 (one of the specific spots on the human genome that is involved in AS). So, there are options, both available now and in the future.

I've not heard of anyone having trouble conceiving due to a biologic med, but understand completely having to come off the med for six months prior to conceiving. You might want to google it (Remicade and birth - or something like that anyway) and see if there have been any studies. Also, talk to your rheumy about it. Your concerns are valid and should be eased to your satisfaction before you try any treatment.

I would also look into a low starch diet. It doesn't work for everyone, but enough people have had positive results that it's worth giving a try. You could do this in conjunction with a biologic med so that should you have to come off the med to conceive, you will have a lifestyle change already in place to help out.

And keep asking questions. We've all had different experiences and between us all, I rather doubt there's anything about this disease that one of us hasn't dealt with.

Hope that helps a little.

Hugs,

Hey bud,
Sorry to hear about your high levels of inflammation. By sounds of it your rheumy is doing the ground work toput you on anti-tnf's.
I was put on Humira last december, and life has been so much better. I can get up in the morning without pain, inflammation indicators are ESR<3, CRP<3 units. I can exercise, am doing low resistance ones to build up back muscles. Can go out and live a normal life!

The pre-reqs are for humira/remicade etc are,
1. Negative for TB test (thru Xray)
2. SI joints Xray (to say Grade II bilateral or III unilateral Sacrolitis)
3. Blood Report ESR>25 and CRP>15 units
4. BASMI assesment (limited flexion of spine)
5. Trial of atleast 2 different NSAIDs, with prescribed exercise program

More info at http://www.medicareaustralia.gov.au/provider/pbs/drugs1/ankylosing.jsp

Hope this helps, Good luck

hi there and welcome to Kickas,

Hard to say what long term side effects will be... I was on azulfadine for 6 years. Was great until liver said no more. Then tried No Starch Diet from here and works just as good as azulfadine did.

TNF drugs appear very promising, but like all meds there are some side effects and therefore a personal choice to make.

I would suggest with whatever path you choose, become knowledgeable about all your options... so keep learning and asking questions.

Take care,

Tim

You may want to listen to the others more so than myself because they have been at it a lot longer and I have a strange way of thinking... I too am in my 20's (late of course but still there for a little bit longer) and on April 7th when the Rheumy said "How would you like to live without pain? All you have to do is inject yourself once a week for as long as you dont want pain..." I almost old him to go to hell, but was nice and said "No thank you" instead.. Yes, my pain can be crippling at times. There have been times where I just laid there and cried because I couldnt play with my little ones. I was so depressed because I didnt know what was wrong with me. Now I do and I couldnt be happier, yes I did say happier. Because I know now what is causing the pain and that I will be living with it the rest of my life, I will do what I can to fix the "everyday pain" I have started working out and got back to doing yoga. I have started making small changes in my diet. I am going to physical therapy once a week, I visit a chiropractor once a month and get massages 3 times a month and I feel amazing. Sure my pain is still there, but not nearly as bad as it was a year ago. The days that it is bad, I might take a tylenol and I force my way through the pain and I feel much better. I am losing weight and I feel so much better. I have come to realize that the less active I am, the more I hurt.

So what I am trying to say is, look at your lifestyle. If you can do some changes to help manage the pain, then I would go that route before taking meds the rest of your life. Especially when you want to have kids. You are so young, do you really want to be getting enjections for the next 30-40 years?

I do have to add that I know meds are life savers for some, but they arent my cup of tea. I dont like any kinds of meds. I like the more natural approach. Thats my weird way of thinking.

hi im 30 and have delt with as without knowing it for over 15 years with no meds.my job as a plasterer helped me stay active but now its taking its tole.for the last 4 months i havent been able to go to work, i stoped walking proppaly at xmas just gone.thats what got me to eventualy go to the doctors and after mri scans i got told i need a hip replacment and i have as im waiting to get my first anti tnf treatment TODAY and was excited but like your self i like to be in control of my own body and to cope and mannage my own pain.but there comes a time when enough is enough i have children that have missed out on dad not being in pain iv missed out playing with them so much and iv heard positive and negative feed back aaahhhhhhhh what to do?????

We have to remember also that pain and inflammation can wreck havoc to your body. It can cause high blood pressure, damage to your spine and joints, all the various stress hormones are set louse to do their damage. It is not just can you show how tough your are to be able the pain, but what is the long term damage the pain and inflammation is doing to your body. I know that when I am hurting, I'm not being the wife and mother my family needs. I will not do the things I need to do. My BP goes up and I don't sleep well. I am not the nice person to others that I wish to be. The me in pain is a completely different person then when I am not in pain.
Donna

Thanks everyone for all the replies! It does make me feel better knowing people are out there and supportive.

Kat,
Thanks for your response. It does sound so good to be free of stiffness and pain. The thing is, I don't have huge amounts of pain at the moment. I can walk fine right now, SI joints are relatively pain free, a bit of stiffness in the mornings but nothing like it has been during the bad days. And yet, my levels are so high. I guess I'll just have to trust my rheumy on this one...

Ansh, Thanks for the criteria. So many pre-requisites! I haven't had a TB test and my grandmother actually was diagnosed with it last year so I'm a bit worried that there's a possibility of me carrying it. #2, #3, #5 I qualify. How is the BASMI measured? I can still touch my toes (most days)... would that mean I don't qualify?

Sara,
I have thought about going all natural before... I have been cutting down on gluten/starch as much as possible but it's quite difficult to keep my discipline!
I don't really mind injections - I've been poked so many times it truly doesn't affect me so that wouldn't be an issue. The issue is more that I want kids and I don't want to ruin my body before I have them. But Donna makes a good point -- the inflammation could ruin it as well. Not to mention the fact that I get so depressed in a flare. Donna, you hit it on the head when you said "The me in pain is a completely different person then when I am not in pain"... I hate being the "me in pain".