Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Want to get off meds! Rant....

Fair warning...this is a rant. I'm pretty tired of going in circles and just want to enjoy my life again.

I'm currently taking sulfasalzine, mobic, and I did two dose packs of steroids. My symptoms have improved since doing these things, no doubt. I have also been doing the paleo diet for 5 months, along with the NSD for maybe 2 months, but I cheated today with some corn starch. Before going on meds I tried hard for 3 months to get better naturally, but I decided to do meds after I continued to be in a great deal of pain. I couldn't do anything with my hands, couldn't sit down, couldn't exercise, etc.

My rheumy is very kind and I'm grateful for him. He thinks I have ra or as. Before him I went to many ortho drs and none of them knew what was wrong with me, but they all guessed arthritis.mAll my bloodwork is neg. no b27 gene either. No family history of autoimmune diseases.

My low back hurts and my hands and my knees and basically all my joints except my elbows and hips hurt. I recently got hives and burning eyes from the sulfasalzine, so now I'm too scared to take it again until I go talk to my dr. When I stop mobic for evn a day the inflammation increases in my joints. But I'm tired of all the meds and I want to have a baby. Today I had an ultrasound ordered by my obgyn and she said it looks like I'm not ovulating....I think it's prob from the mobic because NSAIDs can stop ovulation. So now I just want to say forget it with all these meds and roll the dice and try to get pregnant. My rheumy is still unsure if I even have ra, and so am I. All I knows is I have had joint pain for over a year that has never gone away and no one knows what it could be other than an autoimmune disease. My rheumy suggests not getting pregnant until I'm doing better.

I'm just tired of all this. I've given up my hard earned career due to all this and I just got married and all I want is to be a normal young adult and start a family with my husband. I came to peace with having to modify my work, but now that all this is affecting my fertility (possibly) I just don't know anymore.

Sigh. Sorry for the typos and run on sentences. My hands hurt, so I don't worry about spelling and sentence structure too much when I'm typing.

Hello !!
You go on and rant whenever you need it !!
I'm in a similar position to you. I have been diagnosed with AS and take methotrexate and anti TNF (enbrel) and occasionnal NSAIDS (a lot less since starting NSD). That combo of drugs has worked very well at reducing my symptoms (joint pain & fatigue mostly), however I can't imagine having to rely for my whole life (im 28) on such toxic products ! Especially as my partner and I have discussed starting a family in the next year or 2.
That's why I've turned to the NSD and very recently to traditionnal chinese medecine. I don't feel my doctors are giving me the answers I need. I'm sure all my symptoms are related but each specialist looks at them individually, and as a result they get nowhere. And just end up saying "take more drugs"...
Drugs don't treat the disease, they just cover up the symptoms, and I wonder if they might not do more harm than good in the long run (anyone read the notice for drugs such as Enbrel ?? It's enlightening !!)
So i really hope you'll find a way to manage your condition without drugs, and that I will too, it's no way to live, especially if it means giving up on things you really want to do in your life.
Let us know how it goes...
All the best,
Marion

You mean the side effects?

(((HUGS)))

Yep I mean the side effects and list of stuff that can potentially go very wrong if you take this drug...

I also know about quite a few other things that ARE going to go very wrong if I don't take this drug.

That was me before the drugs. Now on Humira (and pred when I need it), I have some semblance of life.

It's a tradeoff sometimes, but its nice not having to struggle so much now.

Of course I'm not trying to get pregnant.

This is the place to come if you want to rant now and again.

Hopefully you can find some answers to all the pain.

Tim

I completely agree with you that those drugs do work wonders. It's just that after 4 years on Enbrel and 6 years on Methotrexate, you just realise there is a price to pay to feel "normal".
I just think that if the same results can be achieved through diet and other lifestyle choices then it's much safer.
I'm not saying you shouldn't take those drugs, just be aware that they do come with their ball & chain you'll have to drag around, and make an informed decision !

Thanks for reading my rant, everyone. I am in much better spirits today. Although this journey is not pleasant, i know I still have so much to be thankful for, including having found this website. I also know I'm a better person because of this awful illness, so there's that too.

I'm sticking with the meds for a while longer, and I'll reevaluate in January. I also took the sulfasalzine again, per my drs. advice, and so far no itching!!

Marion333- it appears we are in a very similar situation. I'm right there with you, I am trying everything to combat this naturally so I can get off the medication. I also worry about long term damage, but in the end we are doing all we can, and if we have to take the meds then that's just the card we've been dealt. But you already know that. Typing it just reinforces it in my brain.

And as far as the part about drugs doing more harm than good, the way I see it is if you had a very low quality of life without them and they gave you a good quality of life again, then it's worth it to take them. Yes they will prob harm us in the end, but I don't think it will be more harm than good if our quality of life without them was low. It's just a bad situation overall, and it's not like we aren't trying our best to treat this naturally. I am sending you love and well wishes, and I sincerely hope you get to have your baby and be med free.

Thanks, everyone. I am sending you all well wishes too!!