Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Anyone on minocycline for AS?

Hi Winter,

biologics won't be on my list until I've worked my way through the cheaper meds so, as mtx seems to be working right now, I'm not likely to change unless it stops working.

Sue and Donette: Thanks for sharing your current treatments. I am going to look into the muscle relaxers before bed and LDN. I tried an NSAID years ago and it helped but I was scared it was ruining my stomach. How long can we be on an NSAID with a stomach protector?

I think my new rheumy wants to add or take away one med at a time. I currently take Enbrel, prednisone, Zyrtec, nasal spray, chest inhalers, Ambien CR, Lorazapam, 2-4 Aleve, Tramadol, Calcium, multivitamin and now minocycline. I am so embarrassed when I go to the doctor and I have this long list of meds. My instinct is the Enbrel has me sick all the time and causes the sleep disorder. However, it has my inflammation down and I am functional but I am no where near normal. When I sop the Enbrel for bad illnesses, I am back to having severe debilitating pain. Currently, I have mild to moderate pain every day with fatigue all day and now with dizziness and nausea (no appetite) and severe dry mouth and headache (on and off).

You guys are great for reading my posts, sharing your experiences and helping me not feel so alone living with a chronic illness at such a young age. I try to look at the positives as much as possible - seeing it could be worse, I cherish my 4 year old daughter and appreciate my hubby but there are times when I think please God take me, I am done fighting this crap.

Hi Wendy: Glad to hear the Methotrexate is helping you. I just got enrolled in the Enbrel support program and saved some money. It's insane how much all these meds and doctor visits cost. I am not on disability and work very part-time. I tried to work more hours, but the more I work outside the home, the more I get sick because I work in health care. I know I need to find work, not working with the sick.

Hi Winter, good to meet you. I've been gone for 6 weeks and have a lot of catching up to do and new members to meet. I was reading your drug list and one stuck out and can be the cause of your fatigue, dizziness and nausea. The Ambien CR. As Wendy, Donnette, and Sue were saying about bed time is great advice. Talk to your doc about stopping the Ambien and trying either Flexeril or Soma. It took years to find the right cocktail for me, Soma, Trazadone, Lexapro at night and I wake up with no drowziness... no side effects....
Cindy

Hi Cindy: Thanks for the sleep tips. My rheumy brought up Soma but I thought he meant Sonata, which I tried with no success and accidentally said "tried that, it didn't work". Why do we need to take so much stuff to sleep???

And how do I wean off the Ambien? I am addicted to the stuff and can't sleep at all without it. I would love to feel refreshed after sleeping and never do.

I am optimistic now, I will be getting better sleep someday .

Thank you!

in answer to that last question, think its totally variable. i've been on a stomach protector since 1993. started playing with nsaids in 1998. since ulcers run in my family (and i have the same gene as my stomach will attest to), though i keep trying, i really can't take nsaids at all, even the cox2 inhibitors eventually get to me. but others take them for years without problems. we're all just too individual in this respect. let your stomach be your guide. but do realize they're all a bit different and even if one bothers you, another might not. i've tried 9 (nsaids and cox2 inhibitors) so far and will be trying #10 this week. i was afraid to play with them after my past experiences, but since my gastritis is very painful and i now know what the beginnings of edema feel like, am less afraid to experiment since just a little bit of a problem can be detected right away and i can quit at the first sign of problems. if i didn't get pain from my stomach, like some can die from a bleeding ulcer with no pain, if that were me, i'd be a lot more apprehensive about experimenting.



i know. i wonder about all the drugs i'm on too. but i did start mine mostly one by one, many years apart. and this past few years, having to start several in short succession, talked to my doctors about the order, one at a time to make sure if there were side effects, i'd know what was causing what. i think in this way, have been able to minimize the side effects, but its always possible something is causing an issue that i'm just not aware of. and then being careful that there are no drug - drug interactions, that's important as well. my old GP was good about checking that when writing a new script. my rheumy here gave me scripts for LDN and tramadol on the same day, two drugs that have drug drug interactions, thus i also always double check with the pharmacist before i fill a new script. and when i was on vioxx and zanaflex, was lucky, very lucky, as that turned out to be a dangerous combo, before they knew about that drug drug interaction. the vioxx caused the zanaflex to lower my BP lower than it normally does, went as low as 80/55. i find so many of these drugs to be so helpful, just need to be careful and informed i think.



hope being here helps you through those hard times.

good to meet you!

It is a tricky thing to wonder how our stomach is holding up. The zantac makes me not hurt and get nauseous etc, but without a scope, I can only hope I'll never bleed to death internally. Scary stuff.

Celebrex used to cause my lower legs and feet to swell so I would only take it in short spurts and quit if the swelling came back. Well late this summer I went back on the celebrex and have not had swelling yet (as of December 6). Crossing my fingers and knocking on wood!!!

I realize I mis-spoke on my dose of cyclobenzaprine. It comes in 10mg tabs, so I take 1 or 2 depending on if I have had near charlie horse cramps in the day or if my legs feel more relaxed. In the winter and when I try to do extra stuff I usually take the 20mg.