I am trying a new med. Been on numerous biologics along with a handful of other meds. I am hoping by Christmas, I will feel better. Any opinions on the drug minocycline?

Hi Winter,

Welcome to KA. I tried minocycline for 6 months with no improvement but I have RA not AS. It's possible that 6 months was not long enough but my CRP and ESR had got so high that my doc wanted to switch me to methotrexate and not wait any longer to see if minocycline might work. He was worried about internal organ damage from the high levels of inflammation if I waited any longer.

Hi Wendy: Thank you for sharing your experience and sorry you have RA. Are u still on methotrexate and if so, did it help pain and your CRP and ESR?

Yes - I'm still on mtx - have been for over a year. I believe it's helping although I've also been taking progressively lower doses of prednisone and until I've weaned myself right off prednisone I'm not sure I can confirm that the improvement is entirely due to mtx. My CRP was over 100 and is down to about 11 - still too high but hugely improved. My ESR was just over 100 and is now down to normal. Pain levels also improved (although they're not completely gone) and I was able to wean myself off opioids.

I tried a 10 day run of Minocycline. When I was eating a strict no starch diet, it seemed to work. So I got excited thinking *maybe* I didn't need the diet, but the pain and stiffness came back with Mino and regular eating.

Good luck to you!
-Donette

I tried for a month to clear up an outbreak of foliculitis on my shoulder and chest. It helped a little. I saw no change in pain or stiffness in that month. However the month afterward, I tried Hibeclens skin cleanser and it worked better than the minocycline.

Wendy, I am glad you are having improvement with methotrexate and prednisone. I am on prednisone too, 5mg every other day right now and it has been a life saver for me with flare ups to my joints and skin. Have u tried biologics? My sister, who also has AS told me methotrexate was hard on her body.

Hi Donette: thanks for sharing your experience. I am 35 and feel 90 these days with low blood pressure, infections/viruses, poor sleep, dizziness and nausea and forgot to mention pain and stiffness all over. I put on a happy face for my family but inside I feel like I am dying. My new rheumy added minocycline to my list of meeds and it is helping with stiffness but It increased my dizziness and nausea today. So glad I have you guys for support . My family doesn't know how to support me.

Winter,

I remember being dizzy/nauseated with mino too. I was also trying out a pain killer methadone for the first time too. I was so dizzy and sick that I laid in bed for 10 days last December. It was awful. I always assumed it was the methadone, but it could have been both.

Do you take anything to help your sleep? That is what I take the cyclobenzaprine (flexeril) for. It is a muscle relaxer and I take it before bed (5-10mg). I could NOT sleep before this med and thought I might lose my mind from lack of sleep. The only bad side effect I notice with this is that it is hard to wake up early. The earlier you can take it at night, the earlier you can wake up in the a.m. But prepare for total relaxedness/jello knees about 45 minutes after taking it. I don't hear my hubby's snoring anymore. Tee hee.

I also take LDN, (low dose naltrexone) also see ldn.org for more information. It is kind of an immune modulator, but has the opposite reaction of the prednisone, LDN boosts your immune system and many of us AS-ers feel it helps us heal faster from "injuries" or flares etc. With LDN, you are not supposed to take pain killers (although some AS-ers have tried and had some success so long as LDN was out of system prior to taking the painkiller.) Also no prednisone, or biologics as they lower immune, thus having the opposite effect. That the only bad side of LDN, no pred or pain killers.

Thats a lot of info, and I don't expect you to change all of your meds, these are just some suggestions that work for me. It is a long process trying everything out and then finding something your doc feels comfortable prescribing and that gives you some positive results.

I am also taking 2 nsaids right now (celebrex, etodolac) because the 2 together work magic for me. Alone, they only work when I am strict with the diet. I have just jumped back on the diet boat and am hoping to be able to drop one or both nsaids in the coming weeks. Last winter I didn't have LDN, (opted for pain killers which gave me constipation to the point where I wanted my life to end) and I need prednisone to get out of bed. (I also take zantac to protect my stomach while on nsaids).

This winter is soooooooo much better. I KNOW the diet makes a difference, and the two nsaids plus LDN plus my muscle relaxer make life liveable. I am not normal by any stretch of the imagination but I no longer feel like or desire death as a merciful release from this existence.

Glad you found us. This place is such a huge help to me.

Take Care,
Donette

think i've discovered a lot of the same things as donette,

instead of flexeril before bed, i take zanaflex. its similarly a muscle relaxant, but only lasts in the blood stream for 6 hours, perfect for a 7-8 hour night of sleep. it lowers my BP and makes me tired for only about an hour or two, an hour or so after taking it. when i took flexeril, i felt like zombie marshmallow man for days after the one pill; i just couldn't handle it. but the zanaflex is better for me. i also take it other times when i really need it, like yesterday, my neck and upper back/shoulder area was so bad, it did help a bit, that plus some ice and i was a bit better. i've also heard some like skelaxin. anyway, i agree with donette, muscle relaxants are a nice addition to the toolbox. it was the first med i was given successfully about 10 years ago that made a big difference.

i too am on LDN and have found it works just as donette explained it! another useful tool for the toolbox. i've been on it a little over a year now.

i also took pred for a week while on the LDN. maybe the LDN couldn't do its thing that way, i don't know. but the pred worked so awesomely on the inflammation, there really wasn't anything to "heal up", so maybe that's why.

currently looking for an anti-inflammatory. 9 down due to side effects. but going to try relafen next. in the meantime, flector patch over SI joint helps that, a lot.

so, like donette, have utilized a multi-pronged approach.

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.