Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Checking in

Hi all,

I could stand to talk to someone about my health tonight, so here I am, checking back in with what's been a great support resource in the past.

What's new in my life outside of my health: I took my own photography business full time in April, quitting the day job I've had since 2010. I work from home now (my husband works from home as well, though he is not self-employed), other than when I'm out on location for shoots or meeting potential clients at coffee shops.

I don't currently have any local confidantes other than my husband, as my parents and my closest friends all moved out of state last year.

As for my health:
Over the last 4 years, for my PsA inflammation, I've tried numerous NSAIDs, Sulfasalazine, Plaquenil, Humira, Enbrel, Simponi, Methotrexate, Cimzia, and most recently Apremilast/Otezla.

Of those, Relafen, my NSAID, still helps a little; enough that I've continued to take it since I went on it 3.5 years ago before any of the biologics. Plaquenil, which I also started about 3.5 years ago, helped a little with peripheral symptoms, but I went off it when I started Otezla two months ago, and didn't immediately notice any difference in my symptoms. Humira was my first biologic and worked amazingly for six far too short months before seeming to stop working altogether. I went off it in January, 2011. Nothing has come close to working as well since. Simponi helped a little bit, but didn't even come close to lasting the full month, and insurance won't cover more frequent dosing. Enbrel and Cimzia didn't seem to have any effect. Methotrexate was helping quite a bit peripherally at .8 mL, but was decreased to .6 mL when Otezla was introduced. When titrating up, .6 mL helped, but would wear off toward the end of the week.

Well, I've been on Otezla for about 2 months, and unfortunately, the side effects I was supposed to adjust to after the first two weeks are still giving me problems. The migraines ceased, as did most of the nausea, but I still have diarrhea galore (though admittedly less than I had the first two weeks). For about three weeks, I've been down to half of the clinical dose and doubling up on probiotics to try to get my body to adjust, but it's looking to be a no go.

My bloodwork from last month came back at about the same time that we decreased the Otezla, and oh boy, my liver levels are out of whack, so my rheumatologist decreased methotrexate to .4 mL, which was where I barely noticed improvement while titrating up. Let's just say I'm more than barely noticing the increased inflammation. I can't wear my rings right now, because even if they fit fine when I put them on, my fingers swell up around them within a few hours. My fatigue is back with a vengeance, I'm hot flashing again, and though my pain is bearable (about a 5 or 6 with Tramadol on board), it's definitely increased as well.

Great timing... I have my longest wedding of the season requiring about 3 additional hours on the road coming up on Saturday. I do at least have a second shooter/assistant for this event.

I see my rheumatologist on Wednesday, and am curious where we go from here. She and I were both optimistic about Apremilast (brand name Otezla) for me; she was involved in its clinical trials, and saw really incredible results for some of her other PsA patients. Alas, I can't tolerate the side effects well enough to even see if it would help my arthritis, and even if it did, I just.. can't tolerate the side effects. I'm not sure if I've lost any weight in these two months because I don't have a working scale, but it wouldn't surprise me. I lost a lot of weight with the GI side effects I had on Sulfasalazine. It's really disappointing, I think because it's the most hopeful I've let myself be about a new medication in quite some time.

On top of feeling like crap physically and feeling bummed about things not working out with Apremilast, my husband has been on my case a bit this week, because he thinks I'm not being proactive enough with my health. Compared to a few years ago, I do invest less time, energy and effort in communicating with my doctors between scheduled appointments about every single symptom, staying educated on all the latest medical news, and talking about my health with other patients all the time, sure, but I don't really feel like I've seen any decreased returns in terms of making progress with treatment. If anything, it's been much better for my mental health. Outside of incidents like this flare, I've been living with a pain level that's tolerable to me. I've been getting good sleep. I'm still chasing how good I felt on Humira, but I'm usually doing much, much better than I was during much of the time that I was extremely proactive.

My husband doesn't think my usual pain level should be considered tolerable, which I guess is where we don't see eye to eye. He wants me to talk to pain management about other options because I'm still in pain when on pain medication, but I'm not crazy in thinking that I'm not necessarily supposed to not have any pain just because I'm taking pain meds, right? I still need to function. I need to safely drive a vehicle, coherently answer emails and phone calls, run my business, and live my life. Tramadol takes the edge off, and that's all I was looking for in a pain medication. He does make a good point in that when I have flares like this one, I don't have medication that still allows me to function. Of course, my pain level is only one of many distracting factors when my inflammation is elevated.

I recognize that my pain does affect us both. Our sex life has improved, but my body still often doesn't cooperate (though more often than not, it's some still undiagnosed mystery pain in my abdomen that's the big problem there). I'm grumpy when my pain isn't controlled well enough. He has every right to raise concerns, but most of the time, I'm in an okay place emotionally with my health. It's unfair, it sucks, but I've had it worse than it is, and I get on with my day. He's concerned about me becoming complacent about it, but there's still no cure, and I continue to try new medications that my doctor suggests when the latest one doesn't pan out, and do my best to get my sleep and exercise. I don't think there's much else I can be doing, so I don't worry about it. If that's complacency, it feels like the healthiest way I can approach things for now.

Does that make sense? Sorry about the novel.

Welcome back Mary! I'm sorry you're having so much pain and difficult side effects.

Your husband is being a typical man. That's not meant as a put-down. What I mean by that is that men are genetically programmed to fix things, and it frustrates and upsets them when they can't. He loves you and it hurts him to see you in pain, so he is trying to "fix" you the only way he knows how: to push you to be more aggressive with your treatment.

I agree with you that there is a fine line between having enough pain relief to function normally vs having so much medication on board that you turn into a zombie. There may be times though, when a flare is particularly bad, that you need some zombie meds on hand. You don't have to take them regularly, but it would be a safety net for the days where you really just need a break from the pain.

I also agree with you that it's not good to obsess over your disease. Research and communication with your doctor is good, but you don't want to get to a point where that's all you think about. Again there's a fine line - the line between managing your condition vs obsessing over it. You have to move on with your life, which it sounds like you are doing, and doing well at it.

Your mystery abdominal pain concerns me. What kind of progress have the doctors made in trying to determine the cause?

I am so sorry to hear that you are struggling with pain and inflammation and that your abdominal issues are still a mystery. For what it is worth, I agree that you sound like you are dealing with it in the best possible way - pursuing appropriate accessable medical treatment and trying not to obsess about your health issues. I hope some better answers are found for you soon.

Thanks y'all. It's nice to get that sanity check.

As for the abdominal pain, there hasn't been any recent progress. I was scoped and scanned every which way for numerous gastrointestinal conditions, but IBS and a hiatal hernia are still the only diagnoses in that realm. My feeling is that it's my intestines protesting, ahem, internal pressure. I know from a few different tests that I have many intestinal loops that dip unusually low into my pelvic area. That portion of my intestines is typically what spasms, and there's an area that always hurts when stool passes through that seems to correlate to the abdominal pain during sex. Pelvic exams also hurt when the doctor puts pressure externally on my abdomen while checking things internally. The only other thing currently on the differential diagnosis is endometriosis, but nothing has shown up on sonograms and I haven't agreed to exploratory surgery.

Good to hear from you again, and its great that you are doing what you want to do with your work.

Your husband sounds a bit like the way my dad was with mum - he just hated to see her in pain, and like Ginny said, wanted to "fix" it.

Keep hoping with the meds - new ones are being developed all the time, so maybe sometime soon someone will come up with one that you can tolerate and that doesn't do a number on your liver. Same with the abdominal stuff - someone will figure it out. Maybe you could ask to see a different kind of specialist - like a colorectal surgeon, or motility studies. I'm with you on wanting to avoid exploratory surgery though.

Hi Mary,

You really sound mentally solid and balanced to me. Like you, I accept a certain level of pain as normal and tolerable versus adding pain meds. However, I have one on hand for times when I must get a break from it, but I take it reluctantly and sparingly.

You mentioned Simponi not lasting the full month. I'm on Simponi and that is also my experience. I'm seeing my rheumatologist June 19 and I'm planning to discuss the new Simponi Aria, which is Simponi by infusion like Remicade and I believe therefore it offers flexibility in dosing and frequency. Have you explored this? Just a thought. Maybe this would be worth a try for you.

All the best to you!
Barbara

Thanks Barbara. I didn't know that form of Simponi was out yet! My rheumatologist mentioned an infusion version coming down the pipeline when I went off Simponi last year. I see my rheumatologist tomorrow, and I'm sure we'll have some sort of new game plan. That could be an option, as could trying Remicade for the first time (we were going to try it instead of Cimzia, my most recent biologic, but there were insurance complications that were taking too long and Cimzia was easier to get approved). I never really finished giving Cimzia a good try, actually, because I kept having infections during the first few months, and then Otezla hit the market, so we switched to that since we'd both been waiting with bated breath for it to become available. I'm also interested in giving Humira another try, to see if it would work again. I'm probably just going to trust my doctor's intuition on what she thinks is the most likely to work for me. I think a big part of why I've chilled out some about researching what new meds are hitting the market is because my rheumatologist is heavily involved in research, and keeps me informed, unlike my previous rheumatologists and some of my other specialists. She listens and respects my opinions, and as a doctor, is a great advocate for my care.

I just hope there's something she can do for me in the short term to get me through this weekend's shoots. I hired an assistant/driver/heavy-stuff-carrier at the last minute today for the wedding, and that should help some. I'd really like a short dose of steroids to knock down my inflammation (however briefly), but I don't know if that's feasible with the liver concerns. We'll see.

cemc, exactly. He goes through bursts of trying to fix it, whether it's pushing me to talk to my doctor, pushing me to exercise, etc. It's a good trait most of the time. I did have to make him examine some of his word choices though, as I don't appreciate the connotations of telling me I need to be in less pain than I currently actually find tolerable most days, so that my "life is worth living", so I can "have a real life", etc. He saw my point.

I called my mom for a chat this morning, and all of about ten minutes after our call (long enough for my mom to recount the subject of our call), my dad calls me up too to try to help me solve my problem with needing help for this weekend's wedding. It's sweet. He made me promise to call him if I need him to fly down and take care of me. Heh. I'm very glad to say I'm not that bad off, as much as I'd love to see my dad!

Saw my rheumatologist this morning. She's concerned. I think her exact words when she looked at my fingers/hands/wrists were, "Oh wow! You're really swollen. This is by far the worst I've seen you."

Joy.

Got a steroid shot in the butt, and a medrol pack to start on Friday. Switched probiotics and changed my Otezla dosing schedule to give it one more asserted effort until Monday to see if we can find a way for my body to tolerate it, and we'll reassess with a phone consultation at that point. Can't take any more methotrexate until my bloodwork comes back.

I'm SO fatigued, but have SO much to do. All I want to do is cuddle with my dogs, watch Orange is the New Black, and eat ice cream. I'll still take it easy (and do my best to eat well), but the stress of not getting things off my to do list would not be helpful.

I'm glad you saw the rheumy. Hopefully the shot will kick in quickly and bring your inflammation down enough to take the edge off your pain.

Fingers crossed that the changes bring positive results. Keep us posted.