Ankylosing Spondylitis

[Trinket]

Hello fellow COTHers.

I’m sitting here, waiting to hear back from my doctor (rheumatologist), wallowing in some sadness.

I went for a three month routine checkup for my fibromyalgia, to see how things were progressing on Lyrica. I told her it’s much improved, but I still get some flare-ups (expected, because I’m not active much due to an unknown heart issue) in terms of pain. My fatigue however, is static, hasn’t changed.

So through talking with her about all my many issues, she looked at past bloodwork (My b12 was very very low (102), so it’s back up at 400 and rising still) and she noticed something a little odd.

ALL my recent bloodwork, I had higher levels of inflammation. The first couple times she ruled it as run-down or sickish, as I’m known to catch almost everything.

But 5 bloodworks in, she thought maybe we’d look at other things. One of those being AS… Mixed with my neck and back pain + fatigue she wanted to rule that out first. As far as I’m aware, that was ALL she tested me for, a marker for that.

We both left feeling fine and happy, with AS being a very low risk.

Until this morning. She called me and left a message (early morning, late night, I slept in) saying call her secretary as soon as I could, about the bloodwork results. I called, unfortunately doc was out of the office and only left a short note for me that read “Needs an MRI, for results of bloodwork”

Hopefully I’m just freaking out over nothing, right?

If it is AS, what treatments are there? I know TNF blockers are promising, but as far as I know, they both expensive, and not great for people who get infections a lot (yay me!).

Anyone want to share insight? Is riding good for AS? Will it stop me/limit me at all? I ride gaited already anyway, and only do low-impact trail riding, so I think it’d be good?

Also: My pulse is STUPID high all the time. I see a cardiologist for that next week. ECG was fine, except for high pulse. (Average resting is 115, highest it’s gone while I’ve been monitoring was on a hot day of only walking, it shot to 158!) Dizzy spells are very common.

I’m 25, and wallowing in some sadness today, I hope it’s a false alarm.

[Khadiiyo]

I don’t have AS, but I do have a form of self-fusing spondylolisthesis. Short explanation my L5 and S1 vertebrae have completely slipped off of each other and because it is bone on bone the impact and inflammation have resulted in self-fusion. I hvae very good days and very bad days. There are several Facebook groups that deal with AS you may try looking into that and finding riders in those groups. I know there are a few people in my Spondylolisthesis FB group with AS, but they are not active at all. I don’t want that to discourage you, they have a LOT of other isses going on in addition to the AS. As for riding, I have found that staying active, riding in particular, has kept me stronger than most people with spinal conditions. The true danger is going to be a fall. So while I can’t sympathize completely with you, I do understand chronic, daily and often times unexplainable pain. I hope you get the answers you need soon!

[WannabeDQ]

My husband has AS and it is managed very well with Humira. It took away all the pain and stiffness. As the above poster said, it’s a fall you would have to be careful of, otherwise you should be able to do everything as normal.

[Trinket]

Thank you both! I’m very hopeful that with constant movement I’ll keep myself better off. (Plus, without riding…Yeah good luck getting me exercising, I have depression/low motivation, so riding keeps me active because I LOVE it)

The test for the Gene came back positive…Next up is a confirmation with an MRI, and I’ll be left waiting until mid-September for an “emergency” MRI (It’s a low-level emergency, so not as fast as some, but still faster than the average wait of 4-5 months!)
If AS comes back negative then we still have a mystery illness of some form (My inflammation is disconcertingly high, with no sign of infection + heart issue of unknown origin)

Sadly, AS explains a lot of issues… I’ve had stiff heels and sore feet for years now (with no improvement with proper shoes and physio), I have SI pains and bursitis (which might not be bursitis), my back has always been bad, so really I haven’t noticed anything SUPER new with that. And my eyes have had some recent flair-ups that got ruled out to Bacterial pink-eye caused by uncontrolled allergic conjunctivitis, which actually might be the start of something more severe (my symptoms include major vision changes (blurry!), pain, and light-sensitivity) which has all my my doctor concerned that AS is a distinct possibility.

The wait is going to kill me. I just want to KNOW: yes or no! If no: move on to more tests to find out what the heck is wrong. If it’s a yes: I want to start treatment. It’s the waaaaaait D:

P.S. Falling is always a danger for me due to other back issues, so at least it’s not super new! Haha…

[Trinket]

Small Update I guess: Saw the cardiologist. My heart function is fine! It’s just super fast… No arrhythmia (Wearing a heart monitor for two days SUCKS, couldn’t shower or anything and the tape they used to keep it on was so itchy!).

He did a bunch of stuff (Ultrasound was clear of anything abnormal besides the fast pace), and is tentatively calling it POTS (I go for more tests soon to be absolutely sure!). Which is, as far as he told me and what I read a type of Dysautonomia, which explains a lot of symptoms.

However, he thinks it’s secondary POTS, not primary. So that leaves a couple things he wants to test for: Vitamin deficiency (I was already low in b12, but that’s stable now thanks to vitamin pills), per-diabeties (unlikely, I don’t have much in terms of risk factors or symptoms, but we’re checking anyway), or autoimmune problems (Which is likely…).

Could be other things as well, he says if those three come back clear then we’ll look at less likely causes, and then lastly call it primary POTS.

He says it MIGHT go away on it’s own…but unlikely given my other problems, so something I’ll have to manage constantly.

The saga continues…

[TFF]

I am 24 and used to ride fairly competitively. I was diagnosed in 2013 with fairly severe AS, with both SI joints fused and fusion beginning in my L5/S1. After about two years of on and off doctors appointments because of a bunch of seemingly random issues, I finally saw a rheumy and tested positive for HLA-B27.

I tried Humira (with no success), Cimzia (with a fairly good amount of success), and now Enbrel (with great success). I am also on Plaquenil and Sulfasalazine (DMARDS) and Diclofenac. Those are the major players at the moment, not including the pain meds.

I stopped jumping, but bought myself a little western pony that I take trail riding and occasionally do some ranch sorting with. Depending on how bad your pain is, you should keep riding as long as you can. Once you lose muscle strength, it’s really hard to get it back.

It may seem like the end of life as you know it, but AS comes in all different severity levels and the drugs are really good nowadays. They used to treat AS with BUTE of all things! No longer legal in the states through

PM me if you have any questions! I’m basically an AS expert unfortunately haha

[propspony]

Hey. I just ran across this thread. After years of horrible pain and stiffness, I finally found a dr who listened (and showed horses at a very high level) and she completely threw me for a loop when she said it seemed highly likely that I had this.

I’d never heard of it, so I went home and looked it up, and it is EVERYTHING that I’ve been going through. Even some symptoms that I hadn’t told her about because I thought she’d think I was crazy.

I went for the first round of bloodwork yesterday, and it’ll be a few weeks before that comes back. It’s sad, but I’m actually so relieved right now. It’s like I was looking into this black hole of never ending pain that nobody believed I was feeling, and now… maybe… there will be something that will help in the future.

But in the meantime. While I wait for the next steps to occur, is there anything that you guys have found to help with the pain and stiffness? I’m crazy active, and I keep moving all the time. (Ride every day, run and clean stalls) but are there any tricks or tips you can recommend?

[Doctracy]

I have a different joint and back/neck disease. I’ve found swimming,rowing and walking to be very helpful.

[WannabeDQ]

propspony - I feel like my husband could have wrote that exact post! He was eating so many aleve a day it was destroying his stomach and he was literally pooping blood. I admit, I didn’t even realize the amount of pain his was in on a daily basis. It wasn’t until a spine doctor friend convinced him to get checked out that he finally went to see a dr (you know how men are…). Anyway, the difference in his quality of life since he started medication is night and day. I haven’t bought a bottle of aleve in months! I hope you find the same relief he has, I feel for you. Keep us updated!

[Trinket]

Update on mine!
It’s NOT (likely) AS for me! MRI showed no active inflammation (although my new Rheumy is disappointing that it was done without an injected dye in the SI joint to highlight inflammation more, so he might re-check it), BUT I did have a cyst. Apparently a Tarlov cyst, we’re watching it, that’s about it for now.

My symptoms didn’t match very well, although I have pain, it doesn’t get better with movement, it gets worse.

With recent issues (Joint swelling: in my shoulder, inner hip, wrist and ankle so far… And appearance of Raynaud’s syndrome, and POTS (over a year, only recently diagnosed)) we’re looking into other autoimmune disorders (Sjogrens, lupus, MCTD etc) and also things like MS.

The mystery continues! But we’re getting closer… Problem right now is the horrible, agonizing WAIT. Sloooooooow process.

@ Propspony: I hope you find out soon! My pain, since it’s not AS, seems unaffected by use or rest. Aleve isn’t really doing much, full Naproxen is working better, but I use it sparingly. If anyone else has advice that works let me know as well! haha

So far it’s been eat healthy, take my vitamins (B12, my immune system doesn’t let me absorb it right), and rest as needed, and try not to get deconditioned. Need to find the correct cause before proper treatment can start (boooo)!

[propspony]

Wow Trinket! I hope that they figure it out. One thing I’m learning is that Autoimmune can be SO hard to pin down. Argh!

Well, I’ve taken some of the advice that I’ve seen on other boards, and also from a very helpful thread on here from a few years ago, and things are a little better. My dr. recommended switching to Aleve from Ibuprofen, and that has helped a bit. In any case I haven’t cried from pain in a few days, which is a win. lol.

Exercise does help a ton for me. Even if all that I can do that day is walk briskly with the dog. But the days I can run I feel pretty good for a long time afterwards. (yes I know it isn’t recommended, but… I freaking love to run)

@WannabeDQ Exactly! I’m a trooper. I mean, I ran on a badly sprained ankle for months once because, well… it didn’t hurt enough for me to stop. lol!

But even I don’t think I realized how bad it had gotten until I couldn’t stop crying, I was keening through my rides, and I was at something like 3200mg of advil a day, and it was barely taking the edge off. Even then, people and doctors were STILL telling me that I was a whiner, or that “everyone hurts and is tired” that I needed to “get over it.”

i guess it’s the lobster in the pot thing. If it happens gradually, you just don’t notice.

So glad your husband is feeling better now. I wouldn’t wish this on my worst enemy.

What did they do to diagnose your husband, if I may ask? I just did the first round of labs… waiting on results.

[sketcher]

Please take something into consideration and do not write it of as the fad it has certainly become. I was every but as sick and in pain with roving symptoms energy thing from insane heart palpitations that would come in waves several times a year to fibro symptoms, arthritis, raynauds, neuropathy in my feet, severe muscle spasms in my neck, myofascial pain, migraines, balance issues…you name it. I got diagnosed with everything under the sun and the crazy things is these ‘conditions’ would come and go. After a while I was moving towards the MS wastebasket and then found an environmental physician who diagnosed me with gluten intolerance. I was one sick and hurting pu

[sketcher]

puppy and removing gluten resolved 90% of my symptoms. So even if you have been tested negative for celiac please try a gluten free diet. Even if gluten is not the primary cause of your issues, it is an inflammatory and might help you feel a but better anyway. Just try it for one month!

[Everlong274]

do you know what your hemoglobin was on your last blood test?

For almost a year I had an elevated heart rate, couldnt get out of bed, everythign was swollen and hurt, dizzy spells, shortness of breath, and thought I had to give everything up. Turned out I was severely anemic, both iron and B12.

They said had I been discharged the day I went to the ER (after about 6 people convinced me it was just anxiety and being out of shape), I would have likely had a heart attack with any more increased activity. Just a thought.

[propspony]

Wow, that’s crazy Everlong! I’m glad that you found someone to recognize what was going on! i’m still waiting for my followup appt. It’s in a few weeks. They did run a full CBC on me, so if I’m anemic it’ll show up. I’ve been anemic in the past, but my last few workups have been normal…

Now that you’ve addressed the anemia are you back to feeling more normal? How long did it take, and what did they put you on? I know I had a really hard time finding an iron supplement I could take…

Sketcher, I don’t think it’s gluten intolerance. if just because out of the blue last week, most of the pain and symptoms just, went away. There’s still some normal stiffness and things like that, but the horrible things, are gone. As has happened many times in the past. I didn’t change my diet at all.

Of course two hours after I noticed I was pain free I came down with a horrible head cold, so… yay. Go me. ARGH!

[Everlong274]

[QUOTE=propspony;8374152]
Wow, that’s crazy Everlong! I’m glad that you found someone to recognize what was going on! i’m still waiting for my followup appt. It’s in a few weeks. They did run a full CBC on me, so if I’m anemic it’ll show up. I’ve been anemic in the past, but my last few workups have been normal…

Now that you’ve addressed the anemia are you back to feeling more normal? How long did it take, and what did they put you on? I know I had a really hard time finding an iron supplement I could take…

Sketcher, I don’t think it’s gluten intolerance. if just because out of the blue last week, most of the pain and symptoms just, went away. There’s still some normal stiffness and things like that, but the horrible things, are gone. As has happened many times in the past. I didn’t change my diet at all.

Of course two hours after I noticed I was pain free I came down with a horrible head cold, so… yay. Go me. ARGH![/QUOTE]

I was admitted to the hospital and had 4 blood transfusions and 1 iron transfusion. I also had 2 outpatient transfusions of 10 Im supposed to have annually from now until forever.

After I caught up on sleep, I was feeling great. And all these things that I thought were due to other factors were actually related to the anemia. I had been close to transfusion low in 2011, but was told to just take supplements and then lost health insurance so never followed up. I still fee great most days. I do get really tired after long days or if I dont sleep and then have to work. Or if I exercise a lot, it takes me awhile to catch up on sleep.

The best iron supplement ever is called Hemaplex. It is time released and does not mess with your GI system. It actually brought my hemoglobin back to normal without me finishing the infusions. Dont misunderstand, i will be finishing them, but I had a scare and ended up in the ER and my levels were mid range normal, when they had been on the high end of low the previous time they were checked about a month prior. 30 day supply is about $13 at my healthfood stores or you can find cheaper online.

[propspony]

Wow. I’m glad they finally figured it out. That is so scary. If I may ask did they figure out what was causing the anemia? I never figured out what caused mine, and it was a pretty mild case compared to yours!!!

[Everlong274]

I PMed you

[Trinket]

@Everlong274 - My bloodwork (CBC included) is normal. I was anemic (B12 only, I’ve had iron go low a lot as a kid and teen, but it’s been stable these days!) a couple months ago (5 now? Time flies), and I found out I had Pernicious Anemia, and I have to be on B12 for life now.
It’s an autoimmune disorder, where my immune system attacks my gut and kills the Intrinsic Factor needed to absorb B12. My B12 level was 101 before they noticed I was even low!

But that is solved, and unfortunately I’m still s sick and tired as ever, so something else is going on still. We’re getting closer, with new issues popping up every month or two (Newest is Raynaud’s syndrome and the joint swelling).

@Sketcher - I have been on a gluten-free diet before, with no help (didn’t make any difference at all, and my inflammation levels didn’t even go down on it) so I don’t think I’m even Gluten Intolerant. But thanks for the suggestion! (And I did it perfectly, DH dad and sister are Celiac, and we both tried the same diet)

[WannabeDQ]

[QUOTE=propspony;8363773]

What did they do to diagnose your husband, if I may ask? I just did the first round of labs… waiting on results.[/QUOTE]

His labs came back positive for the HLA-B27 gene and inflammation. I will double check that was it but I think that in addition to his symptoms it was enough for a diagnosis.