My worst symptoms have always been in my neck, but I am female and anecdotally it seems more common for women to have neck involvement early, compared with me.
I have extreme spasm, likely due to irritation where muscles attach. It took me years to get diagnosed and I never did regain ROM in my neck, but I have otherwise found great relief from the biologics.
I am sorry you've had so much pain. I wish you well on your journey and hope you find a combination of medications and therapy that works for you.
My Dr is in a position where he thinks I should know within a month, but also he can provide samples for 1 month (at no cost to me), so that may impact his decision. I may have to try to convince him to perscribe me longer and I will have to find some $$ to self pay. Of course, I still hope to get results before the 1 month, but just thinking it through before the end of the month.
Winston, your neurologist says that Enbrel-induced neuro symptoms usually start bilaterally in feet and lower legs, does that mean that Enbrel tends to affect the same specific region of the brain? I don’t know a lot about this topic.
He referred me to an Infectious Disease Specialist, I see them next week so will know more then. In the meantime they sent me for a chest xray. To be honest, I'm afraid of not treating it as much as I am afraid of treating it.
Update: Infectious Disease Specialist wants me to treat what all agree is Latent TB. She had no problem with putting it off until the fall, after I return from vacation. (Gives me time to change my mind.) My concern is, I have been working so hard on the NSD, supplements, probiotics and trying to fix my microbiome. Will taking the antibiotics for the TB going to mess that up? I did read the thread here discussing Rifaximin as a treatment, maybe the TB antibiotic Rifampin could be helpful? I haven't found anything on them and gut flora. I'd ask the IDS but their focus is on treating the infection not fixing my gut.
Also, my chest xray was clear with regards to TB but showed "hyperinflation with peribroncial cuffing" the Radiologist's impression was COPD. I searched here but did not find any discussion of that being an HLA-B27+ related issue? I had the report sent to my rheumatologist to see if he'll weigh in.
Five weeks into my Enbrel I suddenly developed sinus , mucus in the throat and constant headaches along wit pins and needle sensation in the head as well dizzy feeling. My rheum at the time told me to skip my 6th shot and continue week later. I thought I was feeling better so I decided to take my 6th shot as recommended. Well things haven't been better since then. All previous symptoms have return along with me just being in constant run down fatigue feeling.
I have my upcoming shot and I don't know what to do with it. I left a message for my doc and waiting to hear back. On the side note, I am on doxy (prostate) + ceftin (prevention for sinus infection).
I'm feeling ill despite being on two abx and rheum isn't sure if this is a bacterial or viral aspect. What do you all do in similar situation?
Bless you all that have the time, intelligence and energy to read all these scientific papers. My old brain doesn't understand most of what you said but I feel I got the just of it. Hearing your thoughts are very helpful to me. I have nothing of substance to add to the discussion. I only post to let you know, I appreciate very much what you are sharing. Thank you.
Personally, given my family history of gut problems (grandmother with colon cancer, mother with ulcerative colitis) and my AS-related heart problems, I consider biologics a much safer alternative than NSAIDs for me. I would not take NSAIDs continuously, although I still take them from time to time during flares.
mutagen, have you considered seeing a psychotherapist who specializes in treating patients suffering from chronic pain? All pain is mental and while psychotherapy can't make your pain go away, a good therapist can help you find and implement strategies to better cope with the pain and improve your quality of life. See https://www.apa.org/helpcenter/pain-management
Trying that still. I bought the recommended lamp: TL D 20W/52. I don't know if I am allowed to link things here.
I am not the best test subject because I started with a lower level of pain being 0-1 most days. I get a bit a morning stiffness and my eyes burn in the mornings. I have annoying foot pain when I run though. None of that has changed so far with the lamp. This might be much different for someone in a flare. I have done it just over 2 weeks now (7 times).
I mainly use it on the chest 3 times a week for 30 min. Sometimes I alternate to back. I try to stay 12 inches away but often get closer to about 8 inches if I am not paying attention. No burning or warmth from the bulb during the duration. Skin is still pale as before. Shouldn't be emitting any UVA because that is under 400 nm. This lamp glows between 400 - 500 nm visible light range.
No idea if there are any negative long term side effects with doing this. It seems like a safer way to get the effects of sunlight without being under the sun. I am under the sun about an hour everyday anyway so who knows. I will avoid any more exposure to the lamp more than 30 min 3x a week anyway. I will be trying it 48 sessions (4 months) before I judge it.
Hi, I know this post is super old, but I just read it and I have all of the same skin symptoms (butterfly/malar or rosacea rash don't know but it's been there since early teens) and the last year or so developing high sensitivity to cold especially in my feet and hands, and for the past several months I've noticed a red/pink discoloration that spreads on arms, knees, and back of my heels especially after a shower or being warm. Slightly red fingertips but nothing changing in appearance with my toes, even though they are more painful when they feel cold than anywhere else. Most of the time my feet are painful and cold, even when I'm in a warm environment. I was told at the rheumy that I probably have Raynaud's. My mom and her father both had Lupus and I'm worried about that too, since I've always had many of the symptoms, but they've tested me twice (3 and 1 years ago) and all the blood tests come back negative. I know AS symptoms can overlap so that makes me feel better. But lately I've also had a low grade fever and that's new. Can the blood tests change for whatever they look for with lupus? Or does all of this stuff have to do with Raynauds? I have looked at symptoms for it and a few things don't match up. Thanks for any feedback.
I am in the same boat. 30 years if increasing pain and no fusion. 3 years ago the SI joint pain became permanent instead of coming and going. B27 neg. I went to a new rheum who did a bunch of tests to rule out other things. He came to the same conclusion of AS but surprisingly I also have a gene for celiac disease. I have been eating gluten free instead of no starch for a few weeks to check it out. Interestingly I am having less chest pain and feeling a little better. Still in pain management after a year and a half on humira though.
I’m so sorry. It doesn’t surprise me. I’ve fluctuated from super skinny to heavy (with meds and not able to exercise). Pain has always been the same. Dumb people would say when I lost weight, “I bet your back is better.” No dummies, I’m skinnier, but feel worse off prednisone!
I’m sorry. This AS life sucks. It’s damn near impossible not to get hopeless. I’ve read about self compassion, but when it’s my body preventing me from doing what I need to do for my family and myself, who else should I beat up in my head instead? Sorry, hope I don’t get any of you down, but this is my reality and probably a lot of you too that never feel the relief of fatigue and pain getting better, regardless of any biologic. But I was a severe pain case early on,17 years ago. Pain kept me from finishing college. It’s still keeping me from my dreams and basic life stuff. And now doctors are more concerned with saving drug addicts. Beyond absurd. Good luck to us and the younger generation. It will probably take the next generation to see their error in fighting for people who don’t even care about their lives while we struggle and fight for life every minute.
Similar to you, I don't really have any visible effects of low T so doctors have said it wouldn't be a good idea to treat it and risk the side effects. The only thing I am wondering about is whether T supplement would help my AS fatigue levels along with (or perhaps instead of) the COX2 NSAID I am taking.
I was diagnosed with AS about 20 years ago in my mid twenties, but symptoms were so mild that I managed with occasional ibuprofen at the change of seasons to relieve some gentle lower back pain.
I led a fairly sedentary lifestyle - watching too much TV, sitting at a desk all day at work and generally not doing any exercise. Then I hit 40 and did a classic mid-life crisis thing: I decided I should get fit!
3rd Oct 2013 I strapped on a pair of trainer for the first time and ran around the block. It was about 2.5km (less than 2 miles) and it took me over 20 minutes before I came home exhausted and lay panting on the living room floor. I was less fit than I thought - this required a plan! A day or so later I had a plan: 5km in 30 minutes, 10km in an hour, a half marathon in 2 hours and perhaps a marathon.... with a crazy long term life goal of 4hrs!
<lots of details long story goes here>
18 months later I was a dedicated runner, loving my new found energy and having run my first marathon on Australia's Gold Coast in 3hrs 57 minutes! I needed a new goal!!!!!!
In September 2015 I went to Berlin and ran the Berlin Marathon (4:11 - but with a massive head cold)... it was amazing.... I was hooked and my new goal was clear: to complete all 6 World Marathon Major events! In October 2016 I ran Chicago (3:38), April 2017 London (3:36) and then set my mind on getting quicker chasing the elusive qualifier for Boston rather than continued globe trotting. In Oct 2017 I ran 3:18 in Melbourne surpassing all my wildest dreams and qualifying for the Boston Marathon in 2019!!!
Then 2018 happened....
I was tracking along nicely, feeling good until about October when I had a persistent hamstring tendinopathy that refused to go away and made running awkward and sitting down painful. I rested... and rested.... and did the right physio exercises. But when I got back to running I was tired... so very very tired...
My pace dropped and kept dropping - so I listened to my body and tried to back off and not do so much. By christmas I knew I had to start ramping up training to get back into shape for Boston in April, but at the end of January in the sweltering humid heat of Brisbane where I live, I got to the end of a 30km (20 mile) run and almost collapsed. I hit a fever, I got the sweats and my neck and shoulders stiffened up in a way they had never done before.
Over the next few weeks I ceased running completely in an attempt to recover - but my body struggled. Sore back, neck and shoulders became a regular thing along with various other symptoms.
With flights, accommodation and a lifetime dream at stake I was determined to take my spot in Boston, so without any training and feeling a little under the weather I started the race. I ran the first 25km but in a deliberate predetermined strategy, slowed to a walk/run for 10km and then walked the remainder finishing in 5:28 and really enjoying the occasion.
Of course the following couple of days I could hardly walk (as normal) and compounded that by jumping on a plane for 24 hours to get home!
2 Days later my body seized up, fevers, sweats, gastric unpleasantness and world record disabling stiffness hit me. My GP referred me to hospital where I was kept for 9 days with doctors unsure what collection of maladies were in play.
Some time later- they had reached a "Dr House" like conclusion: travel and exhaustion had weakened the immune system and allowed me to pick up both a gastric virus of some unidentified kind AND tonsilitis... My body went in to bat and fired up the immune system - but didnt stop firing. Autoimmune warfare kicked off and my AS went into overdrive.
Now some weeks later and all the infection nonsense and symptoms are gone - but I remain as inflamed as ever struggling with basic things like walking (feet and knees), typing (knuckles) and of course moving my neck is near impossible.
I'll have a rheumatology appointment in a few weeks and am hoping that some magic drugs will get me back to my 'normal' and that this isnt a 'new normal'. I have unfinished business: New York and Tokyo marathons still need to be completed!!!
Anyone else experienced the motherload of flare-ups after prolonged exercise and managed to get back to it? Give me some hope people!!!!!
I know there are some definitie tendencies in AS-type back pain but there's also some crossover features with OA and degenerative disc issues. For example, from what I've read from others on this forum (as well as other sites) AS-type pain can hit at different times of the day, it can hurt during rest or motion, and it can hurt really bad while sitting. All these features are common to other back issues as well. Oh, and NSAIDS help with other types of back pain, and not just AS.
Good advice from SouthernMoss: let the rheumy figure it out. That's one reason I'm keeping a simple journal of my symptoms, because it gets me to pay attention to the details of what, when, where, and how much. Now if I can just remember to write entries into it...lol
Thank you for the advice! My father-in-law has AS and he also has had success with mobicox (NSAID) plus a low dose of Cymbalta, mentioning the same idea that Cymbalta is prescribed for pain as well so it's a bit consistent with treatment for AS.
I successfully got a doctor's appt for late July (best I can do here in Canada where waiting lists are long...) and will discuss it with him, and in the meantime just relying on daily celebrex to keep my energy level and mood up.
I notice my AS pain and fatigue are much worse on dark days, and this season we've had so little sunlight. Even now in June most days lately have been dark all day. A sunny day makes a tremendous difference for me in pain and fatigue levels. I wonder if this is related to ASers being notoriously low on vitamin D, or that neurotransmitters levels like serotonin get out of whack when your circadian rhythms are messed up due to lack of sun. Sometimes it can be as drastic as feeling like I can't get out of the bed in the morning, then suddenly exploding with energy and silliness in the afternoon if the sun comes out (like a mild bipolar feeling driven by weather). I have not yet found anyone who can relate to this though, I just get a lot of confused looks when describing it.
From what I read seems tnf blocker further lowers levels of serotonin. Would be interesting to know if people with AS like people with fibromyalgia have lower levels of dopamine in substantia nigra, I recently read documented research that great way, beside drugs which eventually wane off and can cause other problems, to increase dopamine would be walking minimum 3 times a week for several miles. This was in relation to patient with Parkinson disease. But what was even more interesting is they say people with low dopamine level have decreased motivation to make a first step, as the cost benefit ratio is higher. All in relation to neurotransmitters. Seems that the sedentary ways of modern life are killing our 🧠 . I a very active male 39 and beside AS I am looking way younger than most of my peers.