Welcome, but sorry!!! At least you are a very active person, that will really help!!!
Here is some info. HLA-B27 gene test, never changes!!! It is a test for a gene, you either have it or not. 15% of Spondys do not have that gene, because there are other genes that they are finding out about. There is a lot of research on the various genes, but only the test for this. Having the gene does help you get diagnosed.
I skimmed the ending part, are you getting treatment? Enbrel or Humira? They both were like a miracle for me, until they stopped working. You probably won't have that issue since you are young and diagnosed fairly early in the disease. My disease came and went for years too. I tried various diets and thought each was a cure, until the darn disease came back. I beg of you to start treatment. Early aggressive treatment is the recommended plan instead of gradual step up. They found so much damage happened in the first year that you want to hit it with a baseball bat.
You might want to change your exercise program BUT exercise is soo important, it probably helped you so far. Pretty weight lifting is a no-no except for low weight. You want to not over do it. I had to switch to swimming instead of hiking because my ankles are too damaged but now I love swimming.
The initial AS flare frequently follows trauma, so I'm not surprised at all that your initial AS symptoms appeared after a sports injury. My initial flare followed a careless fall in the shower at the end of a summer in which I played in a lot of tennis tournaments. Movement is definitely good, but consider switching to more spine-friendly activities/routines, e.g., swimming or the elliptical machine instead of running on hard surfaces, high rep weightlifting instead of heavy lifting. Add some flexibility training of some kind, e.g., yoga, Tai Chi. I had to give up tennis because the constant twisting motion, the sudden start/stop running across the court, and the risk of injury following a fall or slide were disrespectful of my spine. Be smart about it, and think long term.
Best to ask a pharmacist if the tablet can be cut in half without creating an imbalance of the active ingedients and filler used to create the tablet. I take mobic with no side effect so it may be thst you're having a reaction to someting in the tablet. Given the cardiovascular related side effects, have you mentioned your headache to your doctor?
Welcome jagsfan05! It might be the inactivity that followed your injury brought on the pain and this condition to view. I too had a very active lifestyle early on upon learning of my AS - and have seen my symptoms flare when sedentary from injury, illness or work. Amazing is that when active, i felt few symptoms. Its not uncommon for the inflammatory labs to be normal with AS. I'll let others respnd to your other questions but encourage you to stay active and maintain strength and endurance - but be kind to your body. Have fun in your movement and it'll give you frredom to move.
Hi, and welcome to the forum! Thank you for sharing your story. I'm sorry to hear your pain is increasing, but from what others have said being active can go a long way to feeling better so it's good that you aim to do that.
I suggest reading all you can about AS to educate yourself even further. There are also some great videos on YouTube from SAA as well as other professional organizations. They may help you better understand AS and the various aspects of living with it.
New member here that was recently diagnosed a few months ago with AS. I'm a 31 year old male...a little more about my story. Long post sorry in advance:
I'm a pretty active male who has always enjoyed running, playing tennis and lifting weights since my teens. I have never had a real injury until 2012 when I was 25 years old, I was playing tennis and I pulled my groin. The pain ended up shifting to my SI joint area so I ended up going to a sports med doctor. He got an MRI of my hip and diagnosed me with SI joint arthritis and piriformis syndrome.The results specifically showed some "bilateral minimal sacroiliac arthritis which may be posttraumatic nature however underlying inflammatory arthritis cannot be excluded. Along with fraying of labral and piriformis issue, etc." He wanted me to go to PT which I did for 6 weeks and also put me on a Medrol Pak. But in addition, the doctor also wanted to check some labs including HLA-B27, ESR, CRP, etc. to rule out something called AS or any other inflammatory disorders. I ended up doing the labs which showed I was HLA-B27 positive but my other labs came back normal. So when these results came back, they called me saying they wanted to refer me to rheumatology for possible AS. Well guess what? I was young and stupid and the PT after 6 weeks healed me! I had never heard much about autoimmune diseases much less AS so I thought I was fine and didn't follow up with rheumatology.
Fast forward to 2018. In between these 6 years I might have had a few flare ups of my SI joints but it always went away on it's own....until that fateful date of May 4, 2018. I was lifting weights doing a deadlift, when I felt a knife like pain in my mid/lower back. I remember barely being able to sit for periods of time and the pain would be mostly throughout my upper butt/low back but I held off going to a sports med doctor until late August 2018 (a different one than 2012). I was hoping whatever it was would heal on it's own. I explained to him about my SI joint problem back in 2012 and the positive test of HLA B27 (mind you still at this point I had no idea the real connection of this test with AS). He didn't get an MRI but instead sent me to PT which I did for 5 weeks. It didn't get better so I went back to him in October 2018. He now decided to get an MRI of my pelvis which showed...guess what? "Mild bilateral iliac-sided marrow edema & small periarticular erosive changes adjacent to SI joints consistent with sacroilitis. The symmetry and bilaterality favor AS, IBS or rheumatoid arthritis. No ankylosis." With these results, he told me he needed to refer me to rheumatology especially with the past history I explained to him in 2012.
Well now I'm married so my wife does a great job making sure I go to rheumatology this time around. I went to my appointment in November 2018 and I explained all this history to her. She said she is almost sure I have something called AS. She checked my flexibility, etc. which seemed to be pretty good and I also explained to her at that time I wasn't in tons of pain but it usually was around the SI joints when it was. She decided to be sure she wanted to check my labs again and also get an X-Ray of my SI joints specifically. She told me she didn't need to retest for HLA-B27 since I tested positive in 2012 but I told her to do it again just for peace of mind. My X-Rays came back that day showing "narrowing and periarticular sclerosis at the SI joints, compatible with seronegative spondyloarthropathy. Given the patient's age, the SI joints show a moderate degree of narrowing. There is no definite ankylosis at this time." My labs for inflammation were all normal except of course I came back HLA-B27 positive again. That's when I got the fateful news from my rheumatologist saying the xrays of my SI joints do confirm findings consistent with an inflammatory process, likely AS along with the positive HLA-B27. She said though I was probably more on the mild-moderate range and my case presentation was very unusual (since I never felt much SI joint pain until that injury, good flexibility, it never wakes me up sleeping, etc.) she still wanted to put me on Enbrel or Humira to prevent joint damage and worsening. She said she was glad I had my 2012 MRI results because she could see a slight progression of the disease based off the results from both. We also decided to go ahead and get X-Rays of my Lumbar & Thoracic spine to make sure the AS hadn't spread. The results came back with no AS but that I had spondylolysis/spondylolisthesis/anterolisthesis of L5/S1 (Grade 1).
So here I am unfortunately. In the past month, my pain has increased significantly which is depressing (only in my low back/SI joint areas though).I started Enbrel almost two weeks ago and trying to keep my head up. My rheumatologist said I can still live an active life while on biologics and that there is no type of exercise to avoid with AS (just listen to my body and use pain as a guide). My wife has been very supportive to me through all this and I'm very thankful for her. I ended up going to a spine doctor as well just to check into my spondylolisthesis and find out what it means. My mom has Grade 3 or something along with DDD, multiple surgeries and hardware in her back. He says mine is probably congenital but I'm not sure because I led an active lifestyle too. He ended up getting another xray of my lumbar spine but this time bending over which showed barely any movement of the vertebrae shifting. He said the sharp knife like pain I felt is probably the spondylolisthesis and it getting flared up but just to maintain core/back strength and surgery isn't needed. So having both problems is definitely depressing. I haven't been back to the gym yet and just recently started trying to run again. The biggest thing I've been left wondering is if my pain is from my AS or my Thesis and having to figure that out going forward...I'm thinking it's probably the AS since it's all throughout the day and usually worsens from inactivity. Also just left wondering why my main AS symptoms only showed up after the deadlift injury? Again I've had them a few times before but these were worse and never went away. I guess it's possible to get AS symptoms after an injury and doesn't have to come up randomly?
Anyways, thanks for listening and sorry for the long post. Just helps being able to share my story!
That’s why I smiled when we read that bit on Heineken Though duvel, la chouffe are quite popular Belgian brands. There is a eco shop in Breda where I used to get the Belgian craft beers limited editions. But nothing compared to the craft beers I had in Chicago;) which tasted a bit like pines in best case scenario;)
I wanted to say thank you for this thread. I read it and it has been an encouragement over the past few weeks. I did not comment because I had not yet experienced turning that corner, but seeing that others have helped me. I was feeling frustrated, overwhelmed, depressed, fear, grief, anger. In the past few months I have been helped by medication with pain, stiffness, and fatigue, which has helped my attitude immensely. I gave up some bad habits. I started strength training, swimming, PT, yoga. I'm on a "diet" per Dr's advice..... I'm feeling more positive and energetic and I am mostly grateful for this change. The other day I had some pain flare up and I got really angry about the fact that I have to exercise every day now which is not my preference!!!! I was like this is bullshit why can't I have a day off????!!! But overall it is good and I am thankful for your taking the time to share your stories, for how much grace and understanding is shown in this community. Compassion and seeing your strength does help me.
It was a slow improvement for me when I went onto Humira. I also gained about 25lbs as well. I'll say all in all it was about 50% effective for treatment. I am on enbrel now and it works about the same as Humira for me. Methotrexate may or may not work anymore, I just can't tell the difference. Sulfasalzine works great for the aches and joints in my hands. I am still miserable though, even after all the medication. I also take lyrica for fibromyalgia, cyclobenzaprine to sleep at night, clonezepam for panic attacks/anxiety. I also take two medications for my bladder flares...It is really about what works for you. I would say, write down all of your symptoms and the pain level from each. Take the medicine and then after it's at its therapeutic dose you can determine how it helps. It might take away 10%, but that might be the difference between getting out of bed and not. Good luck to you.
I was diagnosed three years ago after suffering from pain for 7 years. My pain is still not under control. I do everything they recommend and still I am not down to a level that is acceptable. I have started to go on a journey with AS, it is after all, our constant companion. I have narrowed it down to three things in the cycle, 1. Pain, 2. Fatigue, 3. Anxiety Think of it as a circle where one impacts the other. When pain strikes I start to get anxious, I have to take my emergency medication to calm my heart rate down. I have to reason through what I am feeling. I have put protective measures in place. When I am in pain I listen to my body and it tells me what it needs, so down the list I go. Ice, heat, chiropractic, long bath, exercise, physical therapy, meditation, maybe a massage, call a friend, journal about it, do something I love to do..these are all tools. Above all, being mindful is the most important. Love yourself and rest if your body is telling you to rest. Eat better if your body is telling you it needs better nutrition.
Remember you did not get this way overnight, there is no magic pill that will make you better, some days will be worse than other days, but tomorrow will always come.
I do believe that most of us here suffer from some type of anger towards this disease, even resentful of those that have better functioning. Don't lose hope, the most powerful tool that you have is your mind. I wish you all the best and thank you for sharing.
While I haven't experienced medication reactions to the level you have, I do feel for you as I have always been prone to side-effects, and it has made it very hard over the years to find drugs I could tolerate and that worked. After what you went through with Stelara and Remicade, I can see why you'd be reticent to try another med like those. There is just no way to know with this stuff. Everyone is on an individual journey. For me, I've been on Enbrel for 18 years. Briefly we tried Humira back in 2005 or so just to see if I could get some additional benefit but I got huge red rashes from it at the injection site. So went back to Enbrel and have stayed on it since. It still works, but I also need other drugs in addition. I couldn't tolerate plaquenil or sulfasalazine, but they did help my symptoms. I'm on a low dose of MTX because if I go higher I get intolerable side-effects, and as it is, I get horrid side-effects from it (mood and anxiety), but the pain relief I get from it is so strong, I can't get off it. I also take Imuran which probably helps my whole system, but strangely, the place I feel direct pain relief from it is in my hands.
These diseases can be brutal and its normal to have a lot of intense emotions while trying to figure out how to live with it. Dealing with doctors, pharmacies, insurance agencies, etc. can be very draining and frustrating. Medications for these conditions mostly don't work quickly (aside from the NSAIDs and pain meds), so a lot of patience is required, which can be very tough when dealing with pain and other symptoms.
I personally have found it very helpful to maintain a log of all medications, the dose, and side-effects, as well as good effects. Its hard to recall this stuff over time, and a log can help you identify patterns in terms of how your body responds to medications. I happen to be someone who gets side-effects to most meds, so it took years of trial and error to get me on a combo that I could tolerate that also helped minimize my symptoms.
I will share that years ago, I worked in an elementary school, while on Enbrel, and I washed my hands throughout the day and tried my best not to touch my face, and I didn't get sick once. I am now on three drugs that suppress immune system - Enbrel, methotrexate, and Imuran, and I haven't had a cold in years. But everyone is different and some folks do struggle with those problems more than others. Its all very individual. You can read the stories here and your experience is still going to be unique to you. Best thing is to find docs who listen and you feel comfortable with and who want to make you as functional as possible, and then just keep going and trying things until you find the combo that works for you.
Enbrel kicked in at the 9 week mark for me. Probably started working mildly a bit before then, but not enough to notice. I woke up one morning and 99% of the severe fatigue I'd had for the past 3 years was just gone. It was as dramatic as a blind person being able to see.
I will just share that despite all the meds such as Enbrel, mtx, indomethacin, and others.. I have always needed pain medication as well. Enbrel and mtx suppress a lot of pain, but it has never been enough for me.
Here in the Netherlands I don't think doctors are very pushy about biologics. My rheumatologist hasn't even brought them up yet. We have mandatory health insurance, with basic coverage that is the same for everyone. Humira is covered by it, but it's by far the most costly drug for the insurance companies (although this was before the 80% price drop). I assume the insurance companies keep the pressure on doctors to exhaust other treatments first. Generic NSAIDs and physical therapy are much cheaper than biologics.
The AS treatment guidelines state with respect to sulfasalazine and drugs like sulfasalazine:
"In adults with active AS despite treatment with NSAIDs, we conditionally recommend against treatment with SAARDs (PICO 7; very low- to moderate-quality evidence, depending on the drug; vote 90% agreement). Evidence and rationale. Evidence on the efficacy of SAARDs was based on controlled trials of sulfasalazine (n 5 8), methotrexate (n 5 3), leflunomide (n 5 1), pamidronate (n 5 1), thalidomide (n 5 1), and apremilast (n 5 1) (see Supplement E: Evidence Report, availableon the Arthritis & Rheumatology web site at http://onlinelibrary.wiley.com/doi/10.1002/art.39298/abstract). The quality of evidence for critical outcomes was moderate to very low. Sulfasalazine had a small beneficial effect on spinal pain but not on other outcomes, and had a higher risk of side effects than placebo. Although treatment with sulfasalazine did not improve peripheral joint counts, small benefit was seen in a composite measure of peripheral arthritis symptoms. The other medications were tested in small numbers of patients. Trials of methotrexate were limited by use of weekly doses of 10 milligrams or less. Treatment with high-dose pamidronate was associated with improved patient-reported outcomes compared to low-dose pamidronate and deserves further study. Based on a very low to moderate level of evidence of small or no clinical effects, the panel recommended against the use of SAARDs in most patients whose AS remained active despite NSAID use; treatment with TNFi would be recommended instead (see PICO 6 below). Treatment with sulfasalazine or pamidronate could be considered for patients with contraindications to TNFi or those who decline treatment with TNFi. Sulfasalazine could be considered for those with prominent peripheral arthritis."
I've been diagnosed with AS since 1993 and have a good quality of life without biologics. I can lift weights for an hour and half with no breaks, plus do yoga and swim. People are different. Sadly, some doctors don't understand this.
Different people find that different NSAIDs work for them. The problem with ibuprofen is that it tends to be one of the harshest NSAIDs on the gut and the heart. If you're going to take it continuously, which I think most rheumatologists (and GPs) would recommend you do if you have active AS, you should probably also be taking something everyday to protect the gut, such as famotidine (Pepcid) or a PPI (e.g., Prilosec). The ibuprofen should also be taken with a big meal if possible. Personally, if I were going to be taking an NSAID continuously long-term, I would choose Celebrex as it has the best safety profile. Of course, you should discuss all this with your doctor(s) and not just take my word for it because your individual risk factors should dictate the therapies you are on.