Hi, Lacan, welcome to the forum! I'm new myself, and have already discovered there are some really supportive people here. Did you see an ophthalmologist for the eye? Hard to tell based on your description but it could have been uveitis which is linked to various forms of AS diseases.
You could have psoriatic arthritis. which is a spondy related disease. Dr has not given you continue NSAIDs as trial? Because if that helps, it is inflammation. Good luck with the second opinion but I hope you don't wait too long for any kind of treatment. The longer you go without, the more damage could be happening.
Thanks! I'm a single parent and I'm making my health a priority so I can be better for my daughters, so I don't plan on waiting any longer than I have to to address things. The doctor has not given me anything to try other than Otezla, but he knows I take ibuprofen when I feel it's too much to bear so maybe that's why he hasn't given me any other NSAIDs.
I've avoided this forum for a few years, but wanted to follow up on this thread. I'm still working in international development, still traveling (more frequently too), still on Humira, so I keep on! My advice still stands. A year ago I kept getting respiratory infections and colds, so my dr recommended vitamin D supplements. I've been infection & cold free ever since. I no longer doubt that I can do my job and travel. I'm no longer anxious about traveling and the work I do. I even stretch out the Humira to go 3 weeks unrefrigerated with my dr's blessing and haven't had an AS nor uveitis flare in 2 years. I do pilates regularly and even travel with a travel-friendly yoga mat so I can do pilates in hotel rooms around the world. AS will not deter me
Thank You All for the kind response. I was just diagnosed with AS after 30 years. In my early 30s, I was told I had a sero-negative spondyloarthropathy. In my 40s, I developed uveitis, which I had for over a year. Ended up getting intraocular lenses at a very early age due to cataracts from the steroid drops. I have always had problems with my back for as long as I can remember. Things really seemed to escalate in my 50s and have just continued to go downhill. I was diagnosed with Crohns's in 2001, but it is very mild. I usually have an intestinal flare either before or after large joint involvement, mainly my knees, and also lumbar spine. Thankfully, once the joints calm down, generally so will the intestines. I was given Plaquenil for drug induced lupus but it did not work well for me; had too many side effects. Thus I was placed on prednisone and cant seem to get off. Every time I try to taper, things just flare up. I am hoping that once we find a biologic that is compatible, I will finally be able to wean off.
I see my rheumatologist again Feb. 7th and we will make a determination, at that point, between Humira or Enbrel. I am pretty sure she will push for the Humira since it also covers complications of Crohn's, even though my major issue is my spine and large major joints. At this point, I am certainly not aware of which would be best for me...again involves going through the loading doses and waiting. I need to put my fears aside, if possible, and just be Thankful that we have choices and medications that are available for us.
Thank You all for responding and Wishing you all the Best.
I've had kidney issues (infections, stones when I was a kid and one kidney infection as an adult) and lately microscopic blood in my urine also. I also had chronic UTI's as a kid. I don't know if anything was related though. I didn't think to ask urologist. They were going to do a cystoscopy a few months ago but decided against it. Not sure if this helps.
I have had pain in my collarbone on and off since my diagnosed with AS a year ago. I am in PT now, and have found that several stretches can help.
First, lie on a foam roller so that your head and spine are supported by the foam roller (you will need a long foam roller). Extend your arms out to the sides with your hands up (like you are saying "touchdown"). This stretches the pectoral muscles, which are under the collarbone. You can google to see more pictures.
You might also try a heating pad and massage to the area under the collarbone. I have also tried CBD oil with some success. I am also a big proponent of the Quell device--I wear it every night.
I’ve enjoyed online videos by “Bob and Brad, the most famous physical therapists on the internet.” <<— That is their slogan and a search of the slogan should bring them right up. They have one geared for AS patients. I was going to a comfort care clinic and found that Bob and Brad show you how to do the same things I was paying for the physical therapist to teach me.
With Remicade, they can increase the dose so tell your doctor. My stiffness in morning is very mild and only lasts a short time. I no longer have pain in the middle of the night. Getting a good nights sleep is very important. My pain is only from damaged joints. I wish I had had treatment earlier in the disease. But I know what is damaged and how to limit additional pain. Like for my poor ankles, no standing for a long time etc. My pain does increase when the weather is bad and a couple of days before my next treatment.
I too went through a lot of the meds BUT they all worked fabulously until they turned to water. Drs say it is because I went so many years without treatment. I will always need more than one medication but am now considered in remission.
I started Humira last Thursday. It seems like I hurt even worse. Of course, for me, sometimes the pain hits in all the usual areas at the same time, so maybe this is just one of those times when it all hits at once.
A couple of times within the past two years, I’ve had like two episodes where I’ve felt really good for about a couple of weeks, which I haven’t figured out why. Do any of you ever have that happen? One of those times was at the time of my first visit to the rheumatologist that recently diagnosed me. I was thinking, great. It took months to get the appointment, I’ve been in pain for a few years, and the day I go to the appointment, I’m feeling decent. Of course, those two episodes of feeling pretty good didn’t last long. Strangest thing.
Thanks for your responses. I’ll hold out hope Looking forward to my next injection now.
Welcome to AS! Sometimes I’ll hurt all over for a week and then out of the blue I’m almost pain free for days. Why? No one knows. Some have triggers that they can pinpoint, like certain foods or sitting too long on the couch or whatever, but some like me can’t find any logic to it all.
Some people have even longer periods of calm. A friend of mine with AS was pain free for almost 5 years without medication. And then it came back one morning and he had a terrible year. For some it’s 2-3 days of flare, then a few days of calm, then a few days of flare and it goes on like that. And the unlucky ones are in pain all the time without good days. There are as many “versions” of AS as there are sufferers.
Being immune-compromised does not automatically mean you will pick up every bug that comes along. And keep in mind that having uncontrolled inflammation makes you more susceptible to illnesses too, so you may find that you actually get sick less often once you are on effective biologic therapy that is keeping your inflammation well controlled. Of course, everyone is different. But in my case, I find that I don't get sick any more often than before Humira and MTX. It does take me a couple of days longer to recover when I do get sick.
Exactly. When I got my inflammation under control I got sick way less often. The only difference I noticed is that my colds tend to linger for two weeks instead of the usual one. But that happens to healthy people too!
In googling PVD, it recommends that one avoids strenuous exercise for 6 months upon starting. Since it siunds like you normally swim that your vascular system would not sense it's strenuous since you can manage your pace as an experienced swimmer. I would ask your opthomologist or a pharmacist for their opinion. It sounds like its the increased vascular pressure that can occur with strenuous exercise is the reason for 6 month recommendation. Need time for the medication to protect your eyes, time for rx to take effect. Good Luck and thanks for sharing your story.
Never out of line for expressing your thoughts if you're trying to understsnd the face of AS. To appreciate that the 60+ year old with AS is only different as they've experienced what the current 30 yr old is experiencing- but wiyh no medicstion or diagnosis. Our common experiences join us. Differences are as colorful as the community feel of this platform. Pain knows no boundry. Care for your body - even when you believe your body has betrayed you. The body is always trying to heal itself. Believe in the basics, sleep, fresh food, rest and movement.
I totally understand about the forum being a double edge sword. The internet in general is that way. I tend to worry about stuff that doesn't really apply to me. Sometimes thinking about what could happen is far worse than what actually happens.
I remember when I was 25 I thought I'd be fused by the time I reached 30 and now I'm 33 and absolutely not fused. A vast majority of the time my worries are worse than my reality.
Also sometimes what you read on paper can seem worse than it is. I know a guy who was fusion in the hips, lower back, upper back and neck, and yet still works full time at 56 and you wouldn't even know he has AS. It limits his movements but not to the extent that he can't do the things he used to. Most people don't use their full range of motion in their daily lives anyway.
What I'm saying is yes if you come here you'll see people who are "damaged" from the disease, but some damage can be dealt with and doesn't mean you won't be able to have a full life.
Also, people with mild AS don't come online to tell you they feel good. This is important to remember. You write on support forums when you have a bad case or are in a flare. That fact alone should make you take these boards with a certain pinch of salt.
I have just started this medication as of January 1st starting with the smallest SQ dose every 2 weeks and increasing as indicated. I'm not exactly sure what the treatment goal is for this medication except for prednisone sparing. I have also been referred to an endocrine specialist to evaluate for adrenal insufficiency. It was refreshing to hear from my rheum that I was still relatively young and healthy. I didn't detect any sarcasm and I guess he was being sincere.
In any case, this will be a new approach for me. I'm not that comfortable taking this medication while taking prednisone because of some past experiences with infections. Whether or not I continue taking it will be decided in April by the endocrine specialist. Because of the possibility of permanent prednisone induced adrenal insuffiency I may be taking prednisone for life. It may seem stange but I would be Ok with that outcome ... I think.
I have noticed a few contributors on this forum who are currently taking Actemra or have trialed it. Any advice or words of encouragement would be appreciated.
Hi Breeana, Thanks for your reply. My original post was kind of snarky and I've been meaning to elaborate on what I wrote. Of course the VA did not cure my AS. I've been lucky (maybe) in that I've always had good, timely care at the VA - in Boise, Pocatello and Salt Lake City - but there were gaps in my use of the VA's services.
I enlisted in the Coast Guard in '69 and served til '73. I began using the VA about two years after I was discharged because I had no health insurance at the time. My mom and dad both served in WW2 and the post service benefits were a big selling point they made toward enlistment in the military. They didn't have to try too hard to convince me. I grew up in Maryland and we always spent a great deal of time on boats and around the water. I'd always planned on enlisting in the service and had wanted to join the Coast Guard since I was a little kid. By the way, my draft lottery number was 18 the first year so there was a certain impetus to enlist.
Although my symptoms started while I was on active duty, I wasn't diagnosed with AS until about thirteen years ago. At the time I was diagnosed, I was working for a company that had great benefits so I wasn't being seen at the VA. (I've used the VA only when I had no other medical coverage.) I retired on disability in 2009 (AS) so I lost my med insurance. I decided to go to the VA one fall for a flu shot. I was told that since I hadn't used the VA for some time, my coverage had lapsed. WTF!?!!! WT actual F?, is going on here? I wrote an angry, somewhat intemperate letter to my Senator suggesting that he and Congress balance the budget on someone else's back, perhaps someone aside from the country's veterans. He said in his letter back to me that he was "disturbed" by my letter. I suppose he was referring to the tone of my letter, although it could have been the absolute injustice of a veteran's GI Bill benefits "expiring," but I doubt it. He did have me reinstated for medical care at the VA.
A Dr outside of the VA originally diagnosed my AS. I was always happy with his care so I have gone back to him since. The sticking point with the MRI at the VA was that I have a pacemaker. Fortunately, the cardiologist who installed it implanted an MRI conditional pacer so that I would be able, having AS, to have an MRI. The VA's policy however, at least in SLC, was "if you got a pacemaker, you get no MRI," period. The VA rheumatologist was the person who had brought up the MRI at the outset as the standard for diagnosing AS.
I am HLA B27 positive. My original rheumatologist - the one I'm seeing now - explained why he still stands by his diagnosis. I had applied for Social Security Disability Insurance when I "retired" and was able to get it on my first try so he must have convinced them as well. As an aside, I developed bradycardia (nothing to do with the popular TV family) while I was experiencing an episode of the shingles a few years ago. Apparently, the shingles can affect other nerves in the body and cause other nerve conduction diseases and prompt the onset of all sorts of nasty stuff as well. When I went to the ER, my heart rate was 28.
I've learned a lot from this site since I found out about it - There is lots of good information here and this forum is great, but I don't come here regularly. Thanks for taking the time to reply. Paul
Thanks Rich. Access to VA rheumy has to wait - that's the way it is. Did some searches on a CPAP site and found other similar complaints. Have been working on more chest stretching. Signed up for Qi Gong - should start this month, and Tai Chi in March. Gonna fly without CPAP tonight. See if I get through the night.
haven't specifically done this diet. but I understand it is a healthy, well rounded diet. for me, I also feel better (AS wise) when I weigh at my lower end of my range. I think there is evidence that some foods generally increase inflammation while others reduce inflammation. My wife strongly believes highly processed foods such as sugar and grains increase inflammation. my gut says she's probably right.
the other advantage to your new diet is that it seems good for the digestive system. you may never have gi issues, but this would seem helpful to head off issues.
Years ago I suffered really intense pain in my ribcage. Not fun at all. I am now mostly fused so the pain in that region is close to zero. Downside is that it has caused me to have a diminished lung capacity as I am fused in the compressed position.
Hello! My 13 year old daughter was just diagnosed with AS last week. She is a competitive gymnast and after 8 weeks of xrays, CT Scan, MRI (they suspected fracture in back from vault) but blood work revealed she has AS. The doctor said it was caught early and no damage. She is starting on Humira this week and he told her she could return to gymnastics but listen to her body. This is all new to us and just wondering how realistic is really is for her to continue her passion? We are entering competition season and she was thrilled to get the ok to return and not miss out on her entire season, but I don't know how realistic it is for her future. Has sports been ok for most of you?
Looking for any advice on being able to continue basketball at a high level with a new AS diagnosis. Some days are better than others but after 20-30 minutes pain begins to return to the SI joint which is the main area affected by AS at this time.