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General Message Board for Ankylosing Spondylitis and Related Diseases
07/18/18 02:01 PM
Does anyone have ideas about how best to treat reactive arthritis? I have tried numerous traditional medications --- NSAIDS, methotrexate, sulfasalazine, leflunamide... none of which were very effective and some, I think, resulted in getting an infection. A burst of prednisone worked well for me which put me at odds with the doctors. I am now prednisone dependent but at a relatively small dose. I don't take anything else to control the reactive arthritis but would like an alternative to prednisone. I have never tried a biologic.

The last 10 years, during the chronic dental abscess, resulted in seemingly widespread arthritic damage It seems like drugs which suppress the immune system may predispose one to more infections and therefore more flares of reactive arthritis.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/18/18 03:39 AM
I have these hard, painfull “balls” along my spine and SI joints. They feel hard as bone and they wiggle around when I press on them. They are incredibly painfull. My rheumatologist said to keep an eye on them and see if they improve with the new TNF. My physical therapist tries massage for them but so far nothing is helping. I’ve also tried heat, ice, NSAIDs, and a tens unit at home to try to help. I’ve had them for at least a year but they are getting worse. Does anyone else have these or get these and what do you do to help with them??
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Women Only Message Board
07/17/18 11:07 PM
Hi Ladies,

I have AS and recently found out I was pregnant. I am looking for high risk OB/GYN in the NYC area and any pregnancy advise! I have arthritis in my SI joints at this time.

Thank you!
Ann Marie
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/17/18 09:00 PM
I'm sorry that it did turn out to be AS, but glad you finally have a diagnosis and a game plan. Keep us posted on your progress.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/17/18 08:21 PM
Thank you again, these responses really have helped me.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/17/18 06:19 PM
Just to be clear, worldofme is talking about treatment with bacteriophages. It not an approved treatment in the United States (or the West, as I understand it). The treatment in Georgia is in the country Georgia, not the state.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/17/18 03:41 PM
Thanks for your input, CBMom and jewelz--I appreciate it!

I have now been on Enbrel for 15 weeks. My axial symptoms vary, but overall might be slightly better (with the exception of one brief flare, they have always been mild). My right achilles remains unchanged.

I am quite certain that there is no plantar fasciitis, as I only have swelling/pain in the back of heel. Thankfully, it does not feel as you describe, jewels. I even walked all over an amusement park yesterday and it held up well. It is stiff and sore when I first start walking, but then loosens up and does alright.

If I have no response by my next appointment, I expect I will start on MTX (with or without the Enbrel) and see how that goes. If that doesn't work, perhaps my insurance company will agree to a trial of the Otezla.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/17/18 11:36 AM
Hello, miaoli:

A flare can last four days, under optimal conditions (diet), but indefinitely when trying to control it using drugs and especially certain agents with which You are already familiar. Voltaren (aceclofenac) helped me reduce flares until they were manageable (albeit continuous), but the long-term price was the considerable acceleration of my AS and expansion of symptoms (knee edema, iritis, kidney stones, TMJ, kyphosis, and IBS/ulcers). I had discovered fasting to eliminate symptoms, and wish I had never started on the drugs. But I got AS too early, and did not heed the wise counsel of Giraud Campbell in his book (A Doctor's Proven New Home Cure for Arthritis), but only after the explanation from Professor Ebringer (The London AS Diet) and improved diet plan by Carol Sinclair (The IBS Low-Starch Diet), was I able to commit to diet and I have been in remission now for many years (after combining my own antibiotic protocol with strict diet). I've had two back surgeries due to AS--Harrington rods to stabilize lower spine and a radical osteotomy (which lasted 20 hours, a record for that hospital) to remove C7 and get my chin off my chest. I hope others can avoid a similar fate!

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General Message Board for Ankylosing Spondylitis and Related Diseases
07/17/18 08:12 AM
Hi awesomeman

I was put on Humira, eh - not much of a response, then Enbrel = allergic reaction, then Remicade - higher doses at increasingly shorter intervals to get a so-so response then I got very ill with various issues including shingles and rheumy decided Remicade wasn't worth it/also developed a heart rhythm problem. Back to Humira - still nothing. Then onto Orencia - which has helped me the most and have been on it I believe since 2011 or 2012ish? Have had several health issues and had to go on and off it and still seems to be OK.

So, don't give up. You just haven't found your correct "juice" yet.

I used to take MTX with my biologic but due to other issues can no longer take MTX or other DMARDS. Haven't taken any DMARDS since 2013 and doin' ok without them.

Every person's body, situation, genetics, etc is all different. What works for 1 will not work for another. What works for most will not work for everyone. You are an individual and need to find what will work for you.

Good Luck!
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Young Adults - The 20-Something Club
07/17/18 12:35 AM
Yes. Just tried to make ant appt with her but they were a month out! So I made one with my primary care instead.

In the past all I've been prescribed is PT. We talked about Humira briefly but I told her I wanted to wait on it. That was over a year ago.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/16/18 11:10 PM
I'm currently on Humira. I have zero side effects. I get sick less often now than I did before Humira. I take normal precautions (flu shot, hand sanitizer when I've been around someone who's sick, etc). But I've been known to eat figs from my tree without washing them first and claiming the 5-second rule on dropped M&M's. wink

I also take methotrexate, which suppresses your immune system too. And still I get sick less often than before the meds. Uncontrolled inflammation stresses your system and makes you more prone to sickness and a whole host of other issues. So now that my AS inflammation is under control, I am much healthier in general.

The risk of cancer with Humira is miniscule. The risk that AS will cripple you if left untreated is high. I happily choose the miniscule risk, and honestly I never even think about it.

I do not regret taking Humira and methotrexate. They gave me my life back.

Hips can fuse in very severe cases. Without knowing more about your situation, I would guess that it's more likely that you have some calcification or degeneration in your hip joints and/or enthesitis (inflammation where tendons and ligaments insert into bone). I would suggest you ask your rheumatologist about your hip. He/she may want to do some imaging to see what's going on there.

My knees were hit hard too. I had a unicompartmental knee replacement on my right knee in 2014 and will have the same on my left knee next month. (Am I nuts to be excited about surgery?) The surgery takes away the source of a lot of my knee pain by removing the damage in the joints themselves. But I still have issues in the back of my knees where the hamstring tendons attach to the bone. However, the back-of-the-knee issues are much less severe with Humira and methotrexate. And they will probably become even less of a problem after surgery because right now I limp if I'm on my feet any length of time due to pain in my left knee. This causes an unnatural gait and puts a lot of stress on my body. Once I recover from surgery and my gait is more normal, there will be less stress to my body.

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Alternative Treatment / Diet Discussion
07/16/18 10:43 PM
John: Thank you so much for your long story about your AS experience. I read it with interest. I don't have the disease but my son was recently diagnosed. His wonderful wife and I have been on the forefront of researching the diet and trying our best to prepare meals that he can eat. The list of foods gets smaller and smaller as some things we have tried have proved to cause terrible flare ups that break both of our hearts to watch. My husband and I have both been thankful that we live in this age of internet information and all of the research on this disease and the diet that keeps it at bay are available to us. My son has yet to actually see a rheumatologist due to all the red tape in the medical field today but when he finally gets in he will be seeing one that actually agrees with the diet and avoidance of NSAIDs and other drugs. My son refuses to do the drugs and I'm glad he's sticking to the diet treatment. I'll be reading through all the posts on this thread and skipping the others. This is why I'm here.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/16/18 02:27 PM
Don't just go along with whatever she says. Challenge her! And don't be afraid to get a second opinion.

I cannot recommend highly enough a book called "How Doctors Think" by Dr. Jerome Groopman, who used to be the chief medical officer at the Harvard Medical School. His experience seeking treatment for a problem with his hand prompted him to write the book. Every doctor he saw for his problem suggested a different approach to fixing it, and the recommended fixes were often based on the doctors' own experiences, as opposed to Dr. Groopman's symptoms/experiences. The book provides a list of tools that patients can use to help reduce or rectify their doctors' cognitive errors. Briefly, Groopman suggests that patients do the following:

Ask What else could it be?, combating satisfaction of search bias and leading the doctor to consider a broader range of possibilities.
Ask Is there anything that doesn't fit?, combating confirmation bias and again leading the doctor to think broadly.
Ask Is it possible I have more than one problem?, because multiple simultaneous disorders do exist and frequently cause confusing symptoms.
Tell what you are most worried about, opening discussion and leading either to reassurance (if the worry is unlikely) or careful analysis (if the worry is plausible).
Retell the story from the beginning. Details that were omitted in the initial telling may be recalled, or different wording or the different context may make clues more salient. (This is most appropriate when the condition has not responded to treatment or there is other reason to believe that a misdiagnosis is possible.)
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/16/18 01:59 PM
How long does it take in order to see hip damage? a year, few months etc...My hips constantly hurt all day long for last month or so.
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Questions About USA Social Security Disability Benefits
07/16/18 02:15 AM
I filed with attorney in April 2018. From what I read if I have arms and legs I will be denied. I worked hard labor 20 years as a cowboy. I worked 16 years high tech, fiber optic tech. I will be denied because I have a brain. I can use a computer they say. Well I have carple tunnel too. And plantar fasciitis. If I get denied I give up. I know people who get Max SSDI and they are faking. For his back and he is out fishing 12ft sturgeon. Tell me, if your on SSDI for not being able to work, how in the hell can you even think about fishing for 300 pound fish. These are the people who make it so hard for us that actually need and deserve this benefit. His name Jim innes II Camas WA. SS NEEDS TO INVESTIGATE EACH CLAIM YEARLY.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/13/18 01:14 PM
It's a chicken and egg situation. Does depression cause more symptoms or does more symptoms cause depression?

I've just emerged from an episode of depression and I can tell you though that having dark thoughts can definitely impair your capacity to deal with this disease. I don't know if it causes more pain but it makes any pain seem unbearable. Discomfort becomes pain. Something you usually brush off becomes your focus.

My mindset now is what happens happens. I deal with the here and the now. I can have pain one day and be ok the next so it's useless to try and anticipate. That helps me fight depression.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/13/18 11:58 AM
Darn, I used up my free NY Times for July. Will look at it in August.

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General Message Board for Ankylosing Spondylitis and Related Diseases
07/13/18 03:47 AM
I have one for you guys...

I get this dull achy pain down both legs from my lower back to inner hip area that just works its way down my legs and help me to lose all focus as i try to stretch my legs around till they break off.

I am trying to find a cause and solution to this as it drives me nuts.

This is such a crappy disease.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/12/18 02:36 PM
SouthernMoss - you mention some interesting facts about NSAID. I def agree with you regard to chest pain radiating from the GI. Since there on and off and along with my portable EKG showing complete rhythm I doubt any concern of NSAID.

Mobic is a great drug and I continue to take it spaced out despite knowing this drug is cause of various symptoms. As to response to your question about mobic, 1. No I was not on high dosage of mobic 2. No other NSAID at the same time and 3. I was taking very low dosage of mobic 7.5mg daily. At this dosage this drug was making a huge difference in my symptoms.

Duexis is very short acting drug for me, does not control pain all day like mobic did. Celebrex is what i was thinking about next. Are there any ill side effect to celebrex?

Rheum said no more TNF or any immune drugs until the muscular issue is sort out. At the moment I am in process of seeing world number one myositis center. Recent visit was very pleasant with them running various reports to rule out lot of disease. Let's see how the upcoming appt turns out.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/12/18 02:30 PM
Achala, you have to find the right balance between vigilance and obsession. That can be tough sometimes. But as time passes you learn what your "normal" is, when it's ok to ignore symptoms and when you need to speak to your doctor.

I was doing PT for my wrist last year and was asking the therapist about wrist braces. I started telling her about my elbow and ulnar nerve problems, how I know what positions or actions to avoid, how I sleep with a microbead pillow under the elbow at night, etc. She made the comment that I was "very in tune with my body." I think that is common for most everyone who has had this disease for a while.

You are still new to the disease, so you are still finding your way. You will get to where we are over time.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/12/18 02:27 PM
Current Resting heart rate 46, used to be in 70's prior to onset of spondy. For moment I was under the impression this low RHR was caused by current usage of metoprolol 25mg also some sort of heart issue. However, recently was placed on 7 day wifi holter live monitoring along with echo testing. End results was unremarkable with few times machine detecting low heart rate during sleep cycle.

The EP doc said it's completely normal to have such a low rate of 40's while sleeping and mention spondy as cause of heart issue is very rare. Looks like this rare syndrome is kicking into full gear, at least for me. Anyhow, EP doc said just live with it for now, it's not worth putting me on various medication or device at the moment and decided to cut beta blockers in half to 12.5mg. This dosage is typically consider joke amongst many doctors. I thought lowering the dosage will speed my heart up, this is far from the truth, I looked at my RHR today and it's still 46. I really have no clue what's going on here other then testing being complete normal.

So what's going on here? There is no way in hell metoprolol 12.5 would cause such distress on the heart at this low dosage. Would spondy heart block show up on holter monitor testing?

On positive note my heart speeds up to normal pace on activity. It's the resting part that seems to bother me. However, I wouldn't notice this if I wasn't monitoring my heart rate through my watch.

Any suggestions from anyone suffering with heart issue?
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/12/18 06:41 AM
I remember I boasted a lot how swimming changed my life in regards to lower back pain for 3 years. I stopped due to severe iritis episodes and now I am back with whining bunch. No other activity did as much for me.
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General Message Board for Ankylosing Spondylitis and Related Diseases
07/11/18 10:37 PM
I live at 5500 feet and the UV is intense here. I carry the pred forte and immediately nip the iritis before it gets out of control. Up until lately, this was the worst part of my AS. I ALWAYS WEAR MY SUNGLASSES OUTSIDE. I cant stress this enough. It is very good for prevention.
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Men Only Message Board
07/11/18 10:33 PM
I sometimes get strange feelings in my shaft. In fact when I was younger, before I got married, I thought I might have had an STD. Came back negative and I recall reading a symptom in AS is soreness in the ureter? Dont quote me on that.
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Military & Veterans Board
07/11/18 10:29 PM
Hi, fellow vets!

I am new to the board as my AS symptoms have increased.

Wanted to introduce myself.

Aim High!

your fellow zoomie
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