...I posted by mistake my question on the k pouch board.sorry about that...I am not very good in moving along jet...

I tried mind over matter for about 8 months. All that did was waste 8 months. I have been on biologics since early 2006 and I am forever grateful for their existence. I still have pain and stiffness, but it is manageable. I was on Humira for about 5 years, then switched to Simponi.

P.S. I deleted your other post for you.

Jan

...that isn't very encouraging.My next question is: how could I monitor the illiness and his progression? If the pain doesn't increase, does it mean that the situation is stable ? O could get worse in a silent way? Is the secondary spondilitis ( our ) less aggressive than the other kind ?And what about the side effect of the biological? Could they be more dangerous than the spondilitis ? from what I read one could get so immune depressed to risk getting other self immune desease.....and the list of them is so long.....

so many questions to ask....
grazie x now

Well, I suppose it all depends on how bad your symptoms are. I should think that if they were bad enough to send you to the doctor, then they are something to address. The type of spondylitis does make a difference. If it is primary ankylosing spondylitis, then the risk of severe spinal progression is greatest. I have enteropathic arthritis, that which is related to my IBD, so less likely to cause spinal fusion.

That said, before I started biologics I often had to walk with a cane, and I seldom do now. But, it has not completely been stopped. I now have neck involvement that was only minor 10 years ago. I have more advanced spinal stenosis in my c-spine now, and have to be careful about not hyperextending my neck, and have to bring a pillow to the dentist to be able to tolerate the dental care.

For me, the benefits have far outweighed the potential risks, and here is why. My symptoms were real and having a real impact on my current life. Side effects that have not happened have no effect on me. Most of the side effects resolve if you stop the drug and that is why they monitor you. So, I figure I made an informed choice. I could get lymphoma no matter what I do or don't take, so I don't worry about it. I focus on the fact that most people do NOT get side effects.

Yes, pain and stiffness is pretty much your guide to how you are doing. Fatigue levels too.

If you are uncomfortable with the biologics, it makes sense to try other options before you consider them. That way, if you do wind up using them, if they do not work or cause side effects (causing you to stop them), then you can feel that you tried everything else first. But, it appears that they are the new best thing, especially for those who cannot tolerate NSAIDs. I took NSAIDs for years, but had to give those up due to side effects.

Jan

yes, I suppose all depends how strong the pain is.Sometime is only in the background,other times, in the morning or after a rest is quite strong and is hard to start moving. Another hard decision to make....I was just relaxing from the last operation.

thanks for sharing your experience and knowledge,I tried to ask the same questions to the doctor but the answer wasn't so full and clear.

it seems to me that this secondary illness may be worse than the UC that caused it o may be I am just a bit older and more tired to deal with it o is probably the idea of not being able to move that really scares me.

let's try our best and take it one day at the time.
ciao

Even with the biologics, I still need to be sure to stay active and moving. It is the pain and stiffness after sitting or laying down that is the worst, like getting out of the car after a long drive. But, before I was on biologics, I could not sit still for more than 10-15 minutes without sacroiliac and tailbone pain. My shoulders, hips, hands, and knees are affected too. My rheumy refers to it as "jelling." I guess inactivity causes swelling in there.

I feel best after being on the treadmill. But, late in the day, fatigue can set in, so it is a balancing act to be sure.

Jan

My sacroiliitis has come back with my recent pouchitis. It all went away when my colon was removed in May 2012, so a bit of a blow and dissapointing to say the least with its return. However, it is nowhere near as bad as it was, but I know from experience that this is how it began before. I am hoping that getting the pouchitis under control will stop things progressing. There is no way I want to end up practically bedridden like I was before and have been giving things a lot of thought. My current thinking is that if my quality of life gets unacceptable again than perhaps the answer is an end ileo? But then there are no guarantees that it won't come back anyway. So that leaves biologics (if I could get funding here in NZ which is not likely). Think I would rather have 10 more years of good life than 20 being crippled.

Jan,
What are biologics?
At the point I am at now, I would take anything that they have on offer...Going to bed at night is a nightmare for me, there doesn't seem to a a joint that is not 'locked' and in horrible pain, even my toes hurt. I have to make the apt with the rhumy so I want to be equipped for it...he has seen me before and offered me massages and NSAIDs but they just don't cut it...Kiwi, I always seem to feel better after surgery for a few months and think that it is finally over and that it was my pouch that caused it all (when they fix the pouch or readjust it etc) but no...it is short term...the pain always comes back.
Sharon

Biologics are the anti-TNF drugs: Embrel, Remicade, Humira, Simponi. There are others, but not for spondylitis at the moment.

Jan

Thanks,
So I guess that is the way that he should be going if the diagnosis is confirmed...we know I that I have severe and chronic inflamation of the joints but that is the only diagnosis that I have been given thus far. My mom had fibromyalgia and post-Polio but that is it...is there a heridity factor in this? Seems that almost every single member of my family has had at least 3 surgeries on their articulations (knees, neck, hips, shoulder etc), some as many as 12 so there must be a family element somewhere. But I suspect that it is a combination of ligament (D'Heler's-Danlos) and joint problems
Sharon

Yes, most people with ankylosing spondylitis have the HLA-B27 gene. But many with the gene do not have AS. Also, fewer of those with related diseases like enteropathic arthritis or undifferentiated spondylitis have this gene. I don't, but 30-50% of enteropathic arthritis do not have it.

Also, there are a number of disorders that are similar. One of the issues I had that is a primary symptom is enthesitis, which is inflammation of the tendons and ligaments at the bone insertion. It appears to be joint inflammation, but it isn't. It is similar to tendonitis, but that does not go to the bone. Most affected are the Achilles tendons, knees, hips, shoulders and ribs.

Jan

why end ileo to stop the pain ? I think that once the anticorps of the UC have "choosed" a new target after the colon has been removed, they would carry on even with an end hostomy.

I agree with you Sharon: the night sometime are quite bad;I found out that putting one leg on a pillow helps to sleep on the side.
Lately I became a morning person...I have good energies when I wake up and I lose them in the afternoon even If I could stay up late .

I haven't done the test to know if I have that gene,but would make any difference to know it?

Having appropriate testing helps gain evidence to make sure you are treating the right illness. Sure, the HLA-B27 gene test is only affirmation. But other tests, like RA factor, ANA, blood counts liver and renal panels, etc, are needed to rule out other causes. If you have a positive HLA-B27, it might mean you have AS, and even more likely to have a more aggressive form of spondylitis.

My imaging was pretty clean too, but my rheumy was able to diagnose based on history, signs and symptoms. It just takes a patient and observant rheumy.

As to considering ileostomy as an option, it's not for me. My enteropathic arthritis was diagnosed 10 years after colectomy, so probably not a direct link to active inflammation. Some people get it years before first signs of UC. I'd be really disappointed if I took out my pouch for that reason, and still had the arthritis.

Jan

In my case they made a diagnosis just with the MR and my UC history; the reuma test was negative and the ves and PCR a bit high.What about agopuncture? I just read an old article from spondilitis magazine and apparently some people get benefit from it,not sure if only x the pain or also to relieve stiffness.

And diet ? should we eat more of something ? like fish oil ? May seeds should be good x cartilagine,but they are not x the pouch.

ciao, Marina
n

I tried glucosamine and chondroitin for about a year, no help.

I did finally try acupuncture, once I was getting cervical radiculopathy from my spinal stenosis (the only way it was covered was when ordered by the pain management team through the spine clinic). The first session allowed me to have a nice nap. The rest were only very short term help. So, for the hassle involved, it was not worth my while. But, many people do get good relief with it.

I have been taking the maximum dose of fish oil for years, and take probiotics. Plus, my vitamin D levels are improving with supplements. No change in how I feel though.

I also get periodic steroid injections into my joints when there are bad flares.

Some people swear by low carb diets for reducing overall inflammation.

So, yeah, those things are worth trying. I did keep an open mind and gave it the old college try, but no dice.

Jan

I would hate to loose my pouch, despite the pouchitis. It responds to Cipro very quickly but does recur but I am OK with it as my quality of life is so much better than before. My sacroilitis seems to worsen with a flare, like it did with UC. Strangly enough, although Biologics are not funded for UC they are for spondyoarthropodies although only once evidence is found on MRI. Even at my worst my MRI showed nothing. So sit in a bit of a black hole.....just concentrating on keeping the pouchitis under control as much as possible.

Oh my! I would be up a creek without a paddle if my insurance provider required imaging evidence before confirming the diagnosis. I guess that is what happens when you have non-medical people deciding the rules and not allowing the physicians to use judgement. I believe many, if not most cases are diagnosed without significant changes on imaging. I discussed this very thing with my rheumy, and she said that the point was to get treatment initiated before irreversible changes occur, hopefully stopping or slowing the process. Otherwise, it is like shutting the barn door after the horses have run away.

I did have positive signs of inflammation in both SI joints on a bone scan a decade before my diagnosis, and evidence of ligamental inflammation in the lumbar spine on MRI at the time of diagosis. But, there was no bone marrow edema or fusion.

Jan

one thing I don't understand is this: biologics can slow down if not stop the imflammation,but are there any experience of people who got better o at least didn't get worse with no medicines?? My reumy did'nt seem as solleciting as your on the use of medicine,He said that the protocoll would use biologics but he,if he was me,would wait and see.Should i look x another opinion? O wait x the next MR to compare with the 1 one?
ciao, Marina

Well, it is one of those things where there isn't mountains of data, since biologics are relatively new, except for use in RA. Plus, like anything else, there's no guarantee that they would even work for you, so it is a leap of faith.

As you can see, I spent quite a bit of time and effort trying other things. Granted, some of them were even before I was diagnosed, and I actually did pretty well on NSAIDs (the primary treatment) for a few years until I had to stop taking them.

I remember one member here LuckyOne, who maintains pretty well with diet control, mostly a strict carbohydrate restriction. I haven't seen any posts by him in quite a while though.
http://www.spondylitis.org/about/diet_lowstarch.aspx
Trying these other options certainly will not make things worse, and could possibly work for you. I would not worry about repeat imaging studies, and base your decisions on how you feel, since that is what it is all about anyway.

Jan

That is exactly how I feel about shutting the door after the horse has bolted. NZ is a very small country with not a huge budget for medical care. Having said that I have had fantastic care and treatment, which is free and open to every New Zealander.

I have never been prescribed NSAID's before because of my UC. So perhaps that is my next step when I see my Rheumatologist, I hope so.

Might be a good strategy. Here in the US, often biologics may be initially denied coverage, but then approved if NSAIDs ahve been tried and failed or contraindicated due to side effects. Other than methotrexate and sulfasalazine, there really isn't anything else.

Plus, sulfasalazine is mostly just for the peripheral arthritis. I've been on it for what seems like forever. My rheumy suggested I try tapering off of it, since I was stable. I was taking 3 grams a day. I reduced to 1 gram a day and quickly developed a lot of hip, elbow and shoulder pain. Moving back up to 2 grams a day got me back on tract. So, I definitely still need both the sulfasalazine and Simponi.

Jan

Hi,

I had UC when i was 15 and in my early 20s started having joint issues. Like others have mentioned as well, most of my tests showed "everything was fine" but based on my UC history and symptoms, it was diagnosed as sacroilitiis. My rheumy says there is a link between bowel issues and joint issues (only a bone scan actually showed inflammation). And actually, at every appointment with my rheumy, one of the first questions he asks is "how are my bowels doing?"

For me, I take celebrex daily (but have been told if it gets bad, that there are biologics). I am mostly ok it and only take 1x/day (whereas the standard dosage is 2x/day), although at present my stomach is irritated so am taking a break from it.

I do take fish oil, vitmain D and have tried things like tumeric and glucosamine, but I honestly don't see a difference. I eat healthy, but also have a very bad sweet tooth (which I am pretty sure isn't helping the inflammation).

I did take physio for months and learned both muscle strenghening exercises and stretches to help with my joint issues...which I believe are helping. As Jan mentioned, I also find that walking on a treadmill helps (but I have to find that threshhold and not overdue it or it can make me more sore). I did try acupuncture a few times, but I believe the guy hit a nerve, which gave me a bad flare up for 2 weeks so I have not gone back.

For me, I have many issues......nasal congestion, ashtma, the UC, sacroilitiis, tenditinits, etc. ...but they all have one common theme and that's inflammation. Unfortuantely, we've been dealt a bad deck of cards, but not sure how far we can go without getting medical help to try and prevent further damage and help function day to day.

Good luck to you.

I am resolved to the fact that there will probably never be a cure for me. Not being negative or depressed, but just realistic.

If all options fail and I end up bedridden again in unbearable pain I have made sure there is a way out. After everything I have been through and the years of suffering, I have legally made sure that my wishes with regard to treatment given to me in the future, or more appropriately NOT given to me in the event that I can no longer do things for myself and in uncontrollable pain, are adhered too.

I know this is not a pleasant topic, but for me I am at ease that I have addressed this. It will save my family and friends having to make hard descisions.