Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club OKay, I guess I have to face it...

Weird. Yeah, definitely ask your rheumatologist why he predicts an allergy to those meds. Unless there's another allergy or medical condition at work here that hasn't come up yet in your posts, I really don't know what he's talking about. There are certainly some medical conditions that preclude patients from taking anti-TNFs. MS, other nerve disorders, epilepsy and cancer are some that generally exclude their use. I see that congestive heart failure, diabetes, and asthma are also things you should notify your doctor about before taking anti-TNFs, though I'm not sure of the specific concerns for those conditions. I have mild asthma and it hasn't been a problem where my treatments are concerned. Are you allergic to latex by any chance? There's latex used in most of the delivery methods for the anti-TNFs. Off the top of my head, I don't think Humira or Simponi have latex-free options. Enbrel has one latex-free option (the prefilled syringe and autoinjector have latex, but there's an option you mix yourself that doesn't), and I'm sure the ones delivered via IV like Remicade are latex free as well.

Is there any chance that he said Celebrex and not Cymbalta? I often mix up those two brand names myself with their heavy TV advertising for use in some of the same conditions and their similar sounding names. Celebrex is a problem both for aspirin and sulfa allergies. It's an NSAID, as opposed to Cymbalta which is a serotonin-norepinephrine reuptake inhibitor, aka an antidepressant.

I don't think scoliosis can affect fusion, but I might be wrong.

Doctors are often misinformed, sadly. There's no real way to predict the disease course in any individual. But I did read a few papers supporting the notion that the first ten years of disease are usually representative of the outcome.

For instance: no hip involvement within the first decade seems to predict that the hips will not be a big problem later on. Most major problems seem to start within the first decade.

I don't see why your doctors told you that you'd fuse in ten years. Some people start to fuse early and it stops and never starts again. The truth is there is no one truth about this disease and doctors have a hard time admitting that they can just treat symptoms and have no idea what the future will hold.

Don't pay TOO much attention to the predictions of your docs.

Even if you get it into remission there's no way to know if fusion will continue. Remission is a clinical designation - reflecting symptoms, quality of life, etc. None of the medications available to us have been shown to stop fusion, if it is happening. It is possible that NSAIDs may slow the rate of fusion in people who already have some fusion, but there isn't enough data yet.

As has been said - nobody can predict with a high degree of accuracy, which of us will have a lot of spinal fusion. Since we can't control it, the best thing to do is to avoid fretting and focus on interventions that reduce pain and stiffness and improve range of motion and overall quality of life - aka remission

Thanks, everybody! That makes me feel better. I have been so freaked out by the thought of total fusion!

I will continue with the NSAIDs and hope for the best. I am increasing my activity, which is also increasing my pain by quite a bit. I can only think the extra blood flow and exercise is good for me. I have an appointment next week with my doctor, to hopefully get a low-dose pain medication.

Another question - I think I am anemic. I have the obvious fatigue, but, the reason I feel I am anemic is the fact that a butterfly can land on my arm and I get a massive bruise. (Okay, not THAT bad, but pretty close!) Do any of you have issues with this? Do you take iron supplements?

Anemia can be caused by inflammation. When my AS was not under control, I had a super-high CRP and inflammatory anemia. I felt a lot more tired than today. My days were chores back then.

NSAIDs can cause easy bruising and increased bleeding. Don't assume anemia and self-treat with iron supplements without talking to your doctor. If it's just the NSAID then you're stuck with it. If it's iron-deficiency anemia then supplements may help (I'm not anemic, but I take one to keep my hematocrit high enough to donate platelets every 2-4 weeks). If it's anemia of chronic disease as seymour referenced, iron supplements will NOT help. Managing the disease WILL help.

Bruising could be a sign of vitamin K deficiency. Everybody, especially women who take supplemental calcium, should be taking vitamin K2 anyway (in the MK7 form) for its bone and cardiovascular benefits.

seekonk, I had not heard a recommendation like that (about vitamin K) - can you share some references?

The wikipedia page on vitamin K2 is a good starting point.

I didn't see anything there supporting your statement that


According to the NIH, the only uses of vitamin K with sufficient evidence are: vitamin K deficiency, prevention of certain bleeding/clotting problems, and reversing the effects of warfarin over-treatment. It also says "[s]o far, research results on the effects of vitamin K on bone strength and fracture risk in people with osteoporosis don’t agree."

That said, it doesn't appear that a vitamin K supplement would be harmful for most people.

Am I missing something?