Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Fusing

Fusion is probably the scariest thing about AS for me. I can tolerate pain pretty well, I can live with some damage, but permanent and apparent fusion is like a sword hanging over my head.

My neck is the part that scares me the most fusion-wise cause it's more apparent and annoying (I find).

Luckily for now (knock on wood) I don't have any fusion after 5 years of disease.

Just to try to go back to the topic, is fusing reversible?

No I don't think fusion is reversible. Once the fused bone is formed, it will probably be like that forever.

I agree. The fusion and potential deformity is the scariest part of living with this. I'm only 20 and had severe pain for 5 years. I don't really want to think about where I will be when I'm 30.

Hopefully we can find a solution and avoid the stooping.

Seb, I've now had for at least 15 years, severe inflammation and pain and disfunction, but no evidence of fusing.

I don't think we all fuse.

Rather, my inflammation eats away at my bones: my forearm is -1.2 where there is no inflammation and -2.4 in my wrist where there has been a lot of inflammation.

(and maybe contributes to the bone spur formation)

So, severe inflammation and pain does not necessarily lead to fusing.

No one in my family talks about fusing, just the inflammation and pain that goes along with that. So I'm hoping that means I won't be fusing....time will tell I guess. But that doesn't seem to be part of my inflammatory process.

Just to reiterate, women don't necessarily have a milder case, but being on here, hearing everyone talk, I do think many women "present" differently than the old stereotypical model, which included fusing.

No, fusing is not, to my knowledge reversible.

Also a comment on the biologics; for me, the Humira has been life changing. And I feel healthier on it than not on it including less problems with UTIs, not more like I had feared would happen. Its only been a few months, but so far, so good.

Are biologics dangerous?

maybe.

Is chronic inflammation dangerous?

absolutely!

Everything from heart disease to cancer to osteoporosis. No thank you.

Chronic inflamation is dangerous absolutely, but telling that biologics are not dangerous is untrue absolutely!
Everyone has right to make its own choices but choices based on correct and proved facts. If you ask yourself may I get lymphoma,MS, pneumonia, other cancers using biologics the answer is yes, and that is the fact. It is written on their official sites and you need to know it. After that choice is upon you.

Interesting points Sue, thanks for that.

Nenandu73. I think we all agree that biologics can be very dangerous drugs, there's no denying it. However, at some point you may get to the stage where you are willing to try anything to improve your life.

At this stage I'm waking up in extreme pain pretty much every single day and battling through this for the whole day. Most days I am only at school for a couple of hours because the pain is way past my coping threshold. I sadly am probably spending most of my life as a college student sleeping. My grades are suffering, as are my social and sporting lives.

I really want to live a normal life and I am hopeful that Enbrel will kick in at some point and give me this privilege. I am hopeful that the day will come when I can be happy about my current state and positive about the future.

Biologics provide this hope. The majority of people experience fantastic results on bologics and have no side effects. I agree though, the side effects can be terrifying. Touch wood that you, I or anybody will have to experience MS, cancer or anything like that from these drugs.

It depends how much your condition is affecting your life. I as most people on here would probably recommend that you look into the no starch diet first. Many many people have amazing results on this and I think you should definitely give it a go. If this doesn't work however, I think biologics are definitely another option that should be considered.

Once a joint is fused, it can not be reversed. However, according to this recent study, Anti-TNF medications DO appear to reduce or slow down radiographic progression. Early treatment is found to be more effective then later treatment. http://www.ncbi.nlm.nih.gov/pubmed/23818109

CONCLUSIONS:
TNF-inhibitors appear to reduce radiographic progression in AS, especially with early initiation and longer duration of follow up. © 2013 American College of Rheumatology.

Biologics have proven to be highly effective for many people. No one is denying the possibility of side effects, but the serious side effects you list are extremely rare. There are potential side effects to absolutely everything in life - including non-treatment and "natural" cures. For something to have an effect in treating disease, there is always a potential side effect.

Yes, people should make their own informed choices based on facts, not based on fear. Facts would come from controlled medical studies, not sensational news headlines or posts on patient forums that are not backed up by references from medical studies. Studies have shown that the risk of cancer is elevated in patients with inflammatory disorders over the general population. You can also get any of the conditions you listed while not taking anti-TNFs.

Seb,
I completely understand what You say and as I have written final decision is upon every single at the end. As MD I have obligation to say everything I know. Biologics are in use for short period of time that we may give solid conclusions. Unfortunately even for such short period of time they showed very bad side effects. There are people on this forum also who experienced that. When I say something like this I don't even think on pneumonia but MS, cancers...
Also I guess there are young people who want to have children, and there are no data what side effects biologics may cause to babies and genetic material of parents.
Maybe biologics will show as revolutionary cure for AS but in this moment it is far too early that anyone may say "take it, it is the solution for you"

Stormy,
I see that you are very good in quoting so I hope You will be able to show me more studies which may answer questions, not important for me but for the health of people who are trying to find the best solution for their AS.
I am MD epidemiologist, and I know very good what are studies. You showed one study on the 340 people to prove efficiency of biologics. On this forum you may find study which shows that benefits from Sulfasalazine and Methatrexate are the same as from biologics. I ask you which study should be believed more?
You say "Biologics have proven to be highly effective for many people". What studies are you quoting when you write this? How MANY people? How many people suffered severe side effects?
How long are biologics in use and how big specimen is used in studies?
What are side effects on genetic material of parents and newborn babies?
On official sites for biologics you may find warnings about MS, cancers, lymphoma...and you say it is spreading a fear if someone repeat it?
Serious studies about some medication have to be made for period not shorter than 10 years. It is minimum. Also it has to cover thousands of people and even that wouldn't be enough to make absolutely sure conclusion.
Doll and Hill made study about side effects of smoking on over 40 000 people for several decades to prove it.
Do you use biologics? What is your profession?
I don't see that I have told that AS wouldn't be cured, but spinning story about biologics as ultimate choice in this moment when there are so many unknown facts and dangerous side effects is at least unfair.
When the first time appeared Enbrel was presented as miracle cure, now from this point of view it is more than obvious that it wasn't true.
Once again everyone choose it's own way but when you choose it ask for facts as solid as it can be.