28 yr old with AS - diagnosis to treatment is taking so long

Hi Linsey I have had as for 15 yrs it's very painful I also had a very bad motorcycle accident at the age of 18 I broke pelvis , both wrist nose and dislocated my shoulder and hip but they put me back together I was in traction for 6 weeks I'm now severely in pain with nerve damage not to sure what It is its in the buttarck do you have any problems with this? Many thanks Paul

Ow and I am on anti tnf ,embreal it is extremely effective but as with all medication side effects are not nice but the benefits are better

Hi Linsey,

I am sorry to hear about all the pain you have been going thru. The two things that got me off the cane is Gabapentin and Mobic! Without those two things I couldn't walk good either. I still have hip, buttock, leg and back pain but not as bad as I did. I also had deep tissue massage, which is painful and he could massage my hips cause it was way too painful but it dis help my back a bit and my legs as well. Just something to think about. I couldn't take methotrexate either as it gave me severe cold sores. I am currently waiting to take my Humira once my sores are gone I can start taking the shots again. I sure hope you find some relief soon.

Hi linsey

Im a 27 yo male with identical symptoms that started 10 years ago and significantly exacerbated the past few years. After a positive diagnosis ive had a week of mris seen an orthopedic surgeon and a rheumatologist with the end result of her recommending humira. Which i must say regardless of the debilitating pain ans immobility that i experience daily i would prefer that, than the possibility of experiencing side effects that are way worse in my opinion. Just the way i am and think. I would much rather to be offered symptomatic treatment like pain medication\muscle relaxors for when im brave enough to attenpt to perform any phtsical activity or attempt to get back in shape. AS diagnosis prevalence has greatly increased in recent years which i assume is driven by the pharma company that pushes ans makes this expensice drug. I also think the risk to reward ratio is much more benefitial with a standard pain med as opposed to a biologic that has a lot of negative effects associated with it and may not give you the results youd like. Just my thoughta i plan to discuss with my doc after a few long months of appointments and long hard thinking ha hope this helps you know your not alone and would be interested to know how humira goes if you decide that route!

Best wishes - michael

Michael,

  Just my 2 cents on this.  Lets not confuse "potential" side effects with side effects.  I have tried several of the biologic drugs (humira, simponi, remicade).  I never saw a side effect from taking the drugs except for an allergic reaction to remicade which forced me to stop taking it.  But an allergic reaction can happen to just about any drug and is not specific to the biologics.  And at the risk of beating a dead horse on this issue, I will say again that my wife has been on remicade for over 13 years with magnificent results and no significant side effects for her rheumatoid arthritis.  

Now, in the spirit of full disclosure I have to say that I did have a weird side effect from the biologics but it was while weaning off the drug rather than while taking it.  I had what the doctors referred to as a lupus-like reaction while weaning off the simponi.  I experienced swelling and redness in my wrist joint which was not typical to me but a dose pack of prednisone put that away rather easily.  I'm not trying to minimize the potential side effects of these powerful drugs but if it is the right drug for you then you can see miraculous results and the cost/benefit analysis is overwhelmingly in favor of taking it.  To me the most serious side effects that I saw is that it really didn't help me to any great degree at all.  And if that is the case then obviously you can't justify the significant cost.  Again, I realize that these are powerful drugs but in the right situation that is exactly what we need and I think that many of us would kill for the type of relief that my wife saw from hers.

Linsey,

Dont worry I feel your pain. If it helps you to relate I am 26 years old living In Australia. Similar circumstance to you in that multiple physio's were clueless, a chiro whom I had spent thousands on after several years (I started trying to seek treatment at 19 after playing sport nearly everyday and having to abruptly stop but of course didnt know what was wrong with me). Chiro did an xray on my hips and said they are out of whack, throwing my whole body off (thanks idiot).

In my early twenties the buttocks pain shifted to the front of my hips, at some points I have no idea how I got to work in the city (City) walking from the station barely being able to move my leg in EXTREME pain.. Like someone was shoving a knife into my hip bone (front side) every second.

anyway I was finally diganosed, had a cortisone shot in my hip about 3 years ago, didnt kick in for two weeks and boy even though my back still killed, just the relief of that was wowsa's.

In summary I took NSAIDS (celebrex a bit and mostly mobic 15mg) which was a god send but I still couldnt really do much exercise on them but at least could live life relatively normal seeing friends / getting to work etc.

Start of last year started Enbrel and WOW, there is still stiffness but compared to before I am like a new human. I can go out, I have more a less stopped talking NSAIDS although still do when my diet is naughty.

Anyway I am on the enrel now and played 11 a side outdoor soccer this year for the first time in about 9 years.. what a god send.

Dont give up bro (or sis?). I am working for a big bank in Australia now and can exercise almost 100% now.

I would rather live my life like this with the risk, then constantly being down and knowing I can't excercise or go out with mates etc.

Cheers,