Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How painful is AS ?

Ive been diagnosed with AS from 1998
At that time I though it was due to my activity (football).
At that time in Indonesia the Doctor said there was no cure so they just gave me painkiller.
2006 I went to NL to study and got Enbrel from 2009 til now.
Now, my visa is over and the government might send me back home and I might have to live in Indonesia without Enbrel.

The question is, how painful is AS
I mean back then in 1998 I felt like someone punch me on the bone. My teacher's partner in NL has AS and he said it is unbearable to the point he has to use weed / morphine (PS: Enbrel doesnt work for him).

So with this I just want to know with the pain I might have to deal with when the government send me back to Indonesia.

thanks

You can definitely get anti-tnf drugs in Indonesia, so I don't know why you think you would have to live without Enbrel.

Make sure you get letters from the rheumatologist in NL, and copies of any medical records, like xray or MRI reports, that you can take back with you. Get the rheumatologist to write in the letter why you were put on Enbrel and what difference it has made to you, as well as details of what dose and how often. Then take all that back to your doctor in Indonesia.

You might want to try and find a different rheumatologist if the last one you had there said "there was no cure". He's right that there is no cure, but there is definitely good treatment available, as you have found out.

Hi,

The problem is not the availability.

I did some research, and enbrel costs the same in Indonesia +- €1200-1400 for 4x syringe 50mg for 1 month, which definitely I cannot afford.

FYI Indonesian standard salary would be $500/month, lets say Im lucky and because I got diploma from NL I can get $700 to $900/m, still I cant afford it, and might have to reduce to 2x a month.

It was in 2004 (I think), that the doctor in Indonesia said there was no cure whatsoever. I dunno if it was not yet introduce to Indonesia or because the doctor know that it was beyond reach for most Indonesian.

Hello, rronald25:

Although AS cannot be cured, there are treatment options that can put us in total remission for protracted periods of time; I am @15 years and counting (knock wood).

AS is SO PAINFUL that it can make us change our diets. Fortunately, changing diet is real treatment opposed to palliative pain relief.

SELF-MANAGEMENT: Doctors did not give us this disease, but their drugs can make it much worse (NSAIDs in my case) or give us other unwanted 'challenges' (steroids). And diet is much cheaper than the biologics.

Good Luck, whatever You decide,
John

Well, the doctor is right....there is no cure. Enbrel works to alleviate pain for many, but it's not a cure. When I had to come off Enbrel, the pain came back as worse as before I started it 4 years earlier.

As far as how bad is the pain, that depends on the severity of the AS and your pain threshhold. It was intolerable for me, until I started NSD, and now the pain is manageable, unless I overwork myself physically.

--Greg

Everyone is different, I have a very high pain threshold. I am one of the more severe cases, and during all the real painful yrs. I could have had my choice of most of the narcotics, but chose not too. I pretty much just took the edge off when it was the worst with Darvocet, and Flexeril. I am fully fused all the way to the top of my neck and head is pulled forward at about a 45 degree angle, but most of my pain now days is from the mechanical damage. I have had this stuff for about 43 yrs.
J.R.

Thats what Im worried about, ive been treatet with enbrel for 4 years now and the symptoms stop, now im afaid what it feels like without enbrel.

Just curios for you who feels unbearable / great amount of pain, what do you feel? is it more like stab, needles puncture, burning sensation or else?
For me before i used enbrel I felt like someone punch me in the spine, it was uncomfortable but not like unbearable pain for me.

Hello there,

I had to come off of pain medications that worked for me 11 years ago because of my liver. I switched to the No Starch Diet and I still do very well with my AS.

It is an option if you are forced to come off of medications.

Best to you,

Tim

For me, unbearable pain was frequent spasms of the lower rib cage. The spasms would come at any time and stop me in my tracks and make it where I couldn't even breathe. Each spasm felt like one of my lower ribs was twisting inside me: Excruciating pain. Lying, sitting, standing, walking....it didn't matter. The only way I could sleep at night was to take Flexeril, which would only last a few hours. And on top of that, my neck was overly stiff and my hips ached, but those were nothing compared to the rib spasms. NSD stopped the spasms.

--Greg

It looks like you want a point blank answer Ronald. I am one of the ones mentioned who was feeling unbearable pain. Intractable pain. It felt like was stiff as a board and the pain was like a burning in my bones especially in the morning and then it became worst through the night. I just felt inflamed all the time. It hurt. I have had this disease since I was 28 and at 32 went into remission. There were no biologics back then and certainly no diet was discussed. It just happened! It came back 4 years ago at the ago of 51 and progressed rapidly even though taking Sulphasalazine and having Remicade infusions. With no other options left, I went for the pain pump implant and I am so glad that I did.

You might have to get a pain med or a muscle relaxer, whatever your system can tolerate to help you with breakthrough pain but please try the diet as much as you can and stay with it even if you have to have pain meds. I hope that I have answered your question.