Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Whats wrong with my body?

Hi all, first time posting here. I’m 25 this year and I’ve been suffering from Seronegative Spondylitis for slightly over a Year.

I’ve been on Humira treatment for over 3 months now. My current treatment plan would consist of a Humira injection once every 2 weeks and daily dosage of 6 tablets of salazopyrin and 2 tablets of Norgesic at night.

While it has worked wonders I’m still rather skeptical despite numerous very positive blood tests.

My last 3 monthly blood test showed that my body had already returned to its “normal” condition (Platelet, ESR, C-reavtice protein) all in the healthy range. I will be on Humira on another 3 more months before the doctor decides to slowly wean me off the medication. He wants my condition to stabilize further then resort to an alternative treatment plan. (I will slowly be weaning off the Humira in 3 months time but not the pill poppings……)

Despite being on Humira, I still get pains around my knees. These pains are occasional and they normally come and go. They aren’t constant and definitely not daily. I’ve asked my doctor why and he says these pains aren’t attributed to the spondylitis at work since my blood tests have proven that my body is in normal condition. He then explained that my body was in a “stooped” posture before the Humira treatment and that my body is now adjusting to its new “freedom and flexibility” hence the pain. It is trying to do what it could not for the past 10 months….

However, recently I’ve been feeling some pain along my upper back around the vertebrae. The pain is very inconsistent and it goes on the off. Would this mean that the disease is progressing??(Take note for the past 3 months my body has showed perfect conditions, last blood test was 3 weeks ago) …I need to know why I’m in pain if my blood test are ok…(pain feels like someone punching my back but its not constant and doest last throughout the day)…

The left side of my body also seems to be less flexible then the right side. I see to be getting stiffness randomly on the left side of my body (arms legs and all).

I need to know why I'm feeling like this..is the spondylitis secretly atatcking my body? Whats going on...

I'm sorry if i posted in the wrong section of the forums..

get off the starch ASAP if you want to improve your life. i was in massive pain for 15 years with AS, but 3 days after the NSD was more relief than any drug ever gave me. im feeling better everyday following this NSD, it worked for me anyway.

Well, to be fairly honest, I did mention this no starch diet to my doctor before but he seems rather erm..skeptical about it.. thats why i didnt try.

Seems like its worth a shot now then. No harm trying i guess.

It sounds consistent with my experiences. Its only now I am NSD and no dairy that I realise how many weird aches and pains I had...that are now mainly gone!

It took me longer than Darryn, maybe 4 weeks to really feel the benefit. I stumbled this morning feeling a bit stiff but I am confident I am moving in the right direction.

Good luck and get stuck in to NSD. It isn't as hard as you may think.

Cheers

Keith

just stick to it as strictly as you can to get quicker results using iodine as back up. pm me if you need a hand to get up and started only too pleased to get you feeling less pain.

Hi and welcome to KA.

I've never heard of a doctor weaning a patient of one of the biologics. Sounds like he was using it to arrest the crisis. You say he'll use an alternative treatment plan. What will that consist of, do you know? You've obviously had very good results with Humira, as many of us have on the biologics.

I'm also curious to know what your ESR and CRP were at before you started Humira, and where they are now.

It's rare to find a doctor who will not snear at the NSD. Give it a good try. Darryn was the exception, not the rule, when it comes to how quickly you can feel results. I generally recommend giving it 6 to 8 weeks before deciding whether or not it's helping, and if so, how much. It can take that long for your body to adjust to the new input.

The pain in your thoracic (upper back) area could be the disease taking slight hold again, or it could be 'situational' in nature (i.e. you might have spent more time at a computer than usual, or done something else to strain the area a bit - we are very sensitive to these things).

Good luck with it all.

Hugs,

My numbers have always been normal yet i've had a great deal of stiffness, pain, eye problems and other symptoms - so i don't think the blood tests can be an accurate picture of how you actually feel. And the pain moves around, seems without rhyme or reason but sometimes I can track it to an activity or other, like food - when i eat starchy it usually rears its ugly head in my hands, neck and eyes.

I've read on here that medications can work at first and then stop being effective, some have to move on to a different biologic and some go on the mtx after sulphasalazine. You may have to try different meds.

I would also suggest giving the diet a try. And results do vary from person to person - i've been on it over a year and i still have pain but nothing compared to the before so its worth it for me.
mary cay

Why would you want to come off the meds? They are obviously working for you. Just because your bloods are normal - doesn't mean a thing. The disease attacks your bones, tendons, joints and not your blood. You blood may or may not show inflammation, it varies from person to person. May I ask where you are? Are you in the US? Can you please seek another opinion before you are taken off a med that certainly is working for you?

Many times a person may come off the meds that are holding this monster at bay and eventually, the disease comes raring back and is hard to control than before. Control of this disease is an elusive thing, you are lucky to have it. Please don't throw that away.

Jewelz

it is to be expected that your CRP/ESR would return to near-normal while you are on humira, it alters the chemistry of your immune system so that one of the important messengers in the inflammation process does not do it's job, hence the inflammation goes away. that being said, it does not FIX anything, and most people only see results for as long as they are taking it. I hate to be a bummer, but in all likelyhood your symptoms will return when you wean off it, as the thing that is actually CAUSING the inflammation has not changed. and I'll give you 1 guess what IS causing in

yep, starch in your diet is, in all likelyhood, the culprit. honestly, in regards to your doctor being sceptical, think for a second where his pay comes from. pharmaceutical companies. and it is not in their interests for you to be able to find relief from this disease simply by diet, even to the point where you won't have to buy their pills anymore!

I will say in all honesty that doing the NSD is the only thing that has actually worked to help me deal with this disease, because I am treating the CAUSE.

also, in regards to your muscle stiffness, this is quite common among us and is not nessecarily because of the disease itself, but little knots of congealed tissue in your muscles known as trigger points. if you search for 'The Trigger Point Therapy Workbook' by Clair Davies, it shows you how to locate the offending trigger points (trickier than you might think!) and self-treat them using massage. This has also been extremely useful for me, as until all of your muscles are working correctly and in harmony, you are more likely to injure yourself than build strength.

Nemesys,
U said it all about the docs and the med conspiracy!!!YOU SAID IT ALL!!!They don't want us to fix ourselves and get better,they want us on $3000.00/mo Simponi!!! Sheesh...So sad....BTW,11 days back strict after falling off the NSD wagon and I was RUNNING today!! Running!! hahaha
SHAUNA