Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Tired and fed up

Hi
I've recently stopped taking Humira which I've been taking for about ten years. It did work wonders for me, I was pain free. One nasty side effect was chronic sinusitis though which was so bad I never had proper colds, I'd just get terrible fatigue and extreme sinus headaches that could go on for days. I stopped taking Humira to try a diet related approach, I couldn't tell if food affected my AS if the drugs were masking it. A year on I am at my wits end. I was pain free for about 8 months then it came back with a vengeance. I can't take anti inflammatories because my gut won't tolerate them so I'm managing on cocodamol. I see a nutritionist and we're working through various tests, I've cut out gluten and lactose which has improved my digestion greatly (I've had a suspected IBD for ten years but it's intermittent and atypical so v difficult to diagnose). I take supplements with turmeric and ginger but it's not helping. I've now got sciatica and I feel like giving up. Since the pain returned I've not slept through the night without being woken up by pain. The pain has ruined holidays, weddings, my social life. Trying to hug my partner is getting trickier as the embrace hurts so much. I don't know what to do. One positive is my sinuses have started to improve, I still get sinusitis but not headaches as they aren't getting as blocked up. This has been a really positive change in terms of quality of life.

Im starting to think either I have a break and go back on the Humira, I'm now sure I can drastically reduce the dose as one injection seems to last 8 months if I'm careful with my diet. Or I have to take much stronger painkillers. Neither option seems great but my alternatives aren't helping yet. There is no info on what happens if you stop ANTI TNF, does the AS come back stronger? I want to start working on my body, I tried gentle exercise at the gym but it just flares me up for the next few days. I do seems to manage hiking so I walk everywhere, it's only problematic when my sacrilliac joint is painful. Physio led Pilates is something I want to try next but I'm not sure I can do it with this amount of pain.

I can't help thinking if I can have a break and get my body back in shape I can try again. I'm worried if I carry on I'm just loosing mobility I regained when I took Humira. Has anyone else tried coming off ANTI TNF and had to go back on it?

Hello, Redmazzy:



I don't think there is any connection, and believe it is just a matter of timing and the natural progression of AS. Although the anti-tnf drugs can provide relief and may stop the advancement of AS a little, I don't think they are as harmful as NSAIDs, which in my case certainly accelerated this disease. Regret these biologics do nothing to address the cause of AS, like diet and antibiotics.

In long-standing disease, I think the combination of strict diet plus antibiotics is the best approach: The Road Back Foundation can refer You to a local physician capable of treating AI diseases using antibiotics. There is information in my dropbox about my own AP for AS: Important AS Resources. But for now, I recommend FASTING; Dr. Garten's chapter on this is available there.

Then be sure to take the oils--EVOliveOil and borage seed oil during flare especially in quantities (up to 2g effective GLA dosage...eight or more capsules, typically).

There are many more options, so don't give up. Some people have done very well taking biologics in combination with their own varied diet; the efficacy of Enbrel as good example has never decreased for them.

HEALTH,
John

Hello Redmazzy,

Why not try another biologic sounds like you are putting up quite a fight against AS.

I just don't want to take a drug that suppresses my immune system. I'd rather be drug free. I saw an osteopath today and he confirmed my sacrilliac joint was inflamed. He said because my trunk wasn't moving it was impacting my pelvis. After an hour of being treated I'm much better, I have got some movement back in my joints and now I can stretch them myself. It's making me wonder how much pain I can alleviate if I can really get stretching things out. Made me feel positive again knowing in a crisis I can get some help.

It was a huge relief to go from feeling helpless after my diagnosis to learning that regular stretching and physical activity (even the slightest) can help relieve my pain in the long run.

Especially after being let down by a couple of immuno-suppressant prescriptions, physical therapy is the best tool against AS. Keep it up!

Hi Redmazzy

I went on Revelex infleximab a type of anti-tnf a few years ago and before the infleximab my pain and CRP was moderately high and looking back, my pain was nothing compared to my pain levels after stopping infleximab... After stopping the biologic my pain slowly increased to the point where I was waking up screaming at 4 am in the morning with some very sharp type of pains.

Due to the amount of pain I suffered I then went back on infleximab for most of 2015. Though I went back on the Biologic, I had a week of pain relief and then after my pain returned to high levels for the rest of the month. It came to a point where the biologic only helped slightly for the first 2 days and then my pain increased to high levels.

I saw the trend of my CRP levels and it was only climbing to higher levels while on infleximab. The doctors concluded that the biologic was no longer working, which was in fact obvious to me since the pain was only increasing.

From the second week in December I decided to stop eating all wheat products and a few other foods since I was tested positive for food sensitivity to those foods earlier during the year.(I did an IgG blood test). After I dropped wheat and the other foods I was allergic to, my pain levels reduced to the point where I could lie on my back again after a year.

Today I had my doctors appointment and despite me telling them my diet is helping me, (which was confirmed by the lowest CRP results in 12 months) they were insisting on me taking the same biologic infleximab since they have to apply for a new one. Due to my CRP only climbing on the biologic I told the doctors I don't want the biologic any more....

It seemed like my doctor did not want to believe that a change in my diet is reducing my CRP results. When I asked If I could copy all my CRP results for the past year, the doc told me NO.

Since all the positive info here on KickAS on the NSD,

Im going to try LSD + NO dairy + reduced sugar + No night shades + NO wheat products(I am allergic)+ Increased good fats(Energy source),

if my CRP levels drop further then I will try NSD + NO dairy + reduced sugar + No night shades + NO wheat products(I am allergic)+ Increased good fats to further reduce my CRP results.

I feel a bit positive since I have managed to reduce my pain with diet and My bloods prove that.

I hope this helps....

Lee


Please note I am using diet and Sulphasalazine......

I have read that Sulphasalazine contains an antibiotic and I hope to reduce bacteria with it.

I am getting really worn down by this disease myself. The amount of pain is getting to me and I feel would cause three or four people problems. There is a constant battle to keep the pain from controlling all aspects of life and still my social life is nearly non-existent.

I have yet to meet anyone, despite my physicians, who truly understand the unreal pain we, with AS, find it necessary to cope with. My pain specialist is trying hard but can only relieve the discomfort up to a point. I really, really miss the old Wino as does my wife who has recently made this clear and actually brought up the dreaded word that married folks hate to hear, "divorce." I pray to Jesus that she remembers her promise and commitment to each other of "in sickness and in health and for better or worse" spoken over twenty years ago. I hope after all this time together, I am not kicked to the curb.

We are not the same people as before diagnosis and a fair amount of us have painful lives and, out of necessity, simply can't do some of the same fun activities pre-diagnosis.

To the original poster: I realize the post was written some time ago but my Rheumatologist has informed me that stopping anti-biologics for an extended period of time, Humira in the OP's case, brings the risk of your body having time to produce anti-bodies to the current anti-biological treatment. This means if waiting too long to restart the Humira, there is a risk that it will become ineffective for future use causing the need to change to a new therapy medication.

I hope all are well.

Warm regards,
TheWino