Alternatives to Biologics Due to Frequent Infections
Posted , 4 users are following.
Hi, 26 year old guy. Diagnosed with AS about 3 years ago. Seems to be a rather aggressive case. I work out extremely hard, three hours five days a week doing powerlifting and interval cardio but NO high impact exercises. One hour of that is dynamic stretching and foam rolling. Eat relatively well because I also have Crohn's disease. Was originally prescribed Humira, but it stopped working. Was then put on Enbrel with much better results. Pain was almost non-existent and in four months was able to squat 290 lbs and deadlift 500. It worked. Too well. The side effects were another story, as I began to get frequent skin and sinus infections. In the course of two months I had to go on antibiotics three times from infections.
I have since stopped taking Enbrel. My reasoning was that it's pointless if after every weekly shot I take I get an infection that causes me to stay off the medicine for three weeks due to antibiotics.
Symptoms of AS are now rapidly returning. Was able to work out only once this week. Constantly sleeping and cannot work. I am not okay with this and determined to find an alternative solution so I can resume my life.
Does anyone have recommendations for alternatives treatments to biologics? Any experience with infections on Enbrel? Perhaps I should only take the shot biweekly. I'm also interested in natural supplements, dietary changes, etc..
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Bytheway calebfletcher
Posted
Hi Cale
Blimey, this article could almost be about me! Very similar medical history.
I'm 37 now, had problems with my hips and spine since mid-late twenties, and diagnosed with AS nearly 5 years ago. I am also Coeliac and have recently been diagnosed with Crohnes in the lower ileum.
I couldn't move very well 4 years ago, in constant pain and living on painkillers. I was an active sportsman before that, doing an hour of whatever every day (football, cyling, running, racket sports etc). I was put on Humira, and similar to you it worked for about 9months and then gradually stopped working. I was getting flu like symptoms for up to 5 days after each injection, and the pain and stiffness had returned anyway, so it was pointless to continue with it.
Same as you, I was switched to Enbrel. It worked for a while, but then I kept getting sinus infections (which apparently is very common, by Rheumatology nurse was telling me). I kept coming off the medication for antibiotics and it was a spiral down of it not really working. I was only every fortnightly on those injections I think.
The specialist was ready to give up as the NHS pathway only allows me to try 2 anti-TNF treatments on their usual funding (are you in the UK?). However, my case was extremely aggressive like yours, and initially the improvement on the biologics was so good that she convinced the board to let me try a 3rd. I'm now taking Cimzia fortnightly and I'm 2 years in (roughly).
Very few side effects, amazing pain relief. I'm also enrolled in an AS physiotherapy class in Manchester which is doing wonders for my flexibility. I go once a week to that, and am now looking into yoga and pilates classes to increase my flexibility and strength further. I'm also a keen rock climber, which is a fantastic sport to develop your core strength and low impact (unless you fall off I suppose!). I stick mainly to indoor climbing.
I think diet is key if you don't want to push for a 3rd biologic. I'm on a gluten free diet, and sometimes go to low starch if I'm having a lot of flair ups. For my stomach issues, I also go through periods of resetting my stomach bacteria with a mixture of cooked apples (saw it on a dieting program) which despite my scepticism, really works to put you on the right track. I cook cut up apples in a bit of water with raisins and cinnamon, then eat a small bowl of this every day (warmed up is lovely) for 2 weeks. It really does wonders for Chrohns symptoms and in turn removes the morning stiffness and general pain from AS.
Hope this is helpful, good luck with it all, you'll start 'coming out the other side' soon I'm sure.
calebfletcher Bytheway
Posted
This is great info! Thank you! Haha and yeah very similar situation sounds like. Right down to inflammation of the ileum!
I'm living in the United States. I'll see if I can switch to another biologic, possibly. Did you notice your immune system was stronger on Cimzia (generally less sicknesses and infections)?
Will definitely look into the apples! Also, have you heard any good things about collagen supplements? I heard it helps reinforce worn ligaments. I've spent so much time studying anatomy that I can narrow down exactly where the pain begins radiating from. Mine is the ischial tuberosity and the SI insertion point. When the inflammation is not out of control I can manage any soreness by targeting those areas. I'm sure you are in the same boat. AS patients could put most sports therapists to shame haha.
beat_AS calebfletcher
Posted
CtKathleen calebfletcher
Posted
I started curcumin last May, it's very helpful. Keep in mind, it's the curcumin that helps with inflammation, not the turmeric. I've found considerable deceptive advertising among these supplements. I've found the curcumin is tough on my stomach and can only take it with food.
I also take supplements/ foods to help with absorption: Biopherine (black pepper) and/or ginger.
I've recently added Omega 3 oils per rheummy. Important, as so many of us are hit with heart attack/ stroke.
Additionally, I've eliminated nightshade vegetables and added anti-inflammatory foods. (Lists found on reputable arthritis medical sites.)
Wishing you a healthy journey!