For some patients, the multiple medications offered for Ankylosing Spondylitis can be a blessing, but for some, it is an ongoing nightmare.  As a patient all you really want is relief.  Relief mainly from the pain.  The pain physically and emotionally.  You get diagnosed with a disease that can try to control you.  You hear it has no cure, that it will only get worse.  The frustration level is at its peak and then your Rheumy tells you he has something that will ease some of the pain and possibly even put it in remission.  There is the hope that you have been searching for to put your life back in order.  A ray of sunshine…or is it?

Remicade, the Path I Chose

My doctor chose Remicade for me to try first.  He explained the pros and cons. He said it has had amazing results for a lot of his patients.  I would sit in a chair for 2-3 hours hooked to an I.V. getting an infusion.  It would target specific proteins in the body’s immune system to help control the development of inflammation, significantly reducing painful symptoms.  In diseases like ankylosing spondylitis, TNFα-neutralizing medication can cause your immune system to attack healthy tissues in your body and cause inflammation and damage.  If these diseases are untreated, it can cause permanent damage to the body’s bones, cartilage, and tissue.  Remicade can lower the ability of your immune system to fight infections. Serious infections have happened in patients receiving Remicade. These infections include tuberculosis (TB) and infections caused by viruses, fungi or bacteria that have spread throughout the body.  We can’t leave out fever, cough, fatigue, nausea, warm, red or painful skin, cancer, or even heart failure.  Seriously?

So I don’t know about you fellow AS’ers but I seem to be prone to the oddest illnesses.  I don’t get your standard colds, I get pneumonia.  I don’t get low iron, I get Idiopathic thrombocytopenic purpura (ITP), not a pulled muscle in the back, but AS.  Because of my odd way with illnesses I was a little worried that I could have the bad side effects easily but still decided I was at the point that I just needed relief from the pain.  Results vary by person of course, but for me it took until the 5th infusion to notice relief.  I felt like the “old me” again!  I was finally able to get back to my “normal” life.  Then, after about 2 weeks, I was back to where I was before Remicade.  The pain was awful.  I tried to stay positive.  I was so thankful for even the few short weeks of relief I did experience knowing there are some who do not even get a few hours.

Antibodies, the Devil of Remicade

As I would go for my blood work every few weeks we noticed that my counts were becoming more and more of a problem.  I was so upset.  He would tell me what could be going on and they were of course the scariest things possible.  I was not ready to fight any other battles.  I hadn’t even been able to defeat AS yet, how could I take on more?  He sent me to an Oncologist/Hematologist and a Cardiologist.  It was the scariest few months I had ever had to experience.  It was kind of funny because both doctors found it humorous that I sat in their offices and told THEM that I knew I couldn’t and didn’t have a cancer or a heart issue.  I literally told them I didn’t have “time” to add them to my medical history.  Thankfully, I was right.  I did have a small leakage in the heart and was diagnosed with a blood disorder, but they were both something that just needed to be  monitored.  I received a get out of jail free card this time around.

I went for my 6th, 7th and 8th infusion and finally was told I would need to stop Remicade immediately.  Antibodies were on the attack.  They were attacking my organs full force.  As I was ready to break down and tears welled in my eyes he quickly assured me we could try something else.  A sigh of relief was let out.  There was still hope.  I could get pain relief.  As far as my organs were concerned, his thoughts were that with stopping the Remicade the organs would mend themselves.  I just need to continue being monitored.

They say that when one door closes another one opens…perfect for my TNF experience.  Many AS patients go through several medicines before they find one that works.  I am not the only one that had to experience the bad side before I get to feel relief.  I will be starting Humira as soon as insurance approves it and am extremely optimistic that this will be the one that works for me!

Share With Me

AS patients – What medicines have you tried?  Did you have a good experience, bad or both?

Support System – If your loved one has started a medicine to relieve their pain, what has your experience been after treatment day with them?

2 Comments

  • Ken says:

    I have AS, IBD, Anemia, Osteopenia, Raynaulds, High Blood pressure, Osteo Arthritis, Iritis & it now seems very possible I have wheat sensitivity or Celiac, maybe all this time its what has contributed to my AS pain. (Although the Dr ordered blood test of Anti ttg and IgA which came back negative)

    I am on Enbrel for the AS.
    It is a once a week Auto Injection in the upper thigh muscle.

    I do experience relief from AS symptoms but not completely as I still have to take Celebrex & Sulfazalasine. However, I have a permanent cold & Sinanitis I am convinced is in large part due to the Enbrel, so I skip does here & there. I take a lot of natural supplements like high doses of EPA/DHA fish oil (900mgs)

    I ave noticed when I go without food for a couple of days (in prep for Colonoscopy) I have a ton of incredible energy and symptoms of my A.S. are eased, so I am leaning more & more towards the Gluten connection as I love bread & pastas. Consumption of grains may be the worse thing for me in the long run & Taking Enbrel scares me. Remicade scares me even more so as its longer lasting in the body. With the Enbrel its completely out of your system within a month from your last injection & not so harmful to the liver is my understanding.

    Might be worth a try for you since the Remicade was a nightmare experience, but I personally am going to try eliminating all gluten from my diet. Its a challenge but if it works…!!! 🙂 Best of luck to you on your journey. Ken

  • AS girl says:

    Just started enbrel a week ago. Having HIGH hopes on these injections!!! BUT- already feel like I am getting sick (side effects, right?) ugh. Super frustrating. But still trying to be patient and have faith that I can find something that will change my life!

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