Dropping the H-Bomb

After 22 uneventful years of managing my AS and Crohn's with sulfasalazine, I stopped taking all meds in January 2012, deciding to take Vitamin D3 alone to manage my issues. That worked perfectly from January through September. But from September through yesterday, I have been in constant skeletal pain from the AS and my Crohn's was, for lack of a better phrase, a pain in my ass. I went on the SCD two months ago to determine if that alone would help with the Crohn's symptoms. It certainly did help but, unlike in the past when a quiet gut meant quiet arthritis, I enjoyed no such relief this time around. Enter the H-Bomb.

Even though my Rheumy prescribed Humira for me, she got me the starter kit for Crohn's patients - I.e. a six shot box for the four loading doses plus two more doses in two weeks. A friend with AS, but no gut involvement, started with a single dose. This same friend was kind enough to send me a video of how he injects himself. Armed with that video, the knowledge gained from this forum (HUGE thank you, everyone!), and a burning desire to vanquish the debilitating pain in my back, I cracked open the box and began the loading doses.

The first two went into my stomach. They burned. Perhaps I did not allow the medicine to get closer to room temperature. But the two that went into each though were remarkably unremarkable. Note to self: stick to the thighs next time.

After the loading doses, I popped what I hope will be my last Tylenol 3 for a long, long time, and got on with my evening. My back was still a mess last night, leaving me little hope of playing in my men's league hockey game tonight. But, this morning, wallah! I am virtually pain free. Holy crap, though I have not had any of those yet. That too is a surprise as I am usually good for three trips to the little boys' room every morning. No gurgling, no cramps, no urgency.

So although my main goal for using Humira was to relieve symptoms of AS, it appears to have had an immediate, positive effect on my Crohn's as well. I sincerely hope it closes my one fistula that is a constant source of frustration, itchiness, odor, etc. stay tuned...

Day 3 from my initial loading dose injection day. Bowels are quiet and output is well formed and solid. The greater affect has been on my arthritis. With the exception of the nine months in 2012 when I was taking no medications and miraculously felt pretty good on a day-to-day basis, I am pain free for the first time in twenty-two years. Getting to sleep has been a challenge on Humira but I think some melatonin will assist with that side effect. My wife asked me yesterday if I was going to regret not taking Humira sooner (my docs recommended it to me over a year ago but I declined due to concerns about long term results and my stubborn desire to handle my diseases without drugs). I answered that I had a process to navigate and I came to the decision after trying to unsuccessfuly manage things without it. It has, indeed, been life changing.

I am so glad it is working so well for you and long may it continue. Sometimes we have to try different things out before we commit to a medication because if it works with out using them great. I am also very stubborn and like to try and sort things out myself but recently I have been getting better asking for help and realising when I need it.

Day 6: Feeling groovy. "Solid waste" in no longer just a term related to garbage. My need to visit the lavatory at least three times prior to leaving the house in the morning has disappeared. More importantly for me, the horrible back pain from my ankylosing spondylitis is 97% gone. Falling asleep is a small issue but Melatonin took care of that. Now the only thing I feel is what I'll call Humira Guilt: the sentiment of feeling guilty for feeling so damn well. I'm still adhering strictly to the SCD. No reason to make the H-Bomb work harder than necessary.

Poop2Much what are your AS symptoms? I hope I can get this under control also bc I am a very active and lively individual but this is sucking the life out of me...

Jajabinks said:

Poop2Much what are you AS symptoms? I hope I can get this under control also bc I am a very active and lively individual but this is sucking the life out of me...

Click to expand...

My symptoms started 25 years ago with debilitating hip and sacroiliac pain. Simply rolling over in bed in the morning was the most pain I had ever experienced. I controlled my AS and Crohn's symptoms with Sulfasalazine for 24 years until it stopped working for me. I then started on Humira in August 2013. Before starting Humira, my normal symptoms were back pain, tendonitis in my shoulders, sharp pains in my scapulars, and sharp pains in and around my rib cage. All are gone, and have been gone, since I started Humira. Pain is relative and tolerance for pain dealing with AS for so many years is relative too. For example, I did not allow AS pain to stop me from doing several ultra-endurance bike races prior to using Humira. You plow through the pain, otherwise it controls your life. Humira has eliminated all pain, allowing me to feel pain as I deem appropriate - i.e. training hard for races- not as the disease dictates.

Thank you Poop2much. At the moment the pain is consuming me and I am hoping that sulfaz will work for me as well bc I am not ready to pull out the big guns yet. I want to use those drugs as my lifeline when all other therapies have failed. I miss the active and spontaneous person I was before this crept up on me. You seem like a strong individual. I am also getting the good old eye inflammation

Did you have to deal with the sciatica pain? If so, how did you resolve it?

Jajabinks said:

Thank you Poop2much. At the moment the pain is consuming me and I am hoping that sulfaz will work for me as well bc I am not ready to pull out the big guns yet. I want to use those drugs as my lifeline when all other therapies have failed. I miss the active and spontaneous person I was before this crept up on me. You seem like a strong individual. I am also getting the good old eye inflammation

Click to expand...

I understand and appreciate your desire to manage your disease with the least risky alternative, sulfasalazine. I was very fortunate to able to reasonably manage my symptoms with sulfa but when it stopped working, I tried dietary changes, vitamins, yoga, you name it. Nothing worked. In retrospect, I dealt with a lot of discomfort in 2012-2013 unnecessarily. Moreover, I probably allowed my diseases to progress and further harm my GI tract and joints; that's the real loss. I know that I wanted to try anything and everything before going on Humira but I am not sure that the constant pain and additional damage to my body was worth it. I know that I fully appreciate how well I feel now and kinda wish I had not been so reticent a year ago.

As for the sacro pain, I walked gingerly and took NSAIDS which, of course, caused my GI to flair which set off my arthritis. Vicious cycle I once dealt with ... But no more!

Go through your process, whatever that may be. Only you know what is best for you and when the right time will be to take a biologic. I have been very fortunate that it has worked wonders for my body, taking me back 25 years to a time when I had very few limitations.

That's great. It's a beautiful day here in NY and I am walking around soaking in the sun. Feels good. The winter and arthritis was giving me the blues! Where you were having the sacro issues did you have a hard time sitting down long? Pain in your legs? I'm doing lots of exercises for this but don't think it works. Were you able to hold a job? That is my biggest fear, not being able to work and do fun things with my son like I used to. I want to be able to walk again with no pain!

Jajabinks said:

That's great. It's a beautiful day here in NY and I am walking around soaking in the sun. Feels good. The winter and arthritis was giving me the blues! Where you were having the sacro issues did you have a hard time sitting down long? Pain in your legs? I'm doing lots of exercises for this but don't think it works. Were you able to hold a job? That is my biggest fear, not being able to work and do fun things with my son like I used to. I want to be able to walk again with no pain!

Click to expand...

I have been steadily employed, the disease notwithstanding. I have had to deal with plenty of discomfort over the years but, other than normal illnesses - flu, etc - my AS has not kept me from working. I do not spend many of my days at a desk, but I most certainly did have issues sitting and getting up when my sacro issues were in flare. When I was undiagnosed in college, it absolutely kept me from going to class. I started out taking Indocin (I called them Meanie Greenies because of how they made me feel) but they tore apart my stomach and, I believe, kicked off my Crohn's issues. After that, I only took sulfasalazine and enjoyed good success with that drug for 24 years.

Again, go through your process if you must. Even when I felt my best on sulfasalazine, it did not compare to the magic of Humira.

One of my daughters tried Sulfaslazine by itself for 3 months. It helped a little, but not a lot. Both my girls have needed biologics + other drugs to get their AS under control. Humira has really been a game-changer for both of them. Since they're so young, we could not risk joint damage so we went to biologics relatively quickly. My only regret is not going to Humira earlier for my older daughter, because her hips are quite damaged. Doctors say that she will need hip replacements in the next decade. She's 20.
Good luck with whatever you choose!

Are you experiencing any of the serious side effects of humira?
I'm on Pentasa right now.

Poop2Much said:

I have been steadily employed, the disease notwithstanding. I have had to deal with plenty of discomfort over the years but, other than normal illnesses - flu, etc - my AS has not kept me from working. I do not spend many of my days at a desk, but I most certainly did have issues sitting and getting up when my sacro issues were in flare. When I was undiagnosed in college, it absolutely kept me from going to class. I started out taking Indocin (I called them Meanie Greenies because of how they made me feel) but they tore apart my stomach and, I believe, kicked off my Crohn's issues. After that, I only took sulfasalazine and enjoyed good success with that drug for 24 years.

Again, go through your process if you must. Even when I felt my best on sulfasalazine, it did not compare to the magic of Humira.

Click to expand...

Hey Poop2much, how have you been? How's Humira treating you? I wanted to know of you have had to deal with fatigue with your diseases.

Still feeling well, playing ice hockey twice a week, running a few times a week, and playing golf. Simple things like getting in and out of my car are painless as well. Fatigue hits me like a hammer around 4pm some days, but not all. Fatigue is a minor nuisance to deal with compared to chronic pain. I'll take the former everyday of the week.

I'm going to PM you if you don't mind.

Sure.

I'll take the fatigue over the pain also. I need my mobility back so I can run and kick balls with my kid again. Thanks for the Humira success story.

I began my Humira treatment last Friday, next dose is the 29th. Still having buttock and lower back pain but I guess it's not too bad. My main goal is to vanquish the buttock pain... I hope the next dose helps more.

I start Humira in a couple of weeks and feel so much better about it after reading this thread. I'm so glad it's working well for a lot of you. I'm optimistic that it'll work well for me too!