Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Starting Humira (probably), scared to death...

Just posted this over at SAA as well. Any thoughts would help.

So, really all things have progressed as smoothly as anyone could ever wish for when it comes to finally getting a diagnosis, having boringly normal tests for TB, infections, etc. Humira pen was approved in 3 days and I'll have it tomorrow (which is exactly one week from doc prescribing it).

But, I am honestly on the fence as to what to do. I've had moderate to substantial success with keeping symptoms very low with diet and some fairly low key other meds. I certainly don't want to stay on the naproxen, tramadol, pred long term so something else needs done until I either achieve full success with diet or take my gains with other meds to stay as pain free as possible. That leaves me with my current situation. I can start Humira tomorrow, and my Rheummy is expecting me to have had at least 2 injections before my next visit.

But honestly, I am not really feeling that bad and haven't been too bad for the last 4-6 weeks with NSD. I am certainly concerned with the long term effects of inflammation (even at low levels) and understand I could end up with fusion, etc.

Which brings me heart of this post. I am terrified of the 'rare' side effects associated with TNF blockers. When weighing the risks, I weigh my current situation and potential long term problems with continuing my current situation VS. the scenario of ending up with the worst possible side effect from the biologics. We all know of them: MS, Severe infections, lymphoma, heart issues...death. Of course these are rare. But it sure is a huge dose of reality when you read a website filled with 250+ comments of individual stories of lives literally ruined as a result of what these drugs did to them. Will I trade my current situation for that? Heck no. I have too much to live for. Will I trade the possible long-term problems of inflammation for what should be a very low risk of developing something severe? Maybe. I'm just stuck right now. Scared. Cannot decide what to do.

Hi Corey, welcome!

That's great that NSD is helping you! If you're winning that way, could you just postpone trying humira just for a week or two? Just to see if what you're currently doing is enough to get off prednisone and NSAIDs? I'd hate for you to feel rushed in starting Humira just because your rheumy expects it. Maybe talk it over with him/her and just explain, because it really sounds like you have some serious concerns yet. Humira will always be there for you if you need it down the road... no rush.

Good luck!

Corey,

You are doing your homework, which is great. I got MS from Enbrel, but my problem was more of not recognizing the earliest symptoms and stopping the Enbrel sooner. My rheumy had totally downplayed the chance of any side-effects of the medication, so when symptoms started I kept on using it for a while. If I had stopped Enbrel immediately at the first sign of symptoms, I could have ended up with a much less nerve damage.

If you start Humira, just look for any adverse symptoms and be prepared to act immediately. That awareness can make all the difference. At the time, Enbrel saved me from debilitating pain.

Something to consider: if you are needing regular Tramadol and Prednisone to stay at that "not feeling that bad" point, then that to me would be good reason to take anti-TNFs. Prednisone has an enormously worse record for long term side effects, and I personally don't find that taking heavy duty painkillers like Tramadol is a good solution - take enough to really knock the pain and it also knocks my ability to function with a clear head. Tramadol and other pain killers also don't do anything to slow down or stop inflammation or the cause of the pain.

SAA?

Gbash-What were you're early symptom's. I have been on Humira for almost 3 month's now. It hasn't helped but I am having some problems and don't know if they Humira related.

Pea

Hi NewNormalCharity,

SAA = Spondylitis Association of America.

Hi Corey,

I can appreciate your hesitance to start on anti-TNF treatment when you are feeling relatively well and are terrified of adverse effects. While these meds are considered to have a good safety profile, the decision needs to be viewed in the context of your situation, the severity of your AS and any family history or personal risk factors that might predispose to developing any of the rare problems.

Things like, a young age at onset, male, hip involvement, early fusion, etc. may suggest more aggressive disease that warrants the best possible treatment and studies suggest that earlier treatment with biologics may be even more worthwhile. However, the longer terms risks are still unknown and feeling comfortable in your choices for treatment is really important.

You may want to further discuss your prognosis with your rheumy. If you delay starting Humira for a few weeks, it is not apt to make a big difference - arriving at a decision that you are comfortable with is more important, in my opinion.

Glad you have the diagnosis to at least be in the position of having treatment options.
All the best,
mig

Pea,

My first symptoms were tingling in my feet while on my runs (5K). The tingling got worse and lasted longer with each run over the next few weeks. I then started getting numbness with the tingling, which would take longer to go away and got worse with each run. The numbness and tingling progressed up my left leg and then my right leg. It then progressed though my groin area and then started in my face. I then started getting parethesias (funny sensations...like my toes were twisting around each other or having marbles in my shoes). With the groin numbness, I was fearful of cauda equina syndrome. My rheumy ruled that out, took me off Enbrel, and sent me to a neurologist. By this time, 6 weeks (and 6 more Enbrel shots) had gone by since the first tingling. If I had stopped Enbrel immediately at the first symptoms, I might have prevented much of the damage. The numbness, tingling, and parethesias continued to spread and get worse over the next few months before finally levelling out.

can understand your feelings.

only the doctor in philly mentioned biologics to me as something potentially down the road; hasn't come up with my current rheumy.

but just tonight, talking with my husband, am torn between:

if i do all the various things i do every day and avoid all the various things i avoid every day, and those lists are huge, i normally get by, except for when i flare, and then i just suck it up and get through it.

but, is that really any way to live?

and if i were on something like a biologic, could i save my hundreds of dollars every month on drugs, chiro twice a week, and save all my time with ice and heat, and actually sleep in a bed every night, and sit in a car and drive places, and sit in chairs at meetings and not have to pay the price and.........

and think about the phrase, "they gave me my life back" that i hear many on here and elsewhere say in regards to the biologics.

i know how pred made me feel when i was on that short term. if i could be on a drug that made me feel like that all the time, how awesome would that be!

but then i think about the rare but real side effects of the biologics and wonder......

is it better to continue with my very time consuming, very expensive, not very effective way that i am currently doing things instead?