Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Bioligic and Feet

I know I have asked about feet before, but for those of you that have had problems with you feet. Did going on a biologic help? I never had a problem with my feet until I went on a biologic. It was just in my left foot now, its in my right. I am almost positive that this is a sideeffect of the med for me. I have developed carpal tunnel and terrible tennis elbow, as well as tinnitus. I am wondering should I try I diff. biologic. I was hoping over time it would go away, the severity does seem to come and go. I can sure tell the diff. it I dont get a good nights sleep. I have always been and very anal, type A, control freak. this is driving me crazy, and I feel helpless. The doctors dont seem to know squat either. when I came back to see my Rheumy after the first round of enbrel, I could tell by looking in her eyes, she had know idea what was going on. She expected me to come back and be fixed.

Hi There

I am sorry your having pain in your feet. I was having a terrible time with my ankles and finally I realized when I take my insulin in the evening about 45 mins later the throbbing pain would start. Go with your gut and stop the biologic and see what happens in about a week or so. My joint pain stopped after decreasing the insulin in two days. Doctors are so poorly trained to deal with side effects.

Janet

Hi Bax

Sorry you are having trouble with your feet. I have terrible pain in my feet and ankles. I am on Enbrel and a host of other meds. Which biologic are you on? Does your biologic give you any positive effects? I have complained about my feet for years now and never get a straight answer. I have wondered if my foot pain is the progression of the disease that my biologic just isn't doing enough for. I have an appointment next month with my Rhuemy, will let you know if I get any new info.

I use hot baths, Voltaren topical ointment and heated booties to try to relieve the pain. Hope you find out what is going on soon.

Take Care Bax

I am on Enbrel, I started it in Nov of this yr. I have had back spasams and stiffness since 1988. it all started when I injured my back in a compression type injury. the pain for 23 yrs remained in my upper back and neck. I sustained another injury a couple of yrs ago, starting about L1. I started having similar type of stiffness from there down to about the belt line, at that point. I always kind of thought it was something to do with nerves. My General practitioners gave me naproxen, ibuporfen, Vioxx(worked great untill taken off market). around last march, I started losing range of motion in my neck and the stiffness in my back got much worse, it hit another gear. For yrs the ibuprofen would keep things at bay, it just quit working. I Started reading and telling my GP what I wanted done. Its amazing with the constant pain and stiffness that these schmucks had never checked my CRP OR SED rates. they were 14 and 43 respectively. I finally seen a rheumy. she took x-rays and blood work, found inflammation in the SI area( at this point I have never had any pain below the belt line). She said I had a seronegative spondylarthropathy(spelling??) she started me on Enbrel.

I started the enbrel in Nov. Within 2 weeks, the longtime inflammatory back pain, which had gotten so bad I couldnt sleep more than 4 hrs/ night. I have aged bigtime because this had gone on so long. It was all but gone, my sedrate dropped from 43 to 5, the crp from 14-.6. Now the bad at 2 weeks I developed tinnitus, my ears ring constantly, carpal tunnel, the severtiy of this has subsided but it is still with me. Also planter fascitis in my left foot. At 4 weeks I developed fatigue like I had never experienced, it was like I had been awake for 3-4 days straight all of the time. I could barely remember my name. I was completely worthless at this point. I continued to take the enbrel thinking that I would adjust. at 5 weeks I developed SI weakness and tenderness, elbow pain, wrist pain, knee pain, ankle pain and toe pain. The severity continued to get worse with each shot. My ankles burned like they had been injected with hot oil. My elbows were so sore i could not extend my arms and my grip strenth had diminished greatly. My Rheumy I could tell, had no clue what was going on. She wanted me to discontinue the enbrel for a period of time to see if the symptoms went away, then restart it to see if they come back. I quit if for 6 weeks, some of these symptoms went away, those that didnt, the severity dissipated. I resumed the enbrel a month ago. Most of these symptoms havent worsened since resuming, with the exception of the feet, its now in my right foot. I am wondering if I should try a different biologic. I cant say I want to go back to that back pain I had, it had driven me to drinking heavily before bed time, just to try to sleep. I am no longer doing that. I have lots of anxiety, had to start xanax to sleep. Sorry so long winded, as you know, there is no easy explanation of any of this stuff. These docs have no idea what we go thru.

You got relief from the back pain on Enbrel, but you got a whole load of other not so good stuff happening. Yes, I'd say it would be worth asking about a different biologic.

My feet were my first symptoms when the spondy started getting with it back in '99. Twenty years previous, I had an episode of low back pain with no obvious trigger--lasted about 6 months and went away. It was blamed on plantar fasciitis and treated, but both feet ended up getting the PF release surgery. Once I made to a rheumy a few years after the last surgery, treatment was started for 'inflammatory arthritis' with a lean towards 'spondy'. Once I made it to starting a biologic that worked (another couple of years), the foot pain got somewhat better. Currently, on Cimzia (5th biologic) for PsA, foot pain is largely gone unless I have a work night that leaves me unable to sit for a rest during the shift. Pains in arches, pains in heels, some pain in Achilles, and pain in metatarsal heads (ball of foot)--bilaterally.

So, yes, foot pain got better on a biologic that worked. I only had foot pain persist on Remicade, but it didn't do any good for me anyway.

If you've had improvement on your biologic in other ways but foot pain got worse, might see a doc about that to make sure there isn't some injury...like a stress fracture? However, it sounds like you've only had what you are calling side-effects. This one may not be the one for you. If it's less than 6 months (the usual trial period barring major side-effects), might keep going to see if it gets better, or bail to something else. Or could these symptoms have been brewing for a time anyway and are flaring up before the biologic had a chance to start working? Sort of up to you and the rheumy. In any case, good luck. Gentle hugs.

My foot pain has gotten a lot better on Humira. I can now stand if I want to; before I really couldn't for any period of time.

I've been on drugs (NSAIDs, a statin) that have caused edema (fluid retention) but it was non-pitting edema, so hard to see. But it caused a lot of the things you are describing. I had what is called "pulsating tinnititis" where I could hear my heartbeat in my ears. The edema also caused my tendinitises to be worse back when I had those problems. The Humira and LDN have helped my tendon issues a lot.

Could the biologic or some other drug you are on be causing edema? Its effects can be subtle.

On way to tell if its edema causing the foot pain or making the foot pain worse is to buy some compression stockings / socks. If they help, its edema. My podiatrist suggested that to me and she was right.

Has anyone been put back on Humira for foot pain? And what were the reults?

I no longer have cartilage in my feet, metatarsal and in step. Every step I take, I see stars.

Somehow it all disappeared over the last 20 years while we were trying to find out what was wrong with me and why my feet hurt.

I've been off Humira for 2 years and its been good other than the foot issue. Been more active, dropped 60 lbs and able to cope. Did a juicing 90 day regimen two summers ago and felt super. This winter however, I've never been so hungry and stressed.

Rheumy suggested I restart Humira since a prednisone blast in Feb helped the foot pain. He thinks the Humira will stop it worsening.

I have pain in both feet, right knee and both hands (osteo in hands).

And lately lots of work related and home stress - talk about brain fog.

I could not take the pain and went back to the foot specialist yesteray. I had both feet injected again. This makes 4 times ever, with the last injection 2 years ago.
I hope i made the right choice. The left being slightly worse, it toook 3 injections, while the rright took 2. They still hurt despite the injections and me trying to stay off of them.

I was hoping I could compare notes with others who have like issues.

As I stated above, Humira has helped my feet immensely.

Yes, mine were really bad before, now a lot better.