I’m hoping to get everyone’s take on my current situation. I have been on Enbrel for about 6 weeks. Despite a couple bumps in the road, it seems to be working really well now.
Over the weekend, I figured out that the weirdness I was feeling in my little toe on my left foot and on a section of my mid-back was actually numbness. I think it’s been like this for about a week now and seems to be constant.
There’s no pain or tingling at all, just no feeling (although my back seems to be very itchy but I can’t really scratch it …which is annoying)
Anyway, I called my rheumy first thing this morning and he’s out all week, so they suggested I call my primary care doc. She can’t get me in at all, but I can see her nurse practitioner tomorrow, so I’m doing that.
But I’m wondering if this sounds familiar to anyone else…random and very specific numbness. Is this nerve damage? Is this caused by Enbrel? Is this caused by the PsA? Or is this something completely different?
Would love everyone’s thoughts on this - thanks much!!
I get that type of numbness that you describe, and I’ve had periods of time where I’m getting a lot of nerve activity, some of it making me a bit nutty. I would not think that it is related to the Enbrel, but rather related to inflammation. Unless it becomes extensive I would probably not be in a rush to be seen.
The only time that I rushed in for anything like this was when I initially developed neuropathy in my feet. That was bad.
I am not on Enbrel but I have had random, weird numbness that I have attributed to the PsA itself. My right forearm, a numbness that comes and goes. I too, have a strange numbness of my left, 5th toe. I would describe it as a thick feeling. I about fell off my chair when you described the same thing. I am currently on Methotrexate and it is debatable about how much it is helping. I think some, but just had a bad weekend so I think my opinion is not to high now.
Clearly most of them have come and gone, as I can’t remember them now. When I have major inflammation in my hands in feet in specific areas, that will cause numbness due to nerve impingement as well.
But I remember one day going out for a walk. When I felt the raindrop for the third time on the same exact spot on my forehead I realized that it wasn’t raining after all. It’s been flare ups of a sort, not medication related.
My feet have neuropathy, which causes pain in my feet. For that I take neurontin and the situation is much improved.
My husband (recently diagnosed, not on meds) has complained about similar stuff. He had all of the nerve testing and nothing showed up. Even had an MRI of his brain and there were no problems there.
I got numbness on a couple of my toes, though not while on Enbrel. It was during a flare, and when the flare subsided (took 2 months), so did the numbness.
At my absolute worst, my feet and lower legs started to go seriously numb (Lower spine involvement). Gave me quite a fright, so I loaded up on steroids and it was gone two days later.
I think the mods will remember this one–I’m not sure how I explained it when it happened 3 years ago, but about EXACTLY 6 weeks after I started Enbrel, my back went out…
the weird thing is, the day before it went out I had a very strange sensation (numbness/tingling) in my lower back and my legs were not feeling “right”…I remember my husband and I were walking into Sam’s Club and my legs were really weak and not normal. When I started Enbrel, the results were within days I felt 80% better, and my stiff, painful lower back was gone! So, the unusual weak “crushing” feeling in my lower back and legs was totally unexpected…my back went out the next day–and I mean unbearable pain. I can deal with pain, and I had had bulging discs before with “toothachy” pain through my hip and down my leg, but this was the WORST pain I ever had. I pretty much was out of commission for three weeks and took the highest dose of ibuprofen possible (3 or 4 at a time several times a day) and icing. That dose probably doesn’t sound like much to most people, but I don’t take mood altering drugs and my stomach can’t handle naproxen sodium, so the ibuprofen took the edge off for me.
So BEWARE and cautious, because you may have a damaged spine from the PsA. (I also have numbness in my toes and feet off and on.) I didn’t know how damaged my back was until that happened, even though I did have troubles for years while the PsA was active and had been through back therapy several different times.
Since that episode I’m very careful about lifting…I definitely don’t carry anything heavy, and I know right away when I lift too much–I get that tingling sensation in my lower back and my legs and feet get weak–I should say weaker, they’re always somewhat weak!
Take care, pepperdine!
It does seem to be getting a little bit less numb the last few days (meaning I can now scratch there and feel something at least), so I’m hopeful that it’s starting to fade. I have an appointment will my rheumy in the morning, so I’m hoping to get some answers from him.
But hearing everyone’s experiencing with this is always very helpful (and sometimes very scary).