Hi, I'm new to the forum and was diagnosed with PsA at the beginning of this year. My rheumatologist put me on bi-weekly Humira a couple of months ago and it feels like its beginning to work - at least for the first week after the injection. I actually have a couple of questions:
I've lost about 20lbs this year- unintentionally and was already very slim- people are now commenting how skinny and underweight I look. (Not sure why folks always feel they can comment on other people's weight loss/gain - but that's a different post!!) I try to eat decently but I can't seem to gain any weight at all. Is this a result of the PsA, Humira or maybe unrelated and just from stress?
Has anyone gone from biweekly to weekly Humira shots? I'm at month 3 right now so don't know if I should give it more time to take effect or ask the dr to up the dosage.
Thanks for any advice you can give. I'm feeling really overwhelmed by this disease and how much its changing/changed my life. Knowing that there are others out there dealing with the same thing really helps!!
I'm confused are you getting Humira shots twice a week? Humira didn't work for me but my doc never changed the dose. I've gained some weight and yes, it's amazing how people comment on my weight ! I can't believe it.
Taking shots every other week. Did you find something else that worked for you??
Frances said:
I'm confused are you getting Humira shots twice a week? Humira didn't work for me but my doc never changed the dose. I've gained some weight and yes, it's amazing how people comment on my weight ! I can't believe it.
I have lost close to 30 pounds in the last year. It was completely unintentional. Initially, I had a lot of pain and it was hard to motivate myself to make food. Once I started feeling better, I slowly started to gain. Then I made a conscious effort to follow the diet my GI recommended, and I was able to get back to an appropriate weight on purpose.
It could be that you’re not actually eating as much as you think you are. That’s what happened to me.
I am sure you checked with your regular Dr., Rheumatoloigist are so focused on their own thing
I think that sometimes mine thinks I will just know I need to see my GP. I don't, and I barely have time to deal with all my appointments.
If not you really should. Unintentional weight loss can mean many things to your Dr., It's on every intake form.
Not to scare you, but some of the worst things are uncontrolled high blood sugar and cancer. That's just the ones I know
I would check if you haven't, specifically about this. I have noticed that we have so many problems, a lot of times my Drs only get to some of them on a visit. So keep ithe appointment just to the symptom, and let him check that weight loss out.
I have a friend who ignored this symptom and just this week is having to decide what kind of dialysis he prefers, because it was high blood sugar and it ruined his kidneys. Another friend of mine contracted Type 1 as an adult, for no apparent cause but a recent infection. Which is how my Psa started with an infection and then bam full Psa
Hi, Rachel
One of the things I noticed when I went on Enbrel was a sudden (and welcome) reduction in appetite. Most noticeable was losing my cravings for carbohydrates and sweets. I slowly lost weight in the spring, only a few pounds, but I liked the effect it seemed to have on me. This summer, I’ve been off/on/off Enbrel because of a recurring infected ingrown toenail. Sure enough, when I’m off Enbrel, my appetite turns on. Like Grumpy says, you might just be eating a little less without realizing it. Run it by your doc, though, next time you’rre there.
I've been on and off biologics for the past 11 yrs, and non of them affected my appetite...until now. I started Cimzia in July and my appetite dropped off 70%. Which is fine, I put on weight in the past 10 years (some of the other biologics made me hungrier...no I wasn't on Pred.) The weight loss is slow and totally related to eating less. I shared this because I didn't think biologics had any relation to weight...dr.'s always deny it... and then it happened to me with Cimzia.
Some people with RA have trouble with weight loss and inability to gain weight (wasting). I know Kelly from RAWarrior.com struggles with this. Sorry I do not have many helpful things to say. Best wishes.
My doc had a fit when he saw how much weight I had lost. So he scared the bejesus out of me, ran a ton of labs (all normal, except low blood glucose), and referred me to a hematologist/ oncologist (never went). Once I found that the labs were fine, I decided that he was being overly cautious. I knew what my problem was, but it felt better to have the lab work to back it up. Since I continue to have labs drawn every six weeks, I know that there hasn’t been any change from the first set with the exception of my blood glucose being in a normal range.
Don’t panic. Let your primary know you are concerned and get your bloodwork done. If its normal, then maybe you really aren’t eating as much as you thought. There are a host of nasty things that can cause weight loss. Thankfully, they aren’t very common.
I have found my weight has gone both up and down, similar to what other people on here are reporting. My interpretation of it has been a little different. I have been on 4 biologics but Enbrel twice for a year each time. I gained weight a couple of times when I was eating the same amount but getting less exercise because of joint pain. There have been times where I have lost weight. At those times I have been eating less as I did not feel well, lots of chills, and flu like symptoms and no appetite. When I would then change to another biologic and my PsA came under better control both my appetite and exercise tolerance came up again. So I think it is more in relation to PsA not the medication except as how well it is treating the Psa. I have nothing to base this on, it is just how I have experienced. During the times my appetite has been low I made a concerted effort to make every mouth full as nutritious as possible. But be sure to mention it to your physician. He/she can easily add labs to your next draw to discern it's cause. Good luck with this. I will keep you in my thoughts.
