Weight Gain and Biologics/ MXT

General
1

Hi Folks,

After doing some anecdotal discussions with people sitting nearby during Remicade infusions, I discovered that everyone who is on Remicade, that I talked with, has issues with weight gain. And the weight seems nearly impossible to shake. Most reported 20-25 pound gain in six months. I have had this same experience.

Anyone else? How do you deal with this? I have always struggled with weight, but the additional 25 pounds is making me depressed and discouraged. Much of the weight seems concentrated in my calves, neck, and upper arms.

Also, I have been on Humira, Embrel, Cimzia, and now Remicade infusions. Having a great deal of trouble walking. Feet and ankles and calves very swollen. The tendon on my right ankle is swollen and protrudes about an inch out from my ankle most of the time. Walking long distances aggravates it. Any suggestions to ease this? My rhumie is sending me to an orthopaedic ankle specialist to look at it further.

Doc is putting me on methothextrate now, in addition to the Remicade. Folic acid too. I was on MXT about three years ago for a few weeks. It completely zombied me out, to the point where I would just sit and not have the energy to even get up at times. I went off it because of that. Going back on it is scaring me. Any advice or suggestions?

I am especially frustrated by inability to walk, as I used to. Did a two mile hike around a lake last week and thought I was going to collapse. The tendon issue in my ankle makes walking very painful. Again, any suggestions?

How do I deal with this "New Normal" state of being? Or should I be expecting more from the meds I am on? My doc is referring me to Cleveland Clinic to get a more comprehensive picture of my health. Has anyone gone that route?

Big thanks to you!

Namaste,

Marianne

2

I’ll be interested in what you learn about your ankles. They were my first tendon issues. Methotrexate does help me with the peripheral symptoms. I’m just planning to switch from Enbrel to Cimzia.

3

I have put on about 15 pounds so far. I went up two sizes as well. It is very depressing. I am on mtx,was enbrel now I am switching to humira, and gabapentin. I can not walk much at all either or exercise much as both feet have plantars fascitis and osteoarthritis. I do go to an orthopedic foot specialist next month and hope Humira will help me get back up and around.

4

Hi Marianne,

there certainly are a lot of people on the internet who take Remicade saying the same thing. And I found one research study backing up the connection between Remicade and weight gain, the link is on 'RA Warrior'.

One thing that occurs to me is that a 2 mile hike is quite a big ask in the circumstances and it's quite an achievement. So do you do shorter walks at all? Half a mile or even less every day, or every other day, might actually soothe your ankle tendons & help with weight. I'd opt for little and often ..... just shout at me if this is what you're doing!

I hope you get some answers from the Cleveland Clinic.

5

Hi Marianne

With regard to the mtx and tiredness I would try to be patient. When I started it I was zonked for probably 3 days a week and had chronic headaches every day. These symptoms did ease gradually over a few months and now I only have 1 day when I feel a bit more tired (but manageable) and no headaches at all.