methotrexate, remicade and me

[Guest guest]

I have been on Remicade and methotrexate pretty much for three years.

After I started and got alot of relief I had to have surgery for Crohn's disease

and had to stop any treatments before and after surgery which ended up not

taking anything for over two months.

When I restarted it didn't work as well as before. Also my liver values started

going up and my rheumy felt it was the oral methotrexate. I have to take both

Remicade and mx because I also take them both for the Crohn's disease. Can't

take just Remicade for my RA, osteo, spondylitis, etc.

I finally was put on the injectable mx about a year ago. I never got nauseated from

the oral...just the liver values caused the change.

Then about four months ago, I got what they thought was cellulitis/lymphitis in my right foot.

Got a red streak going up my leg. I was put in the hospital and they put me on IV antibiotics

for two days. Then at home on oral antibiotics.

Couldn't be on Remicade or Mx while this was happening. Well, it has taken over three months

and lots of tests, antibiotics, MRI for possible bone infection to find out that nothing shows up

in my bone or foot. Just inflamed tissue. My rheumy thinks that it is one way my body shows

flareup.

But, after being off the Remicade and Mx for three months, I realized how much they both were

really helping me. I started having diarrhea all the time and pain from my Crohn's and every joint

in my body was in extreme pain. My fibromyalgia points all started hurting again and even my spondylitis pains were back. Although I still hurt from my RA while on the two drugs, all the other

problems were kept in remission. But now they were ALL flaring up.

I was scheduled to restart the Remicade and MX in two weeks. But on Weds I was in so much pain

I did nothing but cry. I called my rheumy and they got me in that day, started the Remicade and are starting me over as a newbie...2 weeks, 4 weeks and then 6 weeks.

The next day all of the fibro and ankylosing spondylitis pains were gone. I couldn't believe how fast

the Remicade worked. Even my RA swelling has gone down quite a bit in my hands and toes since then.

I still have to give myself my starting mx shot tomorrow. I found out I was doing it wrong before.

I was sticking the needle straight down into my stomach and they told me I should be doing it at

a 45 degree angle sideways under the skin. No wonder it hurt so much and bruised. LOL

As to memory problems and fog, yes I have had it and do quite a bit. My memory has gotten very bad

about somethings and it bothers me. I made the decision to not drive anymore because I just don't feel

safe.Can't turn my head to see things and I am tired all the time.

I do sleep alot and after Remicade treatments the next day I was always wiped out. Same after Mx

injections. So two days a week were shot and the others not much better. I have good days sometimes. I make myself go out or I would become a recluse. My husband does most of the cleaning, etc. when he is off work. I feel guilty so much and when I do try to do something like mop the floor or vacuum, it just wears me out for hours afterwards.

I have also noticed that my vision has gotten worse and I need to go have my eyes checked again. Can't read as well as I could. I never used to be a nap person but now I want to sleep all I can.

But I won't let myself because I don't want to sleep my life away.

I did get Disability last month, on my first try. I was so surprised as everyone had told me that the odds

of getting it were slim the first time. I even got a check going back to when I had to quit work and that was a HUGE surprise. It showed up in the bank account before I even knew I was approved.

Scared my husband to death as he thought someone had made a big mistake. But it was mine.

I am 53 years old and have had ankylosing spondylitis since I was 16 but they didn't know what it was back then so I just suffered with a bad hip and back. My Crohn's showed up when I was 30 right after my Dad died. I think the stress of that brought it on. Right after my Mom died three years ago is when my RA showed up. Supports my theory of stress. It is weird though...I have four brothers and none of them have any health issues. I am the only girl and I was the only one breasfed which I think had alot to do with it. All my diseases are in my Mom's side of the family and I think they were passed on to me

that way. Who really knows but it's the only way I can accept all of this.

My only child is 33 and he also has ankylosing spondylitis but I didn't breastfeed him so that probably shoots that theory down. He had to leave the Army due to it showing up from all the physical work and exercize.

Anyways, that's my story. I have been lurking pretty much but when I read about people switching to the inj mx from oral I thought I should write that there are other reasons to do it besides nausea, which I know can be awful.

Hugs to all,

Lathrop

Amboy, WA