Tag Archives: infusion

Remicade Reactions

Well the great news is Remicade seems to be working for me.  I am working my part time teaching job, and also running the gallery, which occasionally requires that I am moving earlier than my body wants me to, and up later than I normally would be.  To be fair they aren’t on my feet 8 hour a day jobs.  The teaching job is hectic and crazy but so much fun, and I can manage it because I never work more than three hour stretches, and I am hit with severe fatigue and often pain right after, I go right home to bed afterwards.  At the gallery if I am feeling bad then the worst part is driving there, then I can sit in a chair and work on some project, cuddled close to the heater.  If its brutal cold I just can’t manage there at all though.  Before the remicade my days were less productive and my pain was much more often at unbearable levels.  My energy is up, although I still feel like a big of a slow moving but determined slug.  I can tell when its getting close to Remicade time.  My body starts hurting more, and my migraines get very intense.

The bad news is my allergic reaction to Remicade that they have been managing with the pre-meds.  If I don’t have premeds half way through the infusion I get a severe itch.  Not just a normal itch.  The kind of itch where you can’t think of anything but the itch.  Where ever part of your body itches.  Even things like eyes, and inside parts.  6 weeks ago I got the premeds but woke later in the day with more itching.  I just took over the counter antihistamines and the itch didn’t go away but it became bearable.  This last infusion I got my premeds, and fell immediately asleep.  I woke two hours later with a mean case of itches, my arm also had a huge hot pink rash, at the injection site that went from wrist to elbow, they quickly took my temperature and realized I had one.  They gave me another dose of the anti allergy cocktail and told me that I was maxed out.  They slowed down the infusion and waited for most of the symptoms to subside and sent me home.  At about midnight I woke up with the horrible itches.  The question is can I stand the itches?  Possibly.  But also the side effects seem to be escalating.  Its two days later, and all that there is left is a mild, irritating itch, but I can handle this.  My doctor did offer steroids.  It was unclear from the phone message if it was meant for just this time or for every time after the Remicade.  I haven’t called back because I really don’t want steroids.  Every time I take them I put on 15 lbs and that weight never seems to go away but just add up.  I can’t do that every six weeks or I will be dead soon. My body already feels huge and sluggish for me, and I just don’t have the energy for even mild exercise at this point with all the rest I am doing.

I am going to attempt to go to work today.  I have a very busy week this week, the gallery is open, there is an exhibit I must be a good neighbor and attend, there is a small, I want to take care of a friend in mourning, and I have my kids classes to prepare for.  I have a class in San Marcos starting next week.  I am a bit nervous as it starts about the time I go to bed, its a longer drive than I am used to making lately, and I will probably be in a lot of pain before the class even starts for the day.  If I had less going on this week or more energy lately I would feel better about it.  The good news that I have to remember is that no matter how bad I feel, I always seem to be able to pull it together for a few hours for the kids.  The work is so rewarding that it doesn’t matter how badly I feel beat up after.  Its awesome.  So pain..yep..but not as bad…energy…yes..just enough to do what I have to do…and the life…well life is awesome…life is worth living, every day.

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Filed under Chronic Pain, Infusions, Migraines, Remicade

Daily Health Journal- Oct. 31

Well I won’t be able to call this a daily health journal if I don’t start writing in it more.  Just by the time I get done with running my errands and taking care of my responsibilities I go to lay down and once I lay down for the evening I don’t move again until morning.

It’s 3 am and I am up with acid reflux.  I don’t know how someone with acid reflux as bad is mine forgets they can’t eat pizza, but I ate it.  I suppose its better than being up with a migraine or other pain.

Monday I had Steve Ito work on my shoulder again and it hasn’t bothered me since.  He also worked on my migraines again and my morning migraine wasn’t  there when I woke on Tuesday.

I also saw Dr. Le about the Remicade and Psoriatic Arthritis on Monday.  I was hesitant to have the Remicade every 6 weeks instead of 8 but the pain does come rushing back after just a couple of weeks and I want to get the most benefit I can from the Remicade so I am following his advice and getting the infusions every 6 weeks instead of 8.  Its a hassle since I can’t drive myself and its so far away.  It means someone’s whole day is taken just driving me there and back and waiting for me while I have the infusion. Dr. Le told me about a law called the Family Leave Act, where an employer must give a family member time off to get necessary care.  My husband does get family medical leave but its really good to know about this law and I am sure it can help others if I don’t need it.  Basically a doctor would just need to fill out forms that any HR department would have.  Still I know I am out of service for a couple of days after the Remicade, and that I am asking someone else to take a whole day for me, made me hesitant about agreeing to the more frequent infusion.  But it really does seem to be working, and I so much want to live a normal pain free life.

I have read that the Remicade is a chemotherapy, and I know its not as brutal as cancer chemo, but it was still a little shock to see it in writing on some paperwork the office gave me.  I guess if it works they can call it whatever they like.

Some wonderful news is a friend is going to be sharing a little art studio/gallery space with me.  It’s going to be something that will work around my illness, we will but a heater in, and a sofa with lots of little throw blankets so I can be comfortable when there.  It will also have tons of flexibility so I won’t need to go in at all on bad days.

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Filed under Chronic Pain, Daily Journal, exhuastion, Infusions, Migraines, Psoriatic Arthritis, Remicade

Surgery and Remicade

The rule is if you need surgery you need to plan it at least 6 weeks after your last Remicade injection.  The reasons being remicade compromises the immune system, and surgery not only leaves someone vulnerable to infection, but also can leave the body weakened and unable to fight infection as well.

The problem I had was that I not only had a gallbladder full of gallstones, which may have been able to wait the 5 more weeks for surgery, but that it was infected.  Once all my doctors realized the gallbladder was infected it they were very quickly on the same page that it needed to be removed immediately.  The infection I already had was more dangerous than a hypothetical one I could possibly get.

The great thing is that when the removed the gallbladder they removed all the infection.  Blood test showed that they got it before it entered any other part of my body.  I feel really fortunate.  I am so glad I listened to my body and went into the emergency room.  A gallbladder full of stones is painful as heck but an infected organ in someone with a compromised immune system can be life threatening.

After care is a bit of an issue but nothing that can’t be handled.  I was given a private room in the hospital to limit my contact with other people.  My husband spent my day in the hospital vacuuming my room and scrubbing my bathroom, making sure I had clean sheets, etc.

I need to limit my company, which is very hard because I love people and company and I also hate to tell people they can’t see me.  My grandmother seemed hurt when I suggested she didn’t need to come to the hospital and bring my dad and his girlfriend.  I dearly wanted to see her, and found it easy just to risk it and let her come.  My family I need of course and they are taking precautions like showering as soon as they get home and washing their hands and using antibacterial gel when they come into my room.  I am restricted to my room because I am not a great housekeeper in the first place and it will be much easier to ask my family to keep my room sterile than the whole house.

If someone really wants to visit me I need to make sure they haven’t been ill, or around anyone who is ill and that they wear a face mask while they are visiting.  I feel like I am being a little paranoid and maybe I am, but if I get sick my body won’t be able to fight it like it would normally.

I woke last night thinking I was silly, and that I should just act normal. My energy level is ok and I actually feel decent with the pain meds.  But I woke and spoke with a family member and realize I am doing the best thing for my body, and the people who love me.  I am going to try not to worry about people thinking I am being silly or paranoid, not even when that person is me.  I am just going to allow myself to be a little extra high maintenance for the next week or two.

My doctor said he normally sends people back to work in a week or two.

I am going to keep this limited exposure at least until I see the surgeon for a follow up next week. Maybe a less limited expose for the week after,and I plan on going back to work in two weeks.

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Filed under Remicade, surgery

Daily Health Journal- October 2, 2012

I woke with a migraine, which is an extra bummer because now it will be harder to tell if today’s infusion gives me a migraine.  I have an appointment with my doctor before the remicade

Things I need to remember to communicate with my doctor-

Migraines and if I can take migraine meds before the Remicade

Chemical scent directly after meds

Extreme exhaustion in the days after infusion

Crankiness after infusion

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Filed under communication, Daily Journal, exhuastion, Health, Infusions, Migraines, Remicade

Daily Health Journal-9/30

I was able to help my grandmother three days in a row.  I have found if I am not in too much pain three cups of coffee spread through the day will give me just enough energy.  Its a temporary solution I know.  The coffee and caffiene will wreck havok on my acid reflux, cause a chronic cough, and exasperate my slipping rib syndrome.

My ribs were bothering me yesterday but not as severely as the day prior.  I woke with a migraine today but I had gone a whole week without one, so I would feel ungrateful to complain.  My psoriatic arthritis pain hasn’t been bad at all, so I am hopeful that the Remicade is working.  The nurse did say some people see results in as little as six weeks and thats where I am.  So far I haven’t noticed any side effects, such as hair loss or infection; only rather extreme fatigue for a few days after the injection.

Took some off brand migraine asprin as excedrine migraine is still off the market.  Hopefully it will also take the edge off of the rib pain.

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Filed under Chronic Pain, Daily Journal, exhuastion, Health, Infusions, Migraines, PsA, Psoriatic Arthritis, Remicade, slipping rib syndrome

Remicade Infusion #2

Yesterday I had my second Remicade Infusion.  They also gave me Phenergan and Benadryl to contract the itching reaction I get from the Remicade.

I arrived with a migraine, several days long of varying degrees at this point and it got worse as I sat there.  They gave me the Phenergan and Beadryl about halfway through again and I passed out.  They had to wake me when the treatment was over and I stayed groggy and cranky for hours.  I also felt irrationally persecuted and victimized all day long, which is nothing like me at all.  I looked up Phenergan and saw that does cause irrational moods, so I am blaming that.  But it could also just be too many days with too much pain.

I also awoke at about 2 am with the same strong smell I had the day after Remicade last infusion.  I got up and washed and within 15 minutes I could smell it again.  I can’t seem to find anything on smell being a side effect for any of the medications they give me.  I would love to hear from anyone else who has this side effect.

 

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Filed under Chronic Pain, Health, Infusions, Migraines, Psoriatic Arthritis, Remicade

Daily Health Journal- Day 12

Yesterday was an interesting day for me.  I was mostly Orange on my pain scale all day, but I decided to push through with my plans.  I went to see my grandmother in the morning, and then went up to Idylwild to meet with a gallery owner.  I couldn’t have made even a portion of the trek myself.  My pain would spike to levels that made it unsafe to drive.  I relaxed in the shade of boulders midday and did some  simple paintings.  I was home by 6 and went straight to bed unable to move. My husband took care of dinner. It was just such a good reminder that with a little help I can have a rewarding and even beautiful life in spite oh high pain levels.

Today I have my Remicade infusion and am glad I have a ride there today, as it is almost an hour and a half drive each way.  I hope to feel well enough to get my ribs put back into place today, because that would remove so much of my pain.  5th day on my migraine but its tolerable.

I have a huge week next week with the PTA.  I have no less than three PTA meetings next week, book fair, Open House, and the Back to School Dance.  Luckily I have a great team, but I still have to run the meetings and do my fair shifts on the book fair and dance.  All that on top of work.  At least its nearly week after from Remicade so the exhaustion from the meds should be worn off I expect.

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Filed under Chronic Pain, Coping, Daily Journal, exhuastion, Health, Migraines, Pain, Psoriatic Arthritis, Remicade, slipping rib syndrome, soul