Tag Archives: remicade infusion

Steroids

It turns out I have had steroids added to my IV for a few months now and I didn’t realize it until my last infusion. The thing I really hate about steroids is the weight gain and the puffiness. I haven’t gained much weight but at least now I know why I am not losing it either.
The steroids are helping to counteract the allergic reactions I have to Remicade, so I guess I am glad I have them. The remicade is definitely working so I am willing to take whatever else. I still get chest pain a bit too much for my comfort, but my legs are working well most days, and I am dancing for longer periods of time and with less pain.

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Feeling Blue

If you know anything about my pain scale you know feeling blue is about as good as it gets!! While I was in Florida I had a bad string of migraines but after they faded I have been on an upswing. I am without a doubt that the Remicade has changed my life for the better. I am still achy and limping for a couple hours in the morning and I still get occasional heart attack like chest pain and have rough days, but I am feeling better physically than I have in years. In early July I started Salsa dancing, and often just could manage part of the beginning lesson, but now I am taking several lessons a week and able to stay an hour or two for social dancing afterwards. I feel blessed with a new vitality. I am listening well to my body when it tells me to slow down and take a rest for an hour or two, and find that in return my days have many more hours in them and I can be more productive.
I just want to remind others with chronic illnesses to not give up. Keep trying things until something works for you. This blue period I am going through might not last forever but if it doesn’t it will serve to remind me to keep trying to live my life to the fullest and to find medical and health treatments that improve my life.

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Filed under Chronic Pain, Coping, exercising with illness, Infusions, Psoriatic Arthritis, Remicade

Rough Week

I had my Remicade infusion last Monday and they slowed it down to help prevent the allergic side effects I get and I was there for 6 hours after an hour and a half drive.  It’s not like I can do anything else on a Remicade day, but I find being under the IV stressful as it is, so it just prolonged the stress.

Tuesday I had and Edoscopy where they found abnormal cells in two places and have sent them off for biopsy.  Considering Esophageal Cancer is nearly always fatal I am not even going to worry about it until the results come back.  Even if they find Barrett’s Esophagus  that is considered pre-cancerous, and I am hoping beyond hope they come back with a “oh its just psoriasis on your esophagus”.  I also am going through a flare up o the inflammation around my heart and because of the edoscopy couldn’t even take my regular meds for it, so I just had to whine through the pain.

I am also losing my art gallery which is very dear to my heart and am going through some sort of OCD emotional breakdown and have been crying constantly, sometimes hysterically.  My roommate moved out a month early, after telling me its too much pressure to be my best friend, and who could blame him, I would wake him up in the middle of the night crying about silly things.  

Anyways I am looking forward to this week being a better one, it absolutely has to be.

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Daily Health Journal- Nov. 20th, 2012

Anyone who follows my blog knows I have been horrible lately with updating it.  Its been at least a week since I wrote my last post.

I had my Remicade infusion last week and the premeds didn’t bother me as much as usual.  I was only half as cranky afterwords and the next day I was getting around running errands rather than sleeping all day.

I have been feeling well enough to do some mild manual labor at the new gallery each day, running errands and such.  So busy I don’t stop until my body forces me to at about 7 pm at night.  I start slowly every day, sometimes not getting dressed and leaving the house until after 11.

Today my body hurts really bad, probably over doing it a bit, but so glad to have a little energy each day.

Too much to do today to sit and complain, so off I go!

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Filed under Chronic Pain, Infusions, premeds, Psoriatic Arthritis, Remicade

Remicade dosing

I had a doctors appointment Monday and the doctor recommended that we move the Remicade to every 6 weeks instead of every 8 weeks.  Its a hassle because not only do I have to sit there for hours, but its hours away.  Plus I fall asleep for about 24 hours after, and am rather out of it in a druggy haze for a couple of days.  The worst part is since the premeds knock me out so hard there is no way I can drive myself.  So I need to ask someone else to spend an entire day driving me around, and waiting for hours at the local Starbucks.

But if I am going to go through the hassle and side effects of this medication, I certainly want it to work.  So I agreed with minimum complaining.  I did feel so good after the last Remicade infusion, and the more often I have it, the more likely I am to have days like that.

I have pretty good insurance, but my doctor says the reason I have to drive all the way to Redlands is because no place closer to me will take Regal Health Care.  His Corona office IS a cancer center and does chemotherapy off all sorts but Regal doesn’t pay them enough for them to accept it.  I guess I am lucky there is someplace I can get the medication, and with a reasonable co-pay.  If I had no insurance I can’t imagine the pain I would be in daily.

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Filed under Daily Journal, exercising with illness, Pain, Psoriatic Arthritis, 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

Daily Health Journal- Oct. 18

This morning I went to the doctors to get the staples out after my gallbladder surgery.  My hips hurt from arthritis enough that I was limping, but I was able to sweep the downstairs before having a PTA member come over to do some paperwork.

By 3 pm I was laying down and am tired but not feeling horrible.  Every day I get out of bed and dressed is better than doing neither of those things.

I find it interesting that my arthritis didn’t bother me in the hospital or the first week after the infusion or most of my recovery very much.  Maybe it works better right after the infusion then fades as time goes by.  Hope this is a good sign for the Remicade.  And I am so lucky, made it through surgery, and recover with no infections!

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Filed under Psoriatic Arthritis, Remicade, surgery