Tag Archives: Remicade

Pain journal

I have a brand new symptom and I don’t like it one bit. I don’t know if its my psoriatic arthritis or a side effect of the remicade or mysterious new ailment.
It feels like some is stabbing me with a sword up through my shin bone. It started last week with shooting pains through my wrists but the pain is intensifying and over a larger area now. It’s enough to make me drop what I am doing and scream. But then I goes away, after a very long few minutes. And I am ok, except for all the other things causing me pain.

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No Remicade; Thanks Bronchitis

Remicade really works for me, and I take it every 6 weeks, and at about week 5 I start feeling the need for it.  However I can’t take remicade if I have had any sort of infection.  Remicade works by lowering the immune system, so I need to wait 3 weeks after the passing of any sort of infection before resuming the infusions.  Particularly dangerous is any sort of lung infection, TB and Bronchitis being the most worrisome. 

In winter I often get a chronic hacking cough do to Acid Reflux.  My cough started about 10 days ago when someone was smoking outside a building I was in, with open doors.  At first I assumed it was the smoke irritation, and then the acid reflux but with my infusion pending and my cough getting worse I not only started my acid reflux meds but also got myself into the doctors just as a precaution.  I am glad I did.  I have post-infectious bronchitis.  Luckily I am not contagious since I have been visiting another friend with a weak immune system lately.  So the good news I won’t be one of those people who die from a lung infection they can’t fight because of remicade.  The bad news is I can’t have my infusion and I have to take steroids.

I really hate steroids, I am already rather round and my six week dose of steroids to help me manage the remicade, keeps me nice and plump but nothing swells me up like a dose pack of prednisone.  On the other hand I really, really love breathing, so I will take the steroids.  Maybe the arthritis will get so bad while waiting another month or so for the Remicade that I won’t be able to dance, but I certainly can’t dance with coughing badly either.

Its just a temporary set back.  I can be grateful for that.  And I can be grateful I found out I had the bronchitis before I got the Remicade and wound up hospitalized with it.  And I can be grateful I have accesses to modern medicines like steroids and other icky stuff, because as much as I hate them, my life would not be better without them.

 

Turns out I probably will only have to wait a week. The doctor will see me next Friday morning and hopefully let me have the infusion same day.

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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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Remicade and Hair loss

I remember when I first started the Remicade, within my first two infusions I started losing my hair.  I told my doctor who thought it was probably something else, do to hair loss not being one of the listed side effects.  Then I started researching online and found that others had experienced hairloss and that hair loss up to 1/3 seemed to be the norm, and not rare at all.  More rare was more extreme hairloss, and in a case or two it seemed to cause total baldness. 

I am lucky, born with a huge think mane of hair, I had plenty to lose.  After the first few months my hair loss seemed to stop, but in the last couple of months I have lost a lot more.  I bet I have lost at least half my hair.  My hair dresser has noticed as well.  In my case my hair now lays smoother and dries hours quicker, so I can’t say I am suffering for it.  But I am concerned for those with less hair who might have the stress of hair loss now adding to their ills. 

Remicade is relatively new and there aren’t a huge group of people who have used it more than a few years so long term side effects aren’t even reported yet.  Don’t get me wrong if the hair loss continues I probably won’t give up Remicade as it really seems to make a difference in my health, pain and lifestyle.  Besides I can rock hats, they add a certain flair.  I did want to share this issue with others though who might be considering Remicade, or experiencing the hair loss.  Maybe if enough of us share our stories they will add it as a side effect. 

Time to go paint.  Losing some hair is worth the price of being able to use my hands to create!

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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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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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Remicade Side Effects

I am debating how frank to be in this blog.  My goal was to share everything, no matter how scary, embarrassing or how whiny I may sound, yet I tend to be rather private about my health.

Today I had a long six hour infusion.  I get an allergic reaction to Remicade of severe itching.  My eyeballs even itch.  As a precaution they give me a couple antihistamine meds before hand, and then again half way through when the itching starts up inspite of the premeds.  They would normally have stopped the Remicade because of it, but there aren’t many more options out there for me at this time and it seems to be working.  Today as another precaution they ran the infusion through a pump rather than a drip and stopped it a few times to add some bags of saline to thin it out.  Still over five hours later I am still itching, inspite of being maxed out on antihistamines. 

Lately I have been suffering for a deep depression, and I have been very hesitant to share it with any, as I don’t really want to talk about it, and find it embarrassing, as I feel week not to be able to control my emotions.  I have seen a doctor and she seems to think it has some relation to both real events happening in my life and perimenopause.  I thought tonight to see if it might be a side effect of the Remicade.  I didn’t find it, but I did find something else.

Under side effects listed by the makers of Remicade it said if you have night sweats or loss of appetite to call a doctor immediately.  I have had horrible night sweats the last few months, I mistakenly thought they were the same thing as hot flashes and attributed it to menopause but have since learned the difference. It can still of course be menopause.  I have also had an extreme loss of appetite.  If you know me you know I am a compulsive over eater and love food more than nearly any other pleasure.  I have had to force myself to eat, even my favorite foods.  Yesterday I was taken to a gourmet lunch and ate just a few bites, so I ordered my main guilty pleasure on the way home from a hike last night, Mc Donalds fries, and just ate a few before I felt full and uninterested.  I didn’t mind or worry much, as I am heavy enough to not mind losing a few dress sizes, but now that I see its a serious side effect of Remicade I am worried.  I also seem to have lumps under my arm pits.

I have an endoscope tomorrow that is also stressing me out, and on top of that the depression, and my Rheumatologist is out of town.  I guess if I feel up to it after the Endscope tomorrow I will call my primary care doctor as well. 

Has anyone else on Remicade had these symptoms?

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