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.
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?
I have to write about my pain right in the heat of it, or I will forget about it when I am feeling good and never bother writing about it. Last night I had severe chest and jaw pain, which had been getting progressively worse for a few days. I took one aleve, than another a couple hours later but the pain stayed with me on and off until I went to bed. I had a rough nights sleep. My whole body seemed thrown suddenly from feeling really good into complete flare up. My flesh is so tender that the pressure of the mattress and the weight of the blanket was more than uncomfortable but so painful I couldn’t stay asleep for too long. I know this kind of pain can be greatly relieved by regular massage, and luckily I scheduled a visit to Massage Envy this morning.
On top of that pain I had a migraine. I need to start paying attention to see if I regularly get migraines after Aleve, although I am not sure I can stop taking Aleve for the chest pain if I do. I couldn’t find a quiet place to sleep in the house and someone’s computer was set to ping in a high pitch every time they got an email.
Maybe there is another reason I don’t blog about my pain very often, I feel like I just spent the last 10 minutes whining, when truly I am very fortunate. The Remicade seems to be working great, at least for about four weeks, and my home and career circumstances offer some flexibility and understanding with my health issues. But this is a blog I started specifically to deal with my health, help myself understand it and see patterns in it, and help others who may be going through similar struggles, so I can’t just avoid blogging on bad days. Plus is I don’t complain to everyone here (and allow everyone the option of ignoring it) I would probably whine the ear off of someone close to me who has already heard enough, so this is a safe place to vent.
Today I will try not to focus on my limitations, and try not to worry about the yoga classes and hikes I wanted to do but probably won’t be able to, and try to be gentle with myself and rest. Life is good, life is still good. The pain is like the tide, it will go out again too.