Today I get my remicade infusion. I am at the doctors now and I will be here the next 4-7 hours. I have an allergic reaction to the remicade so they pump me full of antihistamines and steroids.
I also had to take steroids for bronchitis last week and I feel swollen up like a puffy balloon.
The pain that mimics a heart attack started 3 days ago, so my body is ready for the infusion. I just wish I could get it without steroids. I would rather be fat with less pain than less fat with more pain. (Thin is something I don’t even worry about, not going to happen).
In a few days I will be back to hiking and Dancing that’s to Remicade and these nurses here taking care of me.
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!
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.
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.
After meeting with my doctor last week I learned that there is one other injection that I can take but it isn’t as strong or have the success rate that Remicade has. However the doctor mentioned that some medications work better than others for certain people and you don’t know for certain until you try it. I mentioned I don’t like the idea of taking steroids on a regular basis. He increased the anti histamine drugs in my premed and suggested I take a otc allergy med daily for a week and then as needed. I went home and to bed and slept for about 24 hours I think. I didn’t wind up taking the daily allergy med as this time it didn’t get any worse than a mild itch. He did say the itching that occurred even a month later was due to the medication in my system still. The itch seems to act up when I just wear myself out and I hadn’t been sleeping well at the time.
My migraines haven’t seemed as often or severe, but of course I happen to have one today. I guess I am lucky, I don’t have to work today.
I am glad I don’t have to give up the Remicade at this point. It really seems to be helping me live a full functional life with only a moderate amount of pain for most the day.
Other health news is my primary doctor has put me back on daily Prilosec saying that the depletion of calcium is much less dangerous than esophageal cancer, which is a danger with long term chronic acid reflux.
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.
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!