Actemra, Methotrexate and an Update

I haven't updated this blog in way too long.  I apologize for that.  I've had so many things going on in my life, both good and bad, I got caught up with things.  I figured it was about time to update you all, and possibly try to write blogs more often.

Last year, I was on weekly Humira and Methotrexate injections.  Sometime around June, my right knee developed fluid and was severely swollen, as you can see in the photo below.

After seeing my rheumatologist, he confirmed with an MRI, that I had a Baker's Cyst.  A what?! I had never heard of this before.  It's basically a fluid filled cyst, caused by the inflammation in my knee.  My doctor explained that sometimes, the fluid gets pushed to the back of the knee, causing the cyst.  It happens when there is so much fluid, it has nowhere to go.  My knee ended up more swollen after this photo too.  After 3 steroid injections, the cyst almost went away, but not completely.  After discussing things, we decided that after 8 years, it was time to say goodbye to Humira.  We decided that Actemra infusions were the next best thing for me, and to continue the Methotrexate injections along with it.  

Once a month, I go into Boston and have my Actemra.  Here is me at my first infusion! 

Since being on the Actemra infusions, and the Methotrexate, my joints have never felt better! I quickly got better, and noticed less and less morning stiffness.  Currently, I'm experiencing no pain, no inflammation and no morning stiffness.  My CRP level is almost down to normal! I am happy to say, that I am do very well.  While, it is still to early to tell if this is truly working, I have hope that things will get better for me.  I also am making sure I eat a healthy diet, rich in foods and supplements that help battle inflammation.  While every one's bodies are different, I have hope that those of you still suffering, will have a medicine that works for you as well. :) 

What would you like to see in the next blog post?! Comment below! 

Bitterness....

Feeling a bit bitter about my illnesses today...I'm just so sick of being stressed out all the time about what medications I have to take, what foods to eat, and which foods to avoid... Also, I see others complain about small, mundane stresses in their life. To them it's a big deal, and a lot of stress on them, to me it's small in comparison to what me, and others like me, have to deal with on a daily basis. I WISH I only had to stress and worry about "normal" things.... So let's step into the mind of what it feels like everyday to live with chronic illnesses....

First, I've been on and off a steroid known as prednisone for about 22 years. While it works great in lowering inflammation, it has caused me so many other problems! First it caused glaucoma and cataract in my left eye when I was 8 (I already had Uveitis when I was 3). The cataract has since been removed, but the medicines used to treat the Glaucoma, make the Uveitis flare, and the medicines used for the Uveitis make the pressure in my eye go up from the Glaucoma! They both counteract each other and I have to constantly be seen by an eye doctor to make sure it's well controlled. I've had 5 glaucoma surgeries over the years because the Uveitis flared and I had to increase the medication. Every time I get even a headache in my eye, I have to be seen by my doctor to make sure it's not the Glaucoma or else my vision will go away forever. My left eye already looks funky because of the vision loss I've had, and makes me so self conscious, I'm constantly worrying about how it looks. It makes me feel ugly, and I hate it.

Then the prednisone caused bone loss in my neck and hip, known as Osteopenia. I have to make sure I am taking Calcium with Vitamin D supplements twice a day, and making sure I am eating foods that contain those supplements (milk, yogurt, broccoli, etc). However, I also have Irritable Bowl Syndrome and have to watch what I eat or else I will end up in severe pain. Foods I am told to avoid are caffeine, fiber and what else, but dairy! Again two things that counteract each other! So do I eat the dairy so my bones don't loose anymore density and I end up brittle? And in doing so end up hurting my stomach? Or vice versa?! Something I have to think about every time I go eat something.

Then, the medications that I've taken over the years for my Rheumatoid Arthritis are known as immunosuppressants, which lower my overactive immune system. Because I've been on so many of them since I was 3, my antibodies known as IgA are completely wiped out and I can never get them back. My body has actually built up a resistance to them, so if I ever needed a blood transfusion and the IgAs were in it, I'd go into anaphaltic shock (medical alert bracelet is worn for this!) So now I have to give myself an IV of some antibodies known as IgG and have to be extremely careful with germs. I can't be around people who are sick, and when going out in public, I have to constantly watch what I touch and wash my hands all the time! If and when I do get sick, I have to immediately contact my Immunologist so I can be put on a special antibiotic and be monitored by him. If I am sick too long, I have to switch to another antibiotic, and other possible means of treatment may be needed.

I'm also on a chemotherapy drug known as Methotrexate. Yes, it is CHEMO, but not as high a dose as cancer patients need. It still makes my hair fall out, and I have to take a vitamin weekly to help decrease the loss. If I forget to take it (since it's only 1x a week, and has to be taken 12 hours after the methotrexate, I do sometimes forget), my hair falls out so bad, that after one shower, my drain is covered in hair. My hair is thinned from it, and again makes me feel self-conscious about the way I look, and am constantly worried about wearing my hair certain ways.

To be normally healthy, you're supposed to eat right, drink lots of water and exercise. Which I try to do all three. However certain healthy foods like fruit and vegetables, I have to be careful of eating too much because fiber can upset my stomach. Exercise I can't do if my RA is flaring, and when I do exercise, I'm always in so much pain afterwards I have to pace myself and wait days between or I'll put myself into a flare! Exercise also completely exhausts me, fatigue is another symptom from my illnesses. I would like to be able to work out and look and feel good about myself, but how am I supposed to with all this crap?! I try as often as I can, believe me I do try.

There is obviously more, I didn't even cover all of my illnesses, but these are my daily worries. These are things I have to constantly think about, and take over my life. Sorry to have just rambled on, but apparently I needed to get it off my chest. Add to it me being out of work, and having to worry about normal, everyday things like paying bills, buying food and medicines, family drama, my looks, worrying about the people I care about, Christmas shopping!, etc. It's enough to make you want to rip your hair out! Yes, I have my days where I want to scream WHY ME?! But I don't, because I know things could be a lot worse off, and everyone should stop and think about that as well. Stop stressing and worrying over the stupidest things, and be thankful for what you DO have. Sometimes it is hard to see it that way, but try as often as you can. Otherwise, you'll be a miserable old grump forever.

Medical Update

For the past year or so, I've been experiencing severe upper back pain.  I ignored it for so long because I am so sick of new symptoms and illnesses popping up, and seeing so many doctors.  My fiance, Adam kept suggesting that I call, he was concerned because no matter how much he massaged by back, the pain just kept getting worse. It was getting to the point where my actual bones were so sore, I was woken up during the night from the pain being so bad, I was in tears.  I finally took Adam's advice, and called a chiropractor.

After doing research, I found one within walking distance from my apartment (about 1/4 a mile), and he received all 5 star reviews from his patients! I didn't see a single review below 5 stars, so I knew this would be the one I should call.  I called this past Tuesday, and was able to get in and be seen THAT afternoon! Wow!  He did a physical exam, asked a lot of questions and then sent me for X-rays so he could see what was going on in there.  I was able to go back yesterday (Thursday) to get the results!  I found out that I have mild scoliosis in my mid and lower back.  He said this could also be causing my severe menstrual cramps I've been having, since my back is out of alignment, it could be causing strain on the pelvic muscles that cause cramping. 

We then discussed treatment options, including exercise, diet and treatments performed in the office.  He will be giving me adjustments, and have to use something called The Spinalator table, which is a table I lie down on my back on, that contains chiropractic rollers that go up and down my entire spine.  According to Access Equipment Corp, “the rollers lift and separate each segment of the spine. The rollers also elevate to increase the level of pressure applied to the back. The rollers are then moved up and down the spine by a travel system."  He did both that day, and said I'd need to come in three (3) times a week for treatment.  Normal, healthy people take about 4-8 weeks to fully heal, but with my illnesses and immuno-suppressant medicines, I could take as long as 8-12 weeks. 

Both the adjustment and table didn't hurt, and felt really great.  I go again tomorrow, and hope this is able to help my pains.  I am also going to look into starting some yoga, as I know this will help not only my back, but my RA as well.  I found a DVD that is called "Yoga for Arthritis", and is gentle on my joints, as normal yoga I can not do, it hurts too much.  It may be a long while before I feel some relief, but I feel better now that I have some answers and a plan of action!