Meds part 2

Hey guys,

Thanks for the feedback. I really really appreciate it!

So I’m actually looking for anyone else who is on all four of the following meds.

Rituxan, Humira, Methotrexate, and prednisone.

I really didn’t word the question right on my last¬†post ūüôā

I’ve¬†been on a combination of humira(or Enbrel), methotrexate, and prednisone.

Im currently on Rituxan, Methotrexate, and Prednisone. And my inflammation markers are still very high, so Im about to add Humira to the mix. Apparently the combination is still very rare so I was hoping to find someone else who is on all four.

Or at least Rituxan¬†and Humira. Since thats the combination I’m most concerned with.

Thanks!

Meds

Has anyone else had experience with a combination of the following drugs?

Rituxan

Humira

Methotrexate

and Prednisone as a treatment for their R.A.? I would really love to ask you a few things…….

Denied

I’m¬†so bitter about health care right now. I’m so bitter that my worth as a human being and the amount of treatment available to me is based on the amount of paper in my wallet.

My feet are really bad because of the years my legs were messed up. Now I can’t¬†stand more than a few minutes without a large of pain. Just like before the surgery.

They want seven hundred dollars for custom foot inserts. Nothing else has worked and my insurance wont cover it.

I started a new medicine called Rituxin. I havent seen any improvement. My doctor wants me to try a combination of Rituxin¬†and Humira¬†but my insurance wont cover it. What if my hands go like the rest of my body? They hurt so bad all the time. I find myself just staring at my swollen fingers. Terrified that they’re¬†going to be irreparable¬†like my knees and hips and elbows. Every day I just imagine the amount of cartilage that was destroyed that day.

On top of that, my right knee is already grinding down after only 6 months because of the position of my hips and knee. I will probably have to have it repaired. But my surgeon is in no hurry to do it. He wants to exhaust all other options. At this point I don’t see myself being able to go to school next semester.

Oh, and I was diagnosed with Fibromyalgia. She pressed several points on my body and they were so tender I yelped.  My body hurts all over to the touch.

I feel like I’m¬†falling apart. I’m¬†so frustrated right now. I’m¬†so disgusted with this country’s health care system. How can anyone be proud to live in a country that lets a 20-year-old woman suffer from a disease with no medical treatment until she has suffered so much irreversible damage that she will feel the effects for the rest of her life? How can this still be happening?

I want to give up. I’m¬†so tired. I’m¬†so unbelievably tired of all of this. And I feel so powerless.

Another Battle

My life has changed so drastically in the last few months. Sometimes I go an entire week without even thinking about this blog. And when I do, I never have time to update anyway.

I have found it both thrilling and challenging to adjust back into the “real world”. The last few years were all about the things I couldnt do. The steps I couldnt make. Both literally and figuratively. I was so wrapped up in my illness and what I was missing out on. For years, my heart ached when I thought of everything that was passing me by.¬†

And while I usually¬†have a very upbeat attitude, Im not ashamed to admit there¬†are many many¬†times when I was¬†just plain angry, and resentful. I’ve felt cheated and sometimes downright grief-stricken. My R.A. was so severe and so fast acting, that within just a year I had very little cartilage left in my knees, and things have continued on in the same way for the last four and a half years.

I realize that since I was first hit with R.A., I’ve treated every problem that has come my way as a type of battle while completely ignoring the war.¬†I’ve ¬†fought for medication, health insurance, and knee replacements. I viewed them all as an end all. Something that would save me, fix me, make me whole again.

I’ve found it very very¬†difficult¬†to face the fact that this is my life. It’s something I’m still struggling with. After four and a half years, it is something I still want to fight against. Dont get me wrong, I still love my life. I love who I am as a person. And I love the support I have around me. But my biggest struggle with R.A. has always been accepting my life as it is and not how I want it to be. That this problem is long-term and will be one struggle after another. That I have had major victories like getting health insurance, or new knees, but that in the end there will be another struggle.

Im coming to grips with this though. Looking forward to my next battle. Haha. I think I like that term. I think it deserves a capital letter. Battle. My next Battle will be for my hands. I have an appointment in two days to set up everything for my new Rituxin infusions.

If anyone has read my blog, you may know of my complete and absolute terror when it comes to needles. And how I almost didnt want surgery because of the I.V.! I agree. It’s completely ridiculous. But….just the way I am. So to agree to IV infusions, I really have to be losing my Battle. And unfortunately I am. R.A. already won my knees. I’ll be damned if it gets my fingers.

My fingers. I can’t¬†even think about my fingers “going”. I find myself holding up my hands for daily inspections. I can already see slight deformities. Knuckles so swollen that¬†the tips of my fingers never touch. So I need drastic help. My rheumatologist is even talking about joint therapy with Rituxin, humira, and methotrexate. At this moment, I’ll try anything that helps.

So that where I am at the moment. Still greatly improved after knee surgery, but fighting another Battle.

Cowboy Up

I had a follow up with my surgeon this  week.

So, we decided that the hip definitely needs to come out. He says it’s at the end of its life, and I agree. It’s also problematic in that it is keeping my new knee from getting straight.

The only thing is that now that Im finally back in school, I dont want to have to take a semester off. Christmas break isnt long enough to recover, so I want to try and hold off until I get out for the summer in May. Thats eight months though. It seems like an eternity.

The thought of it really scares me. Which is a bit odd since my knee replacements went so well. And have literally changed my life dramatically for the better. I guess it’s irrational and the secret pessimist in me, but it’s almost as if Im scared that theres no way it could go so well three times in a row. Haha. I know. Silly.

But life has been wonderful for me lately. I have to stop myself from overdoing it sometimes. I have to remind myself that I have other joints that arent acting the way I want just because I have new knees.

But my legs are still getting stronger and stronger. I can stand for so much longer. Before the surgery, 20 seconds would feel like torture. I can walk pretty far too. Before the surgery I couldnt get across the apartment without a break. I stood on my bed tonight to dust off a shelf. I havent been able to do something like that in years. So I’m still doing these tiny things that just overwhelm me sometimes.

As far as the other joints go, it looks like Humira is just not cutting it. Shoulders, elbows, wrist, and fingers are becoming very problematic for school. I have to do something if I want to continue in art courses.

So I’ve had a lot on my mind lately. I dont really have a plan yet. I guess I’m just going to try and cowboy up and deal with the hip issues for now and see how it goes.

Ups and down

Its amazing how you can be on top of the world one week, and the next week, R.A. can bring you so far down.

The initial relief I felt from my meds have slowly stopped working and Im in the midst of a hard core flare. The last few of my joints that haven’t been affected have finally jumped on the R.A. bandwagon. Now that my shoulders and ankles are in the mix, the only unaffected joints are my new knees. Jaw, neck, shoulders, elbows, wrist, fingers, hips, ankles, and toes.

On top of that my recent Xrays show joint damage not only from Rheumatoid Arthritis, but from Osteoarthritis as well. I dont even know how it’s possible. Im only twenty four. How is this happening???

I feel, like once again, I let my  hopes up too high.

I have amazing new knees, and I’m still very grateful, but its like my white blood cells want to make it up by attacking my other joints even harder.

Im still so frustrated at the simplest things I cant do. I actually had to miss a grave side service yesterday. Now I’ve missed alot of things in the past couple years. Birthdays, graduations, dinners. But never a funeral. And so that is a whole new low for me.

Im desperately, desperately, trying to stay positive. But I feel like Im loosing the fight right now.

My knee still isnt straight. And my hip pain has made walking almost as painful as before. My rheumatologist gave me the name of a pain management specialist. Im so frustrated I just want to give up. I dont even want to try anymore. Why did I think everything would be solved after my new knees? I never thought everything else would fall apart. But of course. Of course.

There is still a chance that the meds will start working again. It’s only been two months. Im still doing my physical therapy at the clinic and here at home. Im not going to stop of course, but it’s hard to stay motivated right now.

I went out to eat with a friend a couple night ago. The retraunt is right off the highway so it was really loud. A very large man started yelling at us across the parking lot. I looked at my friend and said ” Is that crazy man yelling at us?”

As we got closer, he kept gesturing at me, and said “What happened? Whats wrong with you?”

I swear on my life this happened. And so I tell him and he calmly said “Oh, ok.” and climbed into his car and drove away.

Is this happening to anyone else?

The Joys of Medication

Its been almost two weeks since I have been allowed to start taking my R.A. meds again. Namely methotrexate and Humira. I’ve had two doses of Methotrexate and one of Humira. This is my first attempt at Humira though. But I’m already loving the fact that I only have to have the injection every two weeks instead of weekly.

I’m already feeling improvements in my hands, wrists, and elbows. I still have three stubborn fingers, but they should get better with time. I know there are alotof people who hate the idea of taking these types of medication. In fact, at least one rude man likes to write to me occasionallyabout the evils of medication,¬†etc. But the fact of the matter is, that after four years of this disease, I know what works for my body. And the only thing that has ever¬†worked for me is the medication.

My father is a huge believer in alternative medicine. Overbearingly so. I have tried many many many things. I have tried almost anything you could possibly think of. Everyone’s body is different and everyone has the right to seek whatever means available to them for treatment. I would never tell anyone who is fighting R.A. holistically that it is useless and a waste of energy and money. Because it does wonders for some people. But it’s not for everyone. Just like pharmaceuticals aren’t for everyone.

I’ve had to argue the point with my Dad until it’s become a sore subject. It’s also an issue online. Bottom line is that I know my body. I know what has given me relief. And I know what hasn’t. I have never had a single negative reaction from any medication in the past four years. (Besides weight gain) So maybe I’m biased, but I’m throwing my towel in with the side that helps me feel less pain. Period. And I don’t regret it. If some of the people who talk down at me for my preference spent one days in my shoes, they might think differently too. ūüôā

In other news, it’s been three weeks since my right knee replacement. It is finally starting to get straight! Slowly but surely. Tomorrow I have my follow up appointment and should be able to have my stitches removed. Walkingis still difficult because of my hip pain, but I have an appointment with my Rheummy on Tuesday. As my grandfather would say, I have “a touch” of bursitis in the ole hip. So a shot may fix me up nicely.

My left knee is doing fantastically. I have full range of motion, and have regained alot of strength. I’ve been Miderma-ing the hell out of the scar. There still have not been any complications in the slightest. I know alot of people have had it rough with their joint replacements, so believe me, I know how lucky I am.

So I’ve made a list of three health goals for this summer.

1)Do well enough in rehab so that I can take some art classes at the community college this Fall. Getting back to school has been my one big goal since I was forced to quit. I know Fall will be too soon for the University, but I think slowly readjusting back to school life through the community college will be good.

2)Get my hip pain under control. It’s the only thing holding me back now.

3)Get completely off the Prednisone, and start losing some of the weight I’ve gained. Two years of non stop high doses of steroids= roughly eighty five extra pounds. I still can’t stand to look in the mirror, so it’s good to know that I’m at the end of the hell that is Prednisone.

I think they’re realistic goals. I have complete faith in myself. Even if I cant accomplish all three, it wont be from lack of trying. That’s for sure.