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 🙂

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!

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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…….

My new life

So many little things have been happening lately.

I can make it to the living room in time to answer the phone when it rings. I had gotten to the point where I never even bothered attempting it.

I’ve stopped watching and monitoring every drop of liquid I drink in fear of needing too many trips to the bathroom.

I went on a short shopping trip. No wheelchair, and no cane!

In fact, for the first time in about two years, I rarely leave the house with it.

I started school today, and besides my slightest limp, nobody gave me a second glance. Do you know how exciting that it?

I walked up a flight of stairs. Not easily, but I still did it.

My knees are actually beginning to look like knees. There’s a distinct knee there as opposed the the enormous swollen blob that has been there for years. I haven’t been able to see the shape of my knee since the very beginning of my illness.

I’ve been able to regularly visit my grandparents. Almost every week. I love my grandfather so much. He has such a special place in my heart. My mother loved him so much when she was alive. He was her hero. And he’s been pretty sick the last few years. I just haven’t been able to see as much of him as I’d have liked. But I do now.

Here’s a big one.

I finally finally got a scooter. I’ve wanted one for years, but have never been able to use it. I can now. I’ve been zipping around, practicing for the driving test for my motorcycle license. It’s so much fun. It feels amazing to drive off by myself on country back roads and just relax.

Here’s a bigger one.

I felt pretty today. Even with the extra weight. That’s never happened….

And the biggest thing of all, I’M BACK AT SCHOOL!

I went to my first two art classes today. I’m beyond excited. I’m thrilled. Beyond that.

Getting back to school is what I’ve wanted most for four and a half years. Meeting new people. Getting back into the real world. I’ve been in a cave like state for years now. I’m finally getting out again.

My health is still far from perfect. But these new knees have completely changed my life. It’s been four months since my first surgery, and I am still as amazed as that first day I woke up with a new knee. I still wake up everyday thankful just to be able to walk again pain free.

When I was twenty, before I became sick, I never stopped to think about things like that.

Such little things that everyone takes for granted. This post is one big list of things that seem small to some people. They’re huge to me. They’re not little. They are enormous obstacle and goals to me. Sometimes I couldn’t imagine that I would ever accomplish them.

I’m beginning to feel like the old me again. The pre R.A. me. Although, surprisingly enough considering the condition my body is still in, I still think it’s an improved version.

Now that’s saying something, isn’t it?

scooter

Why yes. That is my scooter. And you are correct in your assumption that it is inside my apartment 🙂

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?

Who says stuff like that?

I had a bit of a setback these past couple of weeks. Both physically and emotionally. I’ve been trying to stay upbeat, but am still a bit down.

The hip pain that I’ve mentioned seems to only get worse and worse. The option of another replacement has even been tentatively put on the table. It’s something I really would like to avoid. My knee replacements went very well, but I know hip replacements are even more complicated and painful. On top of the R.A., I also have bursitis on my right hip which is making it worse. My rheumatologist gave me a steroid shot, but I think she missed, because it didn’t do any good.

On a brighter note, my knees almost never hurt anymore. Especially the left. Unfortunately, I still haven’t been able to get the right knee completely straightened. It took over a month of intense therapy to get it from 18 degrees from straight to 4 degrees. I had a week and a half break while switching from home health to outpatient therapy. In that one and a half weeks, my knee went back to the eighteen degrees. As you can imagine, my frustration levels are through the roof. As I’m sure anyone who has ever been through this type of surgery knows, the physical therapy has been a very difficult and painful process, and I’ve worked very hard. And all that work went down the drain. Even though I kept up with the exercises I could do. But…. I’m back in outpatient therapy. At the end of the month, it will be a year of almost constant physical therapy and at this moment in times, my knee is still bent. 

So, if anyone has been reading my posts, you’ll know how much I’ve been looking forward to shopping for clothes to show off my new knees. In fact, I’ve thought of it as a sort of gift to myself for making it through these past few months of surgery and recovery. I haven’t wanted to buy clothes until I lost some of the Prednisone weight, but decided to buy a few things to try and cheer me up from the setback from my knee.

I swear this story is true. I couldn’t make this stuff up. After you read this, you might understand why I hate leaving my apartment. Oh, if it was only a one time thing……..Alas, it is not.

So…..I take my wheelchair because of the ever increasing hip pain and because I’m still not at the point where I can stand for a long time. Nowhere near enough time to shop anyway. I felt really good. I had gotten my hair colored and cut a few days before. I had whitened my teeth, and gotten new make up. I felt like I looked better than I had in a long time. And for the first time in an extremely long time, I put some effort into my looks. So I found a few things to buy and went to pay.

The cashier asked for my I.D. because I payed with my debit card. She looks at the I.D. (which was taken pre-prednisone) and she sort of laughed and looked at me like I was trying to play a trick on her.

She said ” This isn’t really you.” giggle giggle.

I knew where this was going, because it’s happened to me several times. So I reply curtly “Yes, its me.”

“Well you’ve certainly put on some weight haven’t you?” I felt like someone punched me in the gut. There were several people behind me in line and my cousin was with me and there were several other cashiers and customers in the immediate area who could hear it all.

I was horrified, and just replied with a sarcastic “Thank you so much for that…..”

This is were it gets bad. You could tell she wasn’t  being hateful. She was just genuinely dumb.

She looked a little shamed, and as if to make it better she looked at me in my WHEELchair and says, “Oh, dont worry hon, you can run that off in no time”

I just looked at her in genuine amazed shock and noticed the other cashiers’ eyes bug out as they quickly averted their gaze. My cousin was really angry and says “She obviously cant.”

So the woman once again realized her foot was in her mouth, and so once again tried to make me feel better by saying ” You know it’s ok you’re in a wheelchair. Sometimes I really wish I was so I wouldn’t have to walk so much.”

I had a million retorts running through my mind, but was just so angry and mortified, I just hightailed it out of there. I tried to laugh it off, because honestly it’s a bit funny looking back. WHO SAYS STUFF LIKE THAT?!

I tried to put it out of my head, but it really upset me. For years, I’ve dealt with this sort of thing. Strangers looking at my legs like I was some sort of circus act. Gasping, and asking what was wrong with me.

In another post about a year ago I wrote about a woman who kept looking at me and then at my I.D. back and forth, and then asked me pityingly, “What happened to you?”

I had thought that once my more obvious signs of R.A. were gone, people would bother me so much. But apparently my weight horrifies them now. People, from strangers to my own grandfather, wont leave me alone about my weight.

It’s like they think I don’t know. That they need to bring it to my attention so I’ll do something about it. Trust me I know. I can’t even stand to look in the mirror. I’m nearly one hundred pound heavier than I was less than two years ago. Im horrified by it. I haven’t been able to lose a single pound no matter what I’ve done. But the only thing keeping me from being completely bed ridden was the Prednisone and I would do it all over again. I would take every pound. I don’t know anyone who can understand the concept of that kind of pain. How can you even begin to explain this sort of thing to a dumb cashier? So I just give up.

All of my friends tried to reassure me, but when I go in public, there is usually a high chance of all my insecurities being pointed out to me.

It’s just so hard to live with this disease and have no one understand it.

My best friend’s sister ( who, like the cashier wasn’t being hateful, just extremely ignorant) was once talking to me about R.A. drug commericals. She was trying to make small talk so she brings them up and starts laughing and said “Aren’t they ridiculous?! I just want to say, God, just take a freakin aspirin and get over it.” Giggle giggle.  She said that to me. Knowing my full story and  struggles. She wants to say that to them. So in other words, she wants to say to me. It’s just ignorance. And usually, I can let these things slide. But this cashier the other day, just wrecked me.

I cried for hours. I’m crying now just thinking about it. Everyone says not to let some dumb cashier get me so down, but I cant help it. My friends were so mad. They wanted to know the store and her name so they could get her fired. I declined the offer. It certainly wouldn’t make me feel any better. They were mad because almost every time I get the confidence up to start going places, something like this happens, and like some sort of turtle, I just pop back into my shell. It’s frustrating to them I’m sure. And rationally, I am perfectly aware of how dumb it is to miss out on things because of my own pride. But I just can’t help it.

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. 🙂

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.

Back On

Today I was finally able to start all my R.A. meds again. After fifteen weeks without anything but Prednisone, I am thrilled.

I had to stop everything before my first surgery. And since everything kept getting delayed, it meant more time without my meds. It was still worth it. My two most painful joints have been replaced.

The last fifteen weeks have not been easy though. Most mornings I wake up to a stiff and painful jaw, hands that cant even make fists, wrist that feel like they will snap, and elbows that are so painful, they keep me up at night. They are both stuck in a bent position, similar to what my knees were. On top of that, I have two hips that never give me a moments rest.

Most of these joints were reasonably well managed when I was on all my medication. So to say Im thrilled to be going back on is a bit of an understatement.

I find it so odd that something I was terrified of taking in the beginning is something I am ecstatic to take again. With all the side effect warnings, I was sort of scared at first. Now I know the relief that they can offer. And I’ve never had any sort of negative reaction to anything I’ve taken in the last four years.

Im most excited about the fact that I will be able to slowly come off of Prednisone. After two years of continuous use, I am very ready to get off of it. Until I started Prednisone regularly, my weight was always in the 130’s range. Not the case anymore. So Im almost as excited about the lack of Prednisone as I am about my new knees.  🙂