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…….

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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.

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.  🙂

Check, Check , Check

I’ve been making my way down the pre-surgery check list. Every time I get one thing checked off, it seems like another item is added.

Wednesday I had a dental appointment and have been cleared.

My Rheumatologist called and said she wanted updated X-rays of my neck. It has given me problems in the past. It hasn’t happened since I’ve been on steroids for the last year and a half, but it used to get stiff and stuck in place. It got so bad I couldn’t swallow food sometimes. She wants to make sure it will be ok if I need to be intubated.

This morning I went to the joint replacement seminar the hospital makes everyone attend before their surgeries. There were five of us. All woman. I was the only one under sixty. The very end of the seminar was a bit of a blur for me though. I had taken some pain medsso I would be able to even make it to the room, and I only managed to get down half a cup of yogurt before my stomach rebelled. I spent the last twenty minutes with a very nauseated stomach. I just sat there trying not to puke. Every timethey were about to let out one of the ladies would start chatting about goats and other such things. The bile finally decided it would be held back no more and I popped out of my seat and was out the door faster than I had moved all month! I heard one of the woman say ” I guess the class is over. She just got up and left!”

I can tell the care in the hospital would be great. The bathroom was down a very long corridor and a nurse asked me if I was ok. I told her I was going to be sick. She grabbed a wheelchair, sat me in it, wheeled me to the restroom and waited outside with crackers and a cup of water. Very very sweet. I was so embarrassed. Stupid pain meds. There was no other option though. It has now been over a month without Enbrel or methotrexate.

I had almost forgotten how far along I had come withthe drugs. I had almost forgot what it felt like to be at the mercy R.A. with no meds. After this surgery, I don’t ever want to go without again. Lol.

Tuesday I have an appointment with my Rheummy to get cleared by her. She will have to check out the Xrays.

Wednesday is the cardiologist. Then I will have to pre-register a week before the surgery. So it’s looking like it will be the 13th.

I’m beyond excited. The seminar freaked me out a bit, but only because I’m terrified of hospitals and Iv’s and needles. Ugh. But other than that, it’s on.

P.S. I want to thank everyone for the comments and encouragement.  And if anyone else has surgery advice to offer, please leave me a comment. I’d love to hear from you.

I’m still amazed

I’m still amazed what a difference insurance makes. I just bought my months supply of prednisone and methotrexate. They used to run me about fifty dollars(which I didn’t always have).

It only costs me $2.10 now. 

I haven’t been sent any obnoxious-ulcer-inducing bills in months. Now that I’m receiving SSD I don’t have to sit and worry about how I’m going to have enough to eat and also see my rheumatologist. No more decisions of whether or not to pay for medicine or electricity.

I think the lack of stress is helping just as much as anything else.

I don’t have to call my dad or sister every month and ask for money. And then have them say they wish they could, but just couldn’t spare anything.

I am very very thankful for the change in my life lately.

I’m going to be 24 soon. I haven’t done a thing with my life since I was twenty. It’s very hard for me because I have always been an overachiever. I went from having a full time job, a part time job, and going to school full time to nothing.

I want to finish school so bad it hurts. But I also don’t want to push myself too hard too soon. My doctors say I just need to focus on my health at the moment.

I’m thinking that if I feel up to it, I may take a couple art class at my community college this summer. Just to get back into thing.

My posts always get off subject.

ANYways, Im amazed……

Medical Update

I’ve had three issues in the past couple of weeks.

One being frustration with my pharmacies. Another being frustration with my body, and the last is complete sadness about my doctor.

I’ll start with my pharmacies. I had too order my Enbrel through a pharmacy for the first time. I never expected it to be so complicated. I had to wait until my blood work came back to see if she wanted me to continue on it. She decided to keep me on it for the moment. My doctor sent it to my usual pharmacy. I called to confirm that they received it and to see when it would be and how much. They said they didn’t have it and would have to order it. Since it was a Friday, and Monday was a holiday, they said they couldn’t order it until Tuesday, and expected it by Thursday. Which would make it roughly over two weeks since my last shot.

I called every other pharmacy within thirty miles and no one had it in stock. Surely its not that uncommon?  I decided to stick with my usual pharmacy because I had never had any problems with them.

So the next Thursday I called them to check on the order and they said it wouldn’t be ready until the next day. I called back then and they had the nerve to tell me that they couldn’t carry Enbrel because they were not a specialty pharmacy. So they apologized and said they would fax it to the specialty pharmacy in town.

I had called them before and new they didn’t have any in stock. And since it was a Friday, they couldn’t put the order in until Monday, yadda yadda. So I called them Wednesday, and they said they never received a fax. Then my regular pharmacy said they never had the prescription on file! So I start talking to managers and I’m not happy because it’s been three and a half weeks since my last shot. Lo and behold, a miracle. The previously lost prescription appeared out of thin air. It was re-faxed, and of course, I had to wait for them to order it.

Well Friday came along again, and I went to pick it up. I gave them my insurance card and they said ” okay, that will be $1,793. I swear to god, I started laughing uncontrollably.

I called my insurance and they said they didn’t have my records updated with my income( which is insane, since I wouldn’t qualify for the insurance unless they had my income!) They had to update my file, which takes roughly one week.

I couldn’t make this up. I had been in touch with my doctor about it, and they didn’t have any samples, but pulled some strings, and eventually got ahold of two shots. So it put me at one whole month without my Enbrel. That’s not even the bad part. Onto my second complaint.

The blood work my doctor ordered in the first place came back with a problem with my liver functions. Which has never happened. So she cut my Methotrexate in half, cut my pain pills completely. Said to go back up on prednisone( I had finally gotten down to one milligram a day! GRR!) She wanted to keep me on Enbrel for the moment because she didn’t want to change anything while shes trying to figure out what caused the liver problems. So then I went a month without Enbrel too! Bleh.

The worst part is that I went in for new blood work yesterday and they told me my doctor was no longer with the clinic! I was devastated. That will be the third change in doctors in a year. My first doctor decided to leave, and trained a P.A. and that is who I’ve been seeing and she has been amazing.

Since there have been some changes in the clinic, there are three new doctors, and they decided they that they didn’t want the responsibility of a P.A. and they fired her. With no warning!

Now I’m going to have a new doctor that I’ll see next week. And its partly her fault. Bleh. It was just so nice to have a doctor who I knew actually cared and would go beyond her duties. I have no idea what this new lady is like. If I don’t like her, then I’m going to somewhere else.

My sister works at a hospital and several doctors have told her to tell me to go to one that’s about 65 miles from where I live. The one I go to now is about thirty, and is the only one closer. So I think I’ll go for it.