Arthritis Mom

Side effects are a reality of most medications. I've been lucky when it comes to side effects. I've had bone loss from taking prednisone, but prednisone wasn't ever supposed to be part of my long-term treatment plan. I do take extra calcium now to combat the bone loss, just as I take folic acid to help minimize the side effects of methotrexate. Unfortunately even with the folic acid I have had some hair loss. The first time I took methotrexate the hair loss seemed to stop after about a year or so. Now that I am back on methotrexate, the hair loss is back too.

I'm not going to lose all my hair, just some. Compared to liver damage, bone loss or stomach problems a little hair loss doesn't sound so bad. Really, what do I even have to complain about?

Well it's my hair! I don't want to see globs of it coming out. I just don't. It's not only troublesome because it's my hair and I'd rather keep it, but it's messy. It's all over my clothes. I'm constantly feeling it on my arms and I can't get rid of it. I feel like a dog shedding for the summer. It's all over the babies. They already liked to grab my hair and pull. But now even if they don't grab my hair, it ends up in their little balled up fists when I pick them up because it's all over me. It gets all over the floor where they crawl.

I know I can't change it, I have to accept it as a reality of my rheumatoid arthritis treatment. So I guess the only thing left to do is add "more frequent vacuuming" and "lint brushing the babies" to my list of things I do to combat the side effects of my medications.

We finally got the Wii for the kids a couple weeks ago. Right away Wii Boxing became a big hit in our house. What's impressive about it is that as you are punching air you can feel your heart rate increasing and the next day all of us have sore arm muscles. It's no impact and it's fun - in my opinion that makes it perfect for a busy mom with rheumatoid arthritis. They make a game specifically geared toward exercising called Wii Fit and we were going to buy it but it was sold out. The game includes many different types of exercise and tracks your performance. If my husband and I can turn it into a competition that will be all the motivation we'll need to get into a better exercise routine.

I found an article on Arthritis Today online that says it's a good option although you won't burn as many calories playing Wii Tennis as you will by actually playing tennis. As a mom/stepmom of six, I'm not sure when I'd be finding time to organize a game of tennis, plus I'm not very good at tennis. The good news is that playing Wii Boxing you won't get any black eye's or bloody noses. My personal thought is that Wii Fit is at least as effective as most other forms of exercise you might do in your living room. It includes yoga, balance, strength training and aerobic exercises.

If anyone else out there has tried Wii Fit post a comment and let me know what you think. Otherwise I'm pretty sure we are going to buy it and try it out.

We returned from our vacation on Sunday. We had a long exhausting drive home with unhappy, stuffy nosed babies. There was not much time to recuperate - on Monday the boys went to their mom's house, my husband had to go out of town for work and I had two appointments to which I unfortunately had to drag the twins and my 8 year old daughter. It was a really long day for all of us but we plodded through and it wasn't nearly as bad as I imagined it was going to be.

I woke up today with nothing left, no energy, no motivation to do anything. Sadly, we all had to go to my rheumatologist appointment. We needed to leave the house by 10:00am so of course by 10:05am we were headed to the car.

Just because we were running late I was hit with a bonus dirty diaper on the way to the car. I changed it and we were on our way. Just because we were running late, I had forgotten that I was almost out of gas. We stopped for gas. Just because we were running late the gas station was having technical difficulties and could not take credit cards. Just because we were running late I threw a $10 bill at the gas station attended and quickly pumped my 2.5 gallons of gas. And finally just because we were running late the highway was under construction.

I hate being late for doctors appointments. I feel like a loser when I'm late, and sadly, I am often late. I walked into the office and they looked at me a little funny - wondering how I got my double stroller up the stairs. I didn't. I rode the elevator as usual. Apparently the elevator had been out of service and the last two arriving patients had to climb four flights of stairs. So thank goodness for poopy diapers, running out of gas and road construction! They collectively saved the day!

We spent a while in the waiting room and the twins entertained everyone. One fellow patient commented that I looked too young to be there with all the old people (her words) so I told her my story. It's true that when I go to my rheumatology appointments I appear to be the only non-retiree. I know it's common to get RA at a young age like I did so I wonder why that is? A couple of us then discussed the very full waiting room and I shared my opinion: it's better to be sitting in a packed waiting room to see an awesome rheumatologist than to get right in without waiting to see a bad one.

When it was our turn the babies expressed extreme displeasure at being returned to the stroller. I think they wanted everyone to share in their frustration, and we all did. I had a much improved grip strength in my right hand but my left grip scored the worst ever. This qualified me for not one, but two cortisone shots. One in the left wrist and the other in the left middle finger knuckle. I've never had more than one before so I was feeling special (they are incredibly painful but I managed not to whimper and cry in front of my 8 year old). My rheumatologist said the double cortisone injection would hopefully help to avoid increasing my prednisone dosage. I had thought we'd be decreasing the prednisone at this appointment but I had to settle for status quo. We are going to see how I do over the next 10 weeks and we might consider increasing the Humira dosage to weekly if the RA doesn't get under control (which would be great because you know, I love those injections so much).

If you have or suspect you may have rheumatoid arthritis, you need to find a rheumatologist. A rheumatologist treats diseases of the joints, muscles and bones like rheumatoid arthritis, fibromyalgia, osteoporosis and many others. Using a specialist for rheumatoid arthritis is important because they have the most training and experience when it comes to these types of diseases, they are most likely to be aware of the newest treatments and what know what to try if the more common treatments are ineffective.

Once you find one, you can make great use out of internet resources to help you evaluate and communicate with your rheumatologist.

When I first suspected I had rheumatoid arthritis, I tried to learn as much as I could about it. I did this through websites dedicated to arthritis and messageboards for people with arthritis. I learned about symptoms (common and rare) and treatments (most effective, less effective) and what to expect from a visit with a rheumatologist.

With this information I was able to determine that my rheumatologist was very up to date on all the latest recommended treatments that I had read about. Whenever I received new information from my rheumatologist I went home and did my own research to determine if I agreed with his advice (with the exception of breastfeeding while taking Humira, I always have agreed with him). Having the right rheumatologist can make a big difference in getting your RA under control, so this was very important to me.

The benefits are mutual. There are times when my rheumatologist will give me a quiz to see if I already know what he's about to tell me. The day he was going to show me how to inject Humira, he asked if I knew how to do the injection. I did. I had already read the injection instructions on the Humira website. What can I say, I was curious, and my rheumatologist was not surprised. It made the process easier for him because we weren't starting from scratch, and more comfortable for me because I knew a little about what to expect.

I think this is one of the best uses of internet health information. It doesn't make you able to diagnose and treat yourself (not recommended), but it can make you an informed patient and it can help you determine if the rheumatologist you've chosen is the right one for you.

I have been dealing with rheumatoid arthritis since 2002 (diagnosed in 2003) and I have always sought out online resources to learn about my disease, treatment options and the experience of other people with RA. I am always surprised when I read about individuals treating rheumatoid arthritis without medication. I realize that some may have mild rheumatoid arthritis that can be effectively handled with diet and exercise, and I think that is awesome. I admit I should do a better job understanding the connection between diet and RA flares. I know I feel better when I exercise regularly. And I totally understand the desire to avoid medications. Who would want to have a daily regimen of pills and pill bottles if they could avoid it?

There are some RA patients for whom the medications are simply not effective. For those who can be treated effectively with medication, there is one very important and undeniable reason to take that path - to avoid long-term joint damage. My mom had rheumatoid arthritis before there were effective treatments. She had aspirin at high doses and prednisone, both of which have serious side effects and did not control her RA symptoms effectively. She tried a series of other treatments that varied from having no affect, to allergic reactions. After several years of struggling daily to function as a single working mother with untreated RA, she was prescribed methotrexate. It was a significant improvement over aspirin. As soon as Enbrel became available her rheumatologist prescribed that and for her just like many others, it was a miracle drug. The closest thing an RA patient can have to a cure. Unfortunately the joint damage was already severe. Severe joint damage is extremely painful, an added layer of pain and difficulty on top of rheumatoid arthritis.

Since we first speculated I had rheumatoid arthritis, my goal was to get on one of the biologic drugs like Enbrel. I knew from my mom's experience that the biologics gave me the best chance of leading a normal life with rheumatoid arthritis. I knew after watching her struggle in pain for so many years, and seeing her hands and feet become disfigured, that I wanted to do everything possible to avoid that outcome.

A normal life to me was good daily function (being able to do my regular activities) and prevention of joint damage. It took a while to get there. Since there is no test to determine if you have rheumatoid arthritis, it took 9 months to get an official diagnosis. Once I was diagnosed, I had to wait for the disease to progress to the point it could not be controlled with methotrexate alone before my insurance company would pay for one of the biologic drugs. When I reached that point, my rheumatologist and I agreed to start me on Humira.

In the past when an RA patient started on a biologic drug they stopped taking methotrexate, but the more common treatment option now is to stay on both methotrexate and one of the biologics. There have been studies to show the combination gives you the best chance at preventing joint damage. The study results were surprising because doctors and patients assumed if you were not experiencing pain and swelling then your joints were fine. It turns out that is not true. You can be functioning fine on a daily basis and still be experiencing joint damage.

Regardless of what treatment option you take, even if you are not on any medications, is vital that an RA patient be monitored for joint damage. My rheumatologist does this through periodic x-rays of my hands and feet. If you have RA and you are not being monitored for this, ask your rheumatologist or find a new rheumatologist! Do not wait until it's too late, preventing joint damage is too important. You don't get a second chance to do it over.

At my rheumatologist appointment several months ago I was happy to report I was back on methotrexate and I was ready to start weaning off prednisone. I was down to taking 5 mg daily at that point and was told I could drop to 4 mg daily. I know it takes a while, the only other time I've weaned off prednisone the entire process took 9 months. I was prepared for the long haul. With osteopenia caused from my first lengthy use of prednisone, I was ready to be on my way.

I had been faithfully taking my 4 mgs along with my other daily, weekly and biweekly doses of RA medicines when my recent flare hit. It took a break for my trip last weekend but showed up in full force the day of my regularly scheduled rheumatologist appointment a few days ago (that was nice, usually Murphy's Law dictates symptoms disappear right before the doctor appointment). I figured I was in for a cortisone shot and I was right. Woohoo! They sting but they sure are effective!

Unfortunately the other recommendation was to take 10 mgs of prednisone for one week to knock the socks of this flare, then go back to 5 mgs daily. Ugh. One step forward and two steps back, not exactly how the saying is supposed to go. I keep reminding myself this is short-term, rid yourself of the flare and then worry about prednisone intake.

It's such a love/hate relationship with the medications. I used to be one of those people who never took medications. If I had a headache, I would lie down and rest, drink water and wait for it to go away. If I had a cold, I stayed hydrated and ate well and let it pass. In hindsight, I'd say I was proud of my immune system and trusted it to work properly.

Not any more. Today I wake up every day and take motrin, prednisone, calcium to combat side effects of prednisone and a prescription strength folic acid tablet to combat side effects of methotrexate. During the day I take more Motrin and calcium. Once a week I take methotrexate and biweekly I inject Humira. There are advantages. Last Saturday I was able to impress the younger children by holding 11 tablets in my hand (6 methotrexate, 2 prednisone, 2 motrin and 1 calcium) and swallowing them in one gulp.

I know I'm lucky. The drugs work for me. They let me be myself and face the world and care for my children. I know what it means to not have that, I watched my mom struggle for years taking asprin and a serious of horribly ineffective and sometimes damaging treatments before more effective treatments were available. But I still hate that I have to take all these medications. I love them for what they do, and I hate that I need them.

I have to give myself a Humira injection tonight. I don't want to. I never want to. Who would? I feel like a wimp complaining but I just don't like it!

I recently exchanged my regular needle for the new pen (push a button and the needle shoots in all by itself), I was told people like it better. It is supposed to be better, easier and hurt less. Maybe I'm doing it wrong, I agree it's easier but it definitely hurts more! Is it just me? Why is this pen so popular?

I need to find a way to psych myself up for it. Maybe I could have cookies as my reward after. Kind of like when kids get a lollipop or stickers at the doctor after their immunizations. Some kind of consolation prize. If you have any suggestions, please send them along. Thanks.

Wait. You wanted to nurse twins? Yes, I wanted to nurse my twins.

I feel blessed I was able to nurse my first daughter until she was 23 months, I did not have RA then. I knew being a mom with RA that it might not be possible to nurse the twins, or I might only be able to nurse for a short time. I set about doing my research early in the pregnancy. Where there's a will there's a way, sometimes. I found mom's online who had chosen to nurse on Enbrel and Humira or by waiting to go back on any medications. I spoke with several lactation consultants and read what Dr. Hale had to say about Enbrel, Remicade and Humira. I talked to my rheumatologist and the babies' pediatrician. The ultimate answer after talking to all those experts was I had to decide for myself with very little scientific research to base my decision on.

While most people think it's probably safe to nurse while on Humira, nobody is willing to say it is definitely safe. It is not safe to nurse while taking methotrexate. One can nurse on low doses of prednisone and motrin. I took all the information I had gathered from every source and much to my rheumatologist's dismay, decided I would try to make it 6 months nursing the twins.

I stayed off the Humira as long as I could, which was about 6 weeks. I was able to stay off the methotrexate for 8 months. Eventually there were just too many bad days but I am glad I made the decision to nurse them for what ended up being 7.5 months. I am thankful having RA did not take away the opportunity for me to do something I consider so important.