My Wish List of Medical Tests

She's nuts! That is probably what you are thinking. Or maybe, she wants to run up my medical expenses. Nope to both counts!

My wish list of medical tests is a list I would have each and every one of us undergo to ensure we stay as healthy as possible.  Of course this wish list will depend on what medications you are taking, your age to some extent, and other conditions that you have that are not ra. But in my non medical opinion (as you know I don't hold a medical degree...a BS in Business...yes but no medical degree) this list would help to ensure that we continue to stay healthy and to help monitor for possible side effects from the ra medications we are taking. I say possible here because when one reads all the literature out there on DMRADS, one can become scared and not want to take these medications. RA is a serious long term disease that can possibly damage us permanently. These medications may be necessary to curtail this disease.


And for good measure, I added a newbie test list for those of you trying to figure out  if you have ra.


Newbie Test Wish List:
Lyme Disease Test (if you live in an area with ticks - this test should be done as this disease can mimic ra)
CBC (Complete Blood Count)
CCP (RF or rheumatoid factor test is the old test and this one should be used instead - in my humble non medical opinion that is)
CRP and/or ESR (I prefer the CRP one myself)
ANA (although a positive test result on this one won't narrow down too much by itself)
TSH (thyroid test as a thyroid that isn't functioning properly can come with joint pain, fatigue, etc. or mimic ra to some extent)
Base Line Xray(s) of impacted joints


WebMD has a pretty good overview of these tests and a few more but does not mention testing for Lyme disease or the thyroid testing . You may want to rule out Lyme disease if you live in an area with ticks...just to be on the safe side. Plus if this disease is not treated early it can cause a host of life long complications and it is treated with antibiotics. Why suffer if a simple blood test could help? And of course I am wishing for the thyroid screening because symptoms of an improperly functioning thyroid can mimic ra.


No wonder doctors have such a hard time trying to figure out what is wrong with new patients. It's alot to unravel and it can take time. The thing for you to remember is PLEASE DO NOT GIVE UP OR GIVE IN! You need to keep on until you find out what is wrong with you. And I am sure that this wish test list is not an end all. If you have a good doctor, they will also do an examination and should do a detailed medical history on you. Combining all of it will hopefully unravel what you might have and if not...keep on. Don't let your doctor just hand you a prescription for an anti-inflammatory. Having an auto-immune disorder WILL require more then just this! This is your life you are fighting for, your ability to function, and your sanity at times. Stay strong! And if you can't, get yourself a friend or close family member you trust to help you in this process.


Two of my favorite bloggers are: Rheumatoid Arthritis Guy who has a great 60 second guide to RA and RAWarrior. She has a wonderful post about the newly diagnosed and initial tests.


And for those of us who have been given an autoimmune diagnosis of ra and are currently on the path to maintenance, this is my test wish list:


Ra Diagnosis (or seronegative diagnosis)
First and foremost I think we all need to have a Vitamin D level test done. For some reason this vitamin is lacking in alot of us. More and more I am hearing how once this test is done, the patient is low in vitamin D. Why? I don't know. Like I said I am not a researcher or a doctor just an everyday human trying to make my way through this ra journey. But I do have my suspicions. I think our bodies are somehow attacking whatever organ or system maintains vitamin D and this is why we are lacking. But this is just my humble opinion only. Wish some researchers would research this theory though :-)


And two other tests I would wish for: bone density and thyroid screening for all long standing ra patients. And I would love for all of us to see a cardiologist and pulmonologist to be sure we are free of heart problems and lung problems. RA has been known to attack both these areas and these areas are not often watched carefully by our docs. In addition it would be wonderful to see a naturopathic doctor as well. Unfortunately most insurances will not cover a naturopathic doctor but since I am wishing...I wish that was covered too!


This list will be broken down by medication and I hope that you will see why I want this wish list. Almost all of my wish tests are a direct result of possible side effects. Why you may ask? Well I have this motto...better safe than sorry. We must be vigilant when using DMRADS (disease modifying rheumatoid arthritis drugs - what a mouthful). These are potent medications that almost always must be taken (not to cure) to decrease the attack going on in our bodies.  We will most likely be on these medications for the rest of our lives. And hopefully that will be a long, long time. So to ensure that we are monitoring our health properly, I have my wish test list.


Prednisone -  only if this medication is used on a consistent basis should one be concerned with the following tests: bone density test (DEXA Scan), blood pressure monitoring, eye exam to watch for cataracts, and monitoring of blood sugar levels. And let us not forget, calcium and vitamin D level test.


plaquenil - eye test before you start this medication and on a regular basis as recommended by your doctor (you will need to see an optomologist for the correct eye screening). Two decent sites to read up on: plaquenil and eye tests (see an optomologist regularly). 


methotrexate - baseline lung xray (this should be done before you start the medication), liver chemistry, and CBC (Complete Blood Count). I would also like to see regular followup on a patients lungs if they stay on this medication. I would love for methotrexate users to be watched by a pulmonologist (a doc that specializes in the lungs). Chances are you won't get a referral to this specialist unless you develop problems, so at the very least...be sure your rheumatologist looks out for your lungs while on this medication. And if you have any breathing difficulties, experience any asthma type symptoms...ask for a chest xray. If you are having great results with this medication but are experiencing a lot of stomach upset, talk with your rheumatologist about switching to the injectable form of this medication. 


Sulfasalazine - Liver panel, CBC and if you do show anemia, the John Hopkins mentions a test for "a deficiency of the enzyme glucose 6-phosphate dehydrogenase (G6PD) which may predispose patients to red blood cell hemolysis and anemia".


Leflunomide or Arava - Liver panel (hepatic panel) and CBC. Again, if you are experiencing alot of stomach upset, you should talk with your doctor about what can be done to help you.


TNF - Tumor Necrosis Factor Inhibitors 
Etanercept or Enbrel - TB test before you start Enbrel.  CBC before you start Enbrel. Hepatitis B test. Liver Screening. Screening by a dermatologist before you start Enbrel (from the Enbrel website: "Melanoma and non-melanoma skin cancer (NMSC) have been reported in patients treated with TNF blockers, including ENBREL. Periodic skin examinations should be considered for all patients at increased risk for skin cancer.") And if you have ever had any type of cancer, I would talk with your specific cancer doctor about the use of tnf medications and if they are appropriate to you and your specific cancer history. And be vigilant on age and gender specific cancer screenings: breast, prostrate, ovarian, and colorectal. And if you have any history of heart disease or COPD in your family or have experienced any heart issues, seek the consultation of a cardiologist.


Adalimumab or Humira - Same tests as for Enbrel.


Infliximab or Remicade - Same tests as for Enbrel.


Abatacept or Orencia - Same tests as for Enbrel.


Rituximab or Rituxan - This medication is taken along with methotrexate. My wish list tests would include the tests above for methotrexate and those for Enbrel.


Anakinra or Kineret - CBC to monitor for infections.


Gold injections - According to Medicine net "Your doctor will be closely monitoring certain lab tests (e.g., white blood cells, platelets) before you start therapy and before each injection. It is important that you keep all medical/lab appointments." 


Azathioprine or Imuran - Same tests as for Enbrel. According to the John Hopkins website: "Screening for levels of the enzyme thiopurine methyltransferase (TPMT) is recommended before initiating therapy with azathioprine.  Certain individuals have deficiencies in this enzyme that metabolizes azathioprine with a concomitantly increased risk of toxicitiy for the medication. "

This list is just a test wish list that as an empowered patient you can talk with your rheumatologist about and other specialists that you may want to include in your healthcare team to monitor your health. And by all means if you are experiencing something that is not normal for you, do report it to your rheumatologist. Every person experiences medications differently and just because the side effect isn't listed somewhere, doesn't mean you shouldn't report it to your doctor.


I want you to improve your life which means containing your ra. I know there are no cures...yet. But hopefully this wish list of mine will keep you healthier and give you a heads up of things to keep an eye on. And do, by all means, inform any other specialist that might be caring for you of medication changes or proposed medication changes. For example if you are seeing a pulmanologist, cardiologist, or under the care of a doctor for any previous cancers....talk to them before you start any new medication for ra. Often a medication may not be advisible by another doctor treating you for something other then your ra. Be sure your doctors are talking to one another or do the talking yourself if your team doesn't want to play together.

And while I am at this wishing thing...anyone out there know of a fairy Godmother I can put into action to sprinkle fairy dust on all of us so that we can sprout wings and fly.  Nevermind...I'll just go find a medication that has this side effect...just kidding.

Happy Fourth!!

I am wishing all of you a very Happy and Enjoyable Fourth of July!!

What I want most for all of us is a pain free fourth of July weekend. I just wanted to pass on some of my ABC's of how to party the ra way.

No one must have a barbecue for the fourth although this tends to be the biggest barbecue day of the year. You can always do a pick up of food, use paper plates and have a wonderful fourth of July this way.  Or you can take your fourth celebration on the road and eat at a park, the beach, or even out if you can find a restaurant open. We must be flexible with ra and part of that flexibility is being willing to change how we did things in the past.

But if you are hosting the barbecue this year...

Paper It! Buy all your serving things at the store for this holiday. Please don't try to fancy it up with regular china. Everyone will enjoy themselves eating off of paper products. And if you are a greenie like me...use the ones that are more environmentally friendly.

Buy Store Sides! Yes, I know how wonderful Gramma's coleslaw recipe tastes, how Aunt Betty's potato salad is your favorite and she won't be here this year....give in...buy out. Save your energy for your guests. And let someone else do the shopping for the groceries if you can. That is why we have grocery lists.

Or better yet, have every guest bring a dish with them. Your family can do the meat only and the rest of the guests can bring all the other sides and desserts. You can even ask them to bring those heavy drinks. You will just need to provide an ice chest with ice. Maybe someone can even bring the ice. I avoid all things heavy if I can.

Keep It Simple! You know me...I love KISSing things up, so of course I am going to KISS up the fourth. I am even wearing nice red lipstick for this KISS occasion. If you are hosting the party this year (Best if you are a guest in my book), keep it simple. I find that if I just add music, the party is on!

Divvy up the prep among as many people as possible. If you have other family members in your home, assign them jobs to do. And remember that this is suppose to be fun. Don't worry about cleaning all the nooks and crannies in your home....hopefully the party will be outside. One of my favorite tricks is to close all the doors to rooms that will not be used. That cuts down cleaning to a minimum. And assign the few rooms left to other family members to spruce up.

The most important thing to remember this fourth is that this is a celebration of independance. Declare your independance this fourth from your old way of doing things and try something more ra friendly!  Even if that means staying in, eating bought food and watching the fireworks on tv.

Have a wonderful fourth of July. And for my US readers, I would love your comments on how you plan on making this fourth more ra friendly.  For my readers that aren't in the US...I challenge you to try one new ra friendly thing this weekend and let us know how you celebrated your new found independance.

My RA Bedroom...the ABC's of getting some zzzzzzz's

My RA Bedroom:

I think I picked this room first to apply my KISS principle to because it is one of my favorite rooms in my home and because I use this room so much.

There are several good blogs written on the best mattress to select when living with ra and rather then rehash that topic, I am providing you with the links below for you to check out yourself. But the short of the mattress matter is two types seem to be rising to the forefront with ra sufferers: the sleep number bed and the tempur-pedic mattress. Both of these beds sell adjustable electric frames which allow you to raise or lower the head of the bed as needed.  

about.com - Best Mattress For People With Arthritis

Health Guide Info - The Best Mattresses For People With Arthritis

Now you are probably asking yourself what type of bed does Deb own.  I am still using my mattress from almost ten years ago but I suspect that within the next two years I will be venturing down the mattress shopping isle.  I currently own a pillow top type that I paid over $1,200 for ten years ago. Mattresses can be expensive and I am trying to hold off for as long as possible.  I am not sure which mattress I would buy but I have had the opportunity to sleep on the tempur-pedic mattress for a few weeks. It was a little too hot for me. And I would have to check carefully on the sleep number bed as I have kitties. Kitties have claws and I am not sure how kitty claws would do on an air type bed. I am still up in the air on my decision.

I am going to cover pretty much everything else that might make living with ra easier for you in your bedroom. Call this my wish list for the most functioning ra room around.  But, just like medications, our bedroom must work for us.  Surround yourself with what works for your ra and your particular challenges or needs.

The RA Bed:

1. Various pillows that contour to your body (maybe even a full length body pillow for those hard to sleep nights) but not so many that they overtake your bed. And you may want to consider a good support pillow for reading.
2. Set of cotton sheets that are large enough for ra hands to easily make the bed (of course as I have previously written…if you can hire housekeeping help, by all means do it!). I say cotton because often we with ra sweat at night and for me the cotton has worked best with this problem. I love all things cotton!
3. A lightweight summer cover like a quilt for the bed during the summer. Again I prefer cotton.
4. A lightweight  comforter for the cold months (the key here is lightweight!) or an electric blanket if you prefer to snuggle under. The more layers you put on your bed, the harder it is to make the bed. I have an alternate down one in white as I have down allergies and down can be heavy.

Everything else in my ra bedroom:

1. remote controlled fan
2. flat screen tv mounted on the wall for easy viewing and a no strain neck position along with a dvd or blue ray player.
3. A solid chair that you can use for sitting or when you need to put your shoes on. I prefer one with arms as they help me to get up and down.
4. Dressers with big knobs. I use to have a dresser with handles but my fingers often got stuck in the handles. Knobs can be harder to grab but they work better for me personally…no more trapped swollen fingers.  If your current dresser does have tiny knobs you might want to change them out with bigger ones. Use what works best for you. And drawers that don't require two hands are always better then drawers that do.
5. A nightstand with big drawers to fit all of my ra medications, rubbing creams, and pain patches on my side of the bed. Nightstands are great in bedrooms whether you have ra or not but I feel they are essential for people with ra.  Mine also has a nice shelf on the bottom where I keep my current reading materials. If you have small children in your home, you probably shouldn't keep any medications in your night stand where the webbies can get to them.
6. Lamps with touch control.  I don't have these types of lamps anymore as I have kitties….you get the picture here. I do miss my lamps!
7. Enough room on the side of your bed where you can leave your slippers on the floor. I must have slippers on my feet at all times when I am in my home. I have bad ra in my feet. To be honest I also keep a pair of sneakers at my bedside because some days my feet are too bad for slippers…I need the running shoes with the support on my feet before I get up and get moving at all.
8. An outlet close enough to your bed to plug in your laptop computer so you can read my blog easily (just kidding)  and any other electric things like an electric blanket or heating pad. But be sure that the cord runs along the wall and doesn't lay across the floor which would make it a tripping hazard.
9. No extra throw rugs anywhere in the room. Throw rugs tend to trip up people with  ra no matter how well taped down they may be.
10. Have clear access on at least one side of your bed if you use a wheelchair. And there should be enough room to maneuver the chair easily to access the dresser and closet in the room.  A lower dresser will be needed if you use a wheelchair. And you may have to downsize your bed to accommodate a wheelchair if this is a new ra accessory for you. 
11. Room enough on one side of the bed if you have a walker and room enough to maneuver easily around the room.
12. If you have a cane then you may want to consider a way to ensure that it doesn't fall over when you aren't using it. Maybe an umbrella stand or if your hands are capable enough a fastener or hook on the wall to keep it off the floor completely.

For me ambiance is critical in my ra bedroom:

1. Choose colors that will soothe you. 
2. surround yourself with artwork that lightens your mood.
3. be sure your windows have room darkening capabilities. Sleeping with ra can be difficult enough, having the sun blaring you in the eyes will just make it that much worse. Daytime naps are often needed with ra. And least we not forget. 
4. a radio or cd player so you can surround yourself with your favorite music or a cd player with headsets at the very least.  
5. I also have scent ports in my room that I fill depending on my mood. Scents can help to lift your spirits or calm your frayed nerves. There are also natural scents out there if you prefer.

But do keep in mind that if your ra room is made too comfortable, you will have your entire family wanting in on this new great ra retreat. Anyone say sleepover!

Additional reading:

Tips on Making Your Bed: Arthritis Foundation

How To Buy Your Best Mattress: web md