Tuesday, July 5, 2011

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.

10 comments:

Joan said...

Wonderful post! My docs have been pretty thorough and tested me for just about everything you listed. I've had a stress test too.

I hope you find that "side effect", let us know if you do!

Cathy said...

My wish list would also include a consult with a naturopath that would be paid for by insurance. I personally believe all disease has connections to other issues in our body and a good naturopath looks at every aspect of our life and helps lead us to listening to our own bodies so that we have more awareness where those issues lie.

Jan said...

Wow--you have given such good info that I will have to come back and refer to this as time goes on. Thank you. I feel lucky that my rheumatologist has done all those tests, even a lung function test, which surprised me, both with its cost and my low breathing ability which I had never known. Blah!

Melissa said...

This is a lot of good info! I just started on Plaquenil slightly over a week ago and my Rheumy has referred me to an Ophthalmologist, just waiting on an appointment!

Thrive With RA said...

Hi Deb,

Great information! I enjoyed reading about you on RA Guy today as well (http://www.rheumatoidarthritisguy.com/2011/07/real-profiles-of-rheumatoid-arthritis-deb/). I especially love the visual imagery, which I commented on. The butterfly photo was beautiful!

It was discovered post RA diagnosis that I had VERY low Vitamin D levels, but did not initially get this test done -- only after concern for future osteoporosis/osteopenia, due to being on prednisone was this test ordered for me.

I wrote an article about Vitamin D and the importance of this test, as there is a lot of evidence low vitamin D levels plays a vital role in the health of the RA patient, as well as everyone: http://thrivewithra.wordpress.com/2011/05/26/%e2%80%9cd%e2%80%9d-is-for-don%e2%80%99t-forget-to-ask-for-this-test/

Thanks again for the info.!

TWRA ;-)

Tiff said...

Can we add baseline joint x-rays to that list? I don't think I saw that on there. I wish I had something to compare my recent x-rays to. Beyond that I love it! I've had most of those tests done but I have a couple to ask my Dr about the next time I'm there thanks to you. :) I'm getting my very first DEXA scan at my next appointment and I am extremely curious as to what the results will be. Anyway, thanks so much for the lists! :D

Theresa said...

Absolutely amazing list! WOW....you SURE you don't have some sort of medical degree hiding under there somewhere?? ;-) This is fantastic - and in a format that is actually understandable. I am SO glad you posted on my blog! Nice to have found YOU!

Deb aka murphthesurf said...

Thank you all for your lovely posts!

Joan you are so fortunate to have found a good rheumie. This is key and I am glad he/she has you covered. We want you healthy and that is for sure :-)

Cathy, I couldn't agree with you more. I suppose I am so trained in the traditional format of medical things I completely neglected the nontraditional side of things. Right on with this one! And I added it to the post :-)

Melissa, welcome to our community and so sorry you had to "move" in with us. I hope this medication works for you but if for some reason it isn't the magic bullet, do know there is lots out there both tradition and nontraditional that might help you.

TWRA...I totally agree on the Vit D and I also did a post awhile ago on this very important vitamin. I say the more the merrier with important information and I look forward to discovering new things on your blog :-) Thanks for the comment over on RA Guys blog!

Tiff...done. I put it on the blog post. You are right, I was wrong to forget this one. It is really important. There was just so much I wanted to mention that is slipped through. It's been rescued though thanks to you :-) Good luck on the DEXA scan. And if you have osteopenia ask for a Vit D test also. Actually it doesn't hurt to take calcium w/ Vit D. We need both with ra anyway and the OTC should be OK. You can run it by your ra doc.

Theresa...nope no "official" medical training. Did volunteer for several years as a paramedic when I was like 17-19 but that was waaaaaaay long ago. I was a corporate trainer and I love to look into things and such. You are so sweet to have joined my blog.

Again...THANK YOU ALL! You are the best!

Tiff said...

Thanks for the suggestions. :) Luckily the Rheumy that I saw recently advised me to start on calcium and vitamin D, so I am A-ok on that front! I'm going to ask for a vitamin D test at my next appointment any way just out of curiosity. I think that the best thing we can do for ourselves is to research, research, research and you putting this list together makes it so much easier for us. :) Thanks again!

Deb aka murphthesurf said...

Tiff...thank you for the encouragement. When I was first diagnosed I kinda stumbled my way through alot. I did have a great online group (and still visit there often) but there was no list like this and so many new medications have come out. I know many need these meds to just get up in the morning but I am hoping this list gives them some empowerment. I am a firm believer in patient empowerment. Docs can be good and all but we are the ones living with ra 24/7. We know our bodies better than anyone and thus why I think we should be helping by reporting and asking about any new developments we notice, feel, etc. going on in us. I am Vit D deficient and I was also taking Calc & Vit D....go figure. Now I have had to add extra Vit D daily. And I also do go outside...weird.