Archive for the ‘For the newly diagnosed’ Category

Where Is the RA Help Button?

RA easy buttonWhat, There’s No Easy Button?

Once a blogger I know mentioned how easy it would be to write a Rheumatoid Arthritis help blog. “Just write the tips you learned that make it easy to live with RA.” I just said, “Thanks.”

 Of course, he did not realize that living with RA is difficult. And that there is not something we can do to make it easy. It’s too exasperating to explain sometimes. That’s why RA’ers are so grateful to find one another – it’s like finding a friend who already knows you.

Rheumatoid Arthritis help wanted

Sometimes we joke about being a professional patient because managing RA is like a part time job. It gets a little easier after a few years when you get used to it. Here are 20 tips I’ve found that I need to know about the management of Rheumatoid Arthritis. I can promise you it won’t make it easy.

There’s something else that’s really important – trying to find a good doctor. Here are 21 things you need to know. But it might not make finding a good RA specialist easy.

Of course, you’ll want to get a peek at all your doctors’ notes before you pass them on to the new RA specialist. It’s best you find out what is in there before the new doctor does. Sometimes, there is surprising news: one friend of mine found some bizarre facts about herself that she would never have known. She’d never heard that she had five children!

When the big day comes, you’ll want to be prepared to meet the new Rheumatoid Arthritis specialist. There are 11 things you might want to bring with you.

When you have RA, help is everywhere

For those who live with RA, help is everywhere. Use the word Rheumatoid Arthritis a couple of times in an email or a Google search, and the ads will begin to pop up like crabgrass with all kinds of tips to live easy with RA. Here’s the dish on which tips in the Arthritis Foundation book are good and which are less… easy.

Speaking of easy RA help, good luck finding the RA diet cure. It’s not here on my Rheumatoid Arthritis diet tips post! That’s for sure.

Life is hard enough with RA. Help for RA sleep problems would be nice. There are so many great suggestions from readers on that RA sleep series; you might fall asleep reading them.

And it will be good that you got some rest.  Maybe you’ll begin one of those many hard projects which have been piling up due to RA. I have a couple of ideas about how to get started.

Recommended reading:

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Meeting the New Rheumatoid Arthritis Specialist

Doorbell through frosted glass

11 Things you might bring with you to the new RA specialist:

  1. Person: Bring someone to serve as a witness who also provides moral support. Choose someone who believes in you and will back you up one hundred percent. For example, choose someone who has seen your disease at its worst. Discuss in advance the role they should play. Do you want them to have the freedom to interrupt?
  2. Questions: Some doctors are willing to look at a list of questions. Others prefer you only ask questions verbally. Regardless, carefully prepare your most important questions in writing so that you won’t forget what to ask.
  3. Records: Bring all relevant medical records or lab results. It takes time to prepare and maintain your own set of records, but it is worth it for several reasons: You have them whenever you need them.  You can know exactly what is in them, even having errors corrected. You can use them to make certain that every lead is followed. If this is a first visit, bring a folder with copies of relevant labs and doctor notes to hand over to the office to be added to your new chart.
  4. Information: This one is the stickiest. Not because the toddler got PB&J on your folder…  Surveys show that doctors are much less likely to use the internet than patients are. I’ve seen this firsthand. One doctor told me that she barely can email. Another laughed in my face at the mention of the internet. The radical website I mentioned? National Rheumatoid Arthritis Society (NRAS). Choose carefully what information to hand a doctor. Choose things like professional journal abstracts or articles on reputable websites like Johns Hopkins or Cleveland Clinic or a mainstream news source. Don’t expect him to respect information from a forum discussion whether or not it’s correct.
  5. Notepad & pen: Bring something comfortable to write down what you might want to remember. There might be a question to ask the doctor when you get a chance. There could be something to look up online when you get home. Maybe there will be instructions about how a prescription should be administered.
  6. Meekness: Doctors are notorious for being defensive with patients who try to be involved in their own treatment plan. Hopefully, you’ll find one who is humble enough to have a productive conversation. Either way, you can do as much as possible to be respectful of her knowledge and the many years of training it took to become an RA specialist.  It’s easier to be nice if you realize that the last patient may have handed the doc a spam sandwich full of crazy ideas printed from the internet.
  7. Moxy: Being polite does not mean being a doormat. The reason for the appointment is your own health, not anyone’s ego.  It is vital to your health that you learn to clearly advocate what you need. Only you can inform the doctor of things that only you know such as how much pain you feel or whether a medicine is bringing you relief. If you have any concern, you should be able to discuss it. If you are told there is not time, politely ask for the time to have it addressed through another appointment or a short phone call.
  8. Symptom / pain diary: If you keep any kind of symptom journal or calendar, bring a copy for the doctor to see. Make sure that any symbols or abbreviations are clearly explained. Ask that it be added to your chart.
  9. Open mind: Hopefully, you have chosen a good doctor who can offer you expert advice. Listen carefully to ideas that are new. You don’t have to accept them, but you should at least examine them.
  10. Sweater:  In the USA, I have not been in a doctor’s office which is not at least 10 degrees Fahrenheit colder than the freezer section of the grocery store. If you wear layers, you can be comfortable with whatever the temperature is. This eliminates either sweating or shivering which can make you look and feel more nervous. I bring socks if I know that I will be made to disrobe.
  11. Rolodex: Just kidding. But always keep in mind that you can use this when you get home. It may relieve some pressure to keep in mind that if this doctor does not listen or does not know the answer you need, you can try again. Yes, it’s exhausting and demoralizing to have to start over with another specialist, but you should have another chance if you need it.

Recommended posts:

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20 Tips for Managing Your Rheumatoid Arthritis Treatment

Taming an alligator

Management of Rheumatoid Arthritis as a partner with a Rheumatoid Arthritis specialist

I’ve answered so many questions from RA’ers who are unsure why their rheumatologist makes certain decisions. Why does she/he prescribe a certain Rheumatoid Arthritis medicine? When do I need that test? Should RA’ers cooperate blindly with the doctor? Or discretely refuse to comply?

Wouldn’t it be better if there could be a productive discussion? I know that communication is not always marvelous between patients and doctors. We have plenty of suggestions for how doctors can improve their part. However, here are a few things that we can do to have the best stab at a productive relationship.

  1. Get lab work completed promptly. Request your own copies. Keep them in a file with all of your test results.
  2. Look up information about lab test results online to become familiar with what the terms mean.
  3. Ask the doctor to explain exactly what any lab test indicates. If you don’t understand test results, ask him to explain them to you.
  4. Always bring an updated list of your medications and any major changes in health-related factors.
  5. Ask the doctor to explain exactly what any prescription is intended for and what the benefits are for you.
  6. Specifically discuss anything that you suspect to be a side effect of RA medicines.
  7. Bring a list of the top 2 or 3 things that you want the doctor to address during an appointment.
  8. Bring a notebook to write down instructions from the doctor or details you may want look up later.
  9. Ask questions about anything you do not understand. Be understanding if he/she needs to schedule another appointment to discuss lengthy questions.
  10. Bring someone with you to help you to remember any details or provide moral support.
  11. Clearly explain to the doctor how Rheumatoid Arthritis is affecting your work. Be specific about what you are unable to do due to RA.
  12. Convey specifically what Rheumatoid Arthritis symptoms prevent you from doing at home.
  13. Tell the doctor where it hurts.
  14. Obtain copies of reports for all diagnostic imaging such as x-rays. Keep them in a file. Make sure that you understand the reports. Ask questions if necessary.
  15. Forward any reports from other doctors that you are seeing if they are at all relevant.
  16. Politely request copies of doctor’s notes so that you can see his impressions of each visit and your case.
  17. Ask him /her about any comments in your file that you do not understand or with which you do not agree.
  18. Always bring any insurance identification and documentation. Communicate with office manager about any outstanding balance so that they know you are being conscientious about your account.
  19. Follow office rules whenever possible like wearing no cologne or rescheduling appointments in a timely manner.
  20. Learn as much as possible by reading about Rheumatoid Arthritis in reputable books and websites.

The difficult job of managing Rheumatoid Arthritis treatment

It’s not easy to be an advocate for ourselves. It’s hard to tell others about the Rheumatoid Arthritis pain that we fear makes us sound hypochodriacal. Neither do we want to make requests that may make us appear pushy. It is much easier to advocate for others.

However, we must approach our Rheumatoid Arthritis management in ways which are respectfully assertive. We need to be as clear and specific as possible when we discuss RA symptoms, RA treatment, or other RA-related issues. We also need to be well-informed so that we can make objective decisions which will be best promote our health.

Recommended reading:

21 Things to Know About Finding a New Rheumatologist

Causes of Rheumatoid Arthritis: Are There New Clues?

Medical Records Tip for Rheumatoid Arthritis: Read the Doctors’ notes

What is Remission of Rheumatoid Arthritis? Part 1

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21 Things to Know About Finding a New Rheumatologist / Rheumatoid Arthritis Specialist

 
are you feeling cornered

What to look for in a rheumatologist:

  • Asks questions, listens for answers.
  • Makes eye contact. Shakes hands gently.
  • Education is recent or up to date. Attends American College of Rheumatology (ACR) meetings every year or so.
  • Encourages patients to become informed, educated about RA.
  • Welcomes friend or family member as an appointment companion.
  • Views you as the manager of your treatment plan, seeing you as a partner.

Where to look for a rheumatologist:

  • Ask friends, other doctors, pharmacists, nurses, and hospital staff. (I had medical records clerk warn me about a particular surgeon with a reputation for being abusive. Eventually, I witnessed it myself. I should have listened to her. )
  • Use a wide radius: be willing to drive an hour or two.
  • Try to use a university or teaching hospital. The doctor will be more up to date on current studies and treatment.
  • Search doctor rating websites for lemons and gems. Trysites like angieslist.com, RateMDs, Vitals, Vimo.
  • Use the phonebook to call rheumatology offices, asking pertinent questions.
  • Cross check credentials, education, or pertinent questions online. Try Google, Facebook, MySpace.

What to do when you see a new rheumatologist:

  • Make an appointment, saying that you are hoping to find a new rheumatologist. (Yes, this sounds like you are trying them out. That is the point.)
  • Obtain all records and make copies for the new doc’s office. Offer to pre-send your records if the doctor prefers.
  • Fill out as much paperwork as possible ahead of time and try to arrive early.
  • Type up a summary of past and current RA-related issues and treatments. Include lists of current medications and all past RA-related medicines.
  • Be appreciative, cheerful, and polite.  Try to make friends with the staff.
  • Bring someone with you to help understand & remember what was said.
  • Listen to the doctor’s opinions, even taking notes. Ask pertinent questions.
  • If you are treated very well, consider sending brownies or flowers. (Good people deserve to be recognized, even if they are just doing their job.)
  • Do not go back if you are treated disrespectfully. Tell them why you cannot come back.

Recommended reading:

Psoriatic Arthritis

Rheumatoid Arthritis and Medication: Are Natural Medicines Better?

Mistaken beliefs about an RA blog?

The Onset Story project

The RA Kitchen project

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Is there a blood test for Rheumatoid Arthritis? Part 1

Yes and no. There are at least four. But, actually, there is none.  Allow me to explain…

Do the Rheumatoid Arthritis tests pass the tests?

 What are the tests?

1) Rheumatoid Factor

For the last few decades, Rheumatologists have relied heavily enough upon the Rheumatoid factor test that it is part of the American College of Rheumatology (ACR) guidelines for diagnosis. However, many Rheumatoid Arthritis patients do not have high enough levels of this antibody to be considered “Rf positive.”
Those RA’ers are referred to as “seronegative.” Sometimes, I think they are considered the stepchildren of the RA community. Too often, they are initially told by their doctors that they do not even have Rheumatoid Arthritis. Of course, that makes it impossible for them to receive that “early aggressive treatment” which the ACR is now urgently recommending.
The Rheumatoid factor is actually only one of the antibodies which can be found in people with Rheumatoid Arthritis. I think it got to be the one called “Rheumatoid factor / Rf” because it was the first one identified. It is an antibody to immunoglobulin. It was discovered in 1940 using sheep blood cells.
Another problem with the Rf test is the number of false positives. At least 2% of the general population test Rf positive.
  

2) Anti-Cyclic Citrullinated Peptide

The anti-cyclic citrullinated peptide is another antibody (immune protein). It is directed against certain amino acids (peptides) containing citrulline. It is often called the anti-CCP.
The anti-CCP has excellent prognostic value because it is strongly associated with more aggressive forms of Rheumatoid Arthritis. This is also a more specific test, which means that, if it is present in the blood, there is a 90-95% probability that there is RA. And CCP antibodies are often present in blood years before symptoms develop. It could be used to pursue early diagnosis for the all-important “early treatment.”
  

3) Sed Rate

The erythrocyte sedimentation rate is also called the sed rate or the ESR. The sed rate is a simple screening test. Blood is allowed to settle in a test tube for one hour. The reading or “rate” is the number of millimeters of red blood cells that fall to the bottom of the tube in one hour.
The sed rate is considered an inflammatory indicator. High rates often correlate with inflammation. An extremely high sed rate is often the first indicator of a cancer tumor, for example. However, a sed rate itself is not diagnostic, so it usually leads to more tests.
Sed rates can be unreliable unless the blood is handled properly at all times. There are also several conditions other than inflammation which can influence the test results. High sed rates are considered strong indicators, but normal ones are less conclusive.

4) C-Reactive Protein

The C-reactive protein is often referred to as the CRP. This is also a non-specific marker of inflammation. High results indicate acute inflammation. CRP’s are also being used as a measure for heart disease.
However, many physical conditions can either raise or lower the CRP. The patient’s diet or medication regimen can alter a CRP result. There is also a more sensitive version of the CRP test, called the “high sensitivity C reactive protein assay.” (We will have much more on the CRP in the next post!)
Are these tests adequate?
  
Next time, we will look a bit deeper. Exactly how accurate are these tests? How many RA’ers fail them?
  
A few footnotes:
Related posts:

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Can I Delay Treatment for Rheumatoid Arthritis? part 2

Is it safe to delay Rheumatoid Arthritis treatment?

If you re-phrase this question six different ways, and search using Google, you will get a lot of good information about why Rheumatoid Arthritis treatment should NOT be delayed. So, I guess that’s the Google-vote. But most of us do not make decisions based upon a Google-vote. We need more rationale than that.

 

So, why do some delay treatment for Rheumatoid Arthritis? Let’s examine a few reasons.

Fear:
The side effects to RA medications are startling to behold. Perhaps there is fear that the medication will be worse that the Rheumatoid Arthritis. There may also be a misconception that RA medications are all addicting and will cause lifelong dependence.

Most of the time, the best therapy for fear is information. For example, medicines prescribed for disease control (DMARDs) for RA are not considered addictive. And learning about what Rheumatoid Arthritis can do to a body goes a long way toward making the medicines sound downright safe.

Of course they are not completely safe; but neither is driving a car, walking across the street, or eating rare meat. However, all of them are safer that living with untreated Rheumatoid Arthritis.

Uncertainty:

Not knowing what to do can make any problem worse. So much is unknown when it comes to Rheumatoid Arthritis. We don’t know what causes it. And we can’t say why some fare so much better than others.

However, evidence is piling up that early and aggressive treatment of Rheumatoid Arthritis may be our only hope to reduce future disability. Listen to the doctors at the University of Kansas Hospital: “Early treatment may significantly control the course of the disease…” And NIH says: “Early, aggressive treatment for RA can delay joint destruction.”

No, they can’t tell you why you have RA. They can’t tell you how bad it will get. The cause and the cure are both uncertain. The only thing that is certain is that studies have shown that for some RA-ers, early treatment can slow damage.

Remitting RA:

Rheumatoid Arthritis that remits is more difficult to track. For those who have remitting RA, the disease can lessen at times so that life seems normal. Palindromic Rheumatism (or Palindromic RA) can remit for even long periods. One can go crazy trying to figure out what brings on flares or remissions. However, if Rheumatoid Arthritis symptoms are recurrent, it is important to get thorough exams to determine whether damage is occurring.

Hopelessness:

Sometimes it seems like relief is an impossible dream. Going on the RA meds is akin to wrestling with windmills. Even the folks we know who are using DMARDs have not gotten well. Why take all the risks if it might not even help?

That’s a really tough one. There is NO promise that the medicines will even work! But, some things are sure: Hope can grow stronger if we work at it. And it is worth the trouble because God has a purpose for each of us. Your loved ones need you to survive. Every life is worth living.

Denial:

As I explained in yesterday’s post, it is actually very easy to convince yourself that you are not sick enough to need treatment. Of course, nobody really wants to believe that they are sick enough to need chemotherapy. Actually, you can get a lot of help in this: others would also prefer to believe that you are not that sick.

Denial is useful as a mechanism for managing crises. It is an excellent temporary help in times of tragedy. However, it tends to wear out its welcome… When the time has come to deal with a problem, we might have to throw denial out like bad food.

More?

Maybe you know other reasons. Please use the comment box to tell us about them.

Recommended reading:

Remember: 60-2-3. That’s 60%; 2 years; 3 months
“Studies have shown that damage to joints occurs in 60% of people with rheumatoid arthritis within 2 years. Because irreversible joint damage, chronic pain, and long-term disability can occur if rheumatoid arthritis is not diagnosed and treated early, it is now recommended that a person with rheumatoid arthritis see a …rheumatologist within the first 3 months after symptoms appear. As soon as rheumatoid arthritis is diagnosed, early treatment includes medications known as …DMARDs.” (University of Kansas Hospital)

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Functional Measurement of Rheumatoid Arthritis

With Rheumatoid Arthritis, pain and disability both are important

It’s not just “Where does it hurt,” but also “What are you able to do!”

There are many ways to measure RA. Of course you’ve heard the pincushion jokes. But, blood work is the simplest way to get a picture of what Rheumatoid Arthritis is doing in a body. Sometimes x-rays or other scanning devices can detect damage.
 
Actual disability is more difficult to appraise, though. Certain symptoms such as pain, stiffness, and weakness are tough to measure. However, they are important indicators of disease severity and progression.
 
Some doctors might ask patients, “Were does it hurt?” or “How bad does the pain on a 1 to 10 scale?” But, there is another question which is just as important. It is, “What can you do?”
 
Over the years, doctors have developed several instruments to gauge the disability that Rheumatoid Arthritis causes. They include the Health Assessment Questionnaire (HAQ), the Keitel function test (KFT), and the Arthritis Impact Measurement Scale (AIMS). They attempt to record limitations in joint motion and difficulty performing certain tasks.

Functional status, Rheumatoid Arthritis pain, and disability

The goal is to have a more objective way to measure, record, and predict ability to perform the daily tasks of life. That is sometimes referred to as “Global functional status.” See image; click on it to enlarge it.
 
Patients are classified according to their ability to perform activities related to these categories: self-care (bathing, dressing, grooming); vocational (job-related tasks); avocational (pleasure or hobby- related tasks). There are four labels based upon which types of tasks a patient can perform.
 
Measuring functional capacity at the time of diagnosis of Rheumatoid Arthritis is important. It is a strong predictor for functional status later in the disease progression. The severity of the Rheumatoid Arthritis (as judged by functional status) is an even more accurate predictor of future disability than is the duration of the RA.
 
Believe it or not, poor functional status is even useful for predicting (long term) mortality in Rheumatoid Arthritis. I don’t point that out to scare you, but only to explain why researchers confirm how critical functional status assessment is to your treatment. It is vital to discuss your functional status with your doctors. It is an essential part of your care.
 

What should we do?

 We should carefully fill out any forms which our doctors provide which ask for details about what kinds of tasks we can do and how difficult it is to perform them. We can also compare that to what we were able to do in the past (for example, one year ago or before we changed medications, etc).
 
Personally, I also suggest that we provide our doctors with 2 short lists:
1) Tasks which we can currently accomplish, indicating level of difficulty, or amount of medication required to do them;
2) Tasks which we can no longer perform.
 
On a less serious note, this reminds me so much of those kindergarten report cards for little tasks: She needs help to tie her shoes; she feeds herself neatly; handwriting is barely legible; cleans up well, but needs encouragement. Let’s hope ours also says: shares and plays well with others.

 NIH citation Rheumatology journal abstract

Recommended reading:

Another dr. appt tip: Medical Records Tip for Rheumatoid Arthritis: Read the Doctors’ notes
What to expect from RA: The Four Courses of Rheumatoid Arthritis, part 1
Does a blog make it better? Mistaken beliefs about an R A blog?

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Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment

There is a difference between disease control and pain control for Rheumatoid Arthritis.

There is no cure for RA. You probably gathered that from yesterday’s blog. However, there are medications which can curb many of the effects of RA by actually cutting it back.

These are the medicines referred to as DMARDs: disease modifying anti-rheumatic drugs. The most common are methotrexate and Plaquenil. There are others, but those are used the most today because they are considered the most safe and effective.
 
Biologics like Humira, Remicade, and Enbrel are also used to attack the disease. Think of them as a newer subgroup of DMARDs. For a very few people, DMARDs bring on a thorough remission of the Rheumatoid Arthritis.
 
If you have taken them, though, you know that they are not a cure. They reduce the disease by attacking the immune cells which attack us. But those immune cells continue to multiply and fight back. That’s one reason that I say this is like war.
 
The disease has its weapons – various B and T cells and the cytokines they produce. And you have yours – medications, nutrition, and various therapies. If we had a cure for Rheumatoid Arthritis, then we could fire that ONE weapon and be done with it. Someday we’ll be there.
 

Dealing with leftovers

Meanwhile, back at the ranch… We sit in our tank and fire our big DMARD guns at the RA. And we cut the enemy down to a more manageable size. But, then we still have to deal with what I call the “leftovers” – the many symptoms of Rheumatoid Arthritis which are left after the DMARD has worked its magic.
 
To fight those, we use “extra” medications which include the following:
  
Steroids, which reduce inflammation quite effectively;
NSAIDs, which also reduce inflammation and pain, but less effectively;
Various other types of pain relievers or pain blockers, including narcotics;
Treatments, therapies, and medications for every other extra-articular symptom of RA such as drops for dry eyes, iron for anemia, heart disease medications, anti-depressants, or medications for relaxation and sleep, yoga, and massage therapy.
 
As warriors against Rheumatoid Arthritis, we usually try to take as little total medication as we can take – and still be able to live our lives fully. Most RA patients live with lots of “leftover” pain.

Why do RA patients live with leftover pain?

There are 3 reasons for this:
  1. We want to protect our organs from permanent damage due to long term use of too much medication.
  2. We want to avoid side effects of medications, which often compound some symptoms of the RA.
  3. We do not like being judged as weak by others because we are dependent upon medication.
It can be hard when you are deciding whether to take more medicine so that you can get out of bed or whether you want to save your stomach, liver, or kidneys. It’s like a game of Risk.
 
It is war. So we need to be strategic. If we are going to use any “big guns,” then they should be the ones which can do the most damage to the enemy.
 
If we were shopping, we’d ask: What will give me the most bang for my buck? Usually, that means giving priority to taking whatever combination of DMARDs will provide us the most disease control possible. Then, after that, we decide how we’ll go after the leftovers. We have to – so that we can function.
 
It’s not a perfect strategy, but it will do until the cavalry comes – with a cure.
Recommended reading:

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