My relationship with methotrexate

Side effects are the reason for the fight I describe in one of the about pages. There’s this fight I have every week; it’s a fight with myself. It’s the struggle to give myself shots. So far I always win – I mean lose. I’m not sure.

No one with Rheumatoid Arthritis loves methotrexate.  It’s like a difficult marriage that you can’t leave. In either case, there are good reasons to stay on course, but it can get ugly.

There is no love, but maybe I respect methotrexate. I know it is “medicine” and that’s a good thing. I know that Biologic medicines are supposed to be taken with methotrexate. I know I need to take the methotrexate to fight my RA, so I do it, grateful that I have medicine.

Sometimes I wish I did not “know” so much. There is no way that I would tolerate these methotrexate side effects for five minutes if I did not believe I absolutely had to. Some weeks, the fight is harder than others. If I felt ill all day from the previous week’s shot, another shot seems inconceivable.  But eventually, I always do it.

Can methotrexate side effects get worse?

There are some longer term benefits with methotrexate for Rheumatoid Arthritis. Some patients continue to improve over time with treatment. But, side effects can wax and wane. At times, they worsen, but usually improve eventually. I’ve ignored this cycle more times than I’ve dumped email spam.

Lately waves of nausea are more like rip currents pulling me under. I feel like I’ve been kicked in the gut by an elephant – and I know how that feels since I really was once! It’s nasty.

If taking methotrexate lasts forever, then it is like being married to it. But methotrexate is like a femme fatale or fatal attraction. It doesn’t care about my feelings.

Fighting hard against methotrexate side effects

If I have to be married to methotrexate, then I’ll do my best to get along.  I can…

• Be proactive with my acid blocker every morning – it really does help.
• Chew little pieces of pink bismuth tablets even though I’m so tired of them – they do work on intestinal issues. That’s why people buy them by the box.
• Eat foods that help fight nausea such as hard peppermint candy, peppermint tea, ginger ale, bananas…
• Eat whatever I notice makes me feel better when I’m sick: For years, it’s been Fritos; maybe it’s the salt. Recently, I tried green olives since it was recommended by a Facebook friend who said they are given used by oncology nurses; they worked!
•  Force myself to eat simple healthy food that includes protein even when I don’t want to eat.

Does anything help you with methotrexate side effects?

Related posts:

• More thorough list of ways to manage methotrexate side effects
• Methotrexate Injections for Rheumatoid Arthritis
• Methotrexate Side Effects in Rheumatoid Arthritis Patients
• How well do Biologic medications help Rheumatoid Arthritis?

Note: Prescription folic acid is recommended at the time methotrexate is prescribed. Folic acid is assumed, so I did not mention it in the blog. However, I’ve met a couple of people who were not taking any folic acid due to clerical oversight. If methotrexate side effects are extreme or they do not improve, it may be a good idea to inquire of the doctor about increasing folic acid doses. Also assumed are regular blood tests. Please see Methotrexate and RA articles for a more thorough discussion.

Prednisone is the most common symptom treating medicine for Rheumatoid Arthritis. Medicines which fight the Rheumatoid Arthritis disease activity are called disease modifying anti-rheumatic drugs (DMARDs).  Rheumatoid arthritis usually requires both disease treatment and symptom treatment.

Lately, I’ve given a lot of thought to the prednisone Rheumatoid Arthritis issue. Like so many other RA issues, the prednisone one is huge. But we have to start somewhere.

Prednisone and Rheumatoid Arthritis themes

Looking over comments and messages, I notice some interesting themes.

• Dosage: Some medical sites like Johns Hopkins say prednisone is prescribed for Rheumatoid Arthritis in a low dose of five to ten milligrams per day. However, patients often mention doses as high as 30 or 50 or even 70 milligrams, at least on occasion. Of course they vary, but the numbers that patients give are consistently higher than what is on the books about RA and prednisone.
• Length of prednisone use: Typically, prednisone is described as a “bridge” medicine for Rheumatoid Arthritis. Supposedly, RA’ers use prednisone to temporarily help them manage symptoms until disease treatments become effective. However, patients describe using prednisone for RA for months and even years. I’ve personally been told of use as long as ten years by a few patients.
• Dislike for prednisone: This one seems pretty unanimous. Surveys say 80 percent of Rheumatoid Arthritis patients will use prednisone at some point, but it seems that none of them welcome its side effects. There is a long list of reasons RA’ers see prednisone as a mixed blessing.

What’s your experience with prednisone for Rheumatoid Arthritis?

How do you feel about prednisone? Were you surprised by anything about your prednisone experience? Do you think your experience was typical?

Recommended reading:

• Psoriatic Arthritis and Rheumatoid Arthritis
•  How well do Biologic medications help Rheumatoid Arthritis?
• 3 Reasons to Begin Using Rheumatoid Arthritis Medicines to Fight the Disease
• Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment

My heart breaks as I read emails and messages people send me about Rheumatoid Arthritis. Diagnosis is a common theme: “Do I have RA?” “Does my husband have RA?” “How can I know for sure about an RA diagnosis?”

How long did it take you to find a Rheumatoid Arthritis diagnosis? Did you go online to read during that time of searching and waiting? There’s a debate going on about how many people search online for medical answers, where they turn first, and who they trust most.

Like it or not, people are searching and asking because they need answers. I know I did. Have a look at this interesting article I read yesterday on E-patients.net. Apparently, according to the report discussed, half the people surveyed said they wanted to seek a doctor’s advice first, but only ten percent actually asked the doctor for an answer first.

Rheumatoid Arthritis Diagnosis page

Today, I’ve posted a new page on RA Warrior to help those come here searching about a Rheumatoid Arthritis diagnosis. Look on the main menu under “Do I have RA?” This page answers some basic questions like “What does an RA diagnosis look like?”; “What else could it be?” and “What tests should I run?”

Of course, this blog is written from  a patient’s point of view. It’s not for everyone, but that is what some people are looking for. The RA Warrior disclaimer page is here.

Recommended reading:

• Do I Have RA?
• Rheumatoid Arthritis Message Boards
• E-patient’s role in Healthcare Social Media: Do Doctors Hate Blogs?
• Dear Bridget Duffy from a Rheumatoid Arthritis Patient

Several readers have asked me Rheumatoid Arthritis weight loss questions. Is this confusing? Weight loss is actually a symptom of Rheumatoid Arthritis. There are several reasons. There is the typical appetite loss of RA, the anemia, and the fever that accompany RA. Also, methotrexate and other RA medicines can interfere with food absorption.

Rheumatoid Arthritis, weight loss, and confusion

RA patients with severe disease have historically been known to suffer malnutrition. “The increased catabolism raises resting energy expenditure, which leads to weight loss and reduced lean body mass, especially if energy and protein requirements are not met.  This phenomenon is recognized as ‘rheumatoid cachexia’,” Cambridge Journal article. Some studies showed a majority of RA’ers were malnourished.

However, weight gain can still be problem for many living with Rheumatoid Arthritis. Several facts of life with RA can lead to weight gain for many RA’ers. RA patients usually get less exercise, but what else is going on?

Things that necessitate Rheumatoid Arthritis weight loss

• Prednisone tends to make you gain weight.
• Muscle mass, which burns more calories, is lost with lowered activity level due to pain.
• It’s difficult to prepare healthy food when you are disabled. RA’ers may rely on convenience foods.
• RA’ers usually give up smoking and alcohol, which means weight gain for some.

RA Weight Loss strategies: What can be done?

• If you are well enough at times to do it, exercise. More on RA exercise.
• Eat frequent small meals to keep your metabolism up. More RA diet tips.
• Eat plenty of protein to sustain muscle tissue.
• Tell your doctor you want to include weight considerations in medicine decisions.
• Get family members to help you get the healthiest options. For example: To bring you a roasted chicken instead of fried chicken when bringing a meal or gourmet tea instead of a latte.
• Avoid empty calories. Spend them on things that could improve your health. More RA food strategies.
• Keep close tabs on thyroid levels. Being a middle aged woman & an RA patient are both risk factors for low thyroid, which causes weight gain.

Your turn. Tell us your best tip to lose weight with RA!

You might also read:

• Should Rheumatoid Arthritis Patients Exercise?
• Rheumatoid Arthritis Diet, part 2: Ten Easy Tips
• Comparing Risks and Benefits of Rheumatoid Arthritis Medicines

Rheumatoid Arthritis fatigue is a real tangible physical symptom of RA.  I’ve read so many frustrating articles about RA fatigue that sound like the writers can’t articulate exactly what it is. Maybe I’ll help them out since an RA’er knows firsthand…

Rheumatoid Arthritis fatigue can feel like the tiredness of a flu virus.  It can come at any time of day or night. RA fatigue is not always the result of physical activity. It can suddenly develop for no apparent reason. Rheumatoid Arthritis fatigue can last hours or days. It makes movement very difficult. It is not a psychosomatic condition.

Readers’ favorite tips for managing Rheumatoid Arthritis fatigue

• Budget energy wisely. Guard energy.
• Have a regular schedule. Or go to bed early.
• Do gentle modified stretching or yoga.
• Nutritious balanced snack such as protein bar and fruit.
• Get the best sleep at night possible.
• Get the best bed possible.
• Use heat to fight fatiguing pain.
• Eat on a regular schedule.
• Eat enough protein.
• Take small naps.
• Go until you collapse.
• Relaxation or meditation techniques.

My RA fatigue fighting favorite tips:

• Alternate periods of activity and rest.
• Check for deficiencies such as iron or vitamin B-12.
• Treat the disease as aggressively as possible.
• While resting, plan for what you’ll do when you are more able.
• Fruit juice & sympathy.
• Check for side effects of medicines. Take them at the best time of day to avoid fatigue.
• Accept the reality that the list will not be accomplished today.

What RA’ers resort to when nothing else works:

• Caffeine.
• When the body says, “No more, then stop.”
• Watch a movie.
• Take large naps.
• Delegate and oversee.
• Blue Kryptonite.

Recommended reading:

• For the fridge magnet: 13 Ways to Help People Living with Rheumatoid Arthritis
• RA Diet 101: Rheumatoid Arthritis Diet: 10 Easy Tips
• Why RA’ers don’t get enough rest: Rheumatoid Arthritis Sleep Issues
• It’s Not in Your Head: What Causes the Fatigue of Rheumatoid Arthritis?

Searching for proof for Rheumatoid Arthritis joints

Several people have recently asked me questions about which joints can be affected by Rheumatoid Arthritis.  Cindy’s post is a typical example. People write that they are worried because when they complain about an RA symptom, a doctor has told them something like this: “You cannot get Rheumatoid Arthritis in that joint.”

People ask me which joints can be affected by RA and how they can prove it to their doctors.  I’ve never had much luck proving anything to doctors myself, but I’ll give this my best shot.

My short answer: I have Rheumatoid Arthritis in every single joint. Two good rheumatologists and my general practitioner have told me, “Any joint can be affected by RA.” So, I know it’s possible. However, I don’t expect you to take my word for it.

My longer answer: There is a list below with lots of cool links to check out. It might also be interesting to read the posts and comments: What Is the First Symptom of Rheumatoid Arthritis? and Is There a Typical Rheumatoid Arthritis?

Often requested list of Rheumatoid Arthritis joints

List of specific RA joints, with links to the most frequently questioned:

• Rheumatoid Arthritis can affect every joint and most organs or systems. Joints include all in hands, all in feet, ankles, wrists, knees, elbows, hips, spine, jaw, vocal cords, sternum, and heel. There is a more detailed list of the ways RA can attack the body in RA 101 here.
• Spine: RA spine is so frequently discussed, it has its own post already here.  
• Fingertip or distal interphalangeal (DIP) joint. An article about DIP’s in November 2005 Arthritis and Rheumatism states, “DIP erosions occur frequently.” I have found many other articles which discuss cases of DIP RA. If you are wondering why so many RA specialists are confused about this, I found a neat explanation in 1966 issue of Arthritis and Rheumatism. Antique, but fascinating.
• Feet and toes: Check out the Institute for Foot and Ankle Reconstruction with a sad photo showing destruction typical in RA feet.
• Hip: 1995 Annals of Rheumatic Diseases report: “CONCLUSIONS — Early hip joint destruction giving symptoms mostly at a very late stage is frequent in RA. Ultrasonography rather than signs or symptoms could identify patients with hip joint involvement and provide a rationale for early treatment.” Nuff said.
• “Ribs”; actually, sternum:  A Medicine Net .com  article says, “Costochondritis is a common form of inflammation of the cartilage where ribs attach to the breastbone, the sternum.” Read details of this condition. It can occur with RA or other autoimmune arthritis such as psoriatic arthritis or Ankylosing Spondylitis. For a little more on RA rib pain, read this vintage 1986 newspaper RA article in New Kentucky Era.
• Lower back: See this 1964 Annals of Rheumatic Diseases article: Rheumatoid Arthritis of the Lumbar Spine. It’s a detailed article with lots of x-rays of the RA lumbar spine.
• Vocal cords: RA in the larynx is called Cricoarytenoid Arthritis.
• Shoulder: University of Southern California San Diego Medical Center detailed discussion of how to treat RA shoulder.

Bottom line about RA joints

1. Rheumatoid Arthritis in the spine is not rare. RA in the DIP joint is not rare. And Cricoarytenoid Arthritis is not rare. It’s frustrating to hear how people are doubted because the symptom they claim to have is thought to be rare.
2. Even if a symptom were rare, how does that help if it is you that has it? I hope you will always tell your doctor where RA hurts or disables you. It may require treatment.
3. I have read several books and magazine articles with lists or diagrams which restrict RA to a limited number of joints. It was discouraging to see that doctors were writing these books. They seemed so confused that I quit reading those lists a long time ago.

Recommended reading:

• Is There a Typical Rheumatoid Arthritis?
• What Is the First symptom of Rheumatoid Arthritis?
• American College of Rheumatology redefines Rheumatoid Arthritis, Part 1
• Can Rheumatoid Arthritis Affect the Spine

“Immortal” immune rebels attack Rheumatoid Arthritis patients

In healthy people, immune cells proliferate because of the presence of invading bacteria or viruses. After they have done their work, the extra immune cells kick the bucket. However, in Rheumatoid Arthritis patients, this natural militia continues to multiply. Immune cells called macrophages build up in the patient, producing cytokines and causing the painful destructive symptoms of Rheumatoid Arthritis.  

Methotrexate is used as a Rheumatoid Arthritis treatment because it is an anti-metabolite. It inhibits this un-natural reproduction. Methotrexate is no cure for RA. However, it is useful in repressing inflammation and pannus (thickening synovial tissue) to some degree in many RA patients.

Potential “ghostly” cure for Rheumatoid Arthritis

The February issue of Arthritis and Rheumatism reports about a molecule called “BIM” which has been studied in relation to cancer. BIM enables cells to expire gracefully. It causes macrophages to self-destruct.

BIM is being called the “ghost” molecule or “suicide” molecule because it sneaks into macrophage cells. Then it triggers apoptosis, the process of programmed cell death. It is healthy that cells die and be replaced.

In examination of Rheumatoid Arthritis patients, BIM was found to exist in lesser amounts. “The expression of BIM was reduced in RA synovial tissue as compared with controls, particularly in macrophages.” Researchers proposed that BIM has potential as a Rheumatoid Arthritis treatment.  

It would be an entirely different approach to treatment than any current medicine. Biologics attack specific cytokines. Methotrexate slows reproduction of cells. This conception is closer to a cure for Rheumatoid Arthritis than current treatments – if it works in human immune systems and if it can be delivered into human cells via nanotechnology and if it is found to be safe. Some big “ifs.”

Could BIM become a cure for Rheumatoid Arthritis?

Harris Perlman of Northwestern University Feinberg School of Medicine successfully used artificial BIM as a suicide bomber in experiments on mice with Rheumatoid Arthritis. For the majority of the mice, BIM either prevented or cured RA.

Perlman told Northwestern University Newscenter, “This new therapy stopped the disease cold in 75 percent of the mice.” Perlman says BIM has “potential for creating an entirely new treatment for rheumatoid arthritis.” His team was pleased they “didn’t see any toxicity.”

Note: Hear Perlman’s comment on this video at Insider Medicine explaining the BIM study.

Recommended reading:

• Funny but true: 20 Signs of Rheumatoid Arthritis in the Mirror
• Can we do anything about Rheumatoid Arthritis Joint Protection?
• What about Rheumatoid Arthritis and Depression?

It’s Lent – a good time to confess.

This is new territory for RA Warrior. This post is not like any before.  I’m going to ask you some surprising questions. But let’s back up…

Why I’m interested in Rheumatoid Arthritis swelling

About four years ago, my toe joints swelled to twice their normal size. Naïve to RA politics, I did not photograph them. Neither did my podiatrist.

After a few weeks, the swelling subsided. As I detail in my RA Onset Story, RA symptoms methodically spread to every joint in a neat symmetrical fashion. I was systematically disabled. Since then, I live with tremendous pain, stiffness, and disability. However, I never again saw that remarkable swelling I did at the beginning – only minor puffiness.

Over a year ago, I began to research RA swelling because my rheumatology doctor was puzzled and frustrated. Is that funny? Why didn’t the doctor do what I did? Oh well, on with our story.

Some Rheumatoid Arthritis swells and some does not

The fact of Rheumatoid Arthritis swelling is widely accepted. Most doctors say it is essential for active RA. When swelling subsides, they call it “remission.” But, is there any evidence for active RA which swells less often or less obviously? Some.

This article in Arthritis Research and Therapy shows how researchers often separate swelling and tenderness during research. If swelling were mandatory for “joint activity,” then why would tenderness be measured separately?

Writing for About.com, rheumatologist and author Dr. Scott J. Zashin says, “Just as the presentation of rheumatoid arthritis may vary between patients, so can the appearance of the arthritis. Some may present with prolonged morning stiffness and pain in the affected joints, but not have any noticeable swelling. Others may have significant swelling.”

RA swelling messages

When Dr. Google did not give me much help, I peeked at some message boards. Sure enough, there were some RA’ers questioning why they had little RA swelling. Next, I posted open questions about swelling to see if any would reply. I even posted my email address to allow people to privately confide their stories and the names of doctors who treat RA the same even when swelling is minimal.

The replies

Here are excerpts from what was sent to me last year. I have only changed names to protect identities. Donna: “No swelling with my RA.” Karen: “I always had subtle swelling. I can’t really see it.” Mary: “Kelly, I’ve had RA for 30 years. For most of that time I had no swelling… from time to time in isolated joints. I currently have none. I am on Orencia and MTX now.” Ellen: “Seems when it comes to swelling if there isn’t any, they tend to become uninterested. Swelling is not guaranteed with RA. I don’t know when it became a deciding factor. I have virtually no swelling at all.” Judy: “I have RA and don’t have nearly the amount of swelling my older brother does. At times his fingers swell up like sausages. My swelling is usually subtle and occurs primarily in wrists and ankles. I wasn’t even aware of the swelling in my wrists since I didn’t know what to look for until the rheumatologist pointed it out. I don’t think the lack of swelling has changed my treatment, but did delay a diagnosis.”Amy: “I too have no daily visible swelling, even though I have stiffness & pain. The swelling comes here and there, but nothing regular.”

New RA swelling research

This is the new territory. This is the first time I have ever solicited a response from you. You’ve heard my confession. I would like to hear about your experience. Please take a moment to answer specifically.

1. RA swelling?
   Do you have it all the time? Does a joint ever hurt and creak without much swelling? Has your pattern of swelling changed over time?
2. RA Inflammation markers
   Have you ever had a normal CRP blood test result while you still had RA pain? Do you ever have normal ESR / sed rate result while you still have RA pain?
3. Doctor’s comments
   Has your doctor ever told you anything similar to…? “I don’t understand why you say it hurts because I do not see swelling;” “Perhaps this pain is due to something else because your inflammation is under control;” or “Your joints look good. Your RA is under control. Maybe you need an antidepressant or….”

Related posts:

• Blood Tests for Rheumatoid Arthritis, Part 2
• Where Do You Find Rheumatoid Arthritis Information?
• So Glad Your Rheumatoid Arthritis Is Cured

Note: If you would prefer to answer privately, you may email me at kelly @ rawarrior.com, without the spaces. I cannot promise to reply to every email. I do promise to never use your name or email without your permission.