No politics today
Tuesday, March 11, 2008 at 12:50PM No rants about local or national politicians today. Frankly, I don't have the heart for it right now.
Anyone out there either suffering from a chronic disease or have a loved one who does? I'm wondering about how you cope. My wife has rheumatoid arthritis, and right now I'm not doing nearly as well as I would like.
About 18 months ago, Becki developed a cough that refused to go away. (She doesn't smoke, never has.) For a time our family physician suspected bronchitis, and she went through a couple of rounds of antibiotics that didn't help.
A couple of months went by and she started developing pain in her wrists, fingers and knees. The cough got worse, and when she began to cough up blood we knew it was time to seek more specialized help, and we were referred to a pulmonary specialist.
A bronchoscopy followed by several MRI's over a period of about a month revealed something amiss in her lungs, but a lung biopsy would be required to get a diagnosis. Other diagnostic tests taken around this time indicated a very high "rheumatoid factor" in her blood.
The biopsy was performed in the hospital, a three day stay as it turned out. The day she came home she developed pneumonia and was out of commission for a month. Meanwhile, the pathologists were baffled by the tissue samples. We were told only that there was a significant amount of "necrotic" (dead) tissue in her lungs, especially in the lower part of her right lung.
The samples were referred to the Mayo Clinic. After several weeks they responded with a non-answer answer, saying only that the samples had the appearance of "non-organizing pneumonia" and "atypical tuberculosis." In their letter they thanked the referring physicians for sending them this "very interesting case."
The pulmonologist, Dr. Lemense, a great guy, suggested an appointment with a rheumatologist. In the interim, he prescribed a hefty dosage of prednisone. Becki was no longer coughing up blood, but the joint and muscle pains were getting worse.
We discovered that rheumatologists are few are far between in Knoxville, but we finally secured an appointment with Dr. Klipple at UT Medical Center. Several more rounds of blood tests and x-rays followed before Dr. Klipple was satisfied that Becki had rheumatoid arthritis. She started treatment with Arava and Mobic last August.
Arava is known as a "DMARD," a disease-modifying anti-rheumatic drug. Among other side effects it lowers the patient's white blood cell count, making one more prone to infections and opportunistic diseases. Mobic is what I call a supercharged version of ibuprofen, prescribed for pain. It comes with a suitcase full of side effects, including stomach and bowel problems. And, at least with Becki, it hasn't done much to control pain. Intermittent rounds of prednisone have thus far been the only successful pain-relieving therapies.
About a month ago Becki contracted flu. She missed two solid weeks of work, and since "recovering" her cough has returned, worse than ever. This morning the rheumatologist's nurse called to tell her her white blood cell count was dangerously low in her last blood test (she has to be tested monthly because of the Arava) and she needed to come in for another test ASAP.
Perhaps the most difficult thing for me has been watching this disease steal the joy from Becki's life. She's faced it all like a trooper, much better, I'm sure, than I would have handled it. She's doing her best to continue working (she's only 55), but every day is a struggle.
I become frustrated and - frankly - depressed because there seems to be so little that I can do to help her outside of making her home life as easy as I can. I've cooked a lot more meals and done a lot more housework in recent months. I try to do all the grocery shopping. But I can't do a thing to relieve her physical suffering.
Anyone else out there in a similar situation? What are your coping strategies?
Larry Van Guilder
I've received many e-mails and comments following my "No Politics Today" blog. Thanks to everyone who took time to write with suggestions. Some are RA sufferers, others have family members with RA.
The response has been uplifting. The realization that I'm not alone is worth more to me than I can express.
Thank you all.
Larry Van Guilder
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Reader Comments (48)
My mom also has rheumatoid arthritis, and is also a patient of Dr. Klipple, who seems very competent.
I don't know what advice I'd give, other than that you will have to make peace with your urge to 'fix things'... It's almost harder to be the one watching this than the one having it, and chronic illness is indeed very tough to cope with. Have you thought about joining a support group?
Good luck to you and Becki.
Thanks for your encouragement, Suzanne.
It sounds incredibly frustrating. Although most doctors mean very well, so many times they are just shooting in the dark. These days, you have to do your own research, get second opinions, and even then there are dead ends.
RA is tough because all the medications have awful side effects, and the new drugs- well, we just don't know what the side effects are going to be.
I think Becki had it right- you can't fix everything, some days are going to be better than others, some days are going to be worse. Every family goes through something like this every 10-15 years, so imagine that 5% to 10% of the people you pass by in the grocery store are affected by someone with a chronic (or worse) medical condition, you just don't know it, and imagine you're alone- not the case!
Nobody is superman/superwoman. You're allowed to have a down day, too. And making use of humor helps, too (for example, comfort yourself in the fact that you could be Eliot Spitzer....)
So sorry to hear about your situation (I enjoy your columns). Does your church have a Stephen Ministry program? SM's are listeners who can hang with you through tough times and transitions. Sounds like you are moving into the care-giver role to support Becki through a serious challenge to her health. Remember to take care of yourself, too.
As an adjunct, when you have the time and energy do *lots* of research--just because your doctor is good doesn't mean he finds the best treatment for an individual patient 100% of the time, maybe there's something better out there, maybe there's a clinical trial that your wife can get in, maybe there's a dietary something she can eat that will make it less bad, maybe there's something she's eating or doing that makes it worse. Maybe installing a hot tub/spa will give her some relief etc. etc.
There are LOTs of people working on cures and no one person has time to understand all of them.
Good luck.
Has she been tried on any of the TNF (tumor necrosis factor inhibitors) such as Humira, Enbrel or Remicade? They have good data and work well but also have a main side effect of immunosuppression (increased likelihood of infections).
Also, usually the first DMARD tried is methotrexate. It's been around the longest and is much cheaper than Arava but similarly has a potential side effect of bone marrow suppression.
In my experience use of a TNF inhibitor along with a DMARD and a nonsteroidal like ibuprofen has shown the best results. I would ask your physician about trying this approach if her disease is so debilitating.
My thoughts are with you both... It's not easy dealing with a situation like this.
The newer "biologic" drugs, which also operate by modulating the immune system but through another method than the traditional DMARDs, may be a route to try. For example, even though Enbrel and Humira are quite similar to each other, some people do well on one but not another. It's worth making the rounds among all the possible options to see which might work. I do very well (knock wood) on Enbrel.
The biologics can be expensive, but there are programs to help those who don't have sufficient insurance coverage for them.
I wish you the best as you and your wife tackle this condition.
As a rheumatologist, I know that RA an have several different presentations involving other organ systems, including lungs and nervous system. There's a variant called Sjogren's syndrome that also involvesw the lungs. The newer drugs like Humira, Remicade and Rituxan are sometimes very effective, but there are several studies that suggest they may cause certain lung problems. You might ask your rheumatologist some questions about these drugs, particularly the last one.
Good luck.
Primary treatment for RA is with inhibitors of TNF, or tumor necrosis factor. This has revolutionized the treatment and the lives of RA patients. With all respect to your doctor, this is the latest stuff on RA:
Seminars in Arthritis and Rheumatism. 2008 Mar 11 [Epub ahead of print]
Safety of Biologic Therapy in Rheumatoid Arthritis and Other Autoimmune Diseases:
Focus on Rituximab.
Fleischmann RM.
University of Texas Southwestern Medical Center, and Metroplex Clinical Research
Center, Dallas, TX.
OBJECTIVES: To review the safety of biologic agents used to treat rheumatoid
arthritis (RA) and other autoimmune diseases, with a focus on rituximab. METHODS:
Information was gathered from a search of the PubMed database and from major
congress abstract listings through June 2007. RESULTS: Rituximab is approved for
treating RA in patients with an inadequate response to TNF inhibitors and is
under study in other indications for RA and other autoimmune disorders. The
current safety profile of rituximab in RA is known from Phase II and III studies
conducted preapproval, treating approximately 750 patients, as well as from
long-term extension studies with repeated therapy. Clinical trials have
established that the most common adverse events are infusion-associated
reactions, seen in 29 to 40% of patients, most of which are mild to moderate and
occur following the first rituximab infusion, with incidence and severity
decreasing with subsequent infusions. Rates of infections and serious infections
to date are within the range expected for RA patients treated with other biologic
agents, but the longer term effects of B-cell depletion and the effects of
repeated treatment on the risk of infections are uncertain. Information is
limited for rituximab safety in other autoimmune disorders but current data do
not suggest that there is a significant difference in adverse events from that
previously reported. CONCLUSIONS: Rituximab is an important addition to the
rheumatologist's armamentarium for the treatment of difficult RA and ongoing
trials will determine its utility in other indications for RA and other
autoimmune conditions. The true safety profile of rituximab will emerge as larger
numbers of patients are treated in routine clinical practice.
Good luck
I am very sorry to hear about your wife's problems. For whatever it's worth I would seek out a doctor that also is trained in alternative medicine. I believe many of these maldies we contract are allergic reactions to something; food, environment, etc. I think it would be worth a try. It won't hurt.
My father was diagnosed with RA at age 78. He had infusion therapy with Remicade and my mother gave him a shot of methotraxate (sp) once a week. His RA is in remission and he is off the remicade. His white count did not drop too low but he developed a bad cough which has gone away with being off the remicade.
Good luck and God Bless. The therapy worked wonders for my dad, I hope they find something that works for your wife.
I can't speak to you or your wife's experience, because even the most common disease is an individual experience. I was 54 when diagnosed with RA, It began with a winter-long, dry cough. Nothing to be alarmed about, except that it was a new experience. I sucked on a thermometer several times that winter and temps were always normal (for me): below 98. After several months of this, the shoulder pains began. First one shoulder, then the other. Then it moved to my wrists, then fingers. Then the feet. Eventually, it took me a full minute to put on one sock.
I was referred to a rheumatologist who confirmed RA and put me on prednisone and methotrexate. Didn't work. Then we (I) tried entanercept (Enbrel).
It's a magic potion: one of those anti-TNF biologics mentioned above. Expensive, but a gift from heaven. I still have RA, but I'm symptom-free. There's no pain at all. That doesn't mean it'll work for your wife; I know one woman who can't take the stuff due to allergies. But it's worth a try.
Sorry to hear about your better half's tribulations, Mr. Van Guilder.
There are a number of autoimmune rheumatic disorders that can occur along with RA or be confused with RA. Some take years to develop.
Consider having your doctor perform a thorough review of your wife's results (and order new tests, if necessary) with an eye towards differentiating RA from one of these other, related (and sometimes concurrent) conditions.
Mixed Connective Tissue Disease
Sjogren's Syndrome
Systemic Sclerosis
Systemic Lupus Erythematosus
RA and the above are widely considered to be a result of the immune system attacking one's own systems. It has also been suggested that RA can be helped by eliminating certain foods from the diet that cause the symptoms to worsen.
I don't have specifics for you on that account, but there is anecdotal evidence that such an approach has greatly benefited RA patients. In other words, find the food (or foods) that affect your particular patient and eliminate them from the diet.
Wish you the best and relief for your wife. Mine, too, has intermittent bouts with arthritis (she's 39) and I fear I may be standing in your shoes in the years to come.
The tanning salon seems to be the most consistent form of relief for my chief of staff, but it only lasts for 3-5 days. She insists that the tanning bed must be a "high pressure" model to be effective.
Again, best of luck.
Look into the nightshade theory of arthritis. Google "nightshades" & "arthritis". You should find good info on the subject.
Read up on it, and then try avoiding all nightshades for a few weeks. I hope to hear that her condition improves.
Good luck
about 18 years ago I was diagnosed with psoriatic arthritis. It is an autoimmune disease like rheumatoid. It is arthritis accompanied by psoriasis. I was taking five different pills a day to control it. But it kept progressing until my doctor put me on Enbrel. It is a drug that attacks the source of the disease not its symptoms. It is a miracle drug for me. It stopped the arthritis in its tracks. I now take ONE injection a week of Enbrel and that's it. No more five pills a day. Get your wife on Enbrel quick. Ask her doctor about it. Enbrel combines with the TNF before it can attack her joints. I exercise, shoot basketball, bowl. Things I had a tough time doing before. If it works for her, she will be able to lead a normal life. Guaranteed.
I have psoriatic arthritis and fortunatly it isn't too bad a case. It took me several years to find an NSAID that helped me. I've probably tried 10 or 12 different brands before settling on Mobic. My doctor said that different people respond better to different drugs. Perhaps you can give a different one a try. I tried Enbrel but it did nothing for me. I haven't tried any of the other biologics because my insurance won't cover them and NSAIDs and Sulfa drugs keep my disease very manageable.
It was a tough adjustment to make. I used to be an avid rock climber and was learning to play the guitar when symptoms started to present themselves. I had to give up much of what I loved. I was angry for a few years but eventually I came to accept it. It was easier to accept though when the pain was reduced, I was able to sleep and I could resume a somewhat outdoor active lifestyle. I still must be careful to get enough rest. If I go several days with reduced sleep then I will develop laryngitis for a few days and experience strong malaise. I hope it gets better for you. It may help to find a support group. The emotional aspect of having a systemic disease can be overwhelming and alienating. A support group may help.
a post script. Enbrel users do face a chance of increased susceptibility to infection. But I work outside ( I am a mailman) and I have been on this stuff for five years now and have not missed any work or gotten sick. It is very expensive though. I have Aetna insurance and they do cover it. I pay a copay of $25 a month to get 4 syringes (one a week). I swear by this stuff
I read an article recently (from HSI) about a product called Arthriphase . I have no idea whether it works, but it seems pretty cheap to try if you're out of other options.
Same here, but with my wife it's fibromyalgia, osteoarthritis, clinical depression and bipolar disorder. Whee. My boss (a living saint) lets me work at home and not get much done for him while I do everything around the house. My advice is to do as much as you can (*try* to get all the groceries? come now...) and wait to get angry about it all until you're out of earshot of your wife. It's been 7 of our 11 married years, and I still get angry about it some way or another every day. Getting better, though, in that doing everything has become a habit. I'm compelled by habit to unload the dishwasher and refill it, etc.
My wife also has RA. She got it when she was 35, after the birth of our second child. She couldn't hardly hold the baby. The good news is we found a treatment that helped, and the severity waxes and wans, so there are some pretty good times, and a few bad times. Not every treatment works for every patient, and my wife went through several meds until we tried Enbril, For her it is a miracle drug. She also has to take prednisone and ultram (for pain) daily or she is unable to function. This is bad for bones, but what can you do? She's 45 now and fairly active. She has not seemed to be overly susceptible to colds etc, and no serious illnesses, so really she is in pretty good shape. I hope this encourages you. Nine years ago i was afraid she would be an invalid, but she is doing fine overall.
Thanks to everyone who has written with suggestions. I appreciate each and every one of you.
Larry Van Guilder
Sorry to hear about your wife's ailment.
I don't know Dr. Klipple, but assume he is well trained and researched in RA treatment.
Per medication regimens, I can offer a few names that you may want to research and ask Dr. Klipple about. As some have mentioned, TNF-alpha (Tumor Necrosis Factor) inhibitors have been a great advance in the treatment of RA. However, these biologics are very expensive. There are 3 on the market now I believe: etanercept, infliximab, and adalimumab.
Also, there are several medications designed to inhibit the T and B lymphocyte response. You're already familiar with arava, but there are other immunomodulatory drugs such as abatacept and methotrexate. A particularly successful therapy has been methotrexate + etanercept (again, I think someone may have mentioned this above).
In the class of anti-inflammatories you're already taking mobic. There are more specific anti-inflammatories such as celecoxib (celebrex), a COX-2 inhibitor. The COX-2s have recently been maligned for cardiovascular side effects, but you may find these are an acceptable risk in the face of stomach issues brought up by traditional NSAIDs.
As another person mentioned, hot water is helpful in dealing with morning stiffness.
You may also want to be aware of possible progressions of the disease. The inflammatory condition erodes the cartilage in joints, leading to a very painful bone-on-bone contact. This can lead to joints fusing and deforming...this is most common in the hands. The deforming of the hands can be painful if it entraps a nerve, and can cause muscle weakness in the hands. Be aware of and sensitive to the loss of hand function. If this sequelae does occur, think of some environment changing things you can do to make things easier: larger handles on things, easier to grab keyrings, etc.
I could write a lot more, but this is all probably overwhelming. Good luck with everything, and above all, keep a good dialog with your doctor. Stay well-informed and ask any and all questions -- no matter how simple they may seem! The stronger relationship you have, the better the prognosis and course of disease.
PLEASE there is no reason your wife can't do better unless she can't tolerate or your insurance won't pay for antiTNF therapy. People are doing so much better on these drugs than they did 10 years ago on drugs like methotrexate (and then Arava) that I have a hard time believing it. Your rheumatologist is world-famous but may not have bought into the new drugs. If you are not too far from Chattanooga try Dr. John Paty's group. They are into the anti-TNF drugs.
Good luck
I've dealt with RA (actually, in my case, psoriatic arthritis, quite similar) for most of my 62 years. Methotrexate gave me miraculous relief for about 6 months, then became less effective. I'm still on it after six years.
Enbrel also worked miracles for about 18 months, then became ineffective.
I'm now on Remicade, which has been less effective but continues to work for me, combined with the Methotrexate. Tylenol gets me through the rough patches and helps me sleep.
Moderate exercise and heat-heating pad and hot showers-relieve both pain and stiffness for me.
Some of my friends swear by dietary supplements, but I haven't seen any effect. Other than a daily multivitamin, I stick with the above.
NSAID's-Mobic, Celebrex, etc- are odd in that one may work for me, but not you. Your Dr may suggest trying another if the Mobic is ineffective.
Your help with household chores is one of the best things you can do. And be aware of the possibility of depression-for either of you.
Above all, take care of yourself. Get someone-friend, family, hired help-to come in and give you a day off once in awhile.
God bless
Wow, Larry. Folks are great. You and Becki are not alone.