Tag Archives: lupus support

Tapering steroids

When I was first diagnosed with lupus, I was started on high doses of prednisone. My doctor also started me on Plaquenil, and the plan was to taper me off the steroids over the next few months once the Plaquenil started to do it’s magic. After my doctor was satisfied with my lab tests and my symptom control, she started lowering my steroids. She would decrease by five milligrams every couple weeks. Every time I would have a decrease, I would develop some achiness and mild joint pain for a couple days but it would resolve quickly. After about six to nine months, I was able to get off the steroids. But within two weeks of stopping I was having symptoms of joint pain and fatigue. I didn’t tell my doctor right away. I wanted to see if the symptoms would go away because I didn’t want to go on steroids again. At that point I had gained some weight from the prednisone and I was just ready to be done. Things started to get worse, and I developed really horrible joint pain. I ended up spending a couple nights in the hospital where my bloodwork showed high lupus activity. So once again it was on high dose steroids with a raise in my Plaquenil. I stayed on that for a while, and as I was getting closer to finishing my course I started to develop symptoms again. I was maybe at about two milligrams at that time, but that’s when my doctor decided we needed to taper slower. So then instead of tapering to one milligram daily, we alternated two milligrams one day, one the next. Then down to one daily, and then every other day, and finally done. For a month I felt great, but then I started to develop pleuritis (inflammation of the lining of the lung). I didn’t want to go back on steroids again, as it had been nearly three years on steroids. My doctor was also hesitant to start me on steroids again, as she was worried about the affects of prednisone on my bones. So instead of steroids, we started Indomethacin instead. I was on that for a month and my pleuritic symptoms were resolving but the side affects were awful. I would take one pill every twelve hours, and after I would take the morning dose I was a mess at work- dizzy and sleepy and just overall foggy. I had to try really hard to focus. Finally my doctor realized this just wasn’t going to work and that I’d need to go back on steroids as well as another maintenance drug. I was going on vacation with my family in a few weeks so she decided to wait til I got back before we started my new maintenance medications. After my vacation, which was awesome because of the energy the steroids gave me, we discussed other options. We had talked about Benlysta which is a new medication, but decided against it because it would require me to come in for infusions or injections and that would not work with my lifestyle and job. So, we decided on Imuran. We waited a few weeks of me being on the Imuran before we started the arduous task of tapering, and when we did, we did it very very slowly. Along the course, we also had to do a lot of adjusting of my Imuran, as it was causing a dangerous decrease in my white blood cell count. Eventually I got off steroids. It was a long and trying experience but now I’ve been off steroids for about six months. I know that if I have a flare, I may have to go back on steroids, but I’m happy to be off for now. I know tapering steroids is a difficult experience that will vary for everyone. It can take months to years, but you have to be patient. Reducing stress, exercising, eating a healthy diet, and keeping positive help make the process go a lot smoother.

Ask the Doc- How often should bloodwork be done in a patient with lupus?

Bloodwork for patients with lupus is very important and usually is done regularly. How often it is done is based on the patient and the severity and activity/stability of their disease. Usually I get my bloodwork done every 4 weeks, but there were times when I was doing so great that I only needed to get my labs checked every 6-8 weeks. There were also times after a flare or hospitalization, or after my medications were changed/being adjusted where I had labs drawn every 2 weeks, and even once every week.

Lab tests are very important because  they provide you and the doctor with very important  information. Labs help us determine how active the disease is and how well the medications are working. It also can tell us if the medications are causing any unwanted side affects. It can also let us know if something new is brewing.

Some of the routine labs I get done are as follows;

Complete blood count (CBC)- This tells me if I am anemic ( low hemoglobin and hematocrit), or if I have low platelets or low white blood cell count.

Complete metabolic panel (CMP)- This checks kidney function, electrolytes , sugar levels, and liver enzymes.

Anti- dsDNA – These are antibodies to double stranded DNA which is a lupus marker and can help tell how active the lupus is.

Complement levels (C3 and C4)- Low levels of these can indicate inflammation due to lupus.

CRP: High levels of C-reactive protein can be indicative of inflammation and lupus activity.

Urinalysis: Abnormalities in the urine such as blood or protein can mean there are issues with the kidney.

And every once in awhile my doctor will order a vitamin D test and thyroid test.

Getting your blood checked regularly is an important part of lupus management, which reminds me it, it’s time to go get mine done!

My Story: Part 8- Faith

I think the the part of my life most affected by my diagnosis with lupus was my faith. At the time before my diagnosis, I was on a roll. I was doing really well at work, was in the running for chief resident, on my way to becoming a licensed physician. I had a really awesome boyfriend and flourishing relationship. My body was getting in shape and I was confident. I felt good about myself and my life. I felt powerful, and I felt like my life was finally in complete control. I was self reliant and could do everything on my own. I didn’t need anything or anyone because I had it all.

But then it happened. I was diagnosed with lupus and my whole world came crashing down. I no longer was in control of my body or my life. And that’s when I realized I needed God.

Now, I grew up Christian and attended church weekly for the most part. Religion was always a part of my life, but it was something I just did out of habit, maybe even out of guilt or obligation. It was never really a personal thing. There were times when I had felt close to God, but it wasn’t constant. It was only during times of need.

And now another time of need presented itself. But this time it was very different. I had never had an issue in my life before that would cause such a drastic and complete change in my life. And here I was completely lost, and life was completely out of my hands. But it was in God’s hands. He was in control. It didn’t mean that life would be easy, but now I knew I had Someone who cared for me and could heal me.

Through the blessings and the trials my faith in God grew. I would like to say that my faith is and was always strong, but that’s not the truth. As I got better, I would start to feel
like I didn’t need God again. Or when I was feeling really sick or hopeless, I would doubt God’s love and plan for my life. But as time has passed, and I have witnessed the healing and the love, I have learned to trust in God and His purpose for my life.

I know that we all have different beliefs, but I wanted to share mine because it’s such an important part of my life. It is not my intention to push my beliefs on anyone else. My personal relationship with God has formed the person I am today and has developed my perspective on life.

For those of us who are believers, I think it’s very important to be strong in our faith and continue our support for each other in prayers. If anyone would like to be added to the Prayer Corner, please let me know.

Ask the Doc- Do most doctors recognize fibromyalgia as a real illness?

So before I begin, here is a brief, informative article about what is fibromyalgia.
http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Fibromyalgia/

Ok, to answer the question. If you would have asked me if fibromyalgia was real five years ago, I would have said “no”. Even after I was diagnosed with fibromyalgia, I still wasn’t sure if I believed it was a actual diagnosis. Now, after years of dealing with the disease, I understand fully that fibromyalgia is a true illness.

As far as my colleagues and other physicians go, I think they have differing opinions. Perhaps their views are dependent on their specialty or how much experience they have had with the disease. I think the majority of rheumatologists use the diagnosis easily, while the majority of PCP’s accept the diagnosis, but maybe are not as readily able to apply it.

Fibromyalgia is a chronic pain syndrome which was made as a diagnosis of exclusion, meaning when all other things were ruled out, then we could call it fibromyalgia. There are no definitive laboratory or imaging tests that are done to prove fibromyalgia, only tests to prove that it is not something else. Also fibromyalgia is often found with other diseases such as rheumatoid arthritis and lupus, which makes it unclear if it’s fibromyalgia or just a part of another disease.

There is non- laboratory diagnostic criteria, such as a certain number of 18 tender points on the body,same level pain for at least 3 months, and having no other disease to explain the symptoms. Although there is criteria, you don’t necessarily need to meet all the criteria to be diagnosed with fibromyalgia. Having diagnostic criteria for fibromyalgia supports the concept of fibromyalgia as a real disease.

There are many treatments for fibromyalgia depending on what symptoms a patient has. As the FDA approves drugs for the treatment of fibromyalgia, it does make it clearer in the mind of a physician that fibromyalgia is a true illness.

So in summary, I believe fibromyalgia to be a real illness, and as there is more information, more diagnostic and treatment methods, more doctors will feel comfortable in giving the diagnosis of fibromyalgia and treating patients accordingly.

Please continue to send me your questions, so I can answer them in a post. Also, please keep in mind I cannot give out any personal medical advice.

My Story: Part 7- Self Esteem

Being diagnosed with lupus was a major blow to my self-esteem. I was used to to being a very independent person. I did want I wanted, when I wanted. Being in control of my life made me feel confident. I liked seeing myself as a self-sufficient person.

But now I felt weak. I felt like I was somehow less than all of my colleagues. I would never be that strong woman again. I was embarrassed for people to know. I was afraid of what they would think of me, feeling sorry for me for being a pathetic, helpless person.

As physicians we and our patients hold us to a higher standard. We don’t need to eat, sleep, or go to the bathroom. But here I was needing ten hours of sleep at night, and as many naps as possible. I needed to eat meals so I could take my medications. I was running out of clinic to go use the bathroom because my meds were upsetting my stomach.

Then there was the weight gain. I gained about 20-30 pounds that first year from steroids and my inability to exercise. Previous to my diagnosis, I considered myself to be a pretty girl, maybe even a little sexy. I wasn’t skinny, but I was curvy in all the right places. I was used to guys finding me attractive and flirting with me. I wasn’t perfect,but I felt good about my appearance.

Not only did I gain weight but my whole shape changed. My tummy got fuller, my face got rounder, and my upper back developed a little hump. My lashes became so thin, that even with mascara, you could barely see them. Guys wouldn’t even give me a second glance. I wasn’t even the same person anymore. I was ugly.

It’s taken a really long time to regain some of my self worth, but I don’t feel the same as before. I’ve lost most of the weight, and have started to take my normal shape. As I see how much I still am capable of doing, I realize that I am a strong person, perhaps stronger than before. It is going to take time, and a lot of work, but I believe the person I become will be even better than the person I was before.

Weekend Trip

So I am going down South to visit my family this weekend. It’s my niece’s one year birthday and dedication. Now I usually fly down every couple months, but it’s been seven months. This really is the longest it’s been since I’ve been back.

Since I started my new job, it’s been tough to go down there. I work Fridays and Mondays and it doesn’t make sense to fly down for less that 48 hrs. And with the part time hours, I definitely do not have the funds to fly as often.So I’m super excited I have the chance to go, and as a bonus my husband will come too.

There was a time earlier on when I was afraid to fly home because of my health. I worried about being there with my family, and having one of my pain episodes and they wouldn’t understand or be able to help me. For a time I really was worried about being with them for more than a couple days, without my husband.

I did that with other trips too. Afraid to go away for weekend conferences with friends, or to drive the five hours to go see my aunts and uncles. Worried about planning things and then having to cancel and lose money.

I also have this weird paranoia about running out or losing meds on vacation. I always back an extra three days worth in my pill box to keep in my purse, but then I fill an empty medicine bottle with a jumble of more meds, just in case, and hide that in my backpack. If I’m feeling especially nervous I pack unable mixed bottle and slip it into my suitcase. You should see how many times I check and recheck my pillbox.

Travelling is one of my favorite things to do. And so is being with my friends and family. I’ve realized I can’t live my life being afraid of what might happen.I have to live in the now without fear. But it still doesn’t hurt to buy a lil travel protection:)

Ask the Doc- Why isn’t my doc willing to hear out my ideas?

A reader wrote in about a concern she had with her dermatologist. Her concern is that her current treatment is causing more harm than good. She has tried to show him research studies that she has found about the issue, but he won’t read them. She has also tried to show the study to her PCP, but hasn’t had any success.

In the doctor-patient relationship, I believe it is very important that there is trust between both parties. Patients need to trust their physician’s judgement and believe that their doctor is looking out for their best interest. But this does not mean they cannot seek further explanation or information.Patients have a right and responsibility to be involved in their care and treatment, and advocate for themselves.

As a physician, I believe in addressing my patient’s concerns, even if they may seem trivial. I may not always agree with what my patients are saying, but I believe it is worth considering, even if it is to simply show my patients that I respect and care about their feelings. Doctors have extensive medical knowledge and training which guides their decisions, but that doesn’t give us permission to completely dismiss our patient’s opinions.

Although we may be open to our patient’s ideas, sometimes our hands are tied. We have to be careful about going off- protocol, as does anyone in any other profession. There are standards of care in medicine, and treatment plans constructed around evidence-based medicine. Deterring from these standards can cause major issues for a physician.If there were to be a negative outcome due to a physician going off label, or denying the recommended treatment, the physician can be held liable as well as feel the guilt of going against consistently proven methods and causing damage.

I think the real issue here is that the reader does not feel that the dermatologist is being receptive of her concerns. I would encourage anyone in this situation to make their doctor aware that they feel their concerns are being ignored. We sometimes get so focused on the plan we have in our head, that we don’t realized we’ve stopped listening. If the physician is still not willing to listen, then I think it’s not a bad idea to get a second opinion. At the end of the day, the doctor and patient should work together as team with one goal- providing the best care for the patient.

My Story: Part 6- Lupus Educational Meeting

Feeling isolated from my friends and family, I decided to seek support at a lupus meeting. My husband drove me into the city to go to a educational meeting, and I remember being so nervous walking into the room with him. I was excited to finally be meeting people like me, but I just didn’t know what to expect. I hadn’t managed too many patients with lupus before, as they usually went to see a rheumatologist.

I walked into the room and my heart dropped. There were people of all ages, mostly women. I watched as they hobbled in with canes, others sitting looking disheveled. There were a couple who looked put together, but the majority really looked like they had struggled to make it out of their home.We sat at tables in groups, and no one was talking to each other. There was an emptiness and sense of hopelessness in their eyes.

After the guest speaker presented, she started to answer audience questions. If I was feeling uncomfortable before, then now I was really a fish out of water. The majority of the questions were not so much about the disease itself, but about the social issues. How to apply for different disability services, where to find free care. Some just simply stating that they felt lost.

I wanted to run right out of there. No. They were not like me. I would not be like them. I would continue working. I had plans. I had a life. Fear crept inside my heart. Anxiety about becoming so disabled I would not be able to continue my career as a physician filled my head. Years of hard work would get flushed down the toilet.

I tried to ease my anxiety by talking to the the presenter after the question and answer session.I asked her what my options were.Are there ways I could make my career work for me? Medicine is a high stress job, and I was wondering if there was something I could do within the field that was less taxing. What if I couldn’t work? What would happen to my loans? Or if I decided to work part-time, would there be a way for me to get health insurance?

To my dismay, she didn’t have any answers. She suggested I speak to social services. I left that meeting more terrified and isolated than before. I decided then that I wanted nothing to do with the lupus community, and I would just deal with my problems on my own. It was just too scary to face my future with this disease.

Rain, rain, go away!

So, my knees started to ache a little last night. I thought maybe it was from my beastly resistance training workout, but when I woke up this morning I heard the soft downpour of rain.
I’m sure many of you have experienced this. Cold or rainy weather worsening joint pain or body aches.
I’ve been doing some research, and I wanted to find a scientific paper on the affects of weather on joint pain and lupus. I haven’t found anything other than speculation of joint pain being related to humidity and barometric pressure. Here is one link I found www.specialtyclinics.med.sc.edu/joint_pain.asp

If anyone has seen any good articles explaining the relationship between lupus and bad weather, please feel free to share!

World Lupus Day!

Today is World Lupus Day! This is a day to raise awareness and support those who are working hard to promote lupus education! I would like to feature Lupus Connection, a non-profit group in Florida thats provides support services for patients in the area. They offer coaching as well as much needed educational and health activities. They also have a blog where I and other lupus bloggers, including the site administrator share our stories.Currently they have developed a ” live lupie” product line to promote awareness and raise funds for their work. I’ve checked out their stuff, and personally love their Reimagine design. Please check out their site Lupus Connection, and support their great mission!