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I’m binge-watching old “ER” episodes. I loved that show. Some episodes hit home more than others. One episode showcased two African American doctors who were pulled over because they resembled the descriptions of two multiple shooting suspects, though their car didn’t match the getaway car. One officer shoved one doctor to the ground and “restrained” him by putting his foot on the doctor’s neck and head. This episode . . . from the mid- ‘90s . . . sent chills down my spine.

Another episode centered around a young kidney transplant patient who also had seizures. Her regular doctor put her on a new anti-seizure drug known to cause kidney problems. It worked great on the seizures, but the transplanted kidney wasn’t working properly anymore.  One of the ER doctors suspected the new medication and conducted an online search to see if there were similar cases. He found three but suspected more.

When he confronted the doctor who had prescribed the new med, he found out that this doctor knew it had the potential to ruin the new kidney but went ahead and prescribed it because it was so great on seizures. Yes, it had helped get rid of her seizures, but it also ruined the new kidney.

Discontinued meds, some of which I’ve taken, were mentioned in the show. One big one was Vioxx. I was on Vioxx many years ago, but the FDA pulled it from the market after learning it caused serious strokes and heart attacks. I know the FDA did the right thing by pulling it, but for me, it was a wonder drug that fought the debilitating pain caused by my lupus and arthritis.

Cases like these make me wary of what is happening today with possible treatments and vaccines for COVID-19. There is a rush to get the vaccine and meds on the market, but there is no way of knowing long-term effects of these treatments.

It seems like meds that help treat one symptom are catalysts for other problems. For instance, I had to stop taking one osteoporosis drug because studies showed long-term use was connected to a high risk of cancer. Another arthritis med gave me a massive stomach ulcer that will never completely heal. Other meds I have either tried or considered also have the potential to cause cancer or serious harm to organs and other parts of my body.

It’s all about making informed decisions and what you are willing to risk to find relief. I’ll get into this more in the next few columns.

Have you been faced with deciding between a drug known to help one issue but also known to have the potential to cause other issues?

#medicines #lupusmeds #arthritismeds #ER

One of the main points of this blog is to help people be better health care advocates for themselves. One way to get this point across is to share some of my experiences, and there have been many.

Today, I’d like to share an experience that happened about four weeks ago at a regular rheumatologist appointment.

First, it’s important to realize that everyone has different experiences with doctors. I’ve been very fortunate over the last 30 years or so. My doctors have not only listened to me, they have seen the importance of including me in the decisions being made for my medical treatment. This is extremely important since, in my case, we’re talking about medicines that can have unwanted side effects.

Once a year or so I see the actual rheumatologist (I see her nurse practitioner the rest of the time). Lately, the only way to see the doctor is to also see a Fellow working with her.

I have been dealing with severe, out-of-control rheumatoid arthritis (RA) for the last three years, as well as severe osteoporosis. I’ve tried Avara, Enbrel and Orencia for the RA. None of those meds helped. I cannot take Fosamax or Actonel for the osteoporosis because they make my ulcer (a product of another med I can no longer take) bleed. We tried Prolia infusions and they did no good. I was on calcitonin, but was taken off it after studies concluded long-term use of that med caused a high risk of melanoma.

The Fellow, doctor and I discussed the RA treatments that didn’t work and one that I absolutely refused to take because of the slight risk of an incurable brain infection. I know my body well. I am in the “less than 1 percent” category and I will not take a chance with something like a possible brain infection. I thought I had made myself very clear to the Fellow.

After my blood tests and x-ray of my hands were read, I received an email from the Fellow saying that the Orencia was not helping and I needed to change meds. In the email, she asked if I had considered the biologic I had told her I refused to try. I reminded her that I had told her to her face I would not take it and why. She said I had to come in to discuss the alternatives. I said no. I prefer knowing what my alternatives are so I can do my own research. I made it very clear I would not waste my time or hers talking alternatives until I had done my due diligence. I also told her I refused to be bullied and forced to make a quick decision.

Reluctantly, this doctor told me about Xeljans and Actemera. She cautioned that Xeljans was a daily pill and Actemera was an injection or infusion. She also said it was very possible insurance would not cover either one, where it was more likely the one she recommended would be covered. I reminded her that injections were not a problem, I’d been injecting myself while on the Orencia. I also told her I was not a candidate for infusions for several reasons.

I contacted others with RA and asked if anyone had tried either of the meds. I spoke with a very good friend of mine takes Actemera infusions. It had helped her for about four years before she built up a tolerance. She recently was put on methotrexate (MTX) to hopefully boost the Actemera. I finally made my decision to try the Actemera, but self-inject.

I’d had a bone density scan just before my rheumatologist appointment and that showed marked deterioration of my bones. I asked this doctor what we were going to do about the osteoporosis. She asked me if I’d ever considered Prolia. Hello? We discussed this with the doctor. Those infusions did not help. I told her to read her notes. I asked her what else we could try. She finally got back to me saying that based on my preferences, there was nothing more they could do and I’d have to go to a bone specialist.

My preferences? She really wasn’t listening to me. I cannot take certain classes of these meds because they make my ulcer bleed. I cannot do infusions because of the lighting in the room, the fact that it makes my bones hurt and I’m useless for three days or more and I’m a snowbird. I’m not here in the winter and can’t get treatment through insurance in Arizona. And I cannot pay out of pocket.

So, what lessons can be learned from this experience? First, be ready to speak up for yourself. Don’t let any doctor bully you. Ask questions. Tell the doctor how you really feel. If you’re uncomfortable with something the doctor is suggesting, let the doctor know. This is your body and your life. If you need time to think about treatment, tell the doctor. I’m not afraid to speak my mind and I do. Make sure you are part of any medical decisions being made about you. Do not ever let a doctor intimidate you or bully you into something for which you are uncomfortable. And insist on doing your own research to make an informed decision.

I have made an informed decision on my next course of treatment. We’ll see how it goes.

We’ll get back to talk about medications in a little bit. Right now there are more pressing issues that need to be addressed here.

Some of the biggest news coming from Washington, DC, and the inauguration concerns the Affordable Care Act, also referred to as Obamacare. There is so much misinformation and confusion about what Congress is doing and what the new president wants to do, which is get rid of it.

I’ll put this out there right now. If we lose the ACA, I’m screwed and so are many others like me. I will not be able to afford health care of any kind, which would lead to a very poor quality of life for me, and make those around me quite miserable, too.

I did not choose to have lupus or rheumatoid arthritis or any of the other chronic illnesses I’ve had diagnosed, nor did I sign up for any of the myriad of illnesses caused by treatment of my chronic illnesses. Doctors are too expensive. Medications are too expensive. It’s expensive to be sick! But I’m sick. There – I’ve said it. I’m sick. In order to have the best quality of life I can, I need to be watched by doctors and I need medications to help slow down the progression of my diseases. Without insurance, I could not afford to live. Think I’m joking? One med I am on costs $4,000 a month. That’s right FOUR THOUSAND dollars a month. Less expensive alternatives have not helped me. We’ve tried. When I add up the costs of all my medications without insurance, I’m looking at an average of $5,000.00 a month just on medicines. Add in doctor visits at full price and we’re talking an annual expense of around $75, 000 or more in medical costs PER YEAR. I don’t earn that much money.

Before the ACA, I was part of the Illinois ICHIP program. That’s the Illinois Comprehensive Health Insurance Plan. It wasn’t cheap and it only covered my illnesses. If I broke my leg, that was on my dime. My health care costs were more than $25,000 a year total – that’s the monthly payment plus what it cost for doctors, blood tests and medications. Without the ICHIP it would have at least been double that, probably more as the medication costs would have been so much higher.

Once the ACA was passed my out-of-pocket expenses went down and the monthly premium was half of what it had been. Then I found out that the State of Illinois passed a law expanding the state Medicaid program and I found I was a candidate for that. My out-of-pocket expenses went down to nearly zero. For once I could stop stressing out about the out-of-pocket expenses I incurred and focus more on living the best life I could with what I have.

Now the Republicans and our new president (and I use the lower case purposely as I have no respect for the despicable man) want to take all of it away from me. The Republicans lied to their constituents telling them that “Obamacare” was a death sentence. They were wrong. However, if they take away my health care it IS a death sentence – for me! Without consistent doctor care and drugs that are basically maintenance drugs, my diseases will take over and eventually kill me much earlier than I’d like to go. My days will be filled with wondering how much longer I’ll live – or really, how much longer I’ll have to live in extreme pain and unable to work at all let alone walk or do anything for myself. My diseases are that bad. And I’m not the only one in this boat.

I’m frightened. I’m frightened that I’ll lose the ability to live a somewhat normal life – or what is normal for me right now. I’m frightened thinking that I may have to live the rest of my days in extreme pain. I’m frightened that the Republicans in Congress will bitch that people like me are not trying to live productive lives and they won’t understand that the reason rests on their shoulders. They are EVIL people.

I’m also tired. I’m tired of having someone else decide what’s best for me – the Republicans who want to take away my health benefits, the insurance companies that won’t pay for prescriptions my doctor orders but instead make me try others first – they aren’t doctors. They never talked to me to see what I’m going through. I’m tired of being tired all the time. I’m tired of being sick. But if the ACA is repealed, I’ll be sick and tired all the time. I already make plans with friends and must cancel many times because I feel so lousy. Imagine never being able to make plans because I always feel sick and tired and don’t want to dump on my friends. Actually, it would be more that I won’t have the energy to go out anyway. What kind of life would I have?

The Republicans and this new president are dangling a death sentence in front of me. What did I do to deserve that?

And here’s a real kicker. Those of you who support Congress’ actions will also suffer. Your premiums will jump up more than they already have. Those of you with employer-based health care will see more of your paycheck going toward premiums because your employers won’t be able to afford to help. Some will drop it completely and you’ll be on your own. Only the extremely wealthy will be able to afford health care. You get pneumonia? Can you afford treatment or a hospital stay without insurance? It’s doubtful. What if you break a leg or an arm? Can you afford to pay to get it set and the physical therapy that follows? Doubtful.

Don’t get me wrong. I don’t wish any ill will on anyone – except the idiots in Congress who want to see me suffer.

If you’re like me, you’re probably on a lot of different medications. It’s important to know what you are taking and its purpose. My rheumatologist in Atlanta insisted I memorize the medications I was taking and the doses “just in case.” The just in case for me ended up was telling a paramedic and then emergency room doctors all of my meds after I fell on a wet kitchen floor and dislocated my elbow many years ago. It served me well again five years ago when I was taken to First Aid at Wrigley Field after being hit in the forehead with a batting practice ball and getting a concussion. Learning what your medications are and dosages really is important!

But beyond that, learning why you are on particular medications is equally important. For example, I am on prednisone to slow my immune system and try to help with inflammation. I am on a vasodilator to help curb Raynaud’s attacks, but I have also found it keeps me from getting migraines. I am on a biologic that is supposed to help slow the progression of the RA. I take a Xanax each night to help me relax because one side effect of long-term use of prednisone is insomnia. I take a super-strength Pepcid twice a day to help manage an ulcer that was caused by another medication I can no longer take. I take Tramadol three times a day for pain management (I wish it helped me like it helps almost everyone else I know). I am on a cholesterol medicaiton because the prednisone caused my cholesterol to go a little high. I take a medication to calm my colitis, which was diagnosed while I was in college, and may very well have been a warning sign of things to come. I take Advair to help me breath better because of horrible allergies, for which I also take Flonase and another allergy pill. And I always have my epi-pen and Benadryl handy in case of an allergic reaction to foods or bites or stings. It’s as lot to remember, but thankfully, even when I have lupus, RA or fibro fog I can remember those meds and why I take them.

Many meds I am on or have been on have been created for other conditions and diseases. In the course of finding out more about chronic illnesses, studies found that medicines normally meant for, say, blood pressure can help control Raynaud’s. Antidepressants can be used to help a person relax enough to be able to sleep at night. You don’t need to be “depressed” to be on an antidepressant. Many of the biologics on the market today supposedly help many different ailments from RA to Chron’s Disease. Chemotherapy drugs, like methotrexate, have been shown to help different types of arthritis, lupus and other chronic illnesses in many people (not me).

Because there are so many types and classes of medications on the market, it’s important for you and your doctor to discuss all of your options. Almost all of the medications have side effects – some worse than others. You should discuss those side effects and decide whether you are willing to take the chance of having one or a number of the posible side effects.

When my lupus was first diagnosed, my doctor had me on massive doses of non-steroidal anti-inflammatories (NSAIDs). When none of those worked, we decided I had to take a steroid. We even tried a chemo drug. When my RA was diagnosed, since I had already been through the NSAIDs, was on a steriod and had already had a bad reaction to a chemo drug, the only thing left was a biologic.

In the coming days I will discuss each type of medication, what each is supposed help and how they affected me. It is my hope that my experiences can help others who are facing many of the same decisions I am still making.

I shall be telling this with a sigh

Somewhere ages and ages hence: Two roads diverged in a wood, and I,

I took the one less traveled by,

And that has made all the difference.

 

With the help of a cousin, I waited for a specific rheumatologist to return to Atlanta. My first appointment with him was in July of 1985. I was his first patient. After asking me many questions and listening to me – really listening – he told me he suspected I had lupus, but it was going to be very difficult to diagnose. His initial diagnosis officially was connective tissue disease. By then my hands were in pretty bad shape and I was dropping things all the time. My downstairs neighbor knew how bad a day was for me by how many things she head me drop.

I was sent to an occupational therapist and a physical therapist. We determined that I had no feeling my my hands from my fingertips to my elbows. I was given exercises to do at home and was fitted for hand braces to wear at night. When I think of those now I cannot believe I actually wore them. They were made of a very hard plastic molded to my hands, from just beyond my fingertips to about my elbows. This was to keep my hands open and hopefully keep them from cramping during the night. I ended up with many bruises on my forehead because I’d forget I had the braces on and I’d try to scratch an itch and bang myself in the forehead.

My doctor was so convinced I actually had lupus that he started me on plaquenil, and anti-malarial and mega doses of Motrin. Motrin was not hte answer. We tried just about all the non-steriodal antiinflammatories on the market and either they didn’t work, I had an allergic reaction or some other strange reaction. After exhausting everything , over the course of a few years, he gave in and put me on prednisone. I had heard that prednisone would probably cause me to bounce off the walls. It didn’t. In fact, I wasn’t even sure it was working, but it was.

As time went on, I developed more symptoms and more pain. My rheumatologist told me that if I developed eight of 10 symptoms he could make a definite diagnosis of SLE. It didn’t take long for two more symptoms to rear their ugly heads. I now had an absolute diagnosis of lupus. New blood tests that were coming out also started confirming the diagnosis. Basically, my body had developed an allergy to itself and was attacking my connective tissues, meaning my tendons and ligaments. The pain was always there, at times so intense I wanted to cry.

I plugged on. My boss was quite understanding of my situation and allowed me extra time for lunch so I could go home and take a nap. I needed to get out from under the flourescent lights, which were making me sicker. When I was asked to join a brand new magazine part of the deal I made was I would have flex hours, I would have my own lighting and if I needed to take a nap, I could do so on a sofa in the managing editor’s office. This worked out pretty well but I was still in a great deal of pain.

I asked my doctor about a support group and he told me not to join one. he was afraid it would bring me down. I was coping with the lupus very well and was learning on my own what I needed to do to make myself comfortable and less sick. One thing I knew I didn’t want was to listen to people complain about how sick they were and how awful their lives were. That would have brought me down. I was no longer able to do many activities I had enjoyed before getting really sick, but I never saw a dead-end. I saw a fork in the road. I could go one way and feel sorry for myself or go the other way and see what else was out there. I always chose to see what else was out there. In fact, had it not been for the lupus, I would never have become a landscape photographer or an avid bird watcher. For a while I carried around a copy of Robert Frost’s “The Road Not Taken.” I truly believe that I have taken the road less traveled and it really has made all the difference.

My mom and I have been trying for years to figure out just when I started having lupus symptoms. It could have been the convulsions I had after the baby shots I had. Who knows? It could have been showing up when I was taking ballet lessons. I’d come home with sore, red and swollen knees. It could have been in grammar school when I would get very nauseated and have to go home from school. My mom used to say I had 3:15 itis because a couple of hours later I was absolutely fine. I used to sit out in the sun – a lot. I always got sick, but I looked better with a tan. I’d also always burn, despite putting on sunscreen.

In college I was always tired but I studied hard and played hard. Isn’t that what college is about? One day I got back to my dorm room and was so exhausted I decided to take a nap. When I woke up it was confused as to why there was so much noise in the hallway at 6 a.m. Turns out it was 6 p.m. 24 hours after my “nap.” After college I was always tired and losing a lot of weight. I figured it was because I was working hard and playing tennis almost every evening.

One night I went out with friends and when I got back one finger was red, white and blue – very patriotic. Then this started to spread to all my fingers – on both hands. I was always cold and had no energy. I was diagnosed with Raynaud’s Disease. My fingers would get very cold and turn blue and white. The red would come in when circulation returned. It was very painful. I was told to move to a warmer climate. But there was more going on and we went searching for answers. Unfortunately, there were none. I was 24 years old and I kept telling doctors I was sick and it wasn’t in my head. Sometimes just a few steps to the bathroom from my bedroom wore me out.

After going one winter where my fingernails turned purple and the skin around the nails turned black, I knew I had to find a warmer climate. I was unable to play tennis because I couldn’t hold the racquet – and I had been playing five or six days a week. I had dated one of the tennis pros at the club, so all of them tried to help me figure out a grip that was comfortable for me. None worked. The racquet kept following the ball across the net.

For me, life has always been an adventure. That’s how I look at it. After college I spent seven weeks on Australia. It was incredible. I was there on my own, but I had a friend in Sydney and cousins in Melbourne, so I wasn’t really alone. One cousin who is one month younger than me had been to the States a few times and we’d gotten very close. As kids we talked about being at each other’s weddings. By chance, I was at hers! What a thrill.

So, when it became clear I had to find a warmer climate I made a list of criteria I needed in a city. It had to be a warmer climate. There had to be publishing opportunities. I wanted a city with a younger population for making new friends. The city also had to be a National League city so I could see my Cubs. I decided to take a look at Atlanta. For my 25th birthday, I took a three-week trip, kind of the long way, to Atlanta. I stopped to see a friend in Pittsburgh. From there, I went to Reading, PA, to spend my 25th birthday with my college best friend – I arrived on his birthday, two days before mine. I stayed there a couple of days then stopped to see friends in Greensboro, NC. I spent eight days in Atlanta driving around, looking at publishing companies (I was offered a job on the spot and turned it down) and I looked at places to live. It seemed to be the right place. On the way home I stopped to see a friend in Cincinnati.

I moved to Atlanta and eventually went back to the publishing company where I’d turned down the job and was offered another, better job, on the spot. I took it.  But I started having other issues. My hands were hurting from the Raynaud’s but also for some other reason. I was able to predict, very accurately, when rain was going to start and how heavy the rain would be. My knees started bothering me, as well. And, I was still so tired and losing weight. I chalked up the fatigue to a very active social life. But that wasn’t it.

I look back at all of these things now and the lupus diagnosis I finally received starts to make sense. According to WebMD, about two-thirds of lupus patients are sensitive to the sun and the UVA/UVB rays from other light sources. Looking at the list of symptoms on the Lupus Foundation of America site, getting sick in the sun made sense. But I also learned that fluorescent lights throw off UVA and UVB rays and THOSE were making me even more sick. My 3:15-itis was probably a reaction to the lights I was forced to sit under every day at school. To this day fluorescent lights are a real problem for me.

I’d always had allergies, but developed more, and developed food allergies as well as hayfever. Hurting hands, swollen fingers, swollen knees, fatigue, weight loss. It all started to make sense.

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