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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.