Category: theme days

Terminology Tuesday: CAPS

Posted on by Grayson

CAPS stands for Cryopyrin-Associated Autoinflammatory Syndrome, but in reality, this ‘syndrome’ is actually three different syndromes:

  1. Neonatal Onset Multisystem Inflammatory Disease (NOMID)This is the rarest and most severe type of CAPS, causing infection-like symptoms like rashes and fevers in newborns where no infection is present. The disease can cause blindness, stunted growth, and chronic joint pain later in life.
  2. Muckle-Wells SyndromeSymptoms of this syndrome include fever, rash, joint pain, headaches, red eyes, and GI upset/nausea. Hearing can even be affected.
  3. Familial Cold Autoinflammatory SyndromeExposure to cold temperatures causes a rash similar to hives with this syndrome, bringing fevers, GI upset/nausea, and joint pain as well.
These conditions are genetic and are caused by a mutation in the protein cryopyrin. Diagnosis can be made via genetic testing (which isn’t always accurate), and other sometimes invasive tests like lumbar punctures.
Kineret, Ilaris, and Arcalyst, all focusing on interleukins, help to treat this series of syndromes the best.
As with other genetic issues in the periodic fever family, kidney disease can be common, especially for un- or undertreated patients.
Sources:
 
http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Cryopyrin-Associated-Autoinflammatory-Syndrome-CAPS-Juvenile
 
http://www.capscommunity.com/caps_fact_caps_md.html
 
http://www.arthritis.org/about-arthritis/types/cryopyrin-associated-periodic-syndromes-caps/
 
http://www.nyas.org/image.axd?id=7a2e9daf-d10b-42ba-ad26-e8de00a41a28&t=633807535794630000

Medical Monday: Communicating with HCPs

Posted on by Grayson

Communicating with people who work in healthcare can be tricky. If, like me, you had little exposure to the healthcare world growing up, it can be even harder to figure out and discuss what is actually the most pertinent information.

As I’ve talked about before, making sure that there is an understanding between patient/family and provider on communication methods and the like is crucial to patient success.

When you first mean with your provider and their team, one of the first questions/issues that should be discussed is communication standards and preferences. This includes topics like:

  • Do either of you have a preference on utilizing phone calls versus MyChart to communicate non-urgent medical issues, prescription issues, and/or questions?
  • Are there any access issues for either of you with some forms of communication (i.e., no computer/internet access, hearing issues, etc)?
  • How often do you expect to communicate – only for urgent issues, every month, etc?
  • What is the best way to reach each other in the most urgent of circumstances?

Making sure that you communicate any changes – and that your physician does as well – will help keep things running smoothly.

Make sure to always ask questions and take some time to think on and/or research medication or treatment decisions.

Try to separate emotion from the conversation at hand. This will definitely be more difficult in certain situations than in others, but is important at the very least when communicating symptoms.

Let the physician know what, in your mind, the series of events or issues was that led you to seeing them. They often times don’t know fully what the complaint may have been when the appointment was set up.

Communication heavily influences our health and our willingness to get help from our care providers. It’s up to us to make sure that we’ve set ourselves up with physicians who are like-minded and can develop a good relationship with us, and vice versa.

Sources:

 http://www.heart.org/HEARTORG/Caregiver/ReachOut/CommunicatingwithHealthcareProfessionals/Communicating-with-Healthcare-Professionals_UCM_301843_Article.jsp#

 http://healthcarecomm.org/about-us/impact-of-communication-in-healthcare/

Terminology Tuesday: CRPS

Posted on by Grayson

CRPS stands for Complex Regional Pain Syndrome. This syndrome can be caused by trauma or injury to a part of the body, resulting in nerve and other chronic pain. It’s an interesting syndrome in that there are people without a documented injury to the affected part of the body that are diagnosed. CRPS can affect the immune system, blood vessels and flow, and other parts of the nervous system.

Other symptoms include allodynia, changes to the skin surrounding the affected area, stiffness, and tremors.

Since some of these symptoms mirror rheumatic diseases, there is a lot of exclusionary testing with this diagnosis.

Treatment varies significantly from case to case. Steroids and NSAIDs can help, or nerve medications like Lyrica may need to be used. There are more severe methods of treating this disease as well including surgery, nerve blocks, and more.

Sources:

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

Medical Mondays: coinsurance, copay, and other confusing insurance technobabble

Posted on by Grayson

With the new insurance year almost in full swing, let’s review some important insurance terminology.

Coinsurance and copayment – what in the world is the difference?

Okay, so a copayment is a portion of money you have to pay your doctors, etc, for services rendered or to your pharmacy for a prescription. Copays are generally a fixed rate – for example, Lyrica through my current pharmacy is $20 a month.

Copays also usually go away if you hit the out-of-pocket maximum for your plan. If you had an MRI in early January last year like me, that means you hit the maximum pretty quick and got to enjoy appointments without having to pay much in the rest of the year.

That came in handy with bronchitis and other BS, I tell you what

Bear with me, because coinsurance is not so straightforward.

The coinsurance is an extra amount you owe, which is generally the balance of your total medical bill once your insurance pays their part – regardless of whether or not you paid a copayment.

And then, there’s your deductible… which is basically the amount of money you have to pay before insurance will cover anything.

Copayments don’t count towards that amount because that would assume that the insurance is picking up any part of the tab.

If you’re chronically ill like me and end up having to see various providers a lot, you’ll likely want an insurance plan with a lower deductible because it’ll save you money upfront.

Sources:

 https://static.ehealthinsurance.com/resource-center/wp-content/uploads/what-is-coinsurance-1024×512.png

 http://www.diffen.com/difference/Coinsurance_vs_Copay

Terminology Tuesday: TRAPS

Posted on by Grayson

TRAPS stands for Tumor-necrosis-factor Receptor-Associated Periodic Fever Syndrome. It is in the Periodic Fever Syndrome family, which is also where Systemic JIA has been placed lately.

The syndrome is an inherited one due to a malfunction to the TNF protein.

Since the symptoms of TRAPS generally fall within the rheumatology realm, a rheumatologist is generally who primarily treats the syndrome. Symptoms can include muscle and joint pain, fevers, rashes, uveitis, stomach upset and GI issues, and more. It can take a long time to get a diagnosis with TRAPS, sometimes up to and over ten years.

Medications like Enbrel and Humira can be effective, but Kineret and other interleukin-based medications have been seen to be more effective lately.

If you or someone you know has TRAPS, making sure to get the proper treatment is key as it can easily affect your kidneys and cause chronic kidney disease.

Sources: 

https://my.clevelandclinic.org/services/orthopaedics-rheumatology/diseases-conditions/periodic-fever-syndrome

https://www.rareconnect.org/en/community/traps-syndrome/article/traps-infographic

http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Tumor-Necrosis-Factor-Receptor-Associated-Periodic-Syndrome-Juvenile

https://www.pinterest.com/aalliancesaid/traps-tnf-receptor-associated-periodic-syndrome/

http://ghr.nlm.nih.gov/condition/tumor-necrosis-factor-receptor-associated-periodic-syndrome

Medical Monday: Medication Tips

Posted on by Grayson

Before we dive into more medication tips, make sure you’ve entered this contest for a pill organizer (it ends tomorrow!) and have checked out the tips I have for managing your medications.

Some of the medications that we have to take aren’t pleasant, from infusions to shots to nasty tasting pills.

I’m looking at you, prednisone.

Here are some of the tips I’ve acquired over the years regarding medications.

1. Don’t try to take all the pills at once.

Oh, it seems like fun when you get it right, throwing the eight pills you take in the morning in your mouth in one go.

When it doesn’t work, though, you can actually choke.

Personal experience.

Please don’t.

2. Do consider taking pills with not water.

Some pills are easy to get stuck in our mouths. Drinking something slightly more viscous than water like moo juice can really help.

3. Prednisone should basically be taken with yogurt.

I’ve been on pred enough to know how nasty it tastes when it gets stuck in your mouth or throat, which it almost always seems to do.

Taking prednisone pills inside yogurt will help eliminate that while giving enough viscosity that the pills don’t get stuck.

4. Ice your tumtum while letting a refrigerated injection warm up…

So hey, let’s talk biologics.

When they’re cold, it hurts like all get out to inject them, so most docs recommend letting the injection sit out around 15 minutes to warm up.

This gives you perfect timing to gently ice the injection spot beforehand which will help lower the pain from the needle going in.

5. And ice right after you inject.

Injections hurt. Your body is already pretty full of body stuff, so piercing the skin and adding more goop isn’t always comfortable.

If you ice for a few minutes post-injection, it can help with any bruising AND pain.

6. Just rest during infusions.

Many have great ideas for being productive during infusions, bringing work or homework with them.

A lot of that anticipated productivity goes out the window, though.

Infusions suck. They make you tired, even if they’re just saline.

Please just rest. Bring a blanket and your laptop so you can watch Netflix and chill.

7. Take a deep breath.

It can be really easy, especially when starting a new medication, to be very worried and anxious. While it’s important to watch for potential side effects, it’s also important to try not to freak out too much.

Yes, I do realize the hypocrisy in my saying that.

I thought Enbrel or Humira were going to turn me into a hamster… and there’s a video on my youtube channel of me basically having a panic attack pre- and post-injection.

Try to do some meditation beforehand.

Take a shower.

Do whatever calms you, and remember that you’re not alone.

 

Terminology Tuesday: ICD

Posted on by Grayson

You may hear from your physicians or see on your chart a very odd number series next to your diagnosis.

For example, in August I altered the original picture here to add 714.30 which is the ICD code for systemic juvenile idiopathic arthritis.

ICD stands for the International Classification of Diseases.

Essentially what ICD does is make it easier to communicate diagnoses across healthcare systems and between healthcare professionals.

The newest version is ICD-10, which some places are just finally implementing, is slightly different in that it is more specific for some illnesses and injuries like an ear infection. Physicians now have to list a lot more information including which ear, if it’s chronic, etc.

And, with that, some codes have been updated. Above you have 714.30 for SJIA. M08.20 is the new code, however, and it is much more specific to SJIA/Still’s. The old 714.30 was very vague, which M08.20 is only SJIA/Still’s patients.

So, if you see new weird codes on your billing statements, it’s likely because the CDC forced everyone to finally adopt ICD-10 in October 2015.

 

8 ways to get the most out of your doctor appointments

Posted on by Grayson

I hear a lot of complaints from other patients on how difficult it can be to work and communicate with physicians, especially given how short appointments often are now. I work with physicians for a living, so I get their side of it too – they have a lot of pressure to hit certain benchmarks and have a certain number of patients, etc.

Docs don’t like the current system any more than patients do.

Short of overhauling the whole system, which is a great idea but a topic for another day, what can patients do in order to get the most from physicians?

First things first, an initial appointment with a provider can be quite difficult. There is so much to cover and examine, especially for us that are chronically ill, that we often stick with that provider with little examination of that choice.

The first appointment with a provider should be treated like an interview.

Yes, there will be things that have to be covered, but you have the power to guide the conversation and, indeed, make it a two-way conversation rather than a one-way dictation on their part.

 

  • Ask them what they know about your current diagnoses and the medications you’re on.If they don’t know much, are they willing to learn? If not, hightail it out of there!
  • Make sure they are willing to communicate with various providers.My rheumy works with my PCP, ophthalmologist, and my dentist. My PCP in turn works with everyone else. This way, my PCP and rheumy are all on top of what is going on with me. It allows them to know much more about my personal care than I could really tell them.It also helps my dentist know when to pre-medicate for dental procedures.
  • Ask about their feelings on involvement in patient organizations like the Arthritis Foundation.My rheumy is on the local AF board. Many others are at least somewhat involved with chronic illness organizations. Ask them which ones they like and why – it could lead you to more resources.Likewise, you can help your physician learn about great organizations out there, too.
  • Ask about their feeling on utilizing technology to communicate versus phone calls.I love MyChart. So much. As someone with anxiety, phone calls are not my favorite – and if I’m not doing well, the last thing I want to do is wait on hold and then leave a message and then wait for a call back from the nurse, who has to talk to the doc…If your doc loves MyChart and you do too? Go for it! If neither of you does, that’s fine too.

    The most important thing is to set up the main communication method.

  • Ask how they feel about engaged patients bringing in information for them to review.If you’re the type of person who likes to read the latest medical journals for new research and medication information and your doctor doesn’t like that, you won’t be a good fit for each other. It’s neither bad nor good, just an incompatibility.
  • Bring someone with you.If you’re having a bad brain fog moment, having another person at your appointments really helps.It can especially help because we really only take in a small amount of what is discussed at an appointment, no matter how our brain fog is doing.

    What I do is text my hubby right as I’m leaving my appointments. It helps me go over main points and allows me to scan my brain for others things that were discussed.

  • Prepare for visits.I’m a list person. So many lists. Very write.What I do to prep for my appointments is I’ll look back over my social media for the last few weeks to see how I’ve been doing publicly versus how I think I’ve been doing. The reality is I’m always slightly worse than I think I am in the moment, so checking social media helps.

    Then I write down on a little half sheet of paper the basic topic with some trigger words. I might even print out a blog post if it seems like it will help.

    Some people use diaries. Others write on their calendars or use apps.

    Whatever works for you, make sure you bring topics to address and don’t let the doc go until you’ve hit all the topics on your list.

  • Tape record or videotape visits, with the consent of your provider.Not all physicians will be down with this and it’s certainly something you need to discuss. However, I know many people whose physicians will record appointments so that brain fog and memory issues don’t get in the way.This is also handy for showing loved ones how the appointment went and ask for their help on certain tasks.
What are your tips for getting the most from a doctor’s appointment?

Terminology Tuesday: generic vs biosimilar vs brand name

Posted on by Grayson

Amgen recently filed for FDA approval of it’s first biosimilar drug, an alternative to Humira (bonus, some info was presented on APB 501 at the recent American College of Rheumatology conference that Creaky Joints wrote up).

But what could this mean for you?

We hear the terms generic, brand name, and biosimilar thrown around a lot these days, so let’s start with defining each.

The difference between brand name and generic drugs is easily known in the chronic illness world. Brand name is what you generally see on commercials – Humira, Lipitor, Cialis, etc.

According to the Center for Drug Evaluation and Research (CDER), a generic drug is:

“A drug product that is comparable to a brand/reference listed drug product in dosage form, strength, route of administration, quality and performance characteristics, and intended use.” (slide 7)

A generic version of a brand name drug can be created after patents end (20 years- slides 8 & 9) or if the creating company/person waives patent rights, as long as FDA requirements are met… like bioequivalence:

“A generic drug is considered to be bioequivalent to the brand name drug if:

The rate and extent of absorption do not show a significant difference from the listed drug, or

The extent of absorption does not show a significant difference and any difference in rate is intentional or not medically significant.” (slide 12)

It may be easy to assume that biosimilars are the same as generics right?

WRONG.

Here is a great visual from Amgen (they’re not paying me – I just love this info!):

As you can see, a biosimilar isn’t the same as the original drug. In fact, the chemistry of it can be different enough that the bonds don’t really even resemble the brand name.

So how do they even work?

Biosimilars go through a vetting process with the FDA, not unlike those that generics go through but a little more involved, proving that their version of a drug is as effective as the original brand name version. As such, there is much more analysis that goes into the biosimilar process than the original.

Amgen Biosimilars actually has a great comparison of biosimilars and generics to help define the differences between the two terms. Creaky Joints has a great breakdown as well.

Biosimilars are a great thing! This could save us money, get more drug options out there, and perhaps help someone unable to get on a certain drug due to insurance issues at least onto the biosimilar.

It’s not all golden though.

There was a good fight to get naming protocols in place and, thanks to Creaky Joints and Seth’s 50 State Network, that’s been dealt with.

The biggest issue right now is patient notification.

Thanks to Amgen, you can see where things currently stand.

A quick note – not all biosimilars will be interchangeable. The problem is, though, that the drugs that are deemed interchangeable can be substituted for your original medication even if the script is written specifically for the name-brand drug.

One of the biggest problems with that is that this can be done without the notification of the patient OR the healthcare provider.

Yeah, kind of a problem, especially as our bodies don’t always react to different medications the same no matter how similar they are. Some people aren’t able to take omeprazole (Prilosec generic), for example, as their body doesn’t process the medication the same way due to the slight differences.

For us arthritics, this could be bad news. Even if you’re stable on a medication, your insurance or your pharmacy could do this, possibly bringing someone out of medicated remission, and you wouldn’t quite be able to figure out what happened for a bit.

Would you be able to get stable again?

I certainly don’t want to find out!

Want to join Seth’s 50 State Network and help make sure that patients are notified when drugs are changed? Check it out here!

 

Get Freaky Friday: link roundup & more on #ChronicSex

Posted on by Grayson

Are you getting married but can’t do regular wedding rings? Check out these alternatives!

Mental health issues can be crippling. If you’re in love with someone dealing with anxiety or depression, definitely read up on them. It may surprise you when you learn that your partner’s anxiety is why they work so hard or just how consuming depression can be.

Both of those can cause very real and awful physical pain too, so brush up on ways to support your loved one through that.

Making sure that you follow the six steps laid out by Arthur’s Place – communication, picking your moment, preparing your body, foreplay, positions, and confidence – can make all the difference. So can sex toys!

Mariah is one of my favorite people, hands down. She wrote this great piece back in 2014 about how to initiate a conversation with your doctor about sex. It’s a must read! She also has written great pieces about scheduling sex, how RA can affect your sex life, how to talk with your partner, and how to improve your sex life.

No matter your condition, you can have a great sex life. Rachelle Friendman lives with quadriplegia and still does! She also proves that you can still look super sexy, no matter what. After all, Oracle/Barbara Gordon from Batman has historically been sexy and disabled.

Beauty & confidence start from within, so make sure you work on your self-love & self-care.

There has been a standard in the media regarding depicting female versus male pleasure. Many movies that show females orgasming, etc, get NC-17 ratings instead of the R ratings movies showing men cum get. Perhaps, though, this is changing with Magic Mike, 50 Shades (BARF, but okay), and other films along with strong feminists who embrace their own sexuality like Nicki Minaj.

Speaking of orgasms, here are 23 facts about them that you never knew.

Idolizing virginity & purity and shaming sexually active youngsters does not do anyone any favors. In fact, those comparisons to chewed gum do tons of mental damage, especially when you consider that a large number of first sexual encounters are forced in one way or another. We should, in all honesty, begin sexual education far earlier than we do.

Come enjoy the cuddle sutra!

Oh, and by the way…