As many of us are figuring out many of us have to choose the lesser of two evils when deciding on treatment options for Psoriatic Arthritis. It's been a battle of lesser evils for me for the last 10 years since I was finally diagnosed. Even when it comes to long term use of NSAIDs. Does taking ibuprofen for years and hoping doesn't eat our stomach or destroy are liver a lesser evil than having a moderate level of anti inflammatory pain relief? I am currently in the battle yet again. I am finally getting relief with Stelara which was it's own lesser evil battle because of all the unknowns, but now I'm switching from daily use of Lortab (narcotic pain med) to daily use of Zanaflex(muscle relaxer). On Lortab I can function. I've been on some form of Hydrocodone for most of the last 2 decades. It doesn't make me loopy, tired, foggy, or high. It takes the edge off a pain that makes it so I can't concentrate or function. It is a functional medication for me that I use as prescribed. With the new regulations regarding Hydrocodone and that Stelara has improved my inflammation levels that were fueling a majority of my pain the last 2 years my Rheumatologist and I decided that it was time to officially cut back on the narcotics. Most of my pain now is due to classic Psoriatic muscle, tendon and ligament stiffness due to periods of inactivity such as when I am sleeping SO muscle relaxers it is. Now I've been on 4 different muscle relaxers over the years and the only one which helped was Skelaxin. The VA who does my care and prescriptions in their continual circus ways have decided that Skelaxin is not "cost efficient" so even though my Rheum prescribed it the pharmacy has decided I need to try yet another one and Zanaflex is it. I've been on it 3 days and it does work on my muscle spasm and tension, but it also makes me want to sleep. If I sit down without being actively occupied with something like writing in my favorite blog I'm out in less than 5 minutes. SO which evil is worse? Pain and muscle tension or sleeping my life away? I am hoping that in a week or so the effects will lesson because it is genuinely working on the problem. I wake up in the morning and though I never feel rested at least I don't feel like those damn ballerina ninja elephants have been doing swan lake on my body all night. Oh the fun lives we live.
Also I need to pass on some info which I was told today for those of you in the US. There will be new regulations concerning all medications which contain Hydrocodone. This is significant for any of you who use these medications as prescription writing and filling procedures will change. You will need to discuss this with your prescribing physician to minimize problems and delays in getting your pain medications. It will take about 6 weeks for this to be fully implemented, but it will undoubtedly start causing issues even before it is officially implemented with our favorite pill nazi pharmacies ( you know who I'm talking about). Here's the link on the NEW FDA REGULATIONS. I also posted a link to the FaceBook Sausage Toes and Scales page. Please please please do not wait till the last minute to address your prescribing physician about this. I've done withdrawals. Trust me it's not fun and I wouldn't wish it on anyone. It can also be very dangerous for those of us that have extenuating health issues.
Peace and healing to all of you...
~Heather
Tuesday, August 26, 2014
Friday, August 15, 2014
Barometrically challenged...
Yesterday there was a discussion about weather and Psoriatic Arthritis in one of the PsA groups I am part of. Many of us run into doctors that insist that there is no connection to arthritis, pain and weather, but talking with people with different types of arthritis including immune and osteo arthritis there seems to be something to it. I went to search for reasons why this might happen. I remember stumbling on a Dr Oz episode that he talked about it using a balloon to describe how the pressure changes the equalization in the joints (and many of you know I DESPISE Dr Oz), but now I can't seem to find it. I did however find this Dr Oz post which talks about the effects of weather on many parts of the body and this is what he had to say about joints
"How air pressure affects your joints Our joints actually depend upon the outside air pressure to keep them in place. During storm fronts, when the external pressure drops, it allows the joints to loosen, which can cause pain, especially if you are using them a lot. If you notice that your body tells you wet weather is coming, talk with your doctor about how to be proactive and ease the pain before it can slow you down."
I'm not sure how talking to my Dr who thinks weather pain is in my head is going to help, but thanks Dr. Oz.
Arthritis today has a weather index tool to help you determine if it's going to be a bad arthritis day (you know in case your arthritis hasn't already told you so), but they seem to be clueless to the reason for this phenomenon as well.
WebMD the site I love to hate (you all know what I'm talking about because you too have decided you have ebola because of WebMD at some point) says that great aunt Mabel may not be your most accurate meteorologist (even if she is always right) because there is no SCIENTIFIC proof behind the joint/weather connection. And by the way this pisses me off too because I'm no one's great aunt Mabel yet. What about us youngsters?? My 17 year old niece can predict the weather too dammit.
Finally the University of South Carolina came up with a plausible explanation. The article does begin by insinuating that we human barometers are "eccentric" (could they mean crazy?) they do go on to say "Suppose you have an inflamed joint that is subject to swelling," said Fant. "If the barometric pressure is decreased, then that would allow the inflamed tissue to swell more, simply because there is less atmospheric pressure holding the tissue back. If there are nerves in that tissue, then those nerves would be stimulated by that swelling and that would translate into pain."
At the end of the day it sounds like most medical and scientific types think that we are a bit off in believing that we can predict bad weather, but their reason for feeling that way is they simply can't explain it. Many aren't denying that the frequency of occurrence of arthritic patients experiencing increased discomfort due to changes in barometric pressure (usually when it is falling), but since they don't know why it can't be true.
I could go on a soap box rant about all the mysteries of the universe that are unexplained yet true, but I will refrain. For now my barometrically challenged joints are going to praise all that is good in the universe because the Valley of the Sun is expecting a dry spell for a few days and I might actually get some relief. Here's to stable weather for a couple days! YEAH! Only a few more weeks of monsoon season and my love of Phoenix will return.
~Heather
Tuesday, August 5, 2014
Medications 2014 edition #1 BIOLOGICALS
In the 2 years since I posted the last medication blog we've had some new options appear on the radar.
In this post I'm going to focus on the biologicals and newest meds. I see a lot of posts in the Psoriatic support groups about what these meds are and which they should choose. I'll try to explain what each med is and does in layman's terms, but the reality is that you usually don't have a lot of choice in which you will get prescribed. It is always your right to decline a medications, but be ready to be added to the difficult patient category unless you can find a way to justify your decision and even then many Rheumatologists I have run across have a big of an ego (not always a bad thing) and could take your declination as questioning their oh so great judgement and still get you labeled as difficult.
I am addressing the meds that are approved for Psoriatic Arthritis in the USA by the FDA. If you are in another country there may be other prescribing guidelines for your country, but many of these are approved in multiple countries. Some such as Stelara has been having a harder time getting approval especially in countries that have socialized medicine.
So Here we go.
Enbrel:(Entanercept)
We'll start with an oldie but goodie. Enbrel was approved for Psoriasis and Psoriatic Arthritis in 2004. It was the first biological agent approved for Psoriatic disease. This is the medication that our Psoriatic celebrity golf pro Phil Mickelson has been having success with for some years now.
Enbrel is called a biological because it is genetically engineered from human protein. This means that a biological substance is used to make the medication. It inhibits TNF-Alpha proteins by binding to them so that they can not bind or activate TNF receptors. This function is a normal action in the immune system, but has been seen to be an overactive response in many autoimmune patients. The over function of the immune system causes inflammation. Because the medication is binding a part of your immune system it can lower your immune response so that you are less able to fight disease and infection.
Enbrel is given via subcutaneous injection. This means you are going to be shooting a needle into your thigh, arm or belly fat. Many people cringe at this idea, but it sounds a lot worse than it is. Your rheumatologist should schedule with a training session for your first injection so that you can see how it is done and ask any questions you may have about the injection process. My preference has always been belly fat, but that's a personal decision as to which area you choose to target. The loading process for Enbrel is 2 shots a week for the first 12 weeks, and then you will do 1 shot a week. There is some variation of dose based on your response after your Rheumatologist has evaluated you on the medication over several months, but after loading 1 shot a week is the typical dose. You may also need to continue with a DMARD while taking Enbrel.
While you are on Enbrel you will need to have regular blood work to monitor your inflammation, white blood cell counts and liver function. You will also need to have an annual TB screening including chest x ray.
Humira:(adalimumab)
Humira is also a subcutaneous injection medication (again with the shooting your own fat). Humira is also made with human protein, and works in a similar way to Enbrel by binding to TNF Alpha proteins. Though several of these medications have the same premise of binding the TNF Alpha there is a difference in the molecular makeup of each other these so that when one doesn't work another may.
Humira has 1 loading dose of 2 injection pens and then 1 week later you start the normal dosing cycle which is 1 injection pen every 2 weeks. Humira and Enbrel are usually the first strike biological meds most Rheumatologists go to for patients who are not responding adequately to DMARDs and anti inflammatory medications. They have the longest protocol history with Psoriatic Patients(and other immune diseases) so they are medications that Rheumatologists have experience with and know what to expect for most people in terms of progression of improvement and side effects.
Remicade:(infliximab)
Remicade is yet another TNF-Alpha inhibitor. This one however is given through an infusion. This means that an IV line will be set up and the medication will be dripped into your system through IV. A typical infusion can take anywhere from 2-4 hours depending on the drip rate your infusion professional sets. Mine generally took about 3 hours. Loading doses are at 0, 2 and 6 weeks. This means day 1 you will get an infusion, 2 weeks later another one, and 4 weeks after that another one. Once the loading dosing is done you will start a cycle of every 8 weeks. This can be increased both in dose size and frequency up to every 4 weeks. Because of this being a more detailed process for both patient and provider it is usually not given as an initial course of treatment until other therapies such as Enbrel and Humira have failed.
Simponi:(golimumab)
Simponi is again another TNF-Alpha inhibitor. It is a self injectable. It is one of the newer biologicals and was approved in the US in 2009 for Psoriatic Arthritis.After this medication we hit a dry spell on approvals until last year. Simponi is given as a self injectable for PsA. It is also offered as an infusion for RA.
Simponi dosing is at week 0, 2, 4 and then every 4 weeks thereafter. So first dose, then 2 weeks later another dose, then 2 weeks later another and thereafter every 4 weeks. It's big claim to individuality is that it was the first self injectable biological that could be administered only 1 time a month (less poking your own fat!).
Cimzia:(certolizumab pegol)
Cimzia was approved for PsA in September of 2013. It is yet another TNF-Alpha inhibitor (because if all the others don't work we should keep beating that dead horse, sorry personal soap box). Loading doses are 2 syringes at week 0, 2 and 4 (see Simponi loading schedule above) and then will be either 1 syringe every 2 weeks or 2 syringes every 4 weeks. It is also a self stabber.
Stelara:(ustekinumab)
Finally something a little different! Stelara was approved in the US in September 2013. It is also a biological that inhibits proteins, but inhibits interleukin 12 (IL-12) and interleukin 23 (IL-23) rather than TNF-Alpha. It is also the first biological only targeted at Psoriatic Disease. It is given by self injection. Loading doses are at week 0 and week 4. After that it is given every 3 months.
Otezla:(apermilast)
Last but not least we have the new comer. Otezla was approved earlier this year in March. It inhibits the protein phosphodiesterase 4, or PDE4.Otezla is an ORAL medication. The loading is done over 5 days gradually increasing the dose to the maintenance dose of 2 30mg pills per day (one am and one pm). I can't seem to find any information on if this medication is actually a biological, but my own opinion is it looks like it will probably be classified as a DMARD rather than a biological. I'm also not finding much information on if like other DMARDs it can be taken in conjunction with biologicals or stacked with another DMARD. Because this medication is so very new I'm having a very hard time finding much more than the advertising propaganda, but I'm sure over the next year a lot more will become available as it is prescribed more frequently.
So there you have the heavy hitters of our little corner of the psoriatic medicine cabinet. I will try to get to DMARDs again in more detail soon and probably anti inflammatories and steroids in future posts. Below are pics of when I was self injecting Cimzia and my Remicade infusion for anyone who wants to see how that works.
Happy Monday everyone!
~Heather
Proteins that increase the growth and function of white blood cells, which are found in your immune system.
Proteins that increase the growth and function of white blood cells, which are found in your immune system.
In this post I'm going to focus on the biologicals and newest meds. I see a lot of posts in the Psoriatic support groups about what these meds are and which they should choose. I'll try to explain what each med is and does in layman's terms, but the reality is that you usually don't have a lot of choice in which you will get prescribed. It is always your right to decline a medications, but be ready to be added to the difficult patient category unless you can find a way to justify your decision and even then many Rheumatologists I have run across have a big of an ego (not always a bad thing) and could take your declination as questioning their oh so great judgement and still get you labeled as difficult.
I am addressing the meds that are approved for Psoriatic Arthritis in the USA by the FDA. If you are in another country there may be other prescribing guidelines for your country, but many of these are approved in multiple countries. Some such as Stelara has been having a harder time getting approval especially in countries that have socialized medicine.
So Here we go.
Enbrel:(Entanercept)
We'll start with an oldie but goodie. Enbrel was approved for Psoriasis and Psoriatic Arthritis in 2004. It was the first biological agent approved for Psoriatic disease. This is the medication that our Psoriatic celebrity golf pro Phil Mickelson has been having success with for some years now.
Enbrel is called a biological because it is genetically engineered from human protein. This means that a biological substance is used to make the medication. It inhibits TNF-Alpha proteins by binding to them so that they can not bind or activate TNF receptors. This function is a normal action in the immune system, but has been seen to be an overactive response in many autoimmune patients. The over function of the immune system causes inflammation. Because the medication is binding a part of your immune system it can lower your immune response so that you are less able to fight disease and infection.
Enbrel is given via subcutaneous injection. This means you are going to be shooting a needle into your thigh, arm or belly fat. Many people cringe at this idea, but it sounds a lot worse than it is. Your rheumatologist should schedule with a training session for your first injection so that you can see how it is done and ask any questions you may have about the injection process. My preference has always been belly fat, but that's a personal decision as to which area you choose to target. The loading process for Enbrel is 2 shots a week for the first 12 weeks, and then you will do 1 shot a week. There is some variation of dose based on your response after your Rheumatologist has evaluated you on the medication over several months, but after loading 1 shot a week is the typical dose. You may also need to continue with a DMARD while taking Enbrel.
While you are on Enbrel you will need to have regular blood work to monitor your inflammation, white blood cell counts and liver function. You will also need to have an annual TB screening including chest x ray.
Humira:(adalimumab)
Humira is also a subcutaneous injection medication (again with the shooting your own fat). Humira is also made with human protein, and works in a similar way to Enbrel by binding to TNF Alpha proteins. Though several of these medications have the same premise of binding the TNF Alpha there is a difference in the molecular makeup of each other these so that when one doesn't work another may.
Humira has 1 loading dose of 2 injection pens and then 1 week later you start the normal dosing cycle which is 1 injection pen every 2 weeks. Humira and Enbrel are usually the first strike biological meds most Rheumatologists go to for patients who are not responding adequately to DMARDs and anti inflammatory medications. They have the longest protocol history with Psoriatic Patients(and other immune diseases) so they are medications that Rheumatologists have experience with and know what to expect for most people in terms of progression of improvement and side effects.
Remicade:(infliximab)
Remicade is yet another TNF-Alpha inhibitor. This one however is given through an infusion. This means that an IV line will be set up and the medication will be dripped into your system through IV. A typical infusion can take anywhere from 2-4 hours depending on the drip rate your infusion professional sets. Mine generally took about 3 hours. Loading doses are at 0, 2 and 6 weeks. This means day 1 you will get an infusion, 2 weeks later another one, and 4 weeks after that another one. Once the loading dosing is done you will start a cycle of every 8 weeks. This can be increased both in dose size and frequency up to every 4 weeks. Because of this being a more detailed process for both patient and provider it is usually not given as an initial course of treatment until other therapies such as Enbrel and Humira have failed.
Simponi:(golimumab)
Simponi is again another TNF-Alpha inhibitor. It is a self injectable. It is one of the newer biologicals and was approved in the US in 2009 for Psoriatic Arthritis.After this medication we hit a dry spell on approvals until last year. Simponi is given as a self injectable for PsA. It is also offered as an infusion for RA.
Simponi dosing is at week 0, 2, 4 and then every 4 weeks thereafter. So first dose, then 2 weeks later another dose, then 2 weeks later another and thereafter every 4 weeks. It's big claim to individuality is that it was the first self injectable biological that could be administered only 1 time a month (less poking your own fat!).
Cimzia:(certolizumab pegol)
Cimzia was approved for PsA in September of 2013. It is yet another TNF-Alpha inhibitor (because if all the others don't work we should keep beating that dead horse, sorry personal soap box). Loading doses are 2 syringes at week 0, 2 and 4 (see Simponi loading schedule above) and then will be either 1 syringe every 2 weeks or 2 syringes every 4 weeks. It is also a self stabber.
Stelara:(ustekinumab)
Finally something a little different! Stelara was approved in the US in September 2013. It is also a biological that inhibits proteins, but inhibits interleukin 12 (IL-12) and interleukin 23 (IL-23) rather than TNF-Alpha. It is also the first biological only targeted at Psoriatic Disease. It is given by self injection. Loading doses are at week 0 and week 4. After that it is given every 3 months.
Otezla:(apermilast)
Last but not least we have the new comer. Otezla was approved earlier this year in March. It inhibits the protein phosphodiesterase 4, or PDE4.Otezla is an ORAL medication. The loading is done over 5 days gradually increasing the dose to the maintenance dose of 2 30mg pills per day (one am and one pm). I can't seem to find any information on if this medication is actually a biological, but my own opinion is it looks like it will probably be classified as a DMARD rather than a biological. I'm also not finding much information on if like other DMARDs it can be taken in conjunction with biologicals or stacked with another DMARD. Because this medication is so very new I'm having a very hard time finding much more than the advertising propaganda, but I'm sure over the next year a lot more will become available as it is prescribed more frequently.
So there you have the heavy hitters of our little corner of the psoriatic medicine cabinet. I will try to get to DMARDs again in more detail soon and probably anti inflammatories and steroids in future posts. Below are pics of when I was self injecting Cimzia and my Remicade infusion for anyone who wants to see how that works.
Happy Monday everyone!
~Heather
 |
| Shooting Cimzia in my belly fat roll |
 |
| Pushing that Remicade into my blood. |
Proteins that increase the growth and function of white blood cells, which are found in your immune system.
Proteins that increase the growth and function of white blood cells, which are found in your immune system.
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