Reality versus Fantasy

Once upon a time I found a miracle in a pharmaceutical.  It was called Remicade.  I thought things were bad when I started it, and in the grand scope of things up to that date they were bad.  At any rate I went from needing steroid shots into my hips every 3 months, waking up feeling like a steam roller had run me over in my sleep, random swelling making surprise attacks randomly all over my body to feeling rather normal the majority of a time.  That miracle lasted a good 4 years before things started slowly returning.

Because I started Remicade before the inflammation had done major permanent damage returning to functioning and mostly normal was a realistic expectation of a working biological.

Today I am learning the reality of biologicals and Psoriatic Arthritis again, but my reality before is a fantasy today.  Stelara is doing amazing things for me, but unfortunately damage has been done over the last 3 years or so since Remicade quit working.  I have to realize that my normal today is a different normal than it was 5 years ago.

As I spend quite a bit of time watching tv these days the commercials about various biologicals that are treating Psoiratic disease make it appear that is you take these meds you will enter a magical land where you can run marathons, climb trees, paint your house, and dance all night when you take these miraculous cures to an incurable disease.  I understand this is part of the ugly machine that has become our necessary dance with big pharma.  They are in it for a profit, and any of you who have looked at your insurance claims know they are making HUGE money off of these treatments.  I just feel that someone needs to include a little reality with the pharmacy fantasy.

I have been very fortunate that I have had a few very good Rheumatologists who have given me the courtesy of being realistic with me, and giving me a little come to Jesus lecture about my sometime unrealistic expectations of my body and my treatments.  I just hope other Rheumatologists include the same amount of reality into their counseling on using biologicals.  It is however such a fine tuned dance between being realistic, being fatalistic, and being overly expectant and hopeful.

The lesser of two evils.

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

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

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

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. 

Life in the fast lane.... Oh wait a minute. I need to rest

I am now about 2 months into Stelara (7 weeks, but who's counting).  The good stuff is starting to really kick in, but the lack of stamina is hanging on like a big gooey booger.  I've been an insomniac most of my adult life, but the last 3 years it's been painsonia so there wasn't much benefit to being awake at 3 am when the rest of the world is enjoying the dreams.  Now however I do everything in spurts and with insomnia that works just fine.  The other day I used the inability to go to sleep time to organize my jewelry box, and then when I was awake 3 hours later at 5am I took advantage of the early morning coolness to clean my pool.  Of course by 8 am I was ready for a nap so 2 more hours of sleep and I'm raring to go for another 3 hour spurt of productivity.  I've had this pipe dream of being able to go back to work someday, but I highly doubt I will find an employer that can appreciate my unique schedule.  I also wonder if I'm ever in a relationship that I live with someone how they will be able to understand my night time activities.    ANYWAY, I'm medicated and getting side tracked.  Back to Stelara progress.  My skin had a mild plaque flare after the 2nd dose, but not enough that most people who weren't me would notice it.  I also had some pustular flares on my hands.  One blister in particular is still hanging around.  It will come to the surface, but angry and tender, fill full of fluid and then shrink again and become a hard lump.  It's in hard lump stage today, but I see fluid beneath the lump so it will be filling back up again soon.  The other few spots either ruptured quickly and turned to cheese grater skin or just reabsorbed nearly as quickly as they appeared.  My pain is the other big improvement.  I have dropped to half dose of my pain meds and don't need them every day on the clock to stay around a 6 in the pain level (I know the stupid pain rating system).  To put it in words at 6 I can think, but the pain is most definitely there and a constant nagging, but the nagging I can dull out if I work at it.  Once it gets to 7 I'm no longer functional and there is no way to be functional without pain meds.  Then even with pain meds it's more of a resting functional because the pain is still there with the inflammation, but it's no longer consuming my world so much that I live in the fetal position.  I have noticed that my pain is still very much affected by barometric pressure, and since it's monsoon season here in the valley of the sun there's a lot of barometric changing happening.  I moved to Phoenix because it is a much more stable environment barometrically 10 months of the year.  I'll have to wait till September gets here and the weather levels out again to really see where I am in the pain realm.

One thing that is not a good thing is that my brain fog is worse than before.  I've had dr's make snide comments about how they don't know how I'm standing straight with the levels of narcotics I'm on let alone that I can talk straight.  Now I'm on less narcotics than I've been on in 3 years, but my brain just doesn't function.  My family is always either finishing my sentences or doing that thing people do when people stutter that is them willing a word to come out, but trying to not be insensitive about the stuttering.  If I had to do a complicated math problem (which happened daily when I worked) to save my life I'd be dead.  There is just no way I have the brain stamina or focus to do that these days.  I'm not getting lost in my house, but if it gets much worse I'm going to need to leave sticky notes on the walls to remember where the bathroom is.  I'm sure I will find a way to adapt, but as many of you who have brainfog know it is a truly frustrating part of the disease and medication side effects.

I've been working on a few non Stelara blogs because I'm sure you're as tired of hearing about it as I am of talking about it, and next week I'll start publishing them.

Hope you all can find a safe haven from your pain and find your joy anywhere you can.

~Heather.

Stelara the first month

Tomorrow will be my second dose of Stelara.  I know I have been severely negligent of the blog, but I've been trying to focus on allowing this drug to be my miracle.  The first week was tough, but slowly but surely I started seeing improvements in my skin.  My pain was not decreased, but it was changing.  Rather than large area pain from inflammation I was having a lot of acute pain in and on the joints which have always been my most affected joints in addition my knees joined the chorus.  This past week has been nearly as good as right before I took the TDAP vaccine that sent my already in flare PsA into full blown hell fire and brimstone flare.  I have ankles for the first time in 3+ years.  I also have a knee cap, not a large fluid filled bump between my shin and thigh.  My fingers and toes are noticeably less swollen, but this also means I can see the deformity that has taken place in the last few years especially in my pinky fingers and big toes.  It's not enough to be very obvious, but I see it.  The bend at the top joint of my pinky that goes against the natural curve of my finger, the one on my middle finger that is at the middle joint going the opposite way of my pinky.  That my big toe is so bent in on both feet it will get caught under the next toes when I walk if I am not wearing footwear that keeps them apart or steady in some way. I'm also fairly sure my feet have done some twisting as I've always had VERY flat feet and suddenly I have an arch.  None of these things are so bad that they will stop me from being productive in small spurts or finding some way to find joy in some meaningful to me project, but they will be lasting reminders of what lurks in my body even if Stelara is a miraculous success.    My energy is improving even though I still don't have much stamina.  I need to take a break frequently, but not necessarily an extended nap.  My skin is almost completely clear besides a few holdouts that were my worst psoriasis spots.  Even those spots like my ankles and toes if you didn't know I had psoriasis you wouldn't know I had it by sight.  Visually the skin appears like it is in the healing process with just the off colored scars left in evidence of the war that has been waged on my skin over the last 4 years since Remicade quit working.  By touch though you can feel the scaly raised texture in those few spots.  At this point even if tomorrow doesn't go well I have a glimpse of what could be so it gives me hope to keep trying.


Dose 2 of the last 3 biologicals have been the dose of doom for me.  I am very anxious about how things will play out tomorrow.  I will be truly heart broken if I have a severe reaction.  It has been nice to have a glimpse of my semi functional life even as limited as it had become before my flare went psycho.  I've started setting up my craft room, made tentative plans to do things with people in a few weeks once my immune system has recovered enough that a cold won't kill me, enjoyed swimming and doing projects around the house and yard.  I've tried to remain positive in hopes that the great power of the universe wouldn't give me so much hope just to take it away, but still I am hesitant to feel joy about this improvement because I've seen it yanked away so many times before.  I know the reality of my immune system is that this improvement has a shelf life because my immune system's super power is building super immunity including to meds that make it more normal.  In the mean time I will hold my breath and hope for a good outcome tomorrow, and if that happens I will enjoy the next 3 months like they are my last because I know what is waiting for me the day this drug stops working.

I can't commit to being more frequent at blogging right now, but I do keep pretty regular posts on Facebook.  If you haven't gone over and liked the Sausage Toes and Scales Facebook page you may want to.  I forward a lot of info I get from other Psoriasis, Psoriatic Arthritis, Immune Disease and Chronic Disease/Pain groups and pages so that is usually where you will see information about new and up and coming treatments and other topics such as coping with this disease and chronic illness and pain in general.

Here's to dose #2.  I pray you all are well and finding your happiness in any way you are able.

~Heather

Stelara approved.

The pharmacy says I am approved for a trial of Stelara.  Not sure what that means, but I'm guessing that they aren't going to give it long to do it's thing before deciding it's a failure.  Still waiting on the Dermatology department to "map" my psoriasis and the Rheumatology to teach me once again how to jab a needle in my belly fat.    So begins the journey to the last leg of the pharmaceutical trip for a while.  Work or not work this is the last option until something else gets approved.

I also start moving Saturday.  I have found a house with a pool.  The pool was #1 on my must have list.  Swimming is about the only real exercise I can do consistently, and my psoriasis improves so much from the time in the sun and chlorine.  Last year my skin nearly cleared up from being in the pool almost daily.  Plus being in the water even if I'm not doing enough actual swimming to be considered a cardio work out helps keep my joints more fluid.

Soooo forward on the march continues.

Happy June eve!

~Heather