“Little Brave, Breathe.”

“You are fierce.  You’re a survivor.  You’re a fighter through and through.  Little brave, breathe.  There is a warrior within you.” – Beau Taplin

Thank you all for reading my post last week and for all the wonderful comments that both myself and my soulmate received.  We read each and every one of them and we’re so grateful for all of you! So this week I’m going to discuss my inflammatory bowel disease (IBD), my psoriasis (Ps), psoriatic arthritis (PsA), and the new medication that I have started called Humira.  I won’t go into great detail in regards to my IBD because…well…who the heck wants to read about that?! I do urge you though to check out the links that I’m going to put at the bottom of this post, I’m not going to spend too much time describing each disease because this post will focus on all three of them at once so the links are great resources for more information.

IBD is an extremely awful disease and if I’m being honest, it is really difficult to live with.  Some days are definitely easier than others but the hard days are REALLY hard.  I know people hear the term IBD or inflammatory bowel disease and just think it’s all about poop! When really, there is so much more to this disease and also, not to confuse it with irritable bowel syndrome (IBS) which is also a difficult condition to have, but does not cause the same issues and damage that IBD does.  It has taken many years for me to find specialists that have been able to help me.  As I mentioned in my About Me section of this blog, I have had psoriasis since the age of seven and it’s just now at the age of 29 that we have found so much information in the link between psoriasis and IBD.  I met a wonderful and amazing woman by the name of Sarah through Instagram, her IG username is: sarahsbellavita if you want to check her out, she is also a very talented photographer and artist!  So Sarah also has psoriasis, psoriatic arthritis (PsA) and IBD and all of a sudden I had this major light bulb moment.  You can have a form of IBD that is tied in with psoriasis?!? I messaged her right away and she provided me with so much information and help based on her personal experiences.  Ultimately I am where I am today with my diagnoses and treatment because of her knowledge and her willingness to share with me! So here is big huge thank you to you Sarah, you are amazing, kind and so strong!  You are a true warrior and I’m grateful to call you a spoonie sister.  After speaking to Sarah, I began researching how people with psoriasis can develop IBD as a comorbidity and I was actually shocked that after having gastrointestinal issues my ENTIRE life not one doctor ever said, hey we need to check this out.  The doctors always stuck to the same line “she just has a nervous stomach, she’ll outgrow this” when my parents would be pushing to find out why I was sick all the time.

When I ended up admitted to the hospital in May 2016, I had a colonoscopy done by my new local GI specialist.  When they wheeled me into the operating room for the test, my GI specialist was prepping and I pulled off my oxygen mask and kept saying to him “don’t forget, I have psoriasis, look for the connection!” I still laugh at this part because I was on pain medications and then they gave me a dose of something to relax me just before they sedated me and here I am yelling out instructions to the specialist.  I give him credit though because he smiled and agreed with me.  During that scope he found active colitis and also took biopsies to send off for testing.  Before being discharged home, he started me on a new medication for the colitis and scheduled me to follow up with him in his office.  The medication he gave me is called mesalamine which is an aminosalicylate anti-inflammatory drug.  This medication improved my issues by about 60% which is actually a big deal! When I went back for my follow up, my GI specialist said he wanted me on a trial of prednisone to hopefully really kick the rest of the symptoms out.  So we went ahead with what was supposed to be a quick 3 weeks of prednisone that ended up being a longer 3 months of prednisone.  Two things about prednisone: 1) it is literally a miracle drug and it will make you feel like a million bucks 2) it is also an evil drug that grabs a hold of you and then you have to fight to get off of it and endure your body freaking out because you have taken away it’s miracle.  During the 3 months of being on prednisone, I made two attempts to get off of it (not including the original taper after three weeks) each attempt, by the time I was down to 15mg I was either on the phone with my GI office asking them what the hell to do or I was in the emergency room.  Finally, in December of 2016 I decided that I would do whatever I had to, to get off of prednisone before Christmas and on the 20th I took my last pill.  Prednisone caused me to gain 20lbs., my face rounded out due to a condition called “moon face” and I was just swollen everywhere.  Thankfully, once you stop the medication, as time goes on a lot of the side effects do go away on their own.

So now the big question, am I better?? No.  Once off the prednisone my IBD flared again and I was pretty much back to where I started so at my follow up with the GI specialist we discussed our next steps.  The first thing to do was a test called a calprotectin test, this is done by a lab in Mississauga and basically it allows them to test your sample and determine how much inflammation is present in your GI system.  The test is pretty cool and really expensive but thankfully my GI doctor recently started an IBD program through his office that I was enrolled in so the test was covered for me!  I was his first patient to do the calprotectin test so I thought that was pretty interesting.  Basically what happens is the lab sends you a kit via Purolator and inside the kit are ice packs, sample bottles and foil packaging.  So you do the collection, put the bottle inside the foil pack and then insert the ice packs provided, call Purolator and they send their driver to pick it up and return it to the lab.  About three weeks after doing the test the results came back high which signalled to the doctor that I still have active IBD/inflammation going on.  Once that was done, the next thing was a second opinion with the GI team at Mount Sinai in Toronto.  I went there in January 2017 and saw a great doctor who agreed with everything that had happened so far and also recommended that we move on to a type of medication called a biologic.  So then my GI specialist here in Lindsay and I started talking about my medication options.  Both specialists wanted me on Humira as soon as possible but Humira isn’t cheap, as in it’s $30,000 per year for treatment of one person.  So in order to get me on Humira, I had to “fail” at least two other medications…cheaper ones.  So we trialled Imuran (azathioprine), which is an immunosuppressive medication, I took it for a week and all it did was make me worse so it was automatically considered a fail within the first 7 days.  Ok, so that’s good, we’re getting closer to the medication that I really need.  I asked my specialist what my next option was and he told me that I would have to fail methotrexate.  I was at a loss; they wanted to put me on a chemotherapy drug! So I immediately pulled out my drug guide and read all about methotrexate and all I could think was this isn’t even the medication they really think will help me but I have to take it, suffer the side effects and then see what happens from there.  I was really not sure how I felt, on one hand I know it can be a very successful treatment but on the other hand I just couldn’t wrap my head around it.  Then I got a call from the nurse who runs the IBD clinic at my GI doctor’s office and she told me I had failed methotrexate so we were moving on to Humira! But wait, how did I fail?? I failed because I have not had children yet and would like to start a family in the future, for that reason, methotrexate is contraindicated! So then began the long process of securing Humira for me.

Since Humira is so expensive, it takes a long time for all the paperwork to be processed and for insurance companies to do the necessary work on their end in regards to coverage.  So Humira (and quite a few other similar drugs) use a patient support program.  The program basically holds your hand through the whole process and the case worker assigned to you is responsible for all the paperwork, phone calls, documents, coverage, etc.  It’s actually an awesome idea because 1) I’m sick so I don’t want to be rushing all over trying to organize things and 2) I wouldn’t even know where to start.  Something else that I love about the patient support program is their resources in regards to funding.  If you are denied coverage of Humira, this program will find you financial support and/or compassionate treatment.  Which means that if worse comes to worse; they will give you free Humira.

In the meantime, I was dealing with another situation.  Remember when I said that prednisone is a miracle, well it completely got rid of ALL of my psoriasis.  I have never known what that is like since I was only five or six years old when my skin was clear for the last time.  Now here’s the kicker, once you stop prednisone, your psoriasis comes back…and it’s worse! So not only is it back on my arms, legs, scalp, and face but also in new places like my finger nails, toes, inside my ears, etc.   So while we were working on the Humira coverage (which by the way will also treat my psoriasis) I was referred to a skin clinic in Peterborough.  Since the plan was to get me on the medication, they agreed to see me and assess my psoriasis situation as well.  Now, let me just take a second to say how amazing my doctor and nurse are at this clinic.  I was immediately accepted into a research trial through their clinic as they want to follow my progress on Humira and use data collected from me to help other people who need to start the medication.  My nurse at the skin clinic said that due to all my other illnesses as well as all the medications I take, I will be beneficial for data as I cover a lot of different categories.

After finally getting both doctors on the same page, meeting my nurse at the skin clinic and getting enrolled in the research trial I found out that I was approved for compassionate treatment of Humira because the doctors wanted me on it as soon as possible.  So I was provided the medication for the first dose, second dose and I’m waiting on my shipment of the third dose all at no cost to me.  Which I find amazing and I’m so grateful for the efforts this patient program puts in.  Also, I just found out that as of yesterday I have been approved for three months by my insurance company.  My patient support program has already started the process of getting me more coverage because obviously three months is not enough! Since I’m part of the research trial, I had to complete my paperwork and first injections all together so I was scheduled to go back to the clinic the week after my initial appointment.  I was counting down the days and then I got an infection! Somehow I developed inflammation in my jaw and had to go on antibiotics so they had to cancel my start for Humira (it lowers your immune response so it’s harder to fight off infection).  Again, my amazing nurse got in touch with me, reassured me that another week was not going to make or break me and told me to rest up and get well.

Finally, Tuesday of this week I had my appointment, we went over all the paperwork, questionnaires, etc., then the big moment, the injections.  Now usually I’ll be giving this medication to myself but since the first dose is what they call the loading dose, it involves giving four injections.  So my nurse did two of them in my upper arms since I can’t use those sites myself and then I did the other two in my abdomen.  I won’t lie, I hesitated before I stabbed myself for the first time but then I sucked it up and just went for it.  Not so bad, it’s a stinger but totally worth it if it ends up helping me and possibly putting some of my diseases into remission.  So now that the first dose is done, I will do a double dose (2 injections) at home in another week or so and then I will be on my maintenance dose which will be one injection bi-weekly.  The good thing is, if I’m not really happy with the results or their not as good as we hoped, they’ll change around the dose to one injection every week or whatever will give me the best results.  Being a part of the research trial is ongoing over five years, with follow ups at the skin clinic every 3-6 months.  Every week I have to complete one questionnaire and then on days when I have follow up appointments, there are four questionnaires.  This allows them to follow my expected treatment outcomes, the emotional aspects of my diseases and treatments, etc.  I think this will be a good thing, it provides me with constant communication with a team of specialists who will help me along the way.

The last step to do is send me off for a second opinion from a rheumatologist.  I saw one already a few months ago and he dismissed my concerns in relation to extreme joint pain.  He said I was “old” due to my health deteriorating so rapidly over the last two years and that was the cause of my pain.  He was also sure to put in the last sentence of his dictated report that he will not see me again as a patient.  When I brought this up to the doctor and nurse at the skin clinic, they both disagreed, told me they strongly believe I suffer from psoriatic arthritis and that they have a specific rheumatologist in Kingston who is younger and quite knowledgeable in the field.  Again, Humira will help with this as well but seeking a diagnosis is still an important part.

So there it is three diseases and one treatment all rolled into one blog post.  For those reading and learning about my diseases and treatments, thank you.  I appreciate you all so much and just know that you are helping to raise awareness, you are one more person who now knows about some diseases/syndromes that are not common within the medical field and especially not within the general public.

Wishing You All Health & Happiness,

Lyndsay

Check out these links for a ton more information!

http://www.psoriasis.org

http://www.crohnsandcolitis.ca

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2 thoughts on ““Little Brave, Breathe.”

  1. This has been a long, difficult journey Lynds. You are a fighter!
    We are hoping this treatment gives you some relief!
    Your family is here for you 😇❤
    Love you, Mom and Dad xo

    Liked by 1 person

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