I was given the link to a 60 minute survey that is available to help with early diagnosis for six autoimmune diseases: Rheumatoid Arthritis, Ankylosing Spondylitis, Psoriatic Arthritis, Systemic Lupus Erythematosus, Still’s Disease, and/or Sjogren’s Syndrome. They are taking the subjective reports of ‘Adult Onset’ patients who have an official diagnosis. At this point I have not done the survey myself, but I plan to in the next couple days when I have time. I’m doing my part to help promote this survey and encourage anyone with the listed autoimmune diseases to help out– it would be great to to help expedite the time for diagnosis for any and all of these diseases. Early intervention is key and will make a great difference. Take the time and follow the link to do your part: #60MinuteGameChanger
Tag Archives: Ankylosing Spondylitis
Happy 1 Year Anniversary
So wordpress was kind enough to inform me that it’s my 1 year anniversary (July 29th to be exact). Throughout this year I have not been as diligent as I would like with the posts, but I hope to be more on top of things for the upcoming year. I have a Yoga for Arthritis book I want to review; a study of tumeric; a look at the role of religion and beliefs in chronic illness; stretching programs; and maybe a secretive event to share with everyone.
Thanks to those who have come, read, and commented on my posts. All I can ever hope for is that the info I post on this blog will be helpful, encouraging, and supportive for someone else.
Stay Loose!
Review: Japanese Mint Oil
Japanese Mint Oil- 30 mL Bottle
My girlfriend and I just returned from a 3-day camping trip out in Kananaskis. I decided to review this essential oil that I have carried with me over the past couple of weeks and was quite useful while camping.
Bed Review
My Lady and I have recently purchased a new bed. When purchasing this bed we didn’t find a lot of reviews online, so I decided that once we got ours that I would do reviews for the first few nights of sleep, and then update every so often. We started thinking about getting a new bed after we stayed at her parents’ house and slept on their memory foam bed– we both had one of the best sleeps we could remember. Shortly after that I posted in an ‘AS support’ Facebook group to get a poll to see what other mattresses ‘ASers’ used. The general suggestion was memory foam, but here is the list of brands, etc. that were recommended: Tempur-Pedic (cloud); Sleep Number’ Select Comfort (with 4″ memory foam mattress topper); Craftmatic; Servant Icomfort Series (which is supposed to be cheaper than Tempur-pedic; and Kingsdown Belgigue Trilum.
A Return
I have not been around for quite some time. I have been back in school since September 2013 working on prerequisite classes: Human Anatomy, Statistics, and Human Physiology. All of these course have been very heavy and my focus has been solely on them and not much else. However, I have thought of this blog often.
I have a number of blogs planned and I’m excited to get back into this. There have been a few times that I have wanted to pass along the link to this blog as a help to others; however, it has been so long since I have posted on it I was ashamed to pass it along.
Since September I have put my body through an incredible amount of stress and seen the impacts stress has with autoimmune; I have felt my pain increase; I had a flare-up of irits; I have been generally less happy and really not much like myself. But, recently I was given the gift of time: my girlfriend has taken on all of our bills, which has allowed me to take a leave of absence from work. With this extra time I will now be able to focus on my school work more, and focus on taking care of my mind and body as well. Part of taking care of my mind will be revisiting this blog. Sharing my experiences, being accountable, and posting about things I have learned.
I realize that the few readers I may have had, have probably moved on, but I must start somewhere. This is just an initial post to get me back into the groove. I have plans for more, and I hope I can reach out and share with others again.
Stay Loose!
Support
Support is one of the greatest gifts you can give to anyone living with AS or any chronic condition. My Girlfriend has been the most influential person and the most supportive person in my life. Throughout this blog I will be referring to her and the amazing support she has been for me. Recently, I posted a link to her blog discussing our diet, which is just one of many things she has done for me: adopting a gluten and dairy free diet. This is a picture of our yoga mats side-by-side, which was after an evening of stretching we did together– she has been so encouraging of me starting a regular stretching routine.
My girlfriend has also encouraged me to maintain a sleeping routine which has been incredibly beneficial. She has a great knowledge of medications, nutrition, and ‘going green’. Her blog focuses on our journey to become more green. For years I have wanted to cut down on the chemicals I expose my body to, and she has made that process so incredibly easy for me: she does all the research, and I reap the benefits of it! Reducing the chemicals I’m exposed to can only help to reduce the autoimmune! She has also attended a few of my Rheumatology appointments and been there to help encourage and support me through a variety of drug trials and sicknesses that I’ve encountered. She has seen me through my highs, and lows over the past 10 months. I cannot emphasise enough the incredible impact she has had in my life, and I would be where I am today without her.
My girlfriend believes in me and encourages me to look forward to things. Before we went to Costa Rica we had a number of conversations all starting with me feeling uneasy about doing a trekking tour with my health the way it was. She reassured me that she knew I could do it, and if for some reason I couldn’t, she was willing to rearrange the details of our trip to accommodate me. I felt so at ease, and so accepted. And, this past week she has been talking about rock climbing– something that is a great passion for her, and something I have expressed interest with. I told her I wanted to try, but the RA has made my wrist and ankle quite weak, and so I have put it off until I’m stronger. She responded that those things would just be issues I had to problem solve– like her having to problem solve her height, etc. See, she’s super supportive!
My family and friends have been a great support too! Everyone has been on-board with my modified diet, and is always asking about how I’m doing, and wanting to accommodate me wherever we go. At times this makes me uncomfortable, but I know they care about me and are just trying to look out for me. Also, earlier this year I sent out a message to family and friends to see if anyone would be interested in joining a team I created to do the Walk to Fight Arthritis in my local city. I had a great response from those who donated financially, and from those who came out to walk with me. This is our team: 
I do not have everyone’s permission to post his/her image, so I was a bit creative. These are simply representations and fictitious. Any likeness or resemblance to any real persons, living or dead, is purely coincidental.
Together we raised close to $1500 CND for arthritis research and programs and did the 5km walk. I was happy to support the Arthritis Society because they provide many great, and free, workshops for those living with arthritis.
If you know anyone living with a chronic condition, your support is the greatest gift you can give to them.
Stay Loose!
Sleeping
Sleep seems to be a struggle– especially for those with AS. I have struggled with sleep for a while. I remember before I was diagnosed with AS I would wake up before I needed to be up in the morning and I would curl into a ball (something like the fetal position) and try to stretch out my back before I needed to get up. The bed that I had been sleeping on was a pillow-top that was quite soft, and I’m sure that wasn’t helping much, although over a couple of years I grew accustomed to the soft bed. One of the biggest improvements to my sleep that I found, was a good pillow. I recently bought this pillow again, so I thought I would quickly review it. Continue reading
Biologics Day and Biosimilars
Good day to you all! Today I have my monthly TNF Blocker injection– my biologic called Simponi. I felt that it was necessary to discuss a current debate about biosimilars and interchangeability that is being voted on in Harrisburg, Pennsylvania today. These will be bills HB 746–”introduced by Rep. Bryan Cutler” (PA Pharmacists)– and SB 405- “sponsored by Senator Pat Vance” (ibid).
I have not spent a lot of time with this issue (I only have two citations and realize this makes me far from an expert on the subject), but I feel that some of the points that I have read are valid, and this does seem to be an issue that could be significant for those of us using Biologics. The basis of the issue is that there is a push to make ‘biosimilars’ that will be ” ‘comparable’ to the reference product,” but as Mellstedt et al. continues “…this does not ensure therapeutic equivalence. Inherent differences between biosimilars may produce dissimilarities in clinical efficacy, safety, and immunogenicity” (Mellstedt et al.). This seems akin to the ‘no-name’ prescription medication we can get, but could be a larger issue due to the nature of this medication.
The Pennsylvania Pharmacists Association is pushing to have this issue put on-hold until the FDA has an opportunity to review the drug. The argument that there is no reason to have legislation in-place for this yet as no applications for biosimilars have been processed, and they predict that it will be at least two years before this happens. They want to make sure that this drug is safe and there is an ability for patients to be able to switch interchangeably. They define ‘interchangeable’ as in the “safety and efficacy risks of alternating or switching are not greater than with repeated use of reference product” (PA Pharmacists).
I considered that interchangeability may be an issue if the medication did not have the same efficacy as the innovator medication. However, I assumed the medication I was administering would be accordingly labeled and ordered by my physician; therefore, the medication would be to the specifications of my treatment plan. However, Mellstedt et al. indicates that this may not be the case:
An important component of post-approval data collection is the ability to distinguish readily between different biosimilar products and the reference products, so that it is clear which specific product a patient has received. (Mellstedt Et al.)
I have had certain medications dispensed– either by pharmacist or physician request– as the generic medication, because they are cheaper, and I have not had any issues with it. What I did not realize was that these medications can be automatically substituted this way:
Automatic substitution allows for the dispensing of generic drugs in place of prescribed innovator products by pharmacists without the knowledge or consent of the treating physician. For the majority of small-molecule generics, automatic substitution
is appropriate and can produce cost savings. However, there are situations where automatic substitution is not advisable and may compromise safety and pharmacovigilance programs.(Mellstedt et al)
Mellstedt et al. continues stating that in certain European countries medications that cannot be automatically substituted– “drugs with a narrow therapeutic index, such as modified-release theophylline and calcium channel blockers” (ibid)– are put on a ‘do not substitute’ list to avoid errors by physicians or pharmacists, who may not fully understand the implications of substitutions. Therefore, Mellstedt et al. concludes that biosimilar medications cannot be automatically substituted for a variety of reasons including: these biosimilars will not be generic versions and due to a lack of expertise with these new medications when they arrive, that there may be small differences which have the potential to “affect clinical outcomes”. Also, there is the issue of potential adverse reactions happening, and physicians need to be aware of the medications that patients are taking:
Further, if automaticsubstitution is allowed, patients could receive multiple biopharmaceutical products over the course of therapy. Such practices would confound the collection of pharmacovigilance data. If an adverse event were to emerge after switching from one biopharmaceutical to another without documentation of the product change, the event would not be able to be linked to a specific product during the pharmacovigilance assessment, or it could be ascribed to the wrong product. For reasons of safety monitoring, it is essential that clinicians be aware of
the exact biopharmaceutical product their patients are receiving (Mellstedt et al.).
Lastly, The financial implications of this are quite large. I live in Canada, and I have a lot of my medication covered, but it still costs someone. My Simponi injection is close to $1800 CND each month– of which I only pay one nominal fee for non-group governmental coverage. In the USA, it seems that Medicaid covers the cost of biologics, and having biosimilars will drastically help reduce the costs of this medication:
The average daily cost of a biologic product is 22 times greater than traditional drugs and it is predicted that by 2016, eight of the top ten drugs on the market will be biologics. In 2011 alone, PA Medicaid was already spending $110 million on biologics. Any legislation that impedes or limits biosimilar interchangeability in the future will be a significant cost driver for Medicaid as these products grow in popularity. (PA Pharmacists)
The Pennsylvania Pharmacists association claims that “Big biotechnology drug companies” do not want legislation passed to create competition in their monopoly market and are fighting these bills. These seem to be a big, but not unsurprising, claim.
I do agree that there should be some competition in the biologics market, and that hopefully this will make the medication more affordable and accessible to those who need it– this medication has done wonders for me. That being said, the same safety regulations for the use and administration of the innovator medications needs to be applied to the biosimilars.
What do you think?
Stay Loose!
Citations:
1) Pennsylvania Pharmacists Association. http://www.papharmacists.com/associations/12462
/files/Biosimilars.pdf
2) Mellstedt. H, Niederwieser. D, Ludwig. H. “The Challenge of Biosimilars.” Annals of
Oncology Vol 19: pg 411-419. Published Online 14 September 2007. http://annonc.oxfordjournals.org/content/19/3/411.full.pdf+html
Diet
I have been on a Gluten and Dairy Free diet for the better part of this year, and my lovely girlfriend has been on this journey with me. Her support is immense, and I would not be where I am in my life right now without her. Bellow is a post on her own blog referring to our diet, and one of the side-effects we’ve met since starting this diet:
Wait, I thought going gluten-free was supposed to stop bloating and upset stomach!
Stay Loose!
Day-By-Day
For the past month or so I have tried to stretch each day. I was doing so well for about three weeks in August, but since then I have been a bit inconsistent. I started this process with an app called Daily Insist that I downloaded on my iPhone as a free app. This app allows you to set up a habit you would like to create and provides you with time-frames to continue your habit for– 7, 14, or 21 days. You can also set reminders for you to complete your tasks and it keeps track of your progress:
Journey With AS 