Looking Back – Day 95 – Appily Infused

Today is Day 95 of the Art Apple A Day Retrospective – for information on the project click here.

Day Ninety Five – January 3, 2010

Looking back 10 years ago today…

This apple. This apple said so much then and it continues to even 10 years later. I can’t believe that this last October it was 14 years that I’ve been on Remicade.

Wow.

I have so much to say about this treatment – all these years have given me some perspective and lots of experience. I will be adding the category “Biologics” here and working to index the posts for easily finding the information and will add the tags for the specific drugs. Unfortunately I have to say that obviously I’m not a doctor so my information is not to be taken as anything but as a patient observation – please consult your Rheumatologist with specific questions. But… I also turn to others who have the real life experience with a disease or drug. I’m doing this currently in a Melanoma group to learn about immunotherapy that my Mom has just started taking. Patient knowledge is imperative for understanding.

Here are three key points that I feel get missed in discussions of biologics in general and Remicade specifically.

Get Enough: I truly believe people “fail” the drug too soon. Fourteen years ago when I first started getting infusions, I read an article that said for people to have the highest level of success, the dose had to be high enough and the time frame short enough. What I hear/read in patient communities is people are being prescribed way under the FDA approved amount for AS/Axial Spondyloarthritis and at much longer intervals. I take 7.5mg/kg every FOUR weeks. I had to advocate for this – most Rheumatologists start much lower and every 8 weeks and then people say the drug isn’t effective. What if they got enough (it is FDA approved up to 10mg/kg every 4 weeks! for our disease) and they too had a 14 year run of “almost remission” like I have? I ache at the lost opportunity. I could be completely off base here but I experienced the difference even this month when my dose was adjusted down for my recent 40lb weight loss. My body immediately shouted “where’s the rest!” at least that is my opinion of what happened. I’m going to give it a few months to see if I equalize to the lower dose but the immediate joint pain was very instructive.

Give it time: On top of advocating to get enough of the drugs, you have to give your body time to adjust to the medications. All those years ago I was in such a crisis with this disease that I was basically bed ridden. (read here). Nothing turns around that level of disease activity quickly. When I hear people only took a drug (with no negative side effects) for only 3 months I worry that it just wasn’t enough time. I didn’t see my body start to make strides in a turn around for 6-8 months! I saw that it had changed things some so I wasn’t going to throw in the towel until I knew for a fact that it wasn’t working. With Humira I gave it a year. It helped some. With Enbrel I gave it 6 months. My Rheumatologist and I saw that my body responded some. The decision to go to Remicade was to try intravenous (get it directly into my bloodstream vs subcutaneous) and to get more medication (Humira and Enbrel were just not enough anti-TNF for my disease activity). At the 18 month mark on Remicade I was applying for a part time job when I thought I was heading to filing disability 3 years prior. That is the potential power of these meds! At 2 years I was looking for full time employment! Five years ago I had gotten my Real Estate Broker license and sold 22 houses in one year! These drugs have the potential to change lives. Please give them time to work!

Expect Fluctuations: Over the 14 years I’ve had times where I thought Remicade was starting to lose effectiveness. My Rheumatologist and I have had the discussion a number of times and we even at one point tested to see if I had built up antibodies against it. But autoimmune diseases of any type fluctuate over time. Periods of stress or high emotions are the most impactful for how they work. Other health issues can be blamed on AS when it in fact is something else. I have held fast to Remicade a few times instead of jumping to another of the many biologics for autoimmune arthritis for one big reason – this one I know works amazingly for me. And, it a month or two, I have come out of the flare. I am so grateful I stayed my course because I live a pretty good life on Remicade. The dose drop this last month was an eye opener because sometimes after a long period of “almost remission” I wonder if I need the medication. Such a weird trick the brain plays with that. I’ve had that thinking a number of times over the years and the disease is there waiting every time!

Those are three keys of Biologics I wanted to talk about today. Get enough, give it time, and expect fluctuations. Wishing you great success on whatever biologics you take. For more information on this please go to my original Day 95 post ~ Appily Infused ~ from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Day Ninety five – Appily Infused.

Aaaaaahhhhhhh!  I received my Remicade infusion this afternoon.

The vitality this amazing drug gives me is slowly working its way into and around my cells, blocking all those crummy little immune attackers that are friends to most people’s bodies.  In mine, they go haywire and have a big party.  Without the big pac-man, TNF blockers, I have an immune response that is slowly trying to fuse my spine together (among many other lovely things.)  Before I started taking the Remicade – over 4 years ago now – I couldn’t function from the pain.  I was on high doses of anti-inflammatories, nerve/seizure meds, and heavy duty pain killers including the Fentanyl patch, and a chemotherapy drug called methotrexate.  In February I will celebrate a three year anniversary of going cold turkey off all pain killers (well – I don’t count Advil) and I now only need my infusions, but…

Want to know what keeps me up at night? – – – thoughts of the Remicade stopping to work or losing the ability to be able to get it for insurance or financial reasons.  I put six little vials on todays image – they are $700 each and that doesn’t include administering the drug or various other costs associated with this medication.  It’s terrifying to even talk about it – but I will because people need to know what this thing called AS does to not only our bodies but our lives.  And, I’ll keep talking about it because such an amazing medication needs to be available to more people who are suffering and have no access to a medication that will give them their lives back.  I’m fighting for them – in perhaps an unconventional way – but they – YOU – are what keeps me going even when it’s easier to just stop.

Until tomorrow.

Jenna

Day 95 was created with pen & a blush of color.