Sunday, November 10, 2013

It has been a long while since I have updated regarding my Rheumatoid Autoimmune Disease. Lots of changes have occurred. I have a voice usually 90% of the time. I still have my bad days of course but it is much improved.

I have ventured into the world of Biologics. For the un Rheum initiated, Biologics are the highest level of meds available for RAD. They are medications, usually administered via injections or IV infusion that are biologically synthesized rather than chemically. They attack specific cells in the body to stop the disease process. I started Remicade in December 2012.  Remicade attacks the TNF-a cells in the body. I managed to completed 6 bimonthly infusions before serious allergic reactions forced me to stop. With Remicade I was able to achieve a glorious 6 weeks of relief. It was heaven! I was quite upset when I was forced to stop and start over with a new medication. I am now on Orencia IV. I just completed my 4th infusion. Orencia is given monthly instead of bimonthly and attacks the body's T cells. It has only just started to work in the last month so I am cautiously optimistic. Unfortunately I showed signs of an allergic reaction during my last infusion so we now proceed with caution. As I am allergic to so many unidentified things, my choices for medication are limited.

With the biologics, I have been able to reduce my need for Tramadol by half. I hope to one day not require it at all but for now I celebrate this small victory. I am still on NSAID's daily, in addition to various supplements and eye drops for my accompaning Sjรถgrens Syndrome.

The jump to Biologics was a scary one. These medications are very expensive. Each monthly Orencia IV infusion costs just under $5,000. That is the cost of just the medication and not the IV nurse, supplies needed to infuse it etc. If I wasn't lucky to have excellent insurance, I would never be able to afford it. I again applaud Canada's Health Care system for covering all costs of the infusions except for the actual medication. My friend's in the US likely pay more per infusion as they also have to pay for the clinic visit, use of the IV nurse and of course the supplies needed to infuse. Yes we Canadians may have to wait a bit to see some doctors but I will take that any day over having to pay for my health care.

In addition to expense, Biologics have some scary side effects and possibly allergies. Biggest threat is cancer. With Orencia I am at risk for lung cancer and lymphoma, Hepatitis, Tuberculosis amongst other things. To have to weigh the threat of these diseases against the attack of the disease you already have can be demoralizing. I delayed the jump to these medications for 5 yrs partly because of the risks. But you get to a point where you just can't take the daily raging of your body anymore and are willing to do and try anything for relief. I am at that point and am please to say so far, I have been successful.

1 Comment:

  1. Melissa Davenport said...
    I'm on Actemra infusions right now (just had my third one last Monday) and I, like, remain cautiously optimistic. Rheum is a cruel mistress.

    I've also been noticing changes with my voice. It's hoarse and sore much of the time. *sigh*

Post a Comment