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The Immunosuppressant Tight Rope

The Immunosuppressant Tight Rope

It’s been a rough cold and flu season, and we haven’t even hit Thanksgiving yet. Throughout the fall, I’ve been sick more often than I’ve been well. In the late summer I experienced a flare that lasted several weeks. While my symptoms were tolerable on prednisone, as soon as I finished a dose pack the pain intensity immediately ramped back up. My rheumatologist reminded me there was still potential for the Plaquenil to reach maximum efficacy, as I’d only been on it for eight weeks. He also added Etodolac to the Orencia and Arava I’m also taking. I’m not sure whether the Etodolac or the additional weeks on Plaquenil did the trick, but my rheumatoid arthritis symptoms did quiet to manageable levels. However, while my RA is using its library voice, my sinuses continue to scream at me.

Throughout the fall, I’ve been developing upper respiratory illnesses that then turn into sinus infections. If I’m well for a few days, it isn’t long before I again suffer from the headaches, cough, congestion, and fatigue that accompany the next round of illness. Each time I go to the general practitioner, I’m told this is what’s to be expected while taking the immunosuppressants I’m on. At my most recent check-up with my rheumatologist, we had a more in-depth conversation, but I was basically told the same thing.

My rheumatologist told me the only way to treat an autoimmune condition is to quiet the immune system. While that’s good for my RA, and slows the progression of this degenerative disease, it’s bad news for my sinuses. After checking for inflammation and tenderness in my joints, he was considering increasing the dosage on my RA meds. However, he does view me as a whole person and not just a host for RA, so he asked what I thought. I told him that right now I’m in a tolerable, albeit uncomfortable, place. I’m not in intense pain from RA, and I’m not too sick to make it to work. Wary that increasing the dosage of my medications might make me even more susceptible to illness, I said I’d rather not go up on my meds.

Fortunately, my rheumatologist doesn’t just look at me as a conglomeration of symptoms, but rather as a person who is experiencing them. Instead of going up on my meds, he’s switching me from Orencia injections to Orencia infusions. He said that some people experience additional benefit from having the medication delivered straight to the blood stream. I’m grateful for my doctor, and I’m thankful that my voice counts. I also feel lucky that there are so many treatment options for us to choose from. However, I’m feeling nervous about how much of the cold and flu season still lies ahead, and what it’s going to be like trying to get through it.

We live in an exciting time for medicine. My great-grandfather, who is my only known ancestor with RA, could not have fathomed the variety of medications available to treat the disease that left his body unable to perform the farm work required to earn his living. In addition, there are many people who currently don’t have access to these drugs due to their high cost. I do feel fortunate to have treatment options that are fending off the progression of the disease, thereby reducing the likelihood of future surgeries or increased disability. That being said, I wish researchers could develop a medication that could tell my immune system to leave my joints alone, but keep it awake at its post in guarding against all the germs ready to take by body by siege.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • mp44sturm
    4 years ago

    As best as I can tell, RA & the other autoimmune diseases create problems because we have way to hyper immune systems. Hence, the immunosuppressant agents to treat it. There are many steps in the immune system response in RA.
    The trick seems to be figuring out WHERE in the many steps of the immune response needs to be targeted with meds. I think that the RA immune response step to choose to treat with immunosuppressants is probably different for each one of us.

    With all due respect Nanci, the prednisone you take IS an immunosuppressant. I encourage you to be open to all things used to treat RA. I encourage you to not be so afraid of the other RA meds.

    Here is my story;

    I was diagnosed with RA 15 years ago. I had the opposite approach to the RA meds compared to Nanci:
    I was terrified of getting on Prednisone because I was worried that I would
    •get psychotic,
    •not be able to sleep,
    •gain a ton of weight and
    •get diabetes
    from taking the Prednisone.

    However, I had no qualms about trying Enbrel, Humira, methotrexate, Cimzia, Arava, Orencia, Actemra, Zeljanz, Rituxan and Simponi.

    My stance on Prednisone changed when I had a situation in which I got Prednisone IV for an anaphylactic allergic response to the methotrexate. When I saw that none of my Prednisone fears mentioned above didn’t happen, I loosened up and was more receptive to Prednisone.

    So in addition to the Simponi and the Rituxan infusion I had 7 months ago, I also take daily Prednisone.

  • Tamara Haag moderator author
    4 years ago

    Thankms for sharing your experience!

  • Nanci Burns
    4 years ago

    This is why I refuse to take any DMARDS or biologics. I will not lay myself open to every bacteria that comes along. I’d rather take prednisone when I flare & take pain-killers when I hurt. I’ll live as long as God lets me, without taking any damn poison that makes me more vulnerable to infection than I am already.

  • Tamara Haag moderator author
    4 years ago

    It’s certainly a balancing act, with many factors to consider. I can’t perform well at my job responsibilities or my parenting duties on pain killers, but I can perform them on biologics. I also don’t want the progession of the disease to have free range, and I want to slow the joint deterioration as much as I can. So for now, I choose DMARDS and biologics (and the recurring illnesses I’m more prone to while on them) over increased risk of surgery and such high pain levels that I can’t live a productive life. It’s a rock and a hard place, for sure!

  • mp44sturm
    4 years ago

    See my thoughts above.

  • HeatherR
    4 years ago

    I am afraid – I work in the front of a busy dentist office. The other day, my Dr changed me from the mxt to 20mg arava. I am worried since I come into contact with all these adults and children. Furthermore, my husband has a very bad case of CA-MRSA. I am worried that by lowering my immune system not only will be susceptible to everything everyone brings into the office, I could bring it home to my husband and I may catch his MRSA that to date, I have mostly been able to dodge. What experiences have people had with Arava?

  • mp44sturm
    4 years ago

    I had some mild stomach upset at the start, but tolerated the Arava.

    I don’t seem to have had anymore infections than my usual with all of the RA meds that I’ve been on. I rarely get sick but I have noticed that if I have an abrupt RA flare, it seems that in the next day or two, someone else in the house comes down with a really bad case of a cold or flu.

  • Tamara Haag moderator author
    4 years ago

    Hi Heather, I have tolerated Arava infinitely better than Methotrexate. It’s hard to know how much it plays into the recurring sinus infections I’m getting, since I’m on multiple RA meds. It does provide some benefit for me. While this is a complicated balance for any of us on immunosuppressants, considering your husband’s MRSA it is important that your doctor is fully aware of all these concerns. Wishing you all the best, Tamara (Site Moderator)

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