I started Remicade infusions in October 2020. They wanted me to start April 2020, but Covid 19 was in the world and I did not feel safe.

So, the 1st time i had the Remicade, They gave me Benadryl through the iv and my right chest started burning (I was told that the Benadryl was pushed too fast). Halfway through, I was also experiencing a tight chest. The paused the infusion and called Dr. Godhwani (my rheumatologist) and he came next door to the infusion center. He said to try to “power through” because there were not many options for me (but, he said it is my decision). I did “power through”, but developed a severe headache, nausea and tiredness. Dr. Godhwani said that that is usual and take Tylenol. The other “problem” I had, was that the recliner chairs were not at a 6 foot difference from each other, nor were there any partitions between chairs (and yes, someone was sitting to my right and my left).

I was sopposed to go back for next infusion 2 weeks later, but turned out my son Daniel contracted the coronavirus (yes, it was in my house – more on that with Covid page). So I did not get to go for next infusion until at the beginning of December. This time I brought my own Benadryl in tablet form (dye free), so that took care of 1 problem. They give tylenol at each infusion. This time the put me in the corner and I had my own partition (funny, no one else has partitions). This time after the infusion the headache and tiredness was back. I emailed all the doctors, Dr. Morgenthau (Pulmonologist), Dr. Shin (Neurologist), Dr. Kechejian (Primary) and Dr. Godhwani about the headaches. Thankfully, Dr. Shin took point and prescribed Elavil (Amitriptyline) for the headaches, it took a little while for it to take over, but it did and now the headaches are gone after a few days, after the Remicade.

My next infusion was January 2021, the headaches are usually worse at night, but the Elavil and sleep help, the tiredness is still there, usually up to 4 days after. Today is day 5 and I am exhausted still.

There are some other research and drugs, possibly coming down the pike, I will discuss this in another page.

So, for now, Remicade is the only possibility, I will take 1 day at a time!


Published by Sarcoidosis and Cathleen

Sarcoidosis Warrior

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