Remicade: Questions and Answers from my derm

[asterroc]

I was surprised at the start of my dermatology appointment this afternoon by having a doctor I didn't recognize (white, not Middle Eastern or Indian, I'm not sure precisely which my dermatologist is) walk in, but when I said I was expecting Dr. G, he explained that he was Dr. G's med student. :-P My derm spent nearly a half hour with me answering my questions and simultaneously writing notes to argue the case for the insurance company. I often wish he were less hurried with me, but efficiency is good too. This city is a hotbed of medical professionals, but I believe the majority of them are either in training or research, so it's hard to get an appointment. I still have more questions, but I told him to start the processes getting it approved, as the answers to the others will only clarify things for me, not change my mind.

Many thanks to those of you (meredithanne42 and poludamas) who helped me to put together my list of questions for the dermatologist. The answers are summarized below, and if you've got other thoughts feel free to comment as always! Italicized items I want to follow up.

Questions/Concerns regarding Biologics (Remicade)
My Priority: Pick safest product

Counter Indications
1. I have a benign heart murmur
a. Gave him my general practitioner's phone number, who recommended the echocardiogram, the number should be in my records too.
b. He’ll check with her/cardiologist, but what I described doesn’t sound like it’d be an issue.
c. If there were any loss in function it would be a concern for increased risk.
d. We'll probably get me another echo after a while just to confirm there was no change.

2. TB test
a. He’ll administer that after we get approval.

3. History of stress weakening my immune system
a. If we find I get significant increase in infections, we’ll stop.

General
4. Remicade as a carcinogen, since TNF-alpha blocker
a. Biased samples since elderly people primarily take Remicade and they are more prone to cancer and lymphoma.
b. Haven’t been any unbiased studies.

5. What role does TNF-alpha play in fighting viral/bacterial/fungal infections? Does it make a difference which of them it is?
a. Not well known other than inflammation.
b. Everything interconnected.
c. Look up cytokines

6. Why do you recommend this medication over others?
a. Only one with published case studies.
b. In treating rheumatoid arthritis, Remicade is the most potent, acts quicker, so likely will be the same for HS.
c. Its risks of lymphoma and TB are slightly higher for the same reason, but all miniscule.

7. Does HS get worse over time, and if so, does Remicade stop/slow it?
a. Unknown whether HS worsens over time, not enough studies.
b. Personal experience it’s been getting worse.

8. How many people have tried this? Success rate?
a. A few case studies, less than 20 cases.
b. No systematic trials (published) yet.
c. Millions of doses of Remicade have been administered for other uses.

9. Does it treat the quiescent state, or outbreaks, or both?
a. Apparently causes a remission that lasts for months.
b. Does remission mean outbreaks, or the quiescent lumps go away too? I think the former.

10. How will we objectively measure if it's working?
a. Reduced frequency of flare-ups, currently at every month or two. I’ll know before him.
b. Can I see a record of when I reported flare-ups?
c. I should start an HS diary. Maybe a spreadsheet.

11. Are there any withdrawal symptoms?
a. None.

12. How safe is it? How long has the drug been on the market? Have its long-term effects been evaluated?
a. See various above.
b. No long term effects.

13. Will it lose effectiveness over time?
a. The body can develop antibodies if used continually for a year or longer.
b. I would be using it for a 4-5 month course (once a month) so I would not build up any antibodies.
c. How can I tell if I did get antibodies?
d. Didn’t say whether the antibodies go away after ceasing use.
e. Didn’t say whether it would remain effective later in life.

Immunosuppression
14. Will I need to take the flu shot? Or would that GIVE me the flu? From you or my GP?
a. Do not take the live virus (mist) vaccine
b. Flu shot (attenuated virus) neutral. From GP.
c. If I had a compromised immune system or was prone to getting the flu or pneumonia, he would recommend it and the “pneumovax” (pneumonia vaccine), but for me he’s neutral.
d. I’m not sure personally if I think I should or not.

15. What happens if I catch a cold while I'm on it? What if I am sick right before or during when I'm supposed to get it?
a. Treat it like any normal illness.
b. Continue Remicade course unless significant increase in illnesses.
c. How can we objectively measure “significant increase”? Or is subjective good enough here?

16. How long after a dose do I have to worry about illness?
a. Didn’t get to ask. I’m guessing a few months?

17. Will this affect my allergies or asthma in any way (since the former at least is immune related)?
a. No.

18. Can I donate blood?
a. He’d never been asked that before, seemed surprised I’d ask.
b. Ask the Red Cross or whomever is running the blood donation.
c. Implication is that there’s no reason for MY health that I shouldn’t.

19. What if the insurance company doesn’t approve it?
a. Costs are prohibitively expensive, we drop it if we can’t get it covered. Which is good, because I wouldn’t be willing to pay for it myself.

20. How does the insurance approval process work?
a. He calls a representative from the pharmaceutical company, as well as the health insurance company.
b. Drug company people help make the case to the insurance company.
c. Contact him again in a week to ten days (via email) to remind him to follow up with the other people.

21. Will he make a paper out of my case? :-P

Process
22. How many times will I do the infusion? How often? For how long overall?
a. 4-5 times, once a month, so lasting less than half a year.

23. Where does it take place? Is it possible to self-administer at home?
a. At various clinics, infusion centers, offices, around the city. Not self-administered.

24. Do I need someone to drive me home?
a. Ask clinic.

25. Can I have a friend with me?
a. Ask clinic.