First Dose Observation Consultation???

[Chelzer]

Has anyone had a consultation before the first dose observation? This cardiologist requires it. In a way I am thankful (seems he wants to make sure all will go right), but part of me is wondering if it is to scare me out of taking it. My consultation is on April 30 and my first dose will be May 3.

I read some posts that were negative to Gilenya and then I read ONE that made me stop and think. It said some people that have a positive outcome don't post. Right! So I'm done reading those posts! Lol (No news is good news, right?)

My neuro said that since I am young enough with no heart problems, I can skip the EKG. I decided to have one anyway to be safe. The dr asked me, "Why is your heart beating so fast?" I have no idea why. So we are doing research and I have bought a heart rate monitor to be safe.

Thanks, in advance, for reading and hopefully responding.

[susanmastrocola]

smm1969

Chelzer,
I, too had an initial consultation w/ cardiologist. He did allow it to take place the morning of my 1st dose observation, since I live 3 hrs. away from my Neuro.
I'm happy to share with you that everything was normal. No changes/drops in pulse. I was nervous, too, but luckily the nurse gave me the remote to the t.v. & I had alot of reading material, so the day went quickly. The nurse even allowed me to walk next door to lunch cafe. She told me that she has had only 1 patient who reacted badly & the patient's pulse rose after a half hr. back to normal. I've been on G for 3 mos. The only major side effects for me are fatigue & sore throat. Not enough for me to go back to injections! My latest bloodwork was fine, apparently since the doc did not call. I'm scheduled for an eye exam in May to check on pressure, so i'll let you know.
I think many people are tolerating this drug well & we don't hear so much about it. Good luck.

[Smilingface]

I was wondering what testing and questions are asked at the consultation visit with the cardiologist.

[susanmastrocola]

smm1969

Smilingface,
Cardiologist just asked me alot of medical history questions, such as family history of cancer, heart disease, etc. Did not even examine me. i did have an EKG prior to the appt., though.

[Chelzer]

Thank you Susanmastrocola for your reply. Glad to hear it is normal. Nice of them to allow you to do both the same day in your situation.

Smilingface, thanks for asking that question as it was also on mine and forgot to ask.

I am so blessed that my hubby works for a great company and can take the two days off to be with me. We are 45 minutes away depending on traffic.

Thanks again for responses!

[1tennisgirl]

Has anyone had a consultation before the first dose observation? This cardiologist requires it. In a way I am thankful (seems he wants to make sure all will go right), but part of me is wondering if it is to scare me out of taking it. My consultation is on April 30 and my first dose will be May 3.

I read some posts that were negative to Gilenya and then I read ONE that made me stop and think. It said some people that have a positive outcome don't post. Right! So I'm done reading those posts! Lol (No news is good news, right?)

My neuro said that since I am young enough with no heart problems, I can skip the EKG. I decided to have one anyway to be safe. The dr asked me, "Why is your heart beating so fast?" I have no idea why. So we are doing research and I have bought a heart rate monitor to be safe.

Thanks, in advance, for reading and hopefully responding.

I am scheduled to have my first dose on 4/30. I had an eye exam and blood work. Are we suppose to have an EKG also? I have to admit that I normally am a very strong individual and I have not let the MS Monster get the best of me. However, the more I read I am starting to get scarred and really hate this monster. WHY do we have to go through this???

[Cindarelly]

go to gilenya.com they have a website. yes pre ekg and 6hr check on heart rate every 6 hrs at the dr's office. Then post ekg now.
Call the go program and ask to talk to a nurse navigator.
The dr should know this, if he/she does not.. step back.

[michael09070]

gilenya

I have been on gilenya for 15 months and have had no bad reacti ons. I was dx in Dec. 2010 and i to was very scared to take a new medicine with minimal history but so far i am glade i tried it first. dont think i could take the shots. For me this was worth the risk. Good luck..

[Cindarelly]

I do not think this question is about how well a person does or doesn't do on the drug.
It's about how to start the drug. There is a proper way to safely start the drug. I had no heart rate drop in starting G.
I never had any heart issue with G. There is right and a wrong way to do this .. then do it without fear.. I think the heart issue is over reaction.. but the monitoring. (I.E.) taking the heart rate via a blood pressure cuff every hr..
no one is put in icu for 6 hrs...
This is not monitors (some dr's may have that equipment and use it) mine took my blood pressure and everything with a cuff... it never dropped.. I had no problem.. Follow the instructions.....................

[cosake]

Recommendations from Gilenya for pre-screening include an EKG and a pulmonary function test, as well as dermatological and eye exams.

I had the EKG and PFT at the hospital before my first dose and did not need a consult with cardiologist.

It's my understanding that they are now also recommending an EKG at the end of the 6 hrs. first dose observation. If you dr. is telling you that you don't need an EKG before starting, I would question that and consult another doctor, or ask your doctor to consult with the Gilenya people on proper pre-screening practices.

I had some heart palpitations in the first week after starting G and I am so glad that they had the EKG baseline to look at. I am a "healthy" 40 year old.

[Chelzer]

I had my consultation yesterday. First they did an EKG and then the dr came in and talked to me because of my fast heart rate.

This dr is cautious and I am thankful. He did an echocardiogram and sent me home with the holter (heart montior). The first dose is being postponed til we know more.

I will keep posting as it helped me having your alls support. Thank you.

[Leeaura]

My 1st dose requirements...

included blood work, an EKG, skin cancer screening, and eye exam, as well as the 6-hr monitoring. Pulmonary testing was never mentioned to me.

However, I would definitely prefer to err on the side of caution. Kudos to the dr who adds testing rather than foregoing them as "unnecessary".

BTW I thought the FDA required the testing as part of it's approval plan. Would not think that a doc could pick and choose which tests he wanted to order!

[Cindarelly]

I have been through some of the same things. My first dr did the first hour monitoring and ekg, lab work, eye exam.

No skin exam or lung function test.

I have had so much trouble. (not really G related) decided to go off of it and change neuro's)

new dr wants me back on it. Without any test.. I did get another ekg just for my benefit ordered by pcp..

so far on no ms meds at this time...

pondering which med to go for now!

[laurasari]

I also had to have a consultation before the cardiologist would give me the go ahead not the same day. He did EKG lots of questions and then scheduled me. Good luck

[meissie47]

I just had my consultation on Friday in my neuro's office. Ekg,labs,eye exam. Ekg was excellent eye exam was abnormal.Looks like Glaucoma but, neuro says he's sure it's from the MS & ON in 03 but that was in my left eye. But the test showed both my eyes have abnormalities.

Looks like Glaucoma. He wants me to follow up with an opthamologist. He says there is no hurry but I'm getting this done this week.


This is probably the third eye exam I've had where they thought I had glaucoma.

They said it would be 2-3 wks b/f my first dose.

But depending on the eye exam outcome I may not be starting "G"

Meissie