Starting on Gilenya.

My notes about the experience.

 

2nd September, 2013

On review of my last MRI, it looks like the lesion load in my brain has increased and the lesions are 'active'. My neurologist wants to start me on something more aggressive named Gilenya (fingolimod)

I've been on Copaxone for 3 years but it's not working. Prior to that I was on Betaferon for 2 years.

In preparation I need to have some Pathology tests taken and see an Opthalmologist to be screened for Macular Oedema.

The Pathology will look at my blood and ensure I do not have HIV, , Hepatitus-B or Hepatitus-C. They also need to ensure that I've had previous exposure to Chicken Pox.

 

26th September, 2013

Had my appointment with the Opthalmologist. All good. He took a thorough baseline of my eyes before starting Gilenya. The OCT (Ocular Coherance Tomography) showed Optic Neuritis in my Right Optic Nerve from MS. I'm not surprised. It was picked up in a VAT (Visual Accuity Test) 3 years ago.

Back in 2003, 5 years before diagnosis of MS, I had a sudden blurring in my Right Eye. At the time, it was diagnosed as a Blood Clot in my Retina. My Opthalmologist noted Inflammation at the back of my eye. A sever change in diet for 12 months resolved it BUT since then I've had a strange feeling at the back pf my eye. I now think that was the first sign of MS Optic Neuritis.

Anyways, I got the Tick of Approval from the Opthalmologist to start Gilenya

 

 

30th Seotember, 2013

Pathology came back clear.

 

21st October, 2013

Turned up this morning at 8am to start on Gilenya.

Had a baseline ECG taken as well as Blood pressure

Something didn't appear right in the ECG, so it was decided to defer starting the drug and to refer me to a Cardiologist. I have an appointment with the Cardiologist next Monday.

 

28th October, 2013

Had a full Ultrasound of my heart this morning. They found nothing wrong. The Cardiologist wants 2 other test done. Wednesday I'm gettinh a SESTAMIBI Stress Test done. And I need to arrange a 24 Hour Heart Monitor.

 

30th October, 2013

An interesting day. No caffiene for 24 hours before. Nothing to eat after Midnight. No breakfast or insulin.

ECG and BSL taken. 18.

Radioactive marker injected

Waied t 40 minutes

Taken into Camera room and photos taken of Heart blood flow.

Waitining room for another 30 minutes.

Back in for prep for infusion of heart racing drug and more Radioactive marker. Connected to ECG.

BSL taken and 20 mmol/L. Both Dr and I were concerned about that.

Dr Michael Magee monitored the test while I was infused over 5 minutes. Desoite warning of what I might experience I only noticed a slight headache.

I was then taken into Camera room and photos taken again while my heart wqs under stress.

 

10th November, 2013

Went to Douglass Hanly Moir Pathology at Frenchs Forest to get fitted with a Holter Monitor. This will record my heart for the next 24 hours.

 

 

 

11th November, 2013

Monitor removed.

 

28th November, 2013

I had an appointment with my Cardiologists this morning to discuss my results. While nothing bad showed up he was still concerned about the heart systm that showed on the ECG. While he doesn't be;ieve that anything bad will happen when I start Gilenya, he couldn't give a commitment that there's no risk.

We've decided to put me in the Cardiac Monitoring unit at Royal Prince Alfred Hospital for 24 hours while taking the first tablet. That way immediate help will be available. 20th December.

5th December, 2013

I received a copy of a letter that my Cardio sent to my Neuro detailing his plan for my admission.

11th December, 2013

After trying to ring the Nurse from the MS Clinic for days, I rang reception and left them a message asking her to ring me.

12th December, 2013

I rang my Cardio to find out what was happening on the 20th ? He asked if I'd heard from RPA. No. He said he'd chase it up.

14th December, 2013

An interesting review of fingolimod after 5 years.

Fingolimod - A 5 Year Review

16th December, 2013.

 I heard from the Cardiologist today. I have to be at RPA Day Care Centre at 7am on 18th December, 2013.  He said he hadn't heard back from my Neuro or the MS Clinic.. Nor have I !

18th December, 2013

Turned up at 7:00 am and no-one had a clue. Waited until around 2:30 pm when a bed was free for me. Got moved into the room.

The plan was to take an ECG then start me with the First Gilenya tablet.

I was wired up to another Holter Monitor.

I was then told that they were concerned that the 6 hour period would carry into the night when minimum staff were there. They wanted to wait till tomorrow morning. WTF ! The Hospital fucked up and I suffer the consequences.

After some more consulatation they changed there minds

An ECG taken and then at 3:15 pm I took the tablet.

7:15 pm - Heart rate = 76 bpm

8:00 pm - Heart rate = 64 bpm

9:30 pm - Heart rate = 64 bpm

Lucy came in to see me. She took some photo's. Here's me with Holter Monitor, electrodes and some for the ECG (not connected)

 

19th December, 2013

8:00 am - Heart rate = 80 bpm.

Cardio arrived and told me that my heart rate had only dropped 10 bpm. Everyone happy. They wanted to keep me in till around 3pm to get a full 24 houyrs of monitoring

I finally left Hospital around 5pm.

 

2nd January, 2014

Over the last week I've been struggling with weakness in my legs. It's been exhausting standing up. It takes me 2 or 3 attempts to get my legs to support my weight.

 

5th January, 2014

Woke at 3am. Couldn't get back to sleep. Hearing noises that didn't seem real. Leg weakness, headache, pain across back of neck and sholders

 

6th January, 2014

Legs felt better. At 1:30 pm I rang 'MS Connect'. I left message for MS Nurse to ring me back.

During the night I felt like I had indigestion. The first time since 2004.

 

7th January, 2014

1:15 pm. I'm still waiting for someone to ring me  back.

1:30 pm. A lady from MS Australia rang me back from Melbourne.

She suggested I ring my Neurologist

2:30 pm. I rang my Nuerologist. He's on leave until the end of January. I spoke to the MS Nurse. and we made an Appt

 

14th January, 2014

Crapping better than I have for years. It happened naturally and I didn't need to force it.

 

 21st january, 2014

Met with the MS Nurse who manages patients starting on Gilenya.

 

5/1/2014
Woke at 3am. Couldn't get back to sleep. Hearing noises
Leg weakness, headache, pain across back of neck and shoulders

6/1/2013
Legs felt better
Went shopping
30 degrees
1:30 rang MS Connect. Took message for MS nurse who was at lunch.
She will call back

During the night I felt like I had indigestion. First time since 2004 when I started anti-depressants.

7/1/2014
1:15 pm still waiting for call

1:30 pm got call from lady in Melbourne. She suggested ringing Neurologist. Once we figured out my surname, she flagged that I'd stopped Copaxone

2:30 rang Prof Pollard. He's on leave until end of Jan. Spoke to Ann-marie

14/1/2014
Crapping better than I have for years

23/1/2014
Havent had a smoke for 16 hours

Just went to midway. By the time I got back my left leg was stuffed and right leg failing

27/1/2014

10:00 Normal insulin
Coffee 2 toast 1 egg bacon
11:45 25 mmol/L took 5 units

28/1/2014

10:00 Normal insulin
Coffee and Froot loops
12:00 21 mmol/L took 3 units
15:10 13.9

30/1/2014

Woke at 5:30. Although semi awake I slumbered tillaround 10. Weird dreams about being on an aircraft. Tiny seats. Kept slightly waking and then choosing to go back to sleep. Finally got up and legs eere bad

2/2/2014
I've noticed that after going to bed I feel cold. I need yo pull the summer blanket over me. I feel warm/hot prior to going to bed. I wake to find I've pushed the blanket off.

Last night I woke at 6:30. Slightly hypo. Ate some JBs. Got up to wee. Felt Hot and sweaty. Went to kitchen to drink some Pepsi-Max. Felt more hypo and sat on walker and ate some chocolate. Struggled back to bed. Lay down pulled sheet over. Stsrted feeling cold and covered top with blanket. Slept till 10 am

10/2/2014
Up at 7am. Had meds. Buzzing after an hour. Felt better after eating. Head fuzzy.

12/2/2014
Pathology taken

Changed to taking med in the evening. Took tab this morning. Next tabs in 36 hours. Tomorrow evening.

13/2/2014
Day 2 I felt good.

16/2/2014
Took med. About 30 minutes later my body was buzzing. Felt cold arms and legs.
Went to bed at 12

17/2/2014
Woke at 7. Fell asleep again till 9. Feĺl asleep again till past 11. Dreaming like crazy.

Felt bad all day.

Not taking Gilenya tonight

18/2/2014
Woke at 6 and went to toilet. Legs felt good. Up at 9:45. Legs good and I showered. Legs got worse over the day.

Took tab at 8pm

8:10 Got a cold feeling all over my body

19/2/2014
Legs feel bad

Took tab tonight

20/2/2014
Legs are bad
No tab tonight
 
21/2/2014
5am. Huge crap without effort
Legs are bad
No tab for 36 hours.
Picked up car at 2pm. Returned Hire Cat at 1pm at Five Dock. Needed help getting legs into car. No strength in arms to slide legs in. Not very hot.

Legs improved once home and in aircon and shoes off. Shoes make a difference. Weight or overheating ?
Tab taken

Bed at 10:45
22/2/2014

Woke at 6:30 am. Emptied bladder. Huge crap without effort.

Took tab at 8pm

23/2/2014

Legs really bad. Dragging left foot.

Noticed it was over 25 degrees in the house mid afternoon. Turned on air-con. Once house cooled my walking improved.

24/2/2014
Huge crap
Went back later and more.

25/2/2014

Saw Prof at 4:40 pm. Lucy with me
Plan is to infuse me with Prednisone 3 times over 3 days. Try to boost me for the fatigue.

He thinks the fatigue isn't related to Gilenya but just the MS.

If that fails we'll stop the Gilenya.

Strange. My legs improved while I was seeing him. I could lift my left leg.

My left leg was better all evening.

26/2/2014
Legs bad.

27/2/2014
Johns funeral.
After funeral I could barely get off pew into wheelchair. Left leg stalled.

15-20 minutes later I had no problem getting into Andy's car. Afternoon went on like that until got home and leg died.

3/3/2014
Legs not bad. Had lunch. Salad with Roast Chicken. Pineapple crush. Things went downhill 60-90 minutes later. Body tingling