Leveled out - My Actemra story continues

[Marie1479]

Hi everyone! As you can tell from my salutation I am feeling much better. I believe I have finally leveled out (thanks to all of you) at 6mg. I feel almost normal but do get reminders occasionally that PMR is still lurking in the background.

Two weeks ago my son came home from college with Mono. He was in such bad shape. The cold he had along with the Mono I caught from him but I was lucky enough that it didn’t last for more than 3 to 4 days and my son is feeling much better and back at college. Unfortunately we had to cancel our Thanksgiving plans but I didn’t want to take a chance and my son needed his rest. I thought for sure our Florida “empty-nesters” vacation was going to be cancel but it all worked out! I am writing this post sitting on my balcony in Florida. The weather 75-80 degrees!! When we left NY it was freezing

We weren’t planning on doing the Disney parks but because was I was feeling well, we decided yesterday to go to Animal Kingdom. We started out at 8:30am and arrived back at the resort at 7:30pm. I logged 15,000 steps which I haven’t done since my pre-PMR days. I had such an awesome day with my husband. I was a bit concerned I would pay for it today but I feel fine, just tired (in a good way). I will relax and enjoy the pool today to give my body a rest.

We fly home on Sunday and I will wait a couple days for my body to recover from traveling and then will resume tapering again.

BTW, the Avatar virtual reality experience at Animal Kingdom was amazing. For those of you who have seen the movie, you actually feel like you are flying on the bird and feel it’s warmth and breathing. As an IT person I found the experience just fascinating.

[PMRpro Ambassador]

We have just been in Malta for 3 weeks - temps of 19-20C (upper 60s) but hot sunshine and never cool overnight because the Mediterranean is still 20C at this time of year. Big shock after getting home on Tuesday: Wednesday morning first snow of the year down to the valley. Only a couple of inches but now hovering around freezing. No sitting on the balcony now!

[Marie1479 in reply to PMRpro]

Oh that sounds like such a nice vacation!

[PMRpro Ambassador in reply to Marie1479]

It was a very pleasant way of shortening the winter! November here tends to be a bit grey and nothing happening. We are responsible for editing a Proceedings and it takes over much of September to Christmas every year. But it isn't full time so as long as we are somewhere with internet access it doesn't have to be at home. So we were able to go out for a walk in the mornings, sometimes have lunch out and go back to the apartment to work in the afternoon. We didn't have to eat out all the time as there was a kitchen. We have an RV but OH won't use it in the winter - the apartment was a compromise and he's already planning the next trip in the early spring! It is an easy flight from here and quite cheap. All good...

[Marie1479 in reply to PMRpro]

Same reason we came to Florida. Short, cheap flight, (off season) and we are in a condo with full kitchen. The condo is in a beautiful resort so if we didn’t want to leave the resort we would be just fine!

[PMRpro Ambassador in reply to Marie1479]

The club thing we were persuaded to join includes reciprocal arrangements for cheap late breaks all over the place - and I think there are a lot of resorts in Florida. I was a bit worried we'd been conned but if we can use the weeks even just in Malta and Spain in the winter it will have been OK. Even one resort of their own in the Canary Islands which looks very nice - not sure about access to shops there though! Malta is funny - just like shopping in the UK which for us is perfect since when we are home we usually stock up on certain items that don't normally get a passport. So we had 3 weeks of UK butter and cheese! While I ate fish to my heart's content - they even had fish deep fried in batter a la English-style so OH was happy too.

[Marie1479 in reply to PMRpro]

Lol, my husband and I had dinner at Epcot in the “UK” at an English pub. The staff was English. Husband had the deep fried fish and love it. The resort I am at is timeshare as well.

[Marie1479 in reply to PMRpro]

My husband and I keep putting off our dream vacation of going to New Zealand because I have been well enough. We decided yesterday that we are planning the trip this summer !

[SheffieldJane]

So happy to hear about your happiness and comparative wellness. I am hearing good things about Actemra and it gives me hope. Your holiday sounds smashing!

[Klah]

So glad to hear you are doing so well...especially the trip to Florida. Traveling can really take it out of you. I also take the Actemra...infusions, but will give myself my first injection on Saturday. Have hopefully kept the syringe at the proper temperature in the fridge while on holiday. I have not noticed the “lead up” to the Actemra like I have in the past. Usually I start feeling fatigued...in need of a boost about a week before I am due for the Actemra. Then there is the reduced prednisone dose (8m in June....now starting 3m)....that has cleared up the brain fog. Like I keep saying, I am hesitant to celebrate! I have read many posts from people getting down to 2m or 1m, then flaring....we will see. Trying to follow my own advice and rest😊

[enan-illuc in reply to Klah]

Hi Klah,

I give myself the Actemra injection and have had no problem (it is 'scary'). I have to agree with you about the "lead up", I still get it but I am at 15mg of Prednisone and have a long way to go. I also think the Actemra is good.

Enan

[Marie1479 in reply to Klah]

My dr gave me a special travel insulated ice pack carry case. I’ll post a pix in a new post. I’m staying in a condo with a full kitchen so no prob with keeping injectable refrigerated. I am still unable inject myself. It’s totally psychological because it doesn’t hurt and in the past year had about 1000 gallons of blood drawn and never winched. My husband injects me and when he’s away I have my neighbor who is a surgeon inject me. I gave up trying to do it myself, not worth the anxiety! Remember Bevel side of needle down and take out 30min prior to cool down or it will sting.

[Jim-CJ]

Hi Marie, Could you give me the Prednisone level you started with and the tapering steps you went through with actemra. We have not started as yet and currently at 27.5mg. Been allover the map with tapering for three years. Thanks For Your Inputs.

Jim & CJ

[Marie1479]

Hi Jim & CJ,

I started out at 15mg Dec 2016. Then had to be increased to 20 MG. Was able to reduce down to about 14 mg but the entire time I felt horrible (flu, blurry vision etc) because I believe the PMR was never under control. Keep in mind I continue to work full-time against my doctors wishes. I started Actemra in April 2017 and it was for me life changing. I reduced by 1 mg per week. My doctor advised me I needed to judge the drop by how I felt. She said if I wasn’t well enough to drop every week, extend to week 1/2 or two weeks. I work in education so was able to really relax over the summer and take care of myself. I was down to 4MG but was starting to get that aweful PMR flu feeling again. I flew to Florida in July and the stress of the trip and losing my luggage caused a flare that bump me up to 7 mg where I had to stay for at least three weeks. When I reached 5 mg I started feeling flu-y again So I bumped myself up to 6 mg and have stayed there for about a month and I feel fantastic. I’m in Orlando at the moment and have been logging in about 10-15,000 steps every other day which is a miracle for me. When I return home I will drop probably every 3 to 4 weeks all depending on how I feel. It’s very important you watch your carb/sugar intake as the steroids & Actemra raise cholesterol and glucose. It can be controlled by diet. I chose the injectable because I work full time and it’s just easier for me.

[Jackoh]

Good that,as you say, you appear to have levelled out especially after your recent bad experience. The actemra seems to be going well. It has been good to read the positive comments about it on this thread. Best wishes Jackie

[Klah]

Sorry for selecting a “random” post of yours for a question. Where you the one who had the rash with Actemra? I have 5 small red bumps on my abdomen...don’t itch much, but wondering if it is a heat rash. I have had 7 infusions of Actemra...but first injection 3 days ago. Thanks.