Actemra and PMR

[Leeleep]

Actemra has been a lifesaver for me and my GCA. It has enabled me to dose down the prednisone and still heal the GCA symptoms. However, as I dose down prednisone, the PMR pain is back. So, unless I stay on the strictest diet, PMR keeps me disabled. I’m wondering if the Actemra will eventually kick in to relieve PMR symptoms . Today is shot 8 or 9. I would love to hear your stories that relate to this.

[PMRpro Ambassador]

You are unlikely to hear from many - GCA is approved and being used for GCA but only off-label for PMR and so very few people involved.

What sort of strict diet? Diet rarely helps PMR...

[Leeleep in reply to PMRpro]

Food allergy and sensitivity illumination diet. No gmo foods. Organic , no sugar,wheat and certain fermented foods. Low in carbs , low grains and no bad fats. Makes a big difference.

[Klah]

How much prednisone are you taking? I have PMR and have had 7 infusions of Actemra and have tapered the prednisone from 8m to 4m. I am feeling a lot better.

[Buddyk in reply to Klah]

Hi Klah,

I have been on actemra infusions for 18 months and off pred also that length of time. I am feeling better all the time. My rhumy may take me off of actemra in January . I had extreme fatigue but rest very little during the day compared to what I use to.

[Klah in reply to Buddyk]

Hi Buddyk, Did you just stop taking the pred when you started on Actemra? Do you think the PMR is gone? How will you know?.....see how it goes? Really glad for you. I don’t typically sleep very well, so taking a nap for an hour is easy...but I am not having the fatigue I have had over the last 4 years.

[Hindags]

Klah,

How long did you take to get from 8to 4 on Actemra. Did you hit any fatigue as you dipped below the Adrenal support threahold,?

[Klah in reply to Hindags]

I was at 8m last June...now at 4m. The fatigue has gotten better as I taper. I have had “mini flares” along the way, but they last a Day.....except in early November when I arrived on holiday....the heat and humidity, and the day and a half of travel knocked me down. Still have to be careful not to overdo...and especially manage the stress level with the holidays coming up. I am feeling so good right now that I don’t want to mention it❗️😊

[yogabonnie]

There is a lot of controversy about the Actemra here in the US. This is very interesting and so good it is working for you. I am not sure we can get it without shelling out huge amounts of $.

[Hindags in reply to yogabonnie]

What do you see as the kernel of the controversy,,? Aside to the $$$ that is.

[yogabonnie in reply to Hindags]

I have no way of knowing how true or valid this is.... it is the internet after all but I also read there is a class action law suit also.

statnews.com/2017/06/05/act...

[Leeleep in reply to yogabonnie]

I’m on the Actemra and a little concerned but I feel that the prednisone is too awful and the sooner I’m off it the better. I could never of reached my low dosing without Actemra. I’m trusting my doc and the constant labs. 🙏🙏🙏

[yogabonnie in reply to Leeleep]

HI. So glad it is working for you and I do NOT mean to be an alarmist...not at all... I realize that things going wrong is the exception and not the rule! Good luck and thanks.

[Leeleep in reply to yogabonnie]

Thanks 🙏

[HeronNS in reply to Leeleep]

It's entirely possible that in another age prednisone would never have been approved. We weigh the risks and benefits and take our chances, no matter what. And we are so fortunate to live in a time where we have options!

[HeronNS in reply to yogabonnie]

This is a very interesting article. it discusses the problems with collecting reports of adverse effects after a drug has been approved and on the market for a while. I found the last paragraph of this long article particularly interesting, in view of what it claims about issues with both initial testing and follow-up after release onto market: 'In May, the FDA approved Actemra to treat giant cell arteritis, an inflammation of the blood vessels that, like rheumatoid arthritis, is an autoimmune disease. It based the decision on a one-year study by Genentech that involved just 149 patients who took the drug. In a press release, the FDA said the trial’s “overall safety profile … was generally consistent with the known safety profile of Actemra.”'

[jrsteiger9]

I have a lung disease and prednisone has been a life saver for me. I started at 60 mil. almost two years ago and have tapered down to 5 mil. over that time period. It has slowed the progression of my disease and enabled me to have a semi-normal life. I am on oxygen 24/7 where I live. We are at a very high elevation. When I travel to low elevations, I do not need the oxygen. At some point, I will need it wherever I am; but, so far the progression of my disease has been slowed down due to the prednisone. All of the side effects that could happen from prednisone have been almost negative for me. I am lucky that it has not caused me any serious problems. I have gained weight (20 lbs. over the last 18 months). Since my dose is so low, my doctor is letting me continue to use it. My disease is rare and all the meds are experimental so I'm staying on the prednisone as long as it works without too many side effects.