Radiation treatments and PMR/GCA

[LCHRISTOP10]

PMR 2016, GCA OCT 2017. Necessary to stop Actemra 11/18 preop work up for Lumpectomy and Sentinal node biopsy done 1/23/19. Current dose Prednisone 14 mg. Results positive for invasive ductal cancer. Good news chemotherapy not needed. Will start radiation treatments in 2 weeks. Any experience or information if the breakdown of cells from radiation will cause increased inflammation and a flare?

[Hidden]

I have just started Actemra are you ok on it?So sorry to hear your diagnosis glad you don't need Chemo.Sorry i cant help re inflammation but there will be loads here who can advise you.Take care.xx

[LCHRISTOP10 in reply to Hidden]

Started Actemra 162 mg weekly in March 2018. Developed mouth ulcers in April causing interruption in injections. Rx with antibiotic. Sores similar to lesions chemo patients develop. Being a Nurse I reviewed prophylactic actions used for chemo patients. Avoid strong toothpastes with whiteness. While recovering I used baking soda.Use a toothbrush with soft bristles. Avoid citrus and highly seasoned foods. Chemo patients use prescription "magic mouthwash". I made a version using water, baking soda, and liquid benedryl. Rinsed every couple hours initially. When ulcers subsided, continued twice a day. In the 8 months on Actemra, I developed 3 upper respiratory infections. 2 required antibiotics. My rheumatologist checked labs every month. My blood sugar was stable. My cholesterol went up. The month I stopped Actemra my liver function labs were elevated. Two months later,they returned to normal. Breast cancer diagnosis. Did Actemra contribute or am I the 1 in 8 women diagnosed. In October before I stopped Actemra, I felt the best since before onset of PMR. My prednisone dose when started was 20 mg. Currently at 14mg but cautious to reduce due to stress of recent diagnosis. Experienced mild GCA flare, after Christmas requiring 20 mg a day X 5 days. It can take up to 12-16 weeks to feel the full beneficial effect of the medication.

[Hidden in reply to LCHRISTOP10]

Thank you so much for your reply,and all the information regarding treatment.You had a tough time,and now you are facing another journey,don't be in a rush to reduce you have enough going on.I will keep you in my thoughts and prayers at this difficult time.xx

[LCHRISTOP10 in reply to Hidden]

Thank u for your support and prayers. Read your recent post after your infusion. I live in US. I administered my Actemra as an injection. Day following shot I felt more tired than usual and sometimes experienced episodes of postural hypotension( lightheaded upon standing) which would pass. Lasted only the one day after each injection.

[Dream21 in reply to Hidden]

I have taken Actemra for TCA/PMR for about a year and a half. No problems, though recently cholesterol has risen that could be an affect of Actemra. The doctors are monitoring the numbers. I went from 30mg Prednisone down to 3mg and weekly shot.

[Hidden in reply to Dream21]

Thank you for reply,you have eased my anxiety about taking this med.Glad it has helped and no side effects.xx

[Patience47]

In my prayers. 🛐

[Hidden]

Hello LCHRISTOP10 💐

So sorry to read of your diagnosis, l had TNBC in July 2015 however l needed a mastectomy & Chemo as it was Multifocal/Stage3.

I was on Methotrexate when diagnosed so that had to be stopped for Surgery & Chemo.

Wishing you Luck 🍀 with your Radiotherapy & hope it isn’t too tough on your body.

Very Best Wishes

MrsN 💐

If you want a chat you can always send me a Private Message x