Out of Remission. Starting over...

[Marie1479]

Hi everyone,

Unfortunately after three months of remission I had a very bad flareup. The week before my husband and I were leaving for Maine (Sept) I decided to get a flu shot. Four days later while in Maine I started not to feel well. The usual PMR symptoms. I had no medication with me. My doctor prescribed a Medrol dose pack with the hope it would knock out the flare and keep me in remission. No such luck. I went back up to 10 mg of Rayos (delayed release Prednisone) and started the tapering process all over again. Three weeks later my left knee blew up. This was how PMR presented itself four years ago. So my doctor put me back on Actemra and all symptoms disappeared. My dr believes that the adjuvant in the flu shot was the culprit. Now when I look back I had the same reaction last year when I had the pneumonia and the flu shot but because I wasn’t in remission I just thought it was a flareup due to PMR. I don’t want to discourage anyone from getting the flu or pneumonia shots. This was my experience and everyone is different. For me, my immune system can not tolerate these vaccines.

Fast forward I am down to 3 mg of Rayos and Actemra every other week. I feel great and recovered quite quickly because I know how to take care of myself now. I am retired, keep myself very active and rest when I need to. As I mentioned in some of my prior posts Pilates & swimming have been a lifesavers for me. 😊

[MrsNails]

Sorry to hear your more or less back to square one, it’s soul destroying, isn’t it!

At least your Doctor is on the ball, you know the format so hopefully you’ll soon improve.

Wishing you all the best 🍀

MrsN

[PMRpro Ambassador]

To be fair though,3 months is a very typical delay before symptoms reappear because the PMR was at a very low level but not entirely gone but the pred was stopped.

Hope it works better this time.

[Marie1479 in reply to PMRpro]

Agreed. Fortunately I was able to recover faster this time around. Being retired helps too! 😊

[Nap1]

Glad your doing better. Flu shots don’t effect me. I am still on 7 mg for adrenals. Also still on Actemra. Stay well.

[Marie1479]

As soon as I was completely off Prednisone, I then started to taper the Actemra. 2 weeks, then 3 weeks ect until I reached 6 weeks. I was on no meds most of the summer. When I had my blood work done at the end of the summer I did have a bit of inflammation in my left knee. My mistake was getting the flu shot and not consulting with my rheumatologist first. My dr wanted me to try a Medrol pack first before going back on Actemra. After I finished the pack the pain came back so she put me on 10Mg’s of Rayos (Prednisone) for 3 weeks during that time my knee blew up and I was put back on weekly injections of Actemra. then quickly was able to taper prednisone to 7.5 for 3 weeks then 5 mg for 1 month. Then very slow dead taper after that. In January I developed a reaction to the Actemra. Felt crappy for 24hrs after shot so doctor had me reduce to every 2 weeks.

[Marie1479]

Yes, I have a fabulous Rheumatologist! She wanted me to stop prednisone first then taper off Actemra. I was relieved to hear that you also feel like crap after the injection because it took me a while of collecting data to figure out it was the injection. It only last for a day just like you. Once I am off prednisone I think my doctor will be taking a different approach to weaning off Actemra. There’s not a lot of data out there regarding tapering with those with PMR. Regarding side effects with Actemra, my cholesterol and complement C levels shot up. Unfortunately I had to be put on a low dose statin 5mg every other day. After I stopped Actemra my cholesterol slowly returned to normal levels.