Am I panicking?

[nallufl24]

I have been on monthly Actemra infusions for a little over a year. I got completely off of prednisone 6 months ago. Actemra helped me almost immediately. Since I started taking it I have had not one symptom of GCA until maybe now?

2 weeks ago I had a mild pain in my jaw. I thought it was odd because even in my worse times with GCA jaw claudication was never a symptom for me. It comes and goes right now. It’s really not very painful but it is there. Then I started getting a dull headache every day. Tylenol will make it go away for a couple of hours then it comes right back. Again it’s not very painful but I can’t get rid of it. This hasn’t stopped me from anything. In fact, I just got back from my daily 30 min walk with no problem. I have plenty of energy but this jaw and headache thing has been making feel panicked.

I am going to call my doctor tomorrow but I just wanted to hear from you first. I don’t always trust my doctors unfortunately

[SnazzyD]

However it turns out, do keep your muscular ‘housekeeping’ in order, namely the sternokleidomastoid muscles in the neck. I thought I was having a GCA flare a few times but it was tightness in these that was the cause. Have a read of this.

healthline.com/health/stern...

[nallufl24 in reply to SnazzyD]

That’s interesting. I actually have a couple more of those symptoms on that list. Thanks

[SnazzyD in reply to nallufl24]

Let us know how you get on with the doctor. As Grammy80 asks, “does it hurt when you chew particularly?”. Another thing that can happen, which I also found when my muscles became weaker with Pred, is temporomandibular joint dysfunction. It is easily searched online and a dentist should be able to comment on your jaw joint.

[Blackcatlover in reply to SnazzyD]

Thank you for that article. Lots of good advice.

[Grammy80]

I'm glad you are checking with your doctor. Does your jaw hurt when you chew? Hopefully, he will check your SedRate and CRP and put your mind to rest. I understand...100%!

[nallufl24 in reply to Grammy80]

My jaw does hurt a little when I chew. It’s not particularly painful but it’s there. I just had blood work last week for my monthly infusion and my ESR and CRP was normal which doesn’t necessarily mean anything. In fact all of my bloodwork was normal. It’s early here 5:50 am. I will definitely call doctor a little later

[Grammy80 in reply to nallufl24]

True enough! I wish you the best....thankful we are we do not walk alone here.💞

[Grammy80 in reply to Grammy80]

How did you make out? 💞

[nallufl24 in reply to Grammy80]

My rheumatologist told me they might be rebound headaches from the Tylenol I kept taking since all of my blood work was normal. Of course I know from this web site that that doesn’t necessarily mean anything. I stopped the Tylenol and I had a couple of days with headaches then they went away. My jaw pain also feels better so I don’t know what to think. In fact he just sent me an email update telling me that my GCA was well under control because of my bloodwork. I have been very aware of everything I’ve been feeling and lately I’m ok.

Thank you so much for your concern. You seem so very kind

[PMRpro Ambassador in reply to nallufl24]

But you are on Actemra - it makes the blood markers go down but that doesn't mean the GCA is entirely under control and the disease process can be ongoing in the background. I am amazed how many doctors just don't appear to have grasped that.

[nallufl24 in reply to PMRpro]

I know and I find it very upsetting. I can find that on the internet but somehow as a practicing rheumatologist he doesn’t know this

[Grammy80 in reply to nallufl24]

Sounds like you feel better for sure. I didn't realize you were on Actemra, great stuff!!, so you are wise to pay attention to the symptoms for sure!! Usually, for me, if Tylenol fixes it then I am pretty sure I don't have to worry. 💞

[PMRpro Ambassador]

I wouldn't call it panicking - more sensible concern and awareness. GCA can relapse when you are off Actemra - it must be borne in mind.

[scottygirl73]

Yes call your Dr, better to get it checked out good luck.xx