GCA f/u to ongoing journey.

[Spanky2019]

Rheumatologist was very supportive & reminding me that this is serious disease involving strong drugs. Been to ER twice in past several days. Sed was 9 on Monday & 19 Friday- still normal range but not normal for me. CRP <2.5 on Monday & 37 Friday. So sick Friday from headache, scalp pain, arm, neck, hip... you get the picture. I was also nauseated, but have never vomited since esophageal dysmotility/dysphagia diet. Didnt know if vomiting would make me choke, so that was scary. Rheumy wants me to think about Actemra. He's continuing 40 mg pred & with complete rest again I'm hoping all gets better. I'll see him again in a few weeks to discuss all this when I feel better. Will have mri done to see if something else is causing low back pain & weakness. He said boniva may be contributing to pain. My great ophthalmologist & fantastic pp are both left practice, but rheumy reassured me that the new ones will be as good & supportive or he will help me find others who are. Not feeling great but having supportive, caring medical professionals sure makes this journey so much easier. Thank you all for your kindness & advice.

[Hidden]

It sounds like a blip spanky. Good luck with new medics. It's always worrying but I have found fresh eyes often works in my favour.. Just have a steady few days if you can and feel better soon. 💜

[Hidden]

Best of luck... sounds like you have a lot on your plate!

[SheffieldJane]

It sounds like you are in pretty good hands. I hope the new doctors are angels!

[Blearyeyed]

Sorry to hear that you are still riding the rollercoaster.

Hope the increase in Pred will help you get things settled again very soon.

Pace yourself and take that all important restful Me Time until you are back in charge of the controls!

It may well be worth considering the Actemra option and asking for more opinion and advice on it to discuss with the Rheumy in a new post when you feel more able to think again.

Take care , Restorative Hugs xx

[Spanky2019 in reply to Blearyeyed]

So many things to learn. Sed was 9, then 15 & results from yesterday 25. CPR was normal to 39 yesterday lab. Thats all in 7 days. Was very sick when lab numbers normal & on 40 mg pred 4 days but now 39 crp. Need to learn how labs work & actemra is another scary rx, plus 2nd boniva i.v. coming up. Thank you! Feel much better tonight. Will pursue info in awhile. Hope you are doing well.

[stiff19]

You are so very lucky to have the support

Best wishes