It is so hard not to get discouraged!

[Lanakay]

I was diagnosed in September of 2017. I am currently on 7mg daily if prednisone. About a month ago my left knee started causing problems. Last Tuesday I had an appointment with my doctor. The night before I started running a fever. A CT scan revealed a perforation in my colon. I went to the hospital and was given IV antibiotics and was sent home with more antibiotics and a clear liquid diet, then a bland diet and a follow up colonoscopy in 6 weeks of course a follow up with my doctor in a few days. Now today my right temple is sore to the touch. Not any place though. If it was GCA wouldn’t I have pain in my jaw and the other temple, or my scalp or something? Maybe I’m just sipping clear liquid and getting carried away. I hope. I haven’t posted for a long time but I read everything on this site every morning with my coffee. All of you help me through the tough times. Thank you all for being here. I love this group.

[lesley2015]

HI Lanakay,

Sorry you are struggling so, I too have what I call my 'add ons' it often feels two steps forward then three backwards, but forward we must go!

So I was diagnosed with GCA/PMR in 2015, down to 2 mgs of steroids this January, now bang, its back again, first the PMR now the GCA.

Although I have had the jaw, face forehead pain, I also get times when it is just my temple, feels like I am laying on a pebble if I try to sleep on that side, I can feel the actual sore spot with my finger, we are all different, so with that in mind go to your health provider and get it checked out asap, if its nothing other that a headache that's great and it will relieve your mind, if not get treatment started.

I wish you well in what is being a challenging time for you, but it's surprising what we can cope with, best wishes and good luck

[Lanakay in reply to lesley2015]

Thank you for your reply. It’s so good to have this forum to come to.

[SheffieldJane]

I would certainly seek attention for this new temple symptom. My Rheumatologist always feels my temples for a swollen vein. I am sorry that everything is so troublesome and scary for you right now. Please let us know the outcome of your colonoscopy. Are they relating the damage to steroid use?

For me GCA is always hovering in the background like a spectre. It makes this a stressful disease. Hopefully your doctor will be able to ease your mind on the GCA score. Am I right in thinking that your diagnosis was PMR?

[PMRpro Ambassador in reply to SheffieldJane]

There is considerable thought that pred probably doesn't CAUSE perforation, but that it masks the inflammatory state that eventually resulted in perforation.

[PMRpro Ambassador]

Never fall into the trap of thinking that all patients show the same symptoms - some have none at all. It depends on where the inflammation is and how severe it is. You will only develop jaw pain if you are chewing something with resistance - not sipping clear fluids. One theory is that chewing gum can be used to see if it ellicits jaw claudication and that would be an option for you even on clear fluids.

Something to run past your medical team I think.

[Lanakay in reply to PMRpro]

Thank you so much for being here. It is great to have contact with people who know what this journey is like.