GCA

[Freddie01]

Hello, I am new to this group, found the forum by accident earlier this month. I was diagnosed with GCA last October having previously been told the pain in my jaw was due to eating steak. Once the blood results came thru I was put on 60mg preds and received hospital appt to see consultant within 2 days. I spent most of that day in hospital between rheumatology dept and eye clinic as I had blurred vision further scans taken. Bone scan also taken which confirmed I had osteoporosis. I knew I had to dig deep as like most people I don't put myself first. I pushed myself to walk my 3 dogs and continued to do the school runs and childcare for my 3 grandchildren, believe me it was hard given that you can't sleep. I ate non stop mainly carbs, gained over 2 stone along with the moon face. I had an implant December for the osteoporosis which will last for 12 months. My rheum consultant was fantastic and gave her phone number to contact her anytime. I was put on a reduction plan with the preds did have a flair up during the reduction, when I rang the rheum she told me to increase the does and made an appt to she her within 48 hours I believe this reassurance played a big part for me she also asked if I would be interested in the trial running for GCA which I did take part. Now down to 6mg have stopped gaining weight but not lost any either and still have a moon face. I am back at the hospital the week after next am remaining positive that I can see a light at the end of this dark tunnel. Should have mentioned the blood tests showed I was pre-diabetic and offered a 10 week course to help with this, happy to report recent blood test showed I am out of this bracket but will continue with further monthly sessions for the next 6 months. I have found this forum both helpful and comforting, as a group know what we are going thru xx

[DorsetLady PMRGCAuk volunteer]

Hi,

Well done on your progress so far, and on having such a helpful caring Rheumy - she needs cloning!

Your moon face should soon go, and hopefully your extra weight as well, although with the dog walking and childminding I'm surprised it's still there!

Good luck.

[SheffieldJane]

Hi Freddie01 and welcome, you certainly have been on the journey and earned the tee shirt and the badge. You are very fortunate in your Rheumatologist. That kind of care makes a world of difference. You still maintain a very busy schedule , I hope you can factor in time just to chill, even if you're in the park with very long extending leads for the dogs. The company of children can be a very healing thing, I hope your grandchildren are at an age when they prefer to amuse themselves, though hopefully not always glued to the screen. Sometimes you have to be pretty creative about getting those naps you'll need. There is no virtue in running yourself into the ground. Sometimes our busy achieving children simply don't notice that their parents are keeling over. My daughter has been more thoughtful since I came clean about the debilitating effects of this disease. I used to hide it, not wanting to add guilt to the mix. All I am really saying is take great care of yourself, it will speed your recovery.

[Freddie01 in reply to SheffieldJane]

Yes I know what you mean. I do have a couple of days to myself and chill out. We have booked a week in the sun next month and I plan to do nothing except be pampered, again this is something I would not normally do just know I have to do it in order to charge the batteries.

[SnazzyD]

Welcome! That must have been some steak! 😉

I can empathise with the do it all mentality. Only ten weeks in with GCA I'm still at the stage that the Pred is keeping my brakes forcibly on. Meanwhile I am trying to work out how I'm going to change a lifetime's tendency to be everything to all people. Being a lively doer of all is great until it goes wrong.

On the whole, the family I support are so busy with their lives having had the load made easier by me, that they have no time to help me out much. Job well done in some ways but a big own goal in others. Whoops.

[Freddie01 in reply to SnazzyD]

SnazzyD my face must have been a picture when he mentioned the steak, it was only when I said it was hard to believe 2 steaks in 10 weeks could cause this that he said he would arrange a blood test. I had the test the next day and he rang me to let me know it was not what he though it was and I needed to go straight to the health centre and pick out a prescription and start the tablets asap which was 40mg he then rang the next morning and told me to increase to 60mg and expect a call from the hospital who would arrange an appt. hence my journey began. Don't be frightened to ask your family for help if needed.

[PMRpro Ambassador in reply to Freddie01]

What a plonker - hope he remembers the lesson though!!!!