Follow up

[Zozoi]

A big thank you to all, I have made it to the US and followed all the advices, increasing my dose and packing enough and correctly the meds, good insurrance...flight was fine. No headaches, no pain, just today a slight sensitivity but not enough to take painkillers.

A big step up as like many others I had lost my confidence. I still will only do half of the stuff I was meant to do but so glad I ve made it.

I have another question to GCA sufferers. Whilst on medication, is one totally free of pain, sensation, symptoms or are they to disapear completely once on the right dosage?

Also, after reading many posts, I will definitely look at decreasing much slower than advised by hospital. i had no clue and obeyed orders thinking it was marvelous that I was so quickly on lower dosage. I have a nutritionist/naturopath in France who I told the drop rate and she was herself extremely surprised by the speed and agreed with all your decrease programme.

If it can help anyone, and I am not saying tha this is The answer as we all fonction in different ways. I am following a strict anti-inflammatory diet which has help me avoid putting on weight, I even lost weight, no water retention retention in the face, even my bad cholesterol is gone down, blood pressure remains on the low side, no food craving.

I am on a gluten, dairy, sal and sugar free diet. I only eat carbs and fruits that are on low glycemic index. Plenty of proteins animal and vegetal, and vegs.

It is not fun, and difficult to follow but for me it has worked well to counteract the side effects. Again, this is just my experience and would not want to preach that it is for everyone.

Thank you all for being so hepfull.

Marie

[SheffieldJane]

I am glad you got there alright. Your regime sounds challenging but very positive. Good luck!

[Harbel]

Enjoy your trip. Your diet has worked for me too. I wanted to avoid weight gain on pred and threatened diabetes and did similar and ended up losing 15kgs over six months. An ill- wind....

[Harbel in reply to Harbel]

Oops I did not cut out dairy.

[Louisepenygraig]

Good for you! I visited my daughter in the US last April and, like you, the flight etc. was better than expected. It was a great confidence boost for me too. I was travelling with my husband and had wheelchair assistance which helped. At the time I was a bit sad because I thought it was the end of my days of travelling alone but now I think I could if I needed/wanted too - I do love travelling by myself. I couldn't do as much as usual when I was there but it was all ok.

[Linny3]

I am coming to realize pain control has a lot to do with what we eat, at least for many of us.

It always boils down to fruits and veggies, fish, low carb and no sugar. When will I learn?

[Jackoh]

I sometimes think it is ok to follow that kind of diet as long as you don’t give in to the occasional chocolate or whatever. I’ve prevented the Pred face etc and weight gain ( well most of it anyway) with similar diet but found on eating my Valentine chocolate I developed the taste for it again. Back to the drawing board!! Glad that you made your journey. I have GCA and PMR but sometimes have slight ear ache and swollen glands when tapering but not the hot “boring “headaches that I had on diagnosis .