Improvement

[Kyrenia]

Hello everyone. I was diagnosed November 2017 with GCA/PMR. Started on 40mg Pred. After a bumpy ride I am currently taking 11mg. When can I look to a reduction in my weight, and an improvement in my skin and hair. Also will this fatigue improve as I reduce my level of pred. I follow all the posts and there is so much compassion and advice from you lovely people. Thank you everyone, reading all the posts helps me not to feel so isolated. I find it difficult to express just how I am feeling.

[SnazzyD]

Hello, I started with this in March 2017 but just GCA. I gave up work and haven’t been back since. Generally the skin problems, eye bleeds, bruising didn’t abate until under 10mg somewhere. My hair during this time has fallen out once, grown back nicely, half fallen out again but most of the time has the mad scientist look due to new hair (mostly greys) that have got halfway sticking out like pipe cleaners. The hairdresser can make it look lovely but within an hour it has fought back through the products back to its former ‘glory’. Just glad it’s winter and woolly hat season even if it has been in double figure temperatures!

However, the waiting game doesn’t have to apply to weight. That can be addressed at any point. Have you tried a rigorously strict low carb diet? Keeping the weight down has been top priority to me to avoid joint stress and diabetes. Surprisingly reducing dosage hasn’t really meant I can eat more carbs and salt. It’s like my body is set to over sensitive when it comes to salt and carbs. As a result I’ve put on a couple of pounds in the summer thinking I was less susceptible, so back to the drawing board. Still having to keep salt low is a pain because I find it is more inconvenient to avoid.

So, I’d say with me I started to feel different under 10mg and another leap was under 5mg. However, I didn’t feel full of the joys of spring, quite the opposite due to sleepy adrenals. Only just coming out of that, though energy wise reductions of 0.5mg are harder now with withdrawal lasting longer each time. All swings and roundabouts really.

[Hidden]

Hi Kyrenia, I, like you, was diagnosed in Nov 2017, with both PMR & GCA! Good on you for getting to 11mg!!!! I'm on 20, right now, but it has been a bumpy road! Oddly I have gained more weight in the last 4-5 months, than I did the first 6-7, when I was on very high does of Pred (60, 70, 80mg)!!! The only thing I can think of, is that I am not near as active as I used to be because of a bad knee.... I too am hoping as I reduce the pred, my weight will lower and my horrible red, bloodied, bruised, dry skin improve! Good luck to you and please know you are never alone or isolated... we got your back!

[SnazzyD in reply to Hidden]

I’m beginning to think that as the disease process reduces, the body doesn’t use as much energy. My exercise has increased if anything but I find the flab is even quicker to the hips than it was, as you found. I am looking at it as an annoying positive.

[Marijo1951]

I started on 60 mg per day at the end of July 2017. I've just (yesterday) reduced to 10 mg, so far, so good...

One of the worst side effects of pred for me was the terrible hot itching legs and feet, especially at night, and I'm glad to say that has gone. As the the weight gain, I must admit I didn't help myself at first as I gave in to the overwhelming hunger for a few months and managed to gain about 20 pounds in a very short time. I have now adopted a sensible low carb diet and the extra weight is gradually going. My skin is still thin and prone to bruising and my hair is simply bizarre (though that might be as much due to Methotrexate). My main concern is the brain fog. I just hope I'll have my normal faculties return to me soon...

[Marijo1951]

Forgot to say that I'm still extremely fatigued a lot of the time, but it doesn't seem to be so completely overwhelming as it was before. Maybe I'm just more used to it.

[SheffieldJane]

I think you kind of learn to manage the deathly fatigue. I love my naps now and moisturise everywhere including my hair, all the de-frizz products. It used to be straight, now it’s all kinky. Never has so much money been spent on a thin bird’s nest. I smell wonderful!

[PMRpro Ambassador]

If you have been following the posts I'm sure you really know in your heart of hearts that there isn't a straight answer

I lost 35lbs of pred-associated weight while still taking between 10 and 15mg pred. But I did have to work at it - you can usually stop weight gain and even lose if you really apply yourself. I've had better skin, nails and hair on pred than without - other stuff had different effects though!

The fatigue is something else - and it isn't even entirely certain it is due to pred itself. If you have PMR as part of your GCA then that part of the autoimmune disease may still be active and that causes fatigue itself. And then as you get lower - your adrenal function has to take up the reigns and that can lead to a different reason for fatigue.

[Mary63]

My hair wasBONKERS...kinky, curly, MAD until I got down to about 8mg. Then back to my normal.

Skin similar timings. Bruising, cuts and discolouration which lasted anything up to a year after a small bump all gone at 8mg and lower.

[Jennyhampshire]

Hello Kyrenia

You are at the same stage as me. Diagnosed in Nov 2017 (although i am sure I had PMR for 12 months or so before diagnosis) and currently on 10 mg (I did get down to 9 mg a month ago but a fall seemed to take me right back to where I started in terms of pain/stiffness so back up to 10 mg). I did put on 1.5 stone but i was underweight anyway so now the added extra weight acutually suits me....... I am being told. Like other weight advice steer clear of carbs and sugar but as for the hair & skin I have been lucky there as I have not noticed any difference? Fatigue is the worst thing so you just have to keep planning your rests around anything you have to do and dont feel guilty for resting or cancelling plans if you need to. You cant do much wrong if you keep checking in on all the wonderfull advice and support on this forum. Although I do not post very often I check in every day and it has possibly been the only thing that has stopped me from thinking I am going mad !!