Diagnosed with GCA and prescribed steriods. The side effects of steriods are proving difficult to live with - how do other sufferers cope?

Side effects include - thinning skin causing bleeding and wounds take longer to heal, face bloated, swollen ankles and weight gain and terrible mood swings.

[Hidden]

Hi Margaret,

Very sorry to hear you have GCA. I was diagnosed with PMR 18 months ago and was put on quite a hefty dose of pred. 30mgs. I guess you might be on an even higher dose for your much more serious condition.

When the inflammation has died down your dose will be reduced as quickly as possible. I guess you already know this. Try not to worry. The horrid side effects will go as the dosage drops.

When I was on the high and medium doses - above 10 mgs I had bad side effects like you do.

If I damaged my skin I bled loads and it took a long time for the bleeding to stop. My skin became very fragile. I found all the natural callouses on my hands and feet disappeared. It often hurt to walk very far. My feet would be so sore. May I add at this point, moisturise your skin as much as possible as this helps it to retain more elasticity.

You say about having a bloated face. So did I. When my partner were on hols together and taking photos of each other, he looked great and to my horror, I looked like a bloated pig. The only photo of me that I have kept as a memento was taken from about 20 feet away. I looked ok on that one.

I also had swollen ankles. I had fat legs for the first time in my life and weight gain which made me look 7 months gone. Not a good image for a grandmother.

As for mood swings. My partner almost never talks about them unless I bring the subject up. I guess it was like PMT and some! I had aweful dreams, and often was so depressed on waking that I didn't want to face the day. These symptoms happened on the medium doses. between 20 and 10 mgs. I only broke down once and that was on the phone to one of the lovely ladies who started this web site. She reassured me it was ok to sob, so I did and she stayed with me.

As you will have guessed, I am now more like my old self. I have been up to 30mgs twice, but now am down to 7mgs and doing pretty well. My weight is down. Only about 6 pounds over what I used to be. Moon face is gone also. Skinny legs back. My skin is thicker and I no longer bleed too much when I cut myself.

It will get better. Hang on Margaret. Your eyesight must come first.

Best wishes, Pats.

[Hidden in reply to Hidden]

Thanks Pats, Reassuring that I am not alone having these side effects - they are as depressing as having the pain in the head but I can hang on if they do disappear eventually - after all I am at an age where looks shouldn't matter (not a model). My GP is fairly good but he is finding it difficult to find a specialist to refer me to - hopefully when I receive the information pack this might help him as well as me.

Glad you are on the mend.

Best wishes

Margaret

[Lidybeff]

Hi Margaret, My name is Lizzie, I was diagnosed with GCA in 2010, after having had PMR for many years. I've been on prednisone since 2006, but the dose went right up after the GCA diagnosis. I have all the side effects that you are describing. Prednisone can cause major depression/mood swings. I am countering that with prozac, and it seems to work for me.

I can cope with the rest of the side effects, because I know it is better tha being blind. I lost some peripheral vision in my right eye, and I'm not about to lose any more. If you can get your moods under control you'll find the rest easier to deal with. Are you have regular checks to make sure you are not developing osteoporosis or diabetes ?? So the answer is yes, I can cope.. because I have no choice. Mental attitude is very important, and when faced with something as serious as this, I decided to be grateful that there was a drug that could save my sight, and to live with the inconvenience of paper thing skin and swelling.

I hope you can get your moods fixed.. that is hard to deal with. Lizzie.

[Hidden in reply to Lidybeff]

Thanks Lizzie

Yes I am grateful that there is a drug that will prevent the loss of sight but I am having complications with small blackouts which is worrying - there seems to a lack of knowledge about treatment and who to refer me to which is something I am exploring but it is reassuring that I am not alone and that hopefully this will pass. Thanks again

Margaret

[Celtic PMRGCAuk volunteer]

Hi Margaret

Oh I do so sympathise with you. I started on 40mgs of Prednisolone when eventually being diagnosed with PMR, with GCA joining in the fun 5+ years ago!

Thinning and easy bruising/cutting of skin seems to be one of the very common side effects. An appointment with a podiatrist recommended Doublebase Gel for the very sore soles of my feet. I then found it to be an excellent moisturiser for my skin overall. It is available either over the counter or on prescription, in a gel or cream form in large 500g pump dispensers.

As for bruises, I lost count of how many tubes of Arnica cream I got through, but this is another remedy that helps.

To try and offset the weight gain and fluid retention caused by the steroids, I researched anti inflammatory and diuretic foods. I discovered that certain carbs such as potatoes, parsnips, etc turn to sugar in our bodies and are best reduced or avoided, especially as there is a diabetic risk from steroids. I substituted sweet potatoes when I could. I included a lot of foods that had diuretic benefits such as asparagus, garlic, fennel and melon. Overall I managed to restrict the weight gain to half a stone.

Do hope some of this might help you but just try and stay positive, knowing that all these side effects will disappear as you get to the lower doses, and you will look back and see how far you've come and, most importantly your eyesight has been saved.

My very best wishes,

Shirley

[Lidybeff]

You need to see a very good rheumatologist asap. GCA is considered a medical emergency.

Please keep us in the loop. Lizzie.

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Thanks again - will see about a referral to a rheumatologist but my GP is away on leave for 2 weeks - in the meantime he is recommending that I reduce the steriods to 12.5 mg a day from Saturday with the proviso that if the apin returns to refer back to 15 mg a day. In the meantime will try and see which rheumatologist specialises in GCA in my area.

Again thanks

[Hidden]

Hi Margaret,

May I ask how these black outs present? I also wonder how long you have been on 15mgs. It is now recommended that once on 15mgs the drop should be no more than 10%. I could only come down by 1mg after 20mgs and I do not have GCA.

Pats.

[Hidden]

Hi Pat

I can just be sitting , say knitting, and for about 30 seconds blackout, come too and find I haven't dropped a stitch. My husband says it is as though I have left the planet but not for long enough! It also happens at night when I wake up I sit on the edge of the bed and suddenly find I fall forward. There is no warning that it is going to happen. GP was going to refer me to a neurologist but when he examined me he found I had a slight heart murmur and decided to get that checked out first - ECG and Echocardiogram - but these revealed nothing untoward with my heart - not sure what he intends to do now. I have been on 15mgs for 7 days now. I was woken up at 2.20 am this morning by the pain in my head, quite severe, so I took another 5mg tablet and 2 paracetamol and the pain receded. Hope this is helpful.

Margaret

[Hidden]

When did these black outs start? Did you start getting them after you went on steroids? If so did you start getting them after you dropped the dose. It might be low blood pressure, but only a specialist will know. If I were you, the next time you get one, and lets hope you don't, go straight to your nearest A&E and tell them whats going on. Tell them about the headache too. I don't want to scare you Margaret, but I really think you need a good Doc. My advice is don't drop the dose until you've seen someone who understands this illness well.

Pats.