Hello everyone, my first post on this fabulous site but I read other posts regularly and it has been a great help
I was diagnosed with GCA in 2013 after waking up in night with no sight in left eye, it came back a few mins later but was admitted to hospital and started on 60mg of pred. ...tapered it off completely beginning of December last year but by mid December was in agony with my hands and shoulders I was told I had PMR also ..can't believe the pain I was in....after I stopped pred for that short time I had an episode of eye blurryness and was re started on 20mg pred in January this year ...I am now down to 10mg (all treatment has been done with Rheumatologist ) I didn't believe that I had GCA because I never suffered with headaches, it seems I was wrong and not the doctor lol. Sorry for long post. ...my main questions are at what strength of pred does the moon face go? and also is it normal to be put on Aspirin for GCA ? Every small cut bleeds very badly and after reading in the press about the dangers of Aspirin I am worried if I really need to be on it, my next appointment is not for another 2 weeks so not sure what to do stop the Aspirin or wait???? Hoping someone could advise me on this....
Many thanks Susz
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suszannah
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I've been taking my daily aspirin for around 10 years now. In the grand scheme of things it is a very small dose and I haven't heard of anyone getting any side effects from it.
But as with everything, it is your choice and your right to do as you think best for yourself.
Quite normal to be on Aspirin 75mg as well as Pred. I was already on that dose before GCA came along, it's the normal dose given to anyone who may have raised blood pressure. Actually it's only a very small dose, compared to what you can buy OTC - that's usually 300mg. One of the reasons it's prescribed is that Pred can raise your blood pressure. The articles that discuss stomach problems etc usually refer to people taking the higher dose of aspirin.
The small cuts and bleeding you refer to are much more likely to be attributed to the Pred, one of its side effects is thinning of the skin. You'll probably notice you bruise easier as well. Doublebase cream is recommended, or any good unscented moisturing cream to help the skin, and Arnica cream is good for bruising.
Thank you so much for your helpful replies, I was really worried about the aspirin, will carry on with it I have not read the side effects of pred (too scared) the excess bleeding I put down to the aspirin. Does everyone get headaches with GCA? as I never had any I thought i was misdiagnosed and to be honest I gave my consultant a rough ride at first, as I had never heard of it before and I worked in a hospital for years (psychiatric) and never came across it. As I reduced down at least I'm not eating so much but I seem to be accident prone always bumping into things, tripping over things and mood swings not sure if that's the meds or the illness......will be following posts on here daily
Suszannah, head pain is more likely when GCA affects the temporal arteries, and many doctors then refer to it as temporal arteritis. However, GCA can affect other arteries throughout the body and in those cases it is possible for patients not to experience the classic head pain.
I was never prescribed aspirin when diagnosed with GCA and PMR although the BSR Guidelines for the Management of GCA do recommend low-dose aspirin if no contraindications exist. The Guidelines state:
"Low-dose aspirin has been shown to decrease the rate of visual loss and cerebrovascular accidents in GCA compared with patients not treated with aspirin. However, there are also conflicting reports regarding its efficacy at preventing ischaemic events in GCA."
I was always tripping over, dropping things and bumping into door frames, in fact my balance was all over the place especially whilst on the higher doses of Pred. It does improve as you reduce to the lower doses.
I wouldn't say everybody gets headaches, but it is one of the "classic" symptoms, but if you've read posts on this forum, you will find out we're not all classic cases!
I think clumsiness is quite common as well, not sure how much is the illness itself or the Pred, lots of people seem to complain of brain fog on certain days, and I think that is apt to make you feel disoriented, so more likely to bump into things. Mood swings certainly can be attributed to the Pred. It's a wonderful drug for what it does, but it's very difficult to live with!
I want to thank you, Dorsetlady, for all your supportive advice. If I were there and could give you a hug, I would😆. With your advice I ordered the Doublebase gel here in the U.S. from Amazon. The thinning skin has me looking like I'm abused ( I am also on blood thinners which makes it worse). It just came (from UK) Yes it's true that only a fellow sufferer can understand this awful illness. Is comforting to read that we're not alone. I'm leaving Aug 30 on a 26 day Baltic cruise and pray that I can make it. It'll have to be part miracle. Considering upping my prednisone to get through but side effects are keeping me from making a decision. Can't get a new wardrobe with every weight gain.
You've got another six weeks before cruise, so hopefully you will feel ok without increasing steroids. But do ensure you have plenty with you, so if necessary you can take extra if you don't feel ok. Try and relax before you go -easy to say I know! and enjoy yourself on cruise. Remember the sun cream, the sea breeze can burn even if it's cloudy overhead.
Hi Alison. I started with PMR last year just before a cruise but I didn't know what it was at the time. Luckily I took a fold up walking stick with me on the cruise as I was much worse in the heat. I felt like a crippled old lady but it was a great help getting out of chairs and people were more patient when I was going up and down stairs with my stick. You can buy lovely ones now too. Enjoy your cruise and try not to do too much beforehand. Hugs from Mary x
Thanks for the reminder about a cane. I have a regular one but think I'll look for a fold up one. I'm sure it'll help with balance and support. Sheesh - the fatigue is my biggest worry. I just wilt quickly. I think the cane will remind people to be patient too. So easily they forget I'm not like I used to be
Thank you both for clearing these points up for me, consultant said it was Temporal Arteritis, I guess I must be lucky not not to suffer the headaches ...I feel I can cope better with this illness now I have spoken to you, I deliberately didn't read too much info about side effects etc because I would think I had everything and probably not taken them, sadly we don't have any support groups in South Wales so this site is invaluable for people like me...thank you all
Morning Susz . Moon face does go I was on 40mg September last year on 5mg from tomorrow family say face has been going down for last few weeks I only noticed this week it's me in the mirror. Balance comes and goes took bad fall in February use stick( family insist ) got used to it have a nice fold up one . It's been a rough ride today is my birthday I will be 62 daughter and grandkids have plans for me hubby knows but won't tell all in all life is good most days
Happy Birthday thank you for reply, the swelling is mainly under my chin it appeared a few months ago, woke up one morning and it was there, at the time it also felt like I had a pain deep in my throat but that has eased now....fell last year and broke my ankle .......have a lovely Birthday
Suszannah, now that you mention the swelling is mainly under your chin, then it sounds like one of the very common areas for swelling as a side effect of steroids and one we commonly refer to as hamster-like. The swelling will reduce as you reduce the dose.
I have the same swelling - under chin, however my whole face looks heavier. Can anyone say at how many mg the facial swelling seems to go down? I am at 10 and 13 every other day. Down from 20/day. Also feel pressure from swelling around my eyes.
I've been taking low dose daily aspirin for over ten years and was recently told, when I saw a rheumatologist after a GCA flare, that it had positive effects and this certainly concurs with what Celti has quoted.
As for the bruising and slow healing of cuts, I've given up wearing skirts in the summer because my legs are a study in blue and purple and unsteadiness means that I'm always bumping into things even in my own kitchen. But it will pass ; I've been up and down on pred for fifteen years and have been as low as 4mg - now 13 after flare - and everything does begin to normalise on the lower doses. But I carry on with the aspirin always because it's beneficial to a heart condition I have . Good luck.
I am really glad I asked on the forum, have been reading posts for quite a while but was a little nervous to post but so glad glad I did, I thought it was just me with all this bumping and bruising ...fingers crossed rheummy will decrease again at next appointment he usually does it at 1mg per month if bloods are OK
Would anyone know what the ranges for CRP and ESR reading should be? Many thanks
Any sinus or ear infections could cause your markers to be increased. Or it could simply be that you still have PMR inflammation that isn't quite under control. The only way to prove that would be to increase the steroid dose slightly for a week or so, repeat the tests and see whether they have normalised on the higher dose.
Those markers are not overly high, so what about your symptoms, Susz? Have they resurfaced/worsened recently? They need to be taken into account as well as the blood test markers. If there hasn't been any worsening of your symptoms, then you may just need to mark time a little longer at the present dose, then get the blood tests repeated. After all, you're unsure as to whether you may have sinus/ear infections at present which, if so, could also be the reason for raised markers.
Hello Celtic, I don't feel ill really, I think most of my problems are pred related, tiredness, bumping, tripping and moody, the main reason I was put back on pred was the eye blurryness and suspected pmr which has not bothered me since I restarted the pred...I notice that I pick up colds and virus very easy which usually turn to either sinus or chest infection...been lucky so far for about 2 months
As a GCA sightloss victim I thought I should mention that I have just had my Aspirin daily dose stopped after some years and replaced by Clopidoggerel which is claimed by GP to be similar in terms of blood thinning but less conducive to stomach ulcers! Hope it works out that way. Also told to go back on Statins as there were no benefits in the way of pain relief by stopping them for a week or two as a trial. So here we go with the Lescol again! Post this as I mentioned earlier about being taken off Statins by GP that's all. Good luck all. Keep posting.
Ray, yes Clopidogrel does act similarly to aspirin in that it can thin the blood. My son is on it for that reason, following a stroke three years ago. So far he seems to be fine on it and hopefully you will be too.
Hi Elizcarroll, I did things the other way around I had the GCA first, I was very scared too I had no pains or other symptoms apart from the sight loss so found it hard to accept the diagnosis I must have been the patient from hell lol when I got down to about 3mg pred I had severe pains in shoulders and wrists was walking the floor all night with the pains (I was in Spain at the time) I thought it was my arthritis playing up until I got home and consultant told me it was PMR ...until now I felt very alone with illness and now realise it is more common than I thought but still too scared to read books about it I just read posts on here and now plucked up courage to ask for advice on here....hope you get the answers you are looking for pretty sure you will I was going to stop the aspirin but after the advice in here I decided to stick with it, now I see it was prescribed for a reason. ...be glad when neck swelling goes down though feel like Shreks wife lol
I suffered from mouth thrush in the early days of Pred on high doses. Saw GP who prescribed mouthwash. I think I took two courses of it, each was about 10 days. Once it had gone it never returned. You might be able to get something OTC if you speak to your pharmacist, but that's not usually as strong as the GP will give you. Hope it soon clears, it's just more thing you don't want!
Elizcarroll, I just looked in mirror one morning and it was there, never had it on the last lot of pred,...can't believe the side effects of these tablets but without them where would we be? fingers crossed it will go soon I don't know how low you need to go for it to vanish
Hi Suszannah...I was diagnosed with GCA in Sept 2014...started on 60mg and hopefully after tomorrow's blood work I will be down to 12.5. As far as your question abut aspirins..I also had been taking low dose 81mg baby aspirin for many yrs...since Pred my skin has thinned and loads of bruises..I started to get broken blood vessels in my eye and my Dr told me to take the aspirin every other day...I do see a big difference as far as bruising. I was also told that when I get a headache not to take any aspirin...just Tylenol extra strength. Also disgusted with the moon face and fat neck. I do notice a slight difference in my face since I reached 15mg, but everyday is different...hoping to get rid of it soon. Good luck to you. Bert
Thank you Bert, last year my consultant changed me to every other day with aspirin, then when I had to restart in January he put me back on to the daily dose, will ask him if I can reduce aspirin at next appointment so glad your swelling is going down and your reduction is going well....I get bloods done tomorrow ready for my appointment with consultant on Friday ...nice surprise I thought it was the following week...keeping everything
Suszannah...hope you get good blood results and can reduce these dreadful side effects of pred. Some mornings the moon face and neck area seem a little better, but as the day goes on it's back to square one...someone mentions at 5 mg they seem to recognize themselves again. I don't know if I can wait that long...I guess everyone is different. I did notice since I'm on 15mg, I'm losing a lot of hair...this is really freaking me out. Have you experienced thinning hair? If so when does it stop? Good luck with your blood work...Bert
Hello Bert so far so good on the hair front, but about 5 years ago I was unfortunate to have alopecia areata and lost about 30% of my hair the more I stressed
the more fell out, this was a while before diagnosis of autoimmune disorder it took about 2 years to grow back...there is a fab product you can get called MANE comes in loads of shades, it comes in aerosol can and it's tiny fibres which you spray onto your hair after a minute or so brush hair into place it thickens and helps to disguise small patches...it was a godsend to me in those black days....i have a can here to this day just in case...you can buy MANE on ebay around £16 lasts ages and well worth the money
Thanks Suszannah...I did hear of that, but thx god I'm no where near that point...hopefully never will...I think a lot of breakage is from the flat iron and the condition of my hair from the Pred. People on this site complained about thinning hair..for me it just started when I got to 15mg....hopefully it will stop. I will keep it in mind...Can't win with Pred...always something else to stress over...hope your blood work gives you good results...take care
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