Hi , thank goodness for you knowledgeable and supportive group of people . I was wondering if you could possibly give me some advice ?
Since commencing steroids 2months ago I’ve noticed ,and especially in the past few weeks, I am starting to bruise very easily .. I have even bruised where I was holding a bag across my arm . The bruises are normally round and dark purple almost like blood blisters , .although I caught my leg on a plant pot in the garden and ended up with a bruise about 5 inches across . Is this something I need to highlight to my GP ? As I’m not normally a bruiser .
Also I am trying to go down to 10mg of Pred per day as per doctors instructions . Was on 12.5 for 5 weeks and felt very good but since trying to go down to 10mg , which was a week ago , I am having discomfort in shoulders, neck etc and having to take painkillers especially in the evening . Do you think that a drop of 2.5 mg is too much ? Or are the aches and pains just part of the transition down at the lower dose? On one day this week I did go back to 12.5 mg when I was having a particularly uncomfortable day . My doctor has been very supportive and we have discussed long slow tapers she is happy with 4-8 weeks transition once I start going down from 10-9mg and onwards .
And one last question I’ve not had a further blood test since I was diagnosed 2months ago should I be asking for one to check to see how things are progressing re inflammation?
Thank you
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Murphysauntie
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The purple marks are purpura caused by the steroids. I used to look as if I had been in the ring with Mike Tyson. They did not hurt in my case and disappeared in a couple of weeks.
Back to 12.5mg - get stable then reduce by 1mg if you have 1mg tablets- if not cut your 2.5mg in half… not everyone can manage the 15-12.5-10mg regime.
I had blood test regularly early days, but is was before covid and had GCA with sight issue so monitored carefully. Later on changed to 3 months blood testing-which is reasonable I’d say.. but since Covid, it seems more difficult in many places to have them done regularly.
To be honest, it’s symptoms - or preferably lack of them - should be driving reductions. Bloods aren’t always that accurate, but if you feel you want them for your information, then ask.
Yes, it’s a pain. It can happen in the white of one’s eyes too. That can be quite a shock when you look in the mirror in the morning. It’s not like the pink from conjunctivitis but proper blood shot areas or the whole of it.
2.5mg drops might be on the guidelines but it isn’t good for some. That can be because of withdrawal where the body generally is coping with less of a substance that has an effect on every fibre. This starts quite quickly and ends in a few days to a week (for me at least), but any longer suggests your lowest effective dose is somewhere in that range so smaller drops are nicer and more useful.
Pred can result in easy bruising and the formation of purpurae - I used to develop purpurae if I slipped the handle of a shopping bag over my arm! And my shins display amazing bruises at times. It does improve with lower pred doses.
I think that the starting dose and the next one down should be in place for at least 4-6 weeks each and that is what it used to be - it is only once all the existing stored up inflammation is cleared out that you have a buffer for reducing the dose. To be trying for 10mg after only a couple of months is quite soon but the latest idea is to reduce pred as fast as they can - and it doesn't always work well,
Hi Murphysauntie I too noticed random bruising and until I just read your post didn’t relate them to the meds so Thankyou for posting as it’s cleared up my little mystery in the process some great advice here as always , I have monthly bloods which they told me to book myself at same time each month they don’t tell me much so I got added to the patient portal to view them myself but I would agree with the advice here your own symptoms tell you when it doesn’t feel like the amount of pred is enough especially if you have any other infection going on I recently had a long lasting chest infection which hasn’t quite gone so I rang because my 8mg of pred felt like I wasn’t taking anything all of a sudden ! So listen to your body I hope your rhuemy is easier to get hold of than mine it’s like trying to talk to the pope here !
Hi Pol53 , I learn something new about PMR everyday by reading these posts it’s been so helpful to me so I’m glad I’ve now helped you too . I don’t have a Rheumy as yet . I have been referred but it’s about a 9 month wait .😕 🤷♀️ .
Yes I waited 16months it’s a bit of a nightmare but once you are seen they are thankfully quite quick off the mark - I had such a bad month that my gp wrote again to see if could be escalated so if u r in pain it might be worth asking your gp if they can try and escalate you - the squeaky wheel gets oiled
If you google leg protectors you’ll see a variety of options that may help you when gardening. The other thing to watch out for is skin tares. These need to be looked after as our skin is fragile and we are vulnerable to infections. It’s all manageable and part of the deal so don’t be too worried 👍🏻😀
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