Capillary fragility, hip stress fracture and tapering

[Sophiestree]

Can I assume that the burst vessels by my eye (this week it's my right eye, three weeks ago it was my left) and all of the same over my legs is due to the steroids?

Today's looks like I have got a fat eyeliner pencil and drawn it down from the corner of my eye. I guess others will think it is a make up malfunction!

They all come out of nowhere, I hadn't hurt myself, and hadn't even got around to washing my face, they just appear, same on my legs, I look a bit beaten up. Very dark and don't look like petechiae, which I have got in the past from straining (being sick) in my eyes, and around the stomach area.

I have a lot of pain at the moment due to a likely hip stress fracture, but the MRI wait is about 4 weeks I think, so not much I can do there. Guessing I can't really do a flooding dose of ibuprofen every day! I was already having a lot of muscle issues but after falling in the forest while walking my dog nearly 5 weeks ago, I have clearly wrecked myself with the dreadful bones that I have.

So, I am wondering, but likely answering my only question re my tapering. I was going from 10-9 on the DL taper and next week will be my first full week at 9. However my vice like headaches returned pretty soon after reducing from 12.5, not all the time though, but now I am getting the same original neck pain and slight jaw pain and definite shoulder ache. I am also working three days next week which I haven't done for weeks and so thinking either to go to 9.5 or 10 for the week and see if it makes a difference. Thoughts would be really appreciated on whether that is ok? enough? or try and work through it.

I did try to post a photo of the eye, but the site clearly doesn't like it. I tried on Chrome, Firefox and on my samsung phone. None of them were having any of it.

Thank you in advance. I haven't really been reading huge amounts due to the hip pain and struggling with general living. Hope you are all enjoying this wonderful weather (apart from yesterday) as it is really helping my mood, hope it is yours too.

[DorsetLady PMRGCAuk volunteer]

Hi,,Personally I would try 11 or 12mg for a week or so, if you had intermittent issues from 12.5mg down,....have attached post which discusses a flare (as opposed to steroid withdrawal) and gives the usual recommendation for treating same.

And certainly don’t trying reducing if you are working next week.

healthunlocked.com/pmrgcauk...

And maybe try 0,5mg reductions once below 10mg.

You are correct about blood vessels being down to Pred...hopefully should lessen as dose reduced...and always look worse than they actually are.

[Sophiestree in reply to DorsetLady]

Thank you, I was wondering whether I should actually increase it even more than just back to 10. Maybe I will go to 11 for the week and see how that works. Sorry to ask, but should after that week, if all is going well, reduce to 10.5 on your plan, or back to 10 and then .5 after that.Yes, agreed re the blood vessels, definitely look worse than they feel, just a lot of them!

Thanks again

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

If it works, you could probably drop back down to 10mg, but you have a lot of added stress at the moment so I wouldn’t be in any rush to restart taper...just give yourself and your body time to return to some sort of normality.Well as near to normal as you can be with PMR!

[Sophiestree in reply to DorsetLady]

OK thanks I will do that. I think the hip pain is overpowering a lot of other things right now. I may stay at 11 for a couple of weeks and then reassess. thanks so much, really appreciate it.

[SheffieldJane]

All I can remember is another GCA sufferer posting a picture of a completely crimson eye. This was while she was on relatively high GCA doses. I think it was a strange Pred side effect like the bruising. She was ok. It did look alarming she woke up with it.

[Sophiestree in reply to SheffieldJane]

Good to know. It is odd when one minute it's not there and the next it is in seconds...As we both know with the constant issues with eyes we both have, this is now just added to my list.

[SheffieldJane in reply to Sophiestree]

I’ve got another. I am an avid reader, I use an E Reader and can control the font etc. I am experiencing the couple of lines at the bottom of the page looking jumbled - a bit like double vision. It may be eyestrain. I haven’t changed my prescription because of the ever changing eyesight . I am becoming extremely high maintenance.

[Sophiestree in reply to SheffieldJane]

So relate to that. I dread when my sister rings and asks how I am!!! The blurry vision, which isn't consistent is so frustrating. Dry eyes, infected eyes... urgh

[readingbooks in reply to Sophiestree]

PMR only and on 5 mg Prednisone when this happened to me. Very dramatic looking but painless. I went to Optometrist , was reassured and, indeed, it slowly reabsorbed. Alarming experience !

[Sophiestree in reply to readingbooks]

Yes it definitely looks worse than it is.

[PMRpro Ambassador in reply to SheffieldJane]

I had an eye bleed exactly like that a few months ago - completely out of the blue. I put my hand up to rub my eye and there was a slight but sharp pain. I went to the loo shortly afer and saw it when I washed my hands! Never had one before despite 12 years of pred! Took a couple of weeks to fade - wore sunglasses any time I left the house ...

[Sophiestree in reply to PMRpro]

So interesting isn't it, how they suddenly come out of nowhere and always at the corner of my eye. The first time I had one I thought it was dirt as I had been in the garden and went to try and rub it off. It is quite tender along with the top of the eye lid, but more annoying to be fair. You can never assume that you know what these drugs will do, always a surprise. My muscles are more my main concern at the moment. But little I can do with the hip right now.

[Kendrew]

Hi Sophiestree. Just wanted to say that I've experienced similar and awoken with a red, sore looking eye that seemed to appear out of the blue! Cleared up within a few days on it's own though. I wore my sunglasses when I went out (they have protective UVA/UVB filters) and whenever I felt the need, I just layed on bed for 10mins with 2 cotton wool pads soaked in iced water over my eyes to soothe and cool.

I've also developed new and sudden patches of tiny thread veins on my legs which again just seemed to appear overnight! I'm on 9mg pred having done a very slow taper down from 10mg.....10mg has twice proven to be a tricky dose to navigate through for me, causing unpleasant and persistent head pain with neck and shoulder stiffness too. Tests eliminated GCA but 10mg is definitely a problem! Once below that, things appear to calm down again.

Just wanted to share my experience to try and reassure you others have experienced similar. You've already been offered very good advice so won't expand anymore on that.

Hope things sort themselves out for you soon.

[Sophiestree in reply to Kendrew]

I haven't had blood shot eyes yet! Just black blobs on my skin by my eye at the moment, Maybe I have that to look forward to.I don't wear sunglasses, should I? never really thought about it to be honest.

My legs are another story, burst blood vessels and the thread veins, lovely!

Interesting re your tapering. Do you think I should persevere with what I am doing. Although I won't just now, due to my stress hip fracture, I am finding it hard to cope as it is, as the pain is so draining.

Good to read your thoughts. Thanks

[Kendrew in reply to Sophiestree]

I think its imperative you protect your eyes from the suns harmful rays as prednisolone increases your chances of developing cataracts. Since starting pred 2yrs ago, I now have them on both eyes, but protecting my eyes will slow down their progression. As for the tapering, it will depend on whether like myself, you usually react to the tapers with withdrawal symptoms or whether it's a flare because you need more prednisolone. I think with your current circumstances I'd follow DorsetLady's advice. You've a lot going on and probably need the extra pred.

[Sophiestree in reply to Kendrew]

wow, I never cease to learn stuff. So should I get a certain type of sunglasses? Go to the optician? 😬Yes, I think I will stick with 11mg for next week and maybe the week after and then reassess the tapering when I can relax a bit more. I'm happy to go through symptoms, I just get confused sometimes, and the head vice like headache can stop me in my tracks sometimes. But now it's got my neck back to how it was, that was the clincher for me I think.

[Kendrew in reply to Sophiestree]

I personally think that even if your eyes appear perfectly healthy and you don't need to wear glasses you should always be mindful of how harmful the suns rays can be to your eyes. It's not just your skin you need to protect! When you're taking steroids long term the risk of damage to your eyes increases....it's not inevitable, but conditions such as glaucoma, dry eye, cataracts, etc, are all possibilities that need to be considered. So, I'd certainly strongly advise that regular eye check ups are a real necessity as well as wearing a pair of good quality sunglasses (not just fashion sunglasses!) that filter out ALL the harmful rays of the sun and protect the eyes. Your own optician or well known 'High Street' opticians would all be able to advise you if you fully explained your medical situation and what you required.

[Sophiestree in reply to Kendrew]

Yes. I am having 6 monthly check ups now as my prescription has definitely changed. I suddenly need reading glasses for most things which is a totally new thing for me. I've always been short sighted but mainly for driving etc. I will try and get to the optician this week and talk about good sunglasses. Thank you

[Thelmarina]

A burst blood vessel in the eye seems common when on steroids - but it can be caused by a sneeze or a cough. It looks horrid but does go. I have one at the moment just in time for my first lunch with friends for over a year. I think I shall design an eye patch! 😅

[Sophiestree in reply to Thelmarina]

Ha! An eye patch might be quite distinguished!

[PMRpro Ambassador]

Don't you think it might be a point at which you need to be signed off work for a while? Stress and GCA don't mix - and you are working. unwell and have a possible trauma. You admit you are struggling. Major stress ... Time to look after YOU rather better - not the job - because there will come a point where you can't do any more and that might be worse than taking some time now.

[Sophiestree in reply to PMRpro]

You're right, and actually, apart from this week coming up, I have only done the odd day. Maximum one day a week. I am self employed so I turn down things that I think might be too stressful, my job has no breaks at all, it is full on, so I can only really say yes to the easier jobs. I would have pulled out of next week, but I can't find anyone to cover for me, so feel I just have to go with it. I have nothing in my diary after that until July, and even then only about 3 days for the whole month. It's a tricky one when you need money!

[Kendrew in reply to Sophiestree]

Look at claiming Employment & Support Allowance. I was able to do that and it's not means tested. Might help.

[Sophiestree in reply to Kendrew]

OK thanks, I just assumed being self employed there weren't many options for me.I will have a google.

[PMRpro Ambassador in reply to Sophiestree]

I was self-employed for many years - I know the problems! I wasn't dependent on my income though - but there is always the problem that if you turn THIS job down, will they come back to me next time or go to someone else.

[Daffodilia]

My optician has told me the burst blood vessels in eye are harmless - probably happens when you rub dry eyes (caused by PMR) - I use Optex intensive dry eye drops 3 or 4 times a day and in night

[Sophiestree in reply to Daffodilia]

Thank you