Hi all, just wrote and lost the lot !!! So will shorten this as not well.
Blacked out Monday at least 3 hrs and friend found me collapsed, rushed to hospital where they got me to wake up.
Kidneys blocked but not the cause, had CT scan on head and heart then Tuesday angiogram.
Found I got a squashed heart valve or something like that so have to wait for a new valve replacement but not know till this week when cardiologist sees me.
Had my GCA blood done month before which was 14, Tuesday morning sent to lab their test and believe it or not was 250 !!!!!!
So on since Tuesday morning very strong intravenous antibiotics which still have another 7 days of !!! Hope to get my latest reading tomorrow!!!!
Fingers crossed it has gone down a lot !! ( I don't have much luck )
Ever likely I have not felt well for a while have problems with heart valve !!
Below is a piece I put on here for others to get checked out !!!! Please please ask your doctor for tests as I don't know if this is my cause but if I remember to ask doctor I will let you know.
Going now as head a bit bad again GCA ohhhhh they increased preds up to 20mg !! don't think there doing much 😡
Take care everyone and will keep updated when I can
Thank you again everyone for all your support
Margaret xxx
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Margaret1951
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Oh Margaret but you do have luck because your friend found you. Bless you what an awful shock. Thank you for the link, it just shows how vigilant we must all be. I hope you make a rapid recovery. Do let us know how you get on! Take care, thinking about you.
You're such a great supporter for others here, and I'm so sorry to hear about your trials and tribulations. Life can throw some (very) curved balls at us sometimes :-(. Have faith - and keep us posted if you can?
Oh Margaret what a horrid experience for you, and a shock for your friend, too, but thank Heavens she arrived when she did. I can't believe that in spite of how poorly you are, you have still thought to post a very valuable link to all your friends on here. I, for one, will be following that up as I was diagnosed with a slightly leaky heart valve a long time before succumbing to GCA. It has never been checked since, so perhaps it's time to rectify that. I do hope you won't have to wait too long for the valve replacement - lots of good luck wishes for a speedy and complete recovery. Thinking of you and sending a big hug.
What a frightening time you're having😢. I really hope that you start to feel much better soon and that the enforced rest will do you good. Please take care of yourself and, as and when you feel up to it, let us know how things are going.
For heavens sake Margaret - as if PMR/GCA isn't bad enough?! I would buy your friend a large drink and get them to check up on you daily after this episode..!
Hope the mess are getting things under control and, as others have said, keep us updated.
I'm so sorry you have had such an unpleasant time. Thank you for having the strength to tell us about it. Take advantage of being looked after and rest. All good wishes for a speedy recovery.
So sorry to hear this news but thank you so much for letting us all know about it. Hoping you get better soon and a replacement valve will sort you out. Sending you very gentle hugs and all good wishes. Jannie xx
Just adding my voice to the chorus. Thank you for letting us know...I always think when I ask them to check out my aorta that I am being a pain. After your story ....and you have my sympathy and good wishes for a speedy recovery....I will not feel so bad.
Thank you so much x I have been twice more in hospital with sepsis. Have had bad depression through pain and steroids and losing my darling stepbrother not long after my devoted aunty late last year. And to cap it all just lost my last aunty out of 5 of them last week. now no family except you all on here and my 2 chihuahuas. never ending I am fed up with these diseases as not had no remission for ages. Back up to 10 from 7.5mg now down to 9mg, hips bad through osteoporosis because of steroids, still having scans on my heart to make sure my valve has not got worse, so not a lot going for me lately. I do read your posts still even though I have not felt like talking to see how you all are. I know I shouldn't but I push my body to the limit as I don't want to be beaten and not one for lazing about. I wish you all well and hope someone out there has gone into remission xx
I am so sorry to hear about your losses. I, too, lost the last person in the generation before me just a few days ago. An aunt who looked after me for a few years when I was a small child, after her sister, my mother, died. Now I am the oldest person left in this particular branch of the family, being the oldest of all my first cousins. And I felt unaccountable sad because this aunt and I had actually lived most of our lives thousands of miles apart with only occasional visits over the years. The ties of family can be very strong and grief that comes when the ties are broken through death is hard to bear. But our essence, our true being, continues with or without the body and our loved ones are not lost to us forever.
Hi, I am sorry to hear of your loss also, my aunty who passed in October took me under her wing when my mum died. Then I looked after her and she died in my arms - very very hard and if I am honest I still cry for her but talk to my mum 😇 I think I need to up my preds again tomorrow as the pain behind my eye and neck and legs are bad and have been for about 3 weeks now and no better. I am a stubborn sod as fed up of taking them, I think 5 1/2 years of them have taken their toll on me now and damaged my bones at same time. I am going to ask my doctor if I can have another dexa scan, he already told me my left hip will have to be done first 😱 Holding off as long as I can. Does everyone on here get depression with preds anytime???
I think we all get low or depressed from time to time, the PMR, GCA, Pred; you’ve had your heart issues, sepsis plus all your personal family losses. Just looking at that is more than a reason for depression.
It would be worth talking to your GP because maybe an antidepressant may be helpful at this time.
I’m nearly 63 now but my Mum passed away 10 years ago, l always used to say l was now an Orphan, no Mum, Dad or Brother & l became The Head of The Wider Family taking up my Mother’s Mantle as the Matriarch!......
Like Heron says it’s strange when you’re suddenly the top of your family.
I’ve had PMR since October 2011 & in that time l’ve had Breast Cancer, a Mastectomy & Chemo; my Oncologist warned me it would catch up with me at some point as l handled it all very well at the time & it did, l’ve been on an antidepressant for 14months l just never realised how low l’d become!.....
Oh bless you, and here is me with only a few problems moaning ! I have been on amitryptiline before and since I lost my husband, 19 years ago. Main reason had motorcycle accident - died and had emergency resuscitation, since then nerve gets trapped in groin and that leg gets restless, hence pills. Doctor said I can take them at night with my zapain if pain bad but I won't risk it. I now know when I start getting low the GCA/PMR is coming on, very strange , I am just so fed up with these ailments as they never give me a break , I keep trying to beat it but , but no luck it beats me, 😭 I do hope you are feeling better x
I have Amitriptyline for old war wounds neck/shoulder but it is not at the therapeutic dose as an antidepressant, it’s usually 10mg; 20mg or up to 30mg so it doesn’t work as an antidepressant just a muscle relaxant, which is why you’d have it after a motorbike accident.
But, if you think you are depressed you can have another suitable antidepressant along side it. If you have any concerns about any of your Medication always double check with the Pharmacist & keep to the same one as they then have all your past history & can check for any interactions.
Sometimes a little boost from a suitable antidepressant may just give you the lift you need & help you carry on, persistent pain & not feeling well is hard on all of us!
So on off to cast an eye over my guest rooms as from tomorrow we’re on a Staycation, our friends arrive from the USA in the morning, landing at 8am. We’re not too bad considering we only moved in 10 days ago! We are only doing B&B then eating out plus a stay over in Liverpool as we’re going to see the Terracotta Warriors, saves going to China! 😂
Wow that's exciting ! Didn't know they were in Liverpool ! Hope you all have a lovely time, no breaking any 😂
I am on 25mg every night but doctor said I can increase if I like to 50mg. I used to be on 100mg originally but came slowly down on my own over the years.
So sorry that you have lost so many of your loved ones Margaret, l have lost all my aunts and uncles,and my husband passed away last year. I can understand how lonely you must be feeling,please keep posting,we care about you and hope that you can stay strong,it is no wonder that you will feel depressed,l hope you will feel better soon,sending you love and caring thoughts xx.
Thank you so much, this forum is a life saver for us all, my aunts funeral is this Wednesday down in oxford. I cannot go and my uncle told me he understands and concentrate on getting a bit better. Life really is " a bitch" as the saying goes, makes me wonder why God punishes the good people and the bad ones have nothing wrong with them !
I can understand how you feel Margaret,l am afraid l have no answer ,there are tragic things going on in the world everyday and we may wonder why God can allow this to happen. I do not blame God for accidents or wars because it is the freedom for us to make our own choices that cause these ,as God did not make motor cars or guns etc.,but little children and good people suffering make it very hard to understand.l hope that you will feel better soon,you have a lot to cope with.Take care and rest as much as you can and please keep posting to let us know how you are xx.
I seem to always ask God why me me me all the time, I know it's not his fault but we do. Has anyone actually gone into remission on here with no more preds ? wish I could 😇
There are a few people on here who have gone into remission and no longer require pred. On the patient.info forum there is actually a thread with comments from Zero Pred Club members. But most of them aren't here except the ones who feel they have a role in supporting others through the charity. jinasc, DorsetLady, Celtic are all off pred - though to be fair they had GCA, Celtic had both. But I also know of quite a few people with PMR who have graduated from the forums because they no longer take pred - but they are off living life and putting PMR behind them.
Hi, wouldn't it be lovely if they found a cure for us, ( not in my lifetime)
One thing my doctor cannot explain is, I used to have migraines very bad for years, then when in Spain and (thought) its strange my pills never took it off (for a whole month) I was there. Then when I came back I still was afraid to go doctors as I thought I had a brain tumor !!!! She went mad with me at not going ! That night straight on 60mg preds, eye clinic next day, biopsy the week after, I felt great in a couple of days !! But no more migraines since I got GCA ! they do not know why though.
So once these diseases go and off preds - you never get it again ???
It's not unknown for people to develop the symptoms again, even more rarely with GCA I believe. But I bet most of us have made lifestyle changes while we're ill, and this could help us stay well afterwards. I know one of my first thoughts was there was no point taking a heavy duty med like pred and returning to the same body which got ill in the first place. I thought I was living healthily, but there's always room for improvement. And factors which can cause some symptoms may be sort of unrelated to PMR itself and if we get those things sorted out it also helps. I know my expectation is once I'm off pred, however long it takes, that's it for me for the rest of my life!
Awe I hope you do come off them x I don't mind if I can come down to 5 mg !!!! I could live with that 😇 But it's the going back up again which depresses me as it's beating me !
My skin is getting so thin now and my little chihuahuas only have to jump On me wrong and their claws accidentally catch me on the arms ,Just got 2 days ago 11 blood spots come up immediately , must admit it did hurt me this time 😭 But they do love me making a fuss of them. Is your skin thinning with preds ?
I did get the little purple bruises (petechae) briefly, but no, I have to say my skin is fine, just older! The other day a blackberry bramble (I think, didn't notice when it happened) slid along the surface of my skin and didn't break the skin, but left a long red trail which faded in about three days, not a true scratch.
I won't say you never get it again - unfortunately the nature of autoimmune disorders is that the immune system remains a bit labile and there are people who have had PMR more than once - and a very very few people who have had GCA again. But it is very unusual.
The best way to avoid having to go up again is to be very careful about reductions. There are people on the forums who have reduced the slow way who never had flares - while a lot of doctors push bigger reductions and assume that flares are part of the disorder. They needn't be - it has been acknowledged that reducing too far or too fast is the main cause of flares.
We don't think it is rocket science - apparently they do!
I went back up to 10mg after doctor told me to because of flare up, I was so so but a lot better. So within the month I got down to 9mg to test myself 😭 Wrong move ! So in the morning back to 10 again, I can't for the life of me understand why my immune system won't kick back in.
Today was the worse day I have had since getting this, the pain and soreness made me cry, so took just one zapain to take the edge off which it did. But this is not the answer to it ! I am 67 and feel like a 100 year old !' Yes I have diabetes, raynauds, cholesterol, and my heart and suffering with this PMR !! But I have always been energetic all my life and find this is just weighing me down now all the time. I am going to ask father xmas for my health back this year 😱
Well, if you are having problems with that the dead slow can get you down at roughly the same rate, but it is easier. healthunlocked.com/pmrgcauk...
There are some other slow plans as well, but this is what I've used. and the only one I have a link for. What I did for a while was reduce according to this plan by .5 mg then if things were going well I'd reduce a further .5 mg half way through the taper. Later, at very low doses, I only reduced by .5 per month or six weeks, didn't try to go any faster. It seems to make it easier for the body to accept that it's not getting it's usual pred dose!
Have gone up to 10mg this morning from 9 mg , could hardly walk my dogs this morning. Will try for a week to see if that helps, if not will up again. Have to ask my doctor for another dexa scan soon as think my bones are now rubbing together ! He did tell me last time my left hip will need doing first but think my right one is worse now 😭
I am feeling bone idle as just cannot clean my house at the moment and it feels dirty !!
Should I stay on 10mg for a month first before slow slow tapering? I have downloaded the link you sent thank you and fingers crossed it will work for me !
It isn't a dexascan you need if you think your "bones are rubbing together". The dexascan shows whether the bones are the right density. "Bone on bone" as you hear people say is due to degeneration of the cartilage in the joints - and there it is a plain old-fashioned x-ray that shows that. But even that may not tell the whole story - some people's cartilage can be shot and they have no pain, others may look OK but their pain is severe.
Creeping up 1mg at a time rarely works well - the inflammation is creeping up too and you don't catch up. Try a few days of a few mg more and then reduce fairly quickly to find the dose that is better.
I went up back to 10mg this morning and had no painkillers !!!! After an awefull start I had the preds kicked in thank God ! Hope to have another good day tomorrow 👏 If not will take advice and up again. I take them just before I have breakfast, I know I have had these years but never thought any different. Perhaps I am taking wrong time ???
The earlier you take the pred the sooner it works as it has less to do. Some people split their dose so they have less pain in the morning. But everyone is a bit different.
Some people wake up early, say 5am to take their pred and then settle down for another couple of hours - by which time it is starting to work. Others take about 1/3 of the dose in the morning and the rest later in the day so it then lasts overnight so they have a better morning start. But I can't tell you when - you have to experiment a bit.
It is nothing to do with your immune system "kicking back in". It is still deranged and is still attacking your body by mistake. You need enough pred to manage the inflammation - that is all. And speed also has nothing to do with it: however slowly you try to reduce NOTHING with get you to a lower dose than the minimum required to combat the inflammation. As long as the underlying disease process is active you will need pred. And ENOUGH pred.
I believe it does happen Margaret,but as PMR pro has said they usually have no need to use this forum anymore. There is a down side for some who come off the Pred.,they can develope GCA,which then means they have to take a very high dose and start tapering all over again,it happened to a friend of mine, fortunately she is OK now and off the medication completely.Dorset Lady and Celtic have given a lot of good advice and information on this forum.l would like to be off the steroids myself but l am stuck on 3 mg.xx
I am in absolutely bad pain today in hips and muscles, having a job to walk 😭 This is the worse I have felt since getting them both. Tomorrow I am going back up from 9mg to 10mg again 😭 I hope it settles down doing this, will do for a week and if not calmed down will up again sigh.
My doctor lets me do this on my own now with his blessing, he told me I know my own body better than anyone 😇 He knows about this forum and said it sounds good as only others who have PMR and GCA come on it, and good advice.
I even started to get rid of my mouse face, {{{sigh}}}} I hate putting on weight but never seem to get hungry until about 9 pm
I have never got below 7.5mg for some reason, wish I could get to 3mg 👏 You have done well, IS THERE A SECRET TO IT ???
Suppose to go my aunts funeral tomorrow down in oxford ! But my uncle understands. X
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Letter from the hospital
Flare-up - report on hospital treatment
Hospital admittance update
Off to the Hospital and home again
