In Denial - my big mistake

[mumraa123]

I was diagnosed with GCA just before Christmas.  I kept my sight, with just some damage to the optic nerve on my left eye, which also has maculopathy and retinopathy (early stages).  The high dose prednisolone (80mg) made all my aches and pains go away, but I felt like a zombie by January, with all of the horrible side effects everyone on this forum describes.  Delighted to find this forum and to see that it is not just me suffering.  But I was so in denial and really thought that if I ignored the dizziness, tiredness etc. it would go away and I could "work through it", so tried to carry on as before.  On Jan 24th I was determined to cook a lovely roast supper for my son's family.  Big mistake.  I tripped over the baby's toys, fell down and broke my femur, resulting in a partial hip replacement (surgeon worried about the 60mg Pred that I was on, plus diabetes, so did not replace the whole thing).

Since then, things have got so, so much worse.  My hip became infected, I spent two and a half months in hospital and now am at home,  in a wheelchair, on a vacuum pump which is sucking out all the horrible green slime in my hip.  The drugs I have to take are horrendous, having the most powerful antibiotics known to man which make me feel very ill, as well as Pred, now 20 mg.  I had a total of five operations to "DEBRIDE" the infection, which have not worked, and so now I have to have two more major operations to replace the whole hip, involving horrible procedures that I don't like to think about!  I am a total wimp, terrified of hospitals, operations and everything.  I only just last week plucked up courage to look at my wound, which is huge, deep and full of horrible stuff. 

I am so scared, I have read that what has happened to me is "catastrophic", even without taking steroids and having diabetes, and the mortality rate is higher for this op than for others, but especially for people with "co-morbidities" like mine!    The risk of getting sepsis is huge.  I'm trying to look on the bright side, I really am, but as I feel so ill most of the time, and have been in bed now for three months, I get very down.  The surgeon wants the steroid dose to go down much more before he operates again, but because of the infection in my hip, my sedimentation rate is too high.  So I keep on antibiotics for 4-week stretches, then they wait and see if I get v. ill again, which always happens, so they put me back on antibiotics again.

What a mess!  I am kicking myself for being so stupid and thinking that I could carry on as I did before the GCA was diagnosed. Just to let everyone know, the dizziness and wobbling, sweats, tiredness, rages and depression are REAL, I so wish that I had listened to my body and stopped overdoing it.  Part of the problem was that nobody really understood how ill I was feeling after I was diagnosed and I did not realise the seriousness of GCA, even when my sight went wonky I still thought they must have made a mistake!   Even in hospital the nurses and doctors had no idea!  Orthopaedics, rheumatology and opthalmics do not communicate, so I was having to explain all the time why  I liked the lights low, why my eyes were so dry, why I kept falling asleep all day and woke up at night.  Nobody was that interested really.  Sympathetic, yes, but they all had too much to do to research my problems as well!

I have a lovely District Nurse who comes in to change my dressing and  pump and now am waiting for my next surgeon's appointment on 14th May, when I'm dreading the chief consultant telling me that I do have to go through these operations.  Still on antibiotics, increased tablets for type 2 Diabetes, 20mg Pred, strong pain killers, etc. etc.

But to everyone - don't do what I did and try to keep on carrying on!  My life is now at risk and just because I was in denial about GCA.  As I fell and broke my hip I thought, "oh no, this is going to be bad" and sure enough it was.  I am 70 - before all this everyone said I looked and acted much younger but now I look horrible with a moon face and buffalo hump, even despite using up mega calories after v. painful operations. Once I was a headmistress, now I cry when I look in the mirror and walk like Quasimodo.  Sorry to be so depressing everyone but it has helped to get it out, hope someone reads this. 

Love to you all

Mary (mumraa)

[DorsetLady PMRGCAuk volunteer]

Oh poor you Mary,

What can I say, except how sorry to hear your tales of woe. Can relate to the GCA problems, but not to the others. 

Don't beat yourself up for what happened, most are in denial at the start and try to carry on as normal, and usually end up learning the difficult lesson that we cannot. 

As for the moon face, it will go, as will the tears, they're partly due to Pred, partly to depression(understandably) and probably fear of the unknown. Hopefully, getting your thoughts out in print have helped a little, and please feel free to do that at any time.

Everybody on here will have been through some of what you have been through, and will offer advice, sympathy and empathy.

You may have a mountain to climb - but that's what they're there for isn't it? Put your Headmistress' hat on again - you never lose what's underneath it, it just hidden temporarily. 

Good luck. 

[mumraa123 in reply to DorsetLady]

Thank you, thank you Dorset Lady.  Just to have those words of comfort means so much.

Best wishes, Mary

[polkadotcom]

Hello Mary, I'm so sorry that this has happened to you, I think most of us are in denial to begin with.  When I think about it, I know that at the beginning I tried to carry on as usual, but it just doesn't work like that.  Incidentally, I have yet to find anyone with PMR/GCA who could fairly be described as a 'couch potato'.  All of us are busy, busy people who juggle various activities with ease - until the crunch comes.  I have a feeling that Mother Nature might be behind this as a way of telling us to slow down (slow?  I have multiple medical conditions and am waiting for a new knee.  According to my husband I move like a snail wearing clogs but that is better than some of his earlier descriptions which included the John Wayne swagger, a geriatric robot and a gorilla).

Baby steps are needed right now and distraction.  Start small and build up over time.  If coming on here to post meant 4 minutes when you weren't thinking about it all, then that is a positive 4 minutes.  I use distraction to destruction at times, worrying where the next book will come from - but that does mean I'm not worrying about my situation.

Be restful.

[mumraa123 in reply to polkadotcom]

Oh, good luck with the new knee polkadot.  I'm sorry you have to go through  that, especially with multiple conditions to cope with. It does make me realise that we're all in the same boat!  I am totally with you on "distraction" - am into  Netflix which is pretty distracting when I just can't get up, but my eyes can't take too much of that, so I just try to get up, even if it's to sit in the chair and watch the weeds growing in the garden!  However, the sun is shining today and I just managed a wheelchair trip to B&Q!  Amazing how every little trip is a milestone gained and lifts your spirits. 

Thank you for replying, I feel so much less lonely now.

[Nanalinboy]

Hi Mary, I have just been to the gp at my group practice. I went with all the symptoms you described and assumed it was my hypothyroidism as usual, I was amazed when the doc suggested it may be pmr and has taken a bucketful of blood to test. I have had some problems with my eyes, I go every 26 weeks to the optician and my left eye is worse every time I go. As you say , it's a bit comforting to know you're not on your own. Keep your chin up xx 

Lyn 💞

[PMRpro Ambassador]

I can't even begin to think about what you are going through Mary - as if GCA on its own were not enough. I'm so sorry and wish you the very best.

However - if your ESR is high that isn't really due to the GCA necessarily so I doubt it is significant. It will be your GCA symptoms they should be going on.

And - it may be worth asking for advice about them trying tocilizumab to try to get your pred dose down even further. It has been the subject of a clinical trial for the last few years which is now finished and we are waiting for the results and report. However, insider sources are saying it has been successful and it is expected that the FDA in the USA will approve it within the next few months. It is a drug already in use for rheumatoid arthritis so there is no problem getting hold of it although it would be off-label use for GCA at present.

Nothing venture, nothing gained.

Do let us know how you get on - and come back any time for a rant/wail/cry. We're here to listen - any time.

[mumraa123 in reply to PMRpro]

That is so useful to know.  I'll certainly ask the rheumatologist when I see him on Wed.  As you say, nothing ventured nothing gained! 

I did mention this site  to the first rheumy I had though- he totally poo-pooed it and sent the nurse out to get the hospital information leaflet on GCR, saying that was better!  As if I hadn't read that very info sheet online, plus Googled everything in sight already until I found this support group.  Here I find absolutely everything I need to know and if more doctors read it, they would have some insight into how terribly ill we feel most of the time.  So I might be just another know it all, Googling raving psycho to him, unless the new rheumy is a bit more open minded than the first one.

[PMRpro Ambassador in reply to mumraa123]

I said somewhere else - do the rheumies poo-poo information obtained from ArthritisUK? This is from PMRGCAUK national - one of the 4 UK charities for PMR and GCA. With patronage from world-renowned rheumies who do keep an eye on what we do and say and to whom we go when we have questions/need advice. 

I am about to go to an international meeting of rheumatologists - including some of those rheumies - as a PMR Patient Research Partner. Others on the forums have been involved in drawing up the most recent guidelines for both PMR and GCA. So we aren't just something who rolled in off the street.

[mumraa123]

How true!  Like you, my husband is also involved in patient research groups.  He is always so impressed by their dedication, interest and commitment.  However, life can be so different at the chalk face and there are variations from hospital to hospital, doctor to doctor.  Experience in three different hospitals since Christmas  absolutely convinced me that doctors and nurses are wonderful human beings who give themselves completely to their jobs.  But we are all human after all and people are not always open to suggestion.    But I guess it could be the way I tell 'em!

[Shastring]

Hi mum ra,

First off I'm so sorry for all you have and are still going through.  Please don't be this hard on yourself, we here are all victims of this illness and some of us so misinformed and mis judged. 

Unlike you I haven't had many bad side effects from the pred, lucky I guess, yes I notice I'm a bit more short tempered, moody  and have a very increased appetite, but I only weigh 100 pounds to begin with so can stand to gain a few which hasn't happened yet.

We all need to be extra careful and unfortunately you have had some bad luck.  You are not depressing us here when you explain your experiences as we can all benefit from what you tell us.

Please take care of yourself and let's pray that you recover and begin to improve every day.

Sending you hugs and good wishes,

Shastring

[mumraa123 in reply to Shastring]

Shastring, thank you so much for your encouragement.  I have been so uplifted by your comments and the support of everyone here.  I can't always reply straight away because I have to go away and lie down for days after a burst of energy - eg the wheelchair trip to B&Q!  But I am so delighted to read your comments.

Best wishes, Mary

[Shastring in reply to mumraa123]

Hi Mary,

Good to find your post. We all have those days when we can't do one thing or another so you know that we all here understand. I hope you are having more good days and getting rest. We can only take one day at a time. Everyone here is like a family, we have come to trust one another and it's such a good feeling to know that good advice as well as friendly words of encouragement are always given. Please take care and keep in touch.

Sincerely, Sharon

[mumraa123 in reply to Shastring]

Hi Sharon, thank you so much for getting in touch.  I have just come back from my rheumy appointment and am now lying in bed typing, before nodding off again.  It was a good appointment, he has worked out a schedule for me to get the steroids down to10mg before the first op, and is communicating this with the ortho surgeon.  As for the new drug, it's wait and see how I get on with the planned reduction first.  Not that I mind - I really want to put it off for as long as possible, but then the infection could get even worse.  My ESR is 35, he ddn't tell me anything else but I guess that is high for me.  'He is really going on symptoms more than anything and says that the PMR is still very much around and will take a long time, probably one and a half more years, to get better.  But this man was so nice and he did understand how ill I feel, unlike the orthopaedic man who expects me to be breezing about happily!

So lovely to have your words of comfort and all the advice that I am getting.  I am really relieved that the level of understanding is so spot on

Best wishes,

Mary

[Shastring in reply to mumraa123]

Mary that's good news, I'm glad the Dr  is working with you and listening. You do need your rest and peace of mind so its definitely nice  when things go smoothly.  I to am trying to get my neuro eye appt moved to the 11th instead of the 18th but may not be able to. I see a change in my eyes and so nervous but just trying to get through each day.  The ER is a last resort so hoping I won't need it. Everyone here has been a source of comfort as well as knowledge, it's wonderful. Ok eyes beginning to tire so you be well and stay positive.

Hugs,

Sharon

[tina-shelley]

Hello Mary, after reading your post it's no wonder that you are scared and anxious, I only broke my heel last year and suffered no complications and even I thought oh crikey I hope all will be ok. But for you, I would be just the same. I think all your clinicians need to get together and decide on a recovery plan.

But just to let you know, a friend of mine was diagnosed with bowel cancer about  back ten years or so, he was operated on and given a bag, then the bag was removed, another tumor, a further operation, another bag, then the bag was removed, another tumor, another operation, another bag. Last operation, bag removal. After all these operations over the years the scar on his stomach area simply wouldn't heal and the dr's were as worried about his open Un healing wound as they were his cancer. They then tried him on clinical strength manuka honey and within 2 months the wound had healed. He told me this dreadful story last year.

The point I want to make is that some wounds do end up taking time to heal and the important thing is that as long as you do all they suggest and it may mean having the more serious surgery to get rid of the internal infection, and in turn don't put yourself in further infection danger it will heal, it will just take time. I wish you all the best and please keep us informed of your further improvements. Regards, tina.

[mumraa123]

Tina, I have heard about Manuka honey, I will tell my nurse about it tomorrow.  Your advice to go ahead with the surgery is so right, but I do wish that I could make the wound better and not have to go through it.  At the moment there is no sign of it getting better and I will see the senior consultant surgeon in 2 weeks' time, so time running out!  Today I am seeing my new rheumy and asking him for Tocilizumab to get the steroids down.  I do feel encouraged by your friend's story - there are always people worse off than I am and I am so glad that he got through it. 

Thanks, many thanks to you

Mary

[Asbeck]

@mumraa123 I am so very, very sorry.  I hope and trust that on May 14th you are well taken care of. Obviously you are very intelligent and weighing "co-morbidities." (This was a knew thought for me.) But you are very intelligent. You are taking care of things now as best you can. This makes a big difference. I am pulling for you. Apparently your doctors are as well. You are in my thoughts. My heart goes out to you. Please try to hang in there. Please keep up with all the things which the doctors are requesting of you--vacuum pump, pills and operations. And know that you have helped me. Thank you.

[lynne99]

I had a knee replacement and it did not heal well. I was also given very strong antibiotics, they made my wee and tears red like blood and made me vomit. I am now well as I am sure you will be in the near future. When you are in the middle of it, you can't see the end , can you? But it will improve, Chin up xx

[Polywotsit PMRGCAuk team member]

Dear Mary,

I am so, so sorry to hear of your situation. It is generous of you to think of others and how your experience can help them at such a time. I am sending you a private message. You can read it by clicking the tab at the top of your page next to your profile name.

All best wishes

Kate