Update:Just Beginning

[Leafsong66]

Hi lovely folks!

Last I wrote I was heading to my first Rheumatologist appointment (3/8) He was able to observe first hand my severe deterioration since being put on 60 Prednisolone, on the 19/7. As I was speaking to him I was losing my sitting balance and drooping with fatigue and changing levels of awareness. I am so grateful my friend was there to assist me in a wheelchair. ( I was , until steroids an average 56 year old who walks for fun).

So I was admitted to the attached Base Hospital. Investigation of my blood vessels via CT scan with contrast dye showed no issues. The Rhuematolgist’s plan was to withdraw me from Steroids completely and see what my symptoms were. ( You all know where this going don’t you!..) The resultant crash was absolutely frightening and not something I ever want to repeat. I have no fear of death intellectually but our bodies are certainly designed to cling onto life. My plummeting BP meant that I could barely keep conscious. The muscle fatigue became more obvious as well.

After less than 24 hours the drs now concluded that my symptoms ( still had headaches) warranted a resumption of Prednisolone at the lower dose of 25mg. So after Thursday night to Saturday afternoon I was in an acute Medical Assessment unit being monitored 24/7 ECG and provided full nursing care.

I was also assessed by the Physiotherapist who saw I had significant muscle fatigue, , poor balance, and an unusual loss of power when walking if I turned my head to the left.

Once the Medical Assessment Unit were satisfied I was stable they sent to my local hospital an hour away. I was a little anxious to leave the close care of that hospital but have the confidence now that I’ve been here a few days, that I’m in good hands.

….

So now I’ve been in local hospital. My diagnosis is GCA and steroid induced myopathy. I am currently on 20 mg Prednisolone and tapering down in another two weeks. The physio has added a probable diagnosis of Persistent Postural Perceptual Dizziness that is accompanying my other diagnoses.

My myopathy means that I’m extremely weak, can walk with a wheel walker from my hospital bed to the loo, but could fatigue if left on the loo for more than the time it takes to go. ( being left waiting for 5 minutes for a nurse to return can mean I’ve drooped over with fatigue), I wash my hands sitting down and then if I feel strong enough I can push the wheely walker back. I have to be showered by a nurse. I cannot move out of my bed without a nurse to watch me in case of falling.

My previous life before GCA and steroids was walking an easy couple of km a day! So my current lack of Mobilty is a huge drop especially at the age of 56.

My neck is now starting at times to nod, like a bobble head doll. It’s from fatigue and only intermittent. I’m scared that it might progress further but am trying not to pessimistic.

So my current life is put on hold. But… I am grateful for the excellent nursing care and Drs who listen and will respectfully discuss my case with me each day. They are saying that it’s impossible to predict how long it will take for me to recover. I have no choice but to be patient.

Sorry about the length and detail of this post. I am so grateful for all of you. I’m sure you know the intense isolation of this and the desperation of looking for others to share in the experience. It’s been so heartening to be part of this group. Thank you most sincerely.

[PMRpro Ambassador]

That's all a bit overwhelming isn't it! So sorry to hear how unwell you are.

Surely they will fast-track Actemra to safely get you off pred quickly?

And when you feel up to it - always someone here to rant to.

[Leafsong66 in reply to PMRpro]

Have you had good success with Actermera?

[PMRpro Ambassador in reply to Leafsong66]

I only have PMR (as far as we know) but for 18 years and was needing more and more pred to function. I'm not in the UK so my rheumy has a bit more freedom. It has got me from 19 down to 5mg pred.

[SheffieldJane]

I hope that this awful phase of your disease passes quickly. It sounds as if you are in competent hands. Get well soon. 🍀

[Hidden]

Hello Leafsong66🤗 sending very best wishes to you and hope you fully recover💐x

[Sharitone]

Every sympathy. Sometimes it's so hard to keep on hoping. Well done you for having such a positive attitude.👏

[powerwalk]

Oh sounds dreadfully frightening for you. Wishing you the best for a speedy recovery to getting some strength back. Let us know!

[PMRnewbie2017]

Big hugs from the UK

[WaltzG]

Oh you poor thing I hope you recover fast hugs

[Thiago1396]

very best wishes

[Croft9232]

Half my heart is in Australia as my family live there too, but I send All my heart felt wishes for your recovery and hope you feel better soon. x

[Kitten15]

Gosh you are a poor thing bless you wishing you a speedy recovery. Rest up and get your strengh back. My prayers 🙏 are with you at this difficult time. Big gentle hugs 🫂 xx

[Twopies]

good grief. I hope things turn around for you soon. I, too, have steroid induced myopathy (not so pronounced as you); I have physical therapy exercises to do and see an eensy improvement—we shall get there, you and me. Hang in,

[Leafsong66 in reply to Twopies]

Hi Twopies! How do I follow your story? Just want to save you from massive retyping. How long has it been for you since onset of myopathy?

[PMRpro Ambassador in reply to Leafsong66]

Go to her profile page and you can see all her posts - jusy tap/click on the avatar, name or image

[Twopies in reply to Leafsong66]

I would say at least over a year, if not longer. I always thought it was a flare and went up on the pred which did not help. I am one of those who lose weight, not gain, on pred; this has contributed to my muscles wasting away, in my opinion.

My physio gave me 2 little arm exercises and 2 little leg exercises—easy peasy (not really though, given my condition)—what I would call nursing home exercises (I saw my uncle do them when he was in one). I asked the physio if it would take 8 or more months to tell a difference; she said no, I will notice a difference in 8 weeks. And she pleaded with me not to overdo it—I overdid it and paid the penalty. Her schedule is: legs, rest a day, arms, rest a day, then legs, etc. so it’s every 4th day for the specific body part exercise which I thought was nutty. It’s been 6 weeks and I can tell a difference—not huge, just small, but a difference. I could not lift up a coffee pot, now it’s easier—still wobbly but not quite so, if that makes sense. Still sore in places where most people don’t have places—and I can’t walk far.

Sending you all the best wishes, wish I could be more help!

[PMRpro Ambassador in reply to Twopies]

What a good physio!!!!!

[Viveka]

So sorry to hear. You have been through the wars. Your previous good health and age will be a great help on your path back to health and wellbeing. Love to you.

[luv2read]

I thought the same thing as PMRpro, Actemra.

It breaks my heart to hear your story and realize how awful GCA can be. I have been praying everyday for you since your first post. I wish you success in your fight to get back to your old/(young) self. Continued prayers to you Leafsong66!