Prednisone roller coaster ride over...and stable.

[Grammy80]

I think it was Bette Davis that said, "Hang on, it's going to be a bumpy ride." or something like that. I take anticonvulsants though I've been seizure free for 48 years. Anticonvulsants and prednisone do not like each other....the prednisone waters down the anticonvulsant and your brain feels like it is being punched around. Some of the days are not clear memories. It is like combining vanilla and baking powders....foam and fuzzy!

Believe me, the health system in the UK is not the only one in trouble. My discharge here in the states was horrendous. My husband has started down the road of dementia, so I was doubly grateful for my daughter-in-law's presence. (I hope I've not posted this before). After deciding my insurance would no longer pay for my stay, and I had to go home, they dropped me from 100mg or 80mg IV to 30mg in tablets in one day with no tapering plan at all. The lack of knowledge or even awareness of GCA and how steroids work...was appalling. I got my 'steroid taper packet' a week after discharge. I'd taken the 30 and then went to 20mg per day...then went up to 30mg again when I got the tapering pack.

I had called my rheumatologist but he was reluctant to get involved in someone else's treatment...since it was steroids for asthma and not GCA. What I have learned from the forum over the last three years put me in a good place...I'd have been lost without the knowledge and help of this forum. I could tell the nurses you can't do this to someone on steroids....with authority...while they did it anyway. Thank goodness I had some at home and could taper sensibly.

Happy to say, I'm on 4mg; I know what day it is, and getting stronger and stronger. My lungs and head are clear, and I see my rheumatologist tomorrow.

My world is looking more familiar....and I'm so thankful for all of you! 💞xo

[DorsetLady PMRGCAuk volunteer]

Good to hear things are improving for you…take care 🌸

[Grammy80 in reply to DorsetLady]

Thanks so much...they are. I do wish I'd never given up my license and I may deal with that down the road. Believe it or not, you can drive a golf cart on the road here as long as you have signal lights and register it; no highway driving. I'm thinking about it~! I need more mobility and interaction with people! You are a real inspiration to me!💞

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

🌸

[123-go in reply to Grammy80]

You are an inspiration to us! Good luck and more power to your elbow 💪.

[montebello]

What an ordeal, but so glad you're back!!

[calicojoy41]

GOOD to hear of your adventures. I have been having some of my own. I am down to 5mg . Thanks to my actemra infusions. I fell after I had a procedure at my vascular surgeon office and they left me alone so I got off the table to get my dress on with my leg all bound up and down I went. I am now with a pain doctor as I really hurt my left leg from the hip on down. The constant pain is horrible. I am going to look into getting an attorney as my other doctors are appalled that I was left alone. Life is an adventure!

[HeronNS in reply to calicojoy41]

Good luck with that. It should never have happened to you. My father was left unattended after an operation on his brain (metastasized lung cancer) although a nurse was being paid to stay with him all the time. She left the guard rail down, he woke up and proceeded to get up and fall and break his hip, and, of course damage whatever should have been starting to heal in his brain. My stepmother sued and quite a long time later got a rather small settlement. This was in New Jersey, where the operation had taken place, although they didn't live there. Very specialized operation and his last chance at survival. He died perhaps a year later, before his 65th birthday. That last year really awful.

I really think in cases of negligence there needs to be some action taken. Even if the result seems like a slap on the wrist to the victim, it sends a very strong message to the person responsible and hopefully prevents similar mistakes.

[calicojoy41 in reply to HeronNS]

Thanks for your support.

[Purplecrow in reply to HeronNS]

just sending you a hug.💜💐💜

[Grammy80 in reply to calicojoy41]

I'm so sorry to hear that~! Someone really dropped the ball...and it wasn't you. I wish you luck and pain relief~!💞

[Longtimer]

What a battle.....well done...keep us posted.

[Bcol]

Hi Grammy, I think it sounds as if things are improving. Take care and you know we are always here. 🤗

[Luciejc]

Happy to hear you are out of the hoshospital and are doing well. Sadly, we have to advocate for ourselves instead of trusting the healthcare available. Keep up the good work!

[Hunter134]

That's awesome you did a great taper with the knowledge you gained in this forum.You re right though we d all be lost without the very smart people on here.So happy for you that you're doing so well ❤️

[Grammy80 in reply to Hunter134]

One of the most amazing things that happened to me was finding this forum...only a short while after GCA diagnosis. Another salute to the internet~!💞

[SheffieldJane]

you just keep on keeping on - marvellous example to us all! 💖

[Grammy80 in reply to SheffieldJane]

I think there is a lot of 'keeping on' going on here Jane~! 💞💞I see so much courage and toughness.....and soft loving support.....here~!

[Cobalt2sister]

Thank you for sharing. I'm thinking of you with healing thoughts and sending hugs. Do take good care.

[powerwalk]

Continued improvement Grammy. Hope the asthma stears clear. Xx good luck with rheumy.

[Jackoh]

You really are an inspiration to us all. So pleased things a lot smoother now. 💐

[Elispeth]

You have had to manage so much Grammy80! I hope that your appointment goes well with your Rheumatologist tomorrow and I hope that you continue to go from strength to strength 💐 x

[tempusfugi]

Some of this brought tears to my eyes😓 but in a nice way. You are, indeed, an inspiration Grammy80, as so many are on this forum. Like yourself, I am more than grateful I have found this family of soul mates. Hugely comforting.

Like yourself too, I am on anti-convulsants but have been told by two clinicians and a pharmacist that there are no contra-indications with Pred. Funny when Phenytoin (my anti-convulsant) is the first name that usually comes up when checking for contra-indications! Fortunately, when I mentioned this on the forum, PMRpro came up with a Drug Interaction Report which clearly states under Management:

'Patients should be closely monitored for clinical and laboratory evidence of reduced corticosteroid effects and changes in phenytoin concentrations during concomitant therapy. Some patients may require increased corticosteroid dosage'.

This may well explain why I am having difficulty tapering and needed a higher dosage than usual to start (25 mg).

Hope all goes/went well with your Rheumy, Grammy80, and that you continue to feel as well as you do.

[Grammy80 in reply to tempusfugi]

After my discharge, one of the home nurses told me not to take anti-convulsants and steroids simultaneously. Who knew? Nobody had ever told me that! So, I would take my Keppra in the am and set my phone alarm to take prednisone at noon. Since I've been back on 4mg for five days now, this morning I took them together for the first time. So far, so good!!

Who knows...? It has taken me three years to get to 4mg and this may have been a contributing factor. Please keep in touch! Prior to taking pred, I had been on a low-maintenance dose of Primidone for 45 years. After my GCA diagnosis, I started having auras...and told my neurologist, "I cannot have a seizure; my family will shelter me." Then I got IV Kepra and 2000mg a day...and it has worked. I wonder if anyone is researching GCA in the states?💞 Seems the UK has done the most from what I see. Be well~