Tapering, back-update etc.: I have two pieces is... - PMRGCAuk

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Tapering, back-update etc.

Grammy80 profile image
Grammy80
β€’85 Replies

I have two pieces is that I've continued tapering and am down to 9 mg per day with no serious issues other than floor scraping exhaustion...I've got sleeping mastered. I've been under added stress also. On May 5, I will have a nerve ablation in my back, and from the diagnostic procedures I've already had, I expect good results. The anesthesiologist zeroed in on the problem area two weeks ago, and the pain was gone for about a week and still isn't too bad; I can stand for 20-25 minutes.

My thoughts are preoccupied; my 61-year-old son has open-heart surgery on May 6. Thankfully, he was being monitored for a lung infection when they found an ascending aortic aneurysm that doubled in size in six months. His most recent scan a week ago revealed this. They'll be replacing the valve to the heart as well. My gratitude is the surgery will be done in Chicago at Northwestern University Hospital. My son weighs at least 300 pounds (21.4 stone) and that is such an added worry.

Please keep him in your thoughts.... Hope I'm not 'off piste' but you are my second family.πŸ’•πŸ™πŸ»

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Grammy80 profile image
Grammy80
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85 Replies
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Evercurious profile image
Evercurious

Good luck, Grammy80. Huge obstacles to overcome, but your attitude is so positive!

Grammy80 profile image
Grammy80β€’ in reply toEvercurious

πŸ’žπŸ’žThank you......

calicojoy41 profile image
calicojoy41

Good to hear from you. Praying for your son and our 59 year old son. He is being treated by the VA hospital for his bipolar brought on by his tour of duty as a flight nurse in the Air Force. I have a new doctor to help me with my taper, I am at 14 mg now and so the work begins once again. My number 81 is coming up May 10!! We both have to hang in there!!

Grammy80 profile image
Grammy80β€’ in reply tocalicojoy41

Thanks so much and prayers for your son...never stop being Mom. Fourteen is a good number and you know you are 'never alone' on the journey.πŸ’•πŸ’•

Knip profile image
Knipβ€’ in reply tocalicojoy41

My heart goes out to you and to your son, Calicojoy. Having had a son in the RAF serving in Afghanistan during the war out there, I can imagine some of the horrors that your son will have seen and have been treating. May God bless you both and bring healing and wholeness. β€οΈπŸ™

pomeranion profile image
pomeranionβ€’ in reply tocalicojoy41

My son is being treated at the VA hospital also. He is bi-polar. He served in Iraq. He has trouble with drug withdrawal. Tried to commit suicide and was rescued with our two dogs some years ago. Ongoing treatment. Unresolved. Thank God for the VA. Good luck to your son.

calicojoy41 profile image
calicojoy41β€’ in reply topomeranion

Pray for our sons. PTSD was the trigger. Phil flew the wounded out of Desert Storm and Afghanistan, the Gulf wars. Long flights to Germany and then on home to USA. This Bipolar is horrible, it triggered my PMR , we chased him around for one year. Let's hope we all HEAL, so this stress will be out of our lives. Take care.

Knip profile image
Knipβ€’ in reply tocalicojoy41

In Jesus' name, Amen.

SheffieldJane profile image
SheffieldJane

I am glad to hear that you are doing steadily well. Then along comes life. Sending you love, blessings and prayers for your dear boy. I am glad that he is in skilled hands and may he sail through this and recover well. After all, he is a chip off a pretty strong block in his mum, that is a great start. Keep us posted about him. Oh sweetie, take care! πŸ’–πŸŒ·πŸ’–

Grammy80 profile image
Grammy80β€’ in reply toSheffieldJane

Thanks so much, Jane. My own journey pales compared to his...xoπŸ’•

Bcol profile image
Bcol

Hi Grammy glad that things seem to progressing onwards well and all the best wishes for your son who will be in my thoughts on the 6th.

Grammy80 profile image
Grammy80β€’ in reply toBcol

πŸ’•πŸ’•I draw strength from all of you!

Bcol profile image
Bcolβ€’ in reply toGrammy80

I think we can all agree with that Grammy πŸ™‚πŸ™‚

Kendrew profile image
Kendrew

You and your son our both in my thoughts Grammy.Your strength and resilience are always an inspiration to us all.

Sending much love. ❀

Grammy80 profile image
Grammy80β€’ in reply toKendrew

I saw him today, his spirit is good but I also see his anxiety. Thanks so much KendrewπŸ’•

Knip profile image
Knipβ€’ in reply toGrammy80

A mother always sees, and feels, her child's pain, no matter how well it is hidden. xx

Grammy80 profile image
Grammy80β€’ in reply toKnip

So true....thanksπŸ’•

123-go profile image
123-go

Hi, Grammy. I'm sorry to hear that you are under a lot of stress right now. It's horrible when those unwanted thoughts keep going round and round in your head. It's not long now until your ablation and that will be one thing thing out of the way. I have to say that your son appears to be in very good hands: everyone involved in his care will be doing the very best for him.

I wish you both well and look forward to hearing positive news.

Love from one of the family πŸ™‚ πŸ’πŸ™

Grammy80 profile image
Grammy80β€’ in reply to123-go

My heartfelt thanks...πŸ’•

PMRpro profile image
PMRproAmbassador

Of course not off-piste - stress affects our PMR/GCA, so anything stressful is relevant. Probably difficult to find a better place for that sort of fun ...

Grammy80 profile image
Grammy80β€’ in reply toPMRpro

Isn't that the truth. I wish I could be him on May 6. xoπŸ’•

Constance13 profile image
Constance13β€’ in reply toGrammy80

He knows you are with him, Grammy. He will also be thinking of you too. Bad enough to suffer, worse if your son is suffering more!!! πŸ’ πŸ€πŸ€πŸ€

Grammy80 profile image
Grammy80β€’ in reply toConstance13

....from the heart....thank you Constance.πŸ’•πŸ’•

Nextoneplease profile image
Nextoneplease

Hi Grammy 😊

I’m so glad to hear your own health is progressing well.

I understand how you must feel about your son, it seems like he’s in good hands though. And I don’t know whether this helps - but I’ve had open heart surgery myself so I know how it feels. To be honest I think I had such good care, my family at home probably suffered at least as much as I did….

Anyway wishing you all the best. Your boy will be in my thoughts on 6th. Take care dear Grammy xx

Grammy80 profile image
Grammy80β€’ in reply toNextoneplease

It does help and thanksπŸ’•πŸ’•

Blackcatlover profile image
Blackcatlover

Sending prayers and strength.❀️

Grammy80 profile image
Grammy80β€’ in reply toBlackcatlover

Thanks so much....πŸ’•

HeronNS profile image
HeronNS

Best wishes to both you and your son for good outcomes from the various procedures. πŸ’

Grammy80 profile image
Grammy80β€’ in reply toHeronNS

Thanks so much, this 'family' has kept me upright through a lot. πŸ’•πŸ’•

HeronNS profile image
HeronNSβ€’ in reply toGrammy80

That is helpful!

Hunter134 profile image
Hunter134

Oh dear you ve got alot going on.I will pray for you and your son that all goes well.Its very frightening when it's our child.My daughter had two transplants and I was never so scared in my life.Hugs to youπŸ’–πŸ’•

Grammy80 profile image
Grammy80β€’ in reply toHunter134

Once a mom....always a mom. I'm happy your daughter is doing well...that's me...scared. I have a lot of faith...but I wish it could be me. πŸ’•

Hunter134 profile image
Hunter134β€’ in reply toGrammy80

Your boy will be fine cause you are very strong and iam betting he is too!!!We ll be praying for him for sure❀️

Grammy80 profile image
Grammy80β€’ in reply toHunter134

Thanks Hunter, he is putting up a strong, but silent, front. Thanks so muchπŸ’žπŸ’•

MamaBeagle profile image
MamaBeagle

Thinking of you Grammy. πŸ’•

LCfan profile image
LCfan

Wishing that all goes well for your son, and for you too

Grammy80 profile image
Grammy80β€’ in reply toLCfan

My thanks πŸ’•

Lollybygolly profile image
Lollybygolly

Well done for tapering to 9mgs of pred... however that doesn’t seem to help you to walk.. is it possible you’re on too low a dose to function satisfactorily. I’m no expert but quality of life is a reasonable expectation I hope. Prayers and blessings are sent for your son - thank goodness they found the problem in time! I wish him a successful procedure and happy outcome. He’s relatively young for this so hopefully robust and positive. Life is sweet and he deserves more of it.

Grammy80 profile image
Grammy80β€’ in reply toLollybygolly

Thanks, Lolly, so much. I have neuropathy, hip replacement and revision, left, rod in lower right leg and fused ankle. I'm happy getting from point A to B...my graceful days are over. I'm still walking and I'll be hell on wheels if I ever have to have a chair!!!Thanks for the beautiful thoughts about my sonπŸ™πŸ»πŸ’•

seamaid profile image
seamaid

sending thoughts ,prayers and love x

Grammy80 profile image
Grammy80β€’ in reply toseamaid

I'll take them all and pass them on....thank you.πŸ’•πŸ™πŸ»

Knip profile image
Knip

It sounds strange, Grammy, but as I see it the lung infection was, in a way, a miracle, leading to the discovery of the anuerysm. I will be thinking of you and your son . With love and prayer, πŸ™β€οΈ

Grammy80 profile image
Grammy80β€’ in reply toKnip

I see it the same way....we never know...if he hadn't been monitored...surely he would have had no chance in another six months. I'm thankful~πŸ’•πŸ’•!!!

BarachoisBay profile image
BarachoisBay

Hope all goes well for both of youπŸ’•

Grammy80 profile image
Grammy80β€’ in reply toBarachoisBay

πŸ’•Thank for positive thoughts....

TheMoaningViolet profile image
TheMoaningViolet

That is a lot to deal with. Best wishes to both of you. Vx

Cobalt2sister profile image
Cobalt2sister

Dear grammy, am praying for you both and sending love. Yes, this is indeed your second family and we are all holding you close.

Grammy80 profile image
Grammy80β€’ in reply toCobalt2sister

So well said...thanks and I feel it. I'm overwhelmed with the warmth. I shouldn't be, I know how incredible this group is and I appreciate it more than you know. I'm scared and praying!xoπŸ’•πŸ’•

AshPen9 profile image
AshPen9

Lots of good wishes and positive thoughts coming your way, Grammy80.

Grammy80 profile image
Grammy80β€’ in reply toAshPen9

My thanks....πŸ’•πŸ’•

Nightingales profile image
Nightingales

Very best wishes for you and a good outcome for your son. The worry is probably partly responsible for your fatigue. I know when I am worried about my children I feel it it every cell of my body.

Grammy80 profile image
Grammy80β€’ in reply toNightingales

True, but how can we not...just trying to keep the faith and keep control. πŸ’•πŸ’•

Ana-16 profile image
Ana-16

Very best wishes. Stay strong

Grammy80 profile image
Grammy80β€’ in reply toAna-16

Thanks so much....πŸ’•

Grammy, yes, thoughts and a prayer for your son. It is so difficult when our children are going through serious events. πŸ€—. Ann

Grammy80 profile image
Grammy80β€’ in reply to

Yes, it is the worst. I call what I feel daily, just pain. When a loved one is in trouble medically or in an accident....that is suffering in my book. xoπŸ’•πŸ’•

β€’ in reply toGrammy80

And we are helpless.

Broseley profile image
Broseley

Offering you my thoughts and prayers too Grammy80, I'm sure things will be fine. Please don't worry, it only brings on stress and doesn't help at all, though I know it's difficult not to.

Grammy80 profile image
Grammy80β€’ in reply toBroseley

Thanks so muchπŸ™πŸ»πŸ™πŸ»

Telian profile image
Telian

You seem to be heading in the right direction Grammy. Let us know how the back ablation goes. My OH should be having that but can’t due to his heart condition. Such a worrying time for you with your son. We will certainly be thinking about you both. Seems like a blessing in disguise he was being monitored for something else. Again we will all be waiting to hear how he gets on.Take care 🌺

Grammy80 profile image
Grammy80β€’ in reply toTelian

It was indeed a blessing, when they first found it, they said it would be fine for years. It grew to a surgical need in one year! So thankfulπŸ’•πŸ’•

Telian profile image
Telianβ€’ in reply toGrammy80

Someone was looking over him. 🌺

91066Jackson profile image
91066Jackson

Healing wishes to you and your son, Grammy. Hope all is well.

Grammy80 profile image
Grammy80β€’ in reply to91066Jackson

I'll send them on to my son, thank youπŸ’•

Carathedog profile image
Carathedog

Sending love and best wishes from Bonnie Scotland 🏴󠁧󠁒󠁳󠁣󠁴󠁿

Grammy80 profile image
Grammy80β€’ in reply toCarathedog

πŸ’•Thanks so much

Spirograph profile image
Spirograph

All the β€˜bestest’ of wishes to you and yours from Aberdeenshire. πŸ™‚

Grammy80 profile image
Grammy80β€’ in reply toSpirograph

Thank you...πŸ’•

tytto profile image
tytto

With thoughtful prayers to Grammy and each of us "older" parents that are suffering with our children/grandchildren. I am 86: my son age 57 had a heart attack 2 months ago: he is doing well in rehab now. oldest daughter age 64 has bone metastasis from breast cancer. I am doing quite well except for balance and problems with walking. see the rheumy in 2 weeks: currently on 6 or 7 mg pred daily. tapered from 20 mg 3 years ago.TRY to smile each day!

Grammy80 profile image
Grammy80β€’ in reply totytto

Bless you....prayers for your son and daughter. Sounds like you have a great attitude and are strong...I'm tapering slowly as you are. The heart gets heavy...but we keep going forward and you just cannot beat this wonderful~~ incredible caring forum~!!πŸ’žβœ¨πŸ’•

tytto profile image
tytto

Thank You very much: I am not as strong as I would like to be: take one day at a time -----

Grammy80 profile image
Grammy80β€’ in reply totytto

I understand, sometimes when I'm working extremely hard to be strong...it is because I'm not sure I could deal with it....if I didn't keep my armour on. xoπŸ’•

Sharitone profile image
Sharitone

May both you and your son be blessed on Friday.❀️

Grammy80 profile image
Grammy80β€’ in reply toSharitone

Thank you so much.....πŸ’•

Sharitone profile image
Sharitone

Today's the day! Thinking of you both.πŸ™β€οΈ

Thinking of you today and saying a prayer ❀️

Nextoneplease profile image
Nextoneplease

Thinking of you today Grammy xx

cycli profile image
cycli

So sorry I missed this Grammy80. My, don't you have a big family here. I'm happy that you are doing ok. yourself and hope your son comes through well. It is good that he was being monitored and they found the aneurism. Sending my best wishes.

Hunter134 profile image
Hunter134

Sending love and prayers to you and your sonπŸ’•Hope it all goes well!!!!

MrsNails profile image
MrsNails

Sending Love & Best Wishes to you & your Son for his surgery & your procedure πŸ™πŸΌ

Grammy80 profile image
Grammy80β€’ in reply toMrsNails

πŸ’•πŸ’•xo

PMRpro profile image
PMRproAmbassador

Hugs to you both xxxx

Grammy80 profile image
Grammy80

πŸ’•πŸ’•xo

bonio profile image
bonio

Oh good luck Grammy80 and all the best for your son sounds like he is in very good hands. πŸ€—

Grammy80 profile image
Grammy80β€’ in reply tobonio

Thanks, he is now in ICU and headed in the right directionπŸ’•

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