Tomorrow I’ll have my hair done and go to the ENO as planned.
Then on the 22nd we’ll see if I am getting that referral to the pain clinic but Morphine?? That’s a spiral..Bea said acupuncture and infrared..
Did I do the right thing to put Newsnight on? 😃
Now that is painful!!
Nighty night and keep all those bugs away from
me 😉
Wishing you well xx
Fran
Response from Endocrinologist to RBH and results below:
«I understand your current difficulties to tolerate the decrease of Hydrocortisone to 20 + 15.
As expected unfortunately your cortisol level is undetectable in relation to your past “overdoses” of corticosteroid treatment responsible for an iatrogenic Cushing syndrome.
You are therefore in the same situation as patients with Cushing disease who presents this " drug withdrawal syndrome " with fibromuscular pain often disabling for a few weeks and improve over the weeks
A return to normal could be expected between 6 to 12 months depending on the initial impregnation.
I am well aware that these delays seem endless and that the return to prednisone could relieve your pain but at the risk of more insidious complications of excess cortisol.
The ideal would therefore be to be able to act on pain by non-steroids analgesic (to morphine if necessary or treatment of neurological pain (tricyclic), +/- sophrology.
It is probably better to consult a pain specialist to judge and adapt the best therapeutic combination
My answer is probably not satisfactory but I have no other.
Best regards»
From RBH:
«The cortisol result from this morning is 19 nmol/L (from your attachment, it seems that previous measurements were lower, i.e. 13 and 17).
19 nmol/L is still very low but you are taking hydrocortisone so you are getting replacement therapy.
Bit concerned about you being 'impregnated' my happy friend.they do have a wonderful way with words lol.Maybe treating the pain is more realistic than masking it with meds that appear to do even more damage?Only you can be the judge on that one however with careful prescription i don't think the use of morphine should be considered the course of a downward spiral and may indeed give your more stamina and capacity to enjoy life and continue those exercises we know we all need to do to stay alive.
Love Ski's and Scruff's
P.s Emily from newsnight says thank you for watching. xx
At moments like this, I have to remind myself how much worse things could be. At hospital there is always someone who is so much more worse off, especially young children. When I visit Oncology and see kids without any body hair and pushing a drip trolley, my own fears melt away into a deep sadness, forgetting my own plight.
I feel the same 2g's, last Month at The Transplant Unit , I got talking to a young girl, I knew she had CF, living with it since the age of 3, Now at 23 needing a Double Lung Transplant. I hope by my "Coming Off" The List, Someone like her will receive the Lungs I won't have. xxx
Can't pretend to understand all that, except that you are in pain and it has been caused by meds? Do feel for you and hope they are giving you the best treatment and advice poss,ible.
HAir - I'm frightened to look in the mirror! Men have it easy, don't they!
Exactly Iris, a doctor put me on daily steroids a year and a half ago then I got immunodeficient now my adrenal glands don’t work anymore, so a specialist changed me to another type of steroids not so dangerous ones and they said the pains I have are caused by withdrawal symptoms.
Now they want me to attend a pain clinic to get some more meds to deal with it. It will take about a year to get back to normal..
Its all Swings and roundabouts isn't! Gain a bit here, lose a bit there. Attending anywhere isn't easy if you're not well. Seems the doctors know the downsides of some medications, but just hope you will be lucky. Good luck, and love Iris x
Yes that’s it Iris. It needs courage yes when you don’t know the hospital and who you are going to see etc but it went well. We’ll see next Tuesday now I had those blood tests and they all seem to have contacted each other.
So much faster by email nowadays.
I even got an email from the LAM specialist in Lyons Hospital at 11pm telling me courage, you will be better with the new treatment in the long run, be patient!!
I was stunned!! But we are so few women with this LAM degenerative disease I suppose they feel more implicated. I think it must be vocational, it needs guts I don’t have.
Anyway his kindness brought tears to my eyes and I felt reassured.
So I have met people with humane qualities in strange circumstances, I am grateful for that.
I’m sorry you had a tiring and difficult day, I hope you have sufficient pain relief , to help you. Your situation is complex and all this medication over the years hasn’t helped. Indeed my lung man says I might be on Prednisolone for life, which does concern me greatly. Please enjoy your pampering with the hairdo and the concert. Keep warm . Try and have some rest before you hit the West End. X 💐
I hope someone can help you soon with pain relief. I don't know anything about morphine, except that some find it helpful. You must be in charge, though, and only accept what you're happy with. xx Moy PS fell asleep in Newsnight - sick of Brexit now!
Oh my golly gosh,it's all so much to read and totally understand if there is actually anything you haven't already been prescribed....apart from morphine. I understand your frustration and reluctance to start that medication. I suppose you have to decide if trying to "manage" your pain with proper guidance is better than the morphine option. You've been through so much,just stay as strong willed as ever and I'm certain you'll make the right decision.
It looks like coming off the steroids is helping you, but not with the pain. I haven't a clue about morphine, but if it helps when the pain is really bad , might be worth looking into. I really feel for you, hope you manage to find a happy solution. Take care Fran x x
Yes Shirley you are right it will help me in the long run to quit steroids if I do but he said changing from Pred for Hydrocortisone was already better even if they couldn’t get me off..
I will need to look at pain killers yes..
Not looking forward to that..more medicines you know..still it depends how much pain I can take, if it gets worse or not..today was a relatively good day..incredible what the body gets used to..
Hi Fran, what a trip eh! Wait until you have discussed this with the pain doctor until you decide what to take, they may have a further solution. All these types of meds seem to have a dependancy that is difficult to break away from and seem to take months to get over. In the meantime enjoy the haidressers and your night out xx
Thank you Irene. Yes you are right, it just came as a bit of a shock..Bea said if they had told you about it before they changed your meds you wouldn’t have done it! 😃 Still I like to be told! I specifically asked the Endocrinologist at the time if there would be any problems and he said no. Also it worried me I didn’t know what it was for sure.
Really tricky one, Fran. Not easy to deal with. So sorry. Scylla and Charybdis. (Don’t ask, skischool . Scruffs will tell you the story. Lost in the mists of Greek classical tales....)
Well Kate I will deal with it one day at a time I suppose..from bad to worse hey..well let’s hope I get through those 12 months without losing too many feathers 😃
Sorry to hear that you're in so much pain Hidden ! Sometimes it really does feel like it's pouring but hopefully there'll be that rainbow visible soon. Stay positive and all the very best going forwards.
It all sounds so complicated dear Fran, and so often the medicine given for one problem causes another, and so the Merry-go-round continues. Don’t overlook the morphine entirely though, but do talk it over thoroughly with the prescribing doctor. A very small dose can work wonders. Meanwhile enjoy the rest of your time in London. All the best xxx
Hello at last, Fran. It seems to me that overall you’re moving slowly forward towards improvement. It’s a case of sticking out the awful pain side effects, and you now have good consultants on your side.
It will be good to listen to the pain specialists and ask questions too. You don’t have to take their advice of course. If your pains are severe, then any opiate medication taken occasionally might be helpful. I think ‘occasionally ‘ should be your watch word, as far as I know anything about opiate pain killers. Don’t sack at it like I did with the codeine....though in my defence, dental pain is very hard to deal with.
I really don’t think it’s a sign of the end in your situation. You’ve been advised that you might be through the pain in six months to a year. Very careful use of a low dose, occasionally, may just help you through.
But maybe there are other more modern painkillers available??
Anyway, I’ll go now....sleep time again! 😴
I hope you’re having a more comfortable day today, with a smart hairdo and an exciting time out in London. Let the RBH do its stuff for you..,,sounds like clear explanations and sensible advice so far. Don’t take any more steroids!!!
Night night for now 💕 Enjoy your weekend, my friend. Football ⚽️ ??
How are you? How are your teeth and how is your asthma in the cold weather?
Steroids are for life...you can’t stop like that with secondary adrenal glands insufficiency even if they caused the problem in the first place they are now saving my life by replacing the cortisol I am not producing anymore.
But Hydrocortisone is less lethal than Pred. So that is the journey I embarked on!
Now tapering down from a high dosage to a biological one will take over a year I think.
20mg of Hydrocortisone is equivalent to 5mg of Pred, and I was taking 40mg a day to make up of my 10mg of Pred a day for a month and I reduced by 5mg of Hydrocortisone as instructed so I suppose I am on 8+mg of Pred now.
Losing that 5mg strangely enough upset my whole system and needs some getting used to. They haven’t mentioned anymore about tapering down for now, my prescription is for a year.
I went to RBH for my lungs, that lingering bronchitis and found myself with a whole new set of problems so the Lung Consultant will refer me to whoever can help me if needed. I got his report and he said there were « a small number of important inter-related issues».
I’ll see what he says on Tuesday.
Yes I am trying to combine some outings with medical appointments 😃 it’s good that way.
My bus is direct to the West End and once I am sitting down I’m ok, getting up is a different matter 😂 especially if the bus driver is in a hurry!
So yesterday I had got a senior ticket to see Manon at the ENO, such grace, music and beauty makes you forget your aches and pains..
I have some more matches booked yes, an FA cup against Sheffield next.
Good morning, Fran 🌥☁️ (We had a snow flurry here yesterday ❄️! Never seen from our new house before....pretty)
I’m ok thanks, tooth problem finally settled, see dentist again in March....that was a big hill to climb, seemed to effect everything else 😨 though your meditation sentences were very helpful ......YES you are kind 🥰.
My asthma has settled since the side effects of full time codeine finally wore off, though still going through fatigue....but that might be my Mum and the babysitting!! 😰 I seem to loose sight of any pleasure included when I’m so tired! And Molly seems to have hit the terrible twos early 😂🤣
I’m getting in a muddle, I think, about your steroids.....thought you’d fully transferred to hydrocortisone?? 🤔
So glad you’re fitting in some fun in London. The ballets sound absolutely gorgeous, especially when quiet watching serenely!
Your account of getting off the London buses sounds so familiar....choosing your moment to venture from your seat....before the driver takes off again!! Ha! I used to travel to London regularly as part of my work, and felt that feeling OFTEN!
When my arthritis was bad And I was taking painkillers, I said to the doctor who was taking my blood pressure, do painkillers put the blood pressure up and she said no, but pain does.
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xx
MRI scan
Just in case !!!!!!!
To Morph or not to Morph ?
Zip it!
