Anybody has adrenal glands insufficiency and went from
Prednisone to Hydrocortisone?
I have more energy for sure but I am ridden with aches and pains as I used to be before I started on Prednisone in September 2017.
LAM specialist wanted me off Prednisone because it is worse for my immune system and LAM isn’t an inflammatory disease so he explained.
So I was referred to the endocrinologist at the rare disease centre in Lyons Hospital. I’m in my second week of Hydrocortisone 40mg and I’m having to take paracetamol if I want to walk and function..Next week I’m supposed to go down to 30mg. Of course everybody is on holiday etc..
You are kind Kate..😊 Not a big deal..It’s finding the right med, the right dosage I think. I understand the LAM specialist got me to change because of all those chest infections and side effects I was getting on Prednisone..I’ll get advice when I get back to England I think.
I’m not that strong 😃 just had a hot shower and self-massaged with my almond oil and essential oils mix. That helped. You just have to keep going haven’t you?
Dear Fran,what a nuisance your LAM is,in top of everything else. I seem to remember a time when I was at the Royal Brompton Hospital,as they had a suspicion that I may have COPD with underlying LAM.....just how hard it can be to get the meds right etc. Steroids are like you say, a double edged sword but Hydrocortisone is also difficult for some patients. I was found to not have LAM but I can understand your frustrations. You talk of waiting to see the Doctor's when you return to the UK which I hope will be of some benefit.
So here's to wishing you and your loved ones a very happy New Year🍹🍷🍸
Hi Fran, I’m trying to get off my pred too, alternating between 5mg and 2.5 mg (because I have polyps in nose it keeps it at bay) so that’s a pain as then cannot clear nose, so then it goes on chest, plus I’m hoping to have the new hip soon! Still no date but hopefully in the next couple of months. Walking is a nightmare, on paracetamol for pain, as if I take Tramadol I’m falling asleep all the time, so stopped it! I am not as full of energy as I was, been on Pred the same time as you. Plus Azithromycin 1 x 3 days per week tokeep chest clear! Hope you get your situation sorted soon.
“Prednisone and prednisolone have more similarities than differences. The biggest differences between these drugs are the other drugs they interact with. Give your doctor a complete list of the drugs and supplements that you take. This may be some of the best information you can give to your doctor to help them decide between these two drugs for treating your illness”
I take prednisolone 5 mg every day for my COPD. Wary of the bad press it gets I have tried many times to reduce it but I soon start to feel very ill.
My consultant said the daily dose is roughly the same amount of steroid that your body should produce normally so I now just take it.
Since being on it I have not had an exacerbation for over a year and have not needed my rescue antibiotics at all during that time.
Only obvious side effects is that my skin is thinning and I have nasty bruising if I knock myself. I’m 74.
HinFran, sounds like the hydrocortisone are giving you the energy but the lack of predisone are making you too achy to enjoy, what a shame. From what I have read you should come of steroids very slowly so that you dont have these problems. I do hope you find the solution. Wish you all the very best for 2019 xx
Exactly. Thank you Irene. Steroids are not recommended for LAM but it may be too late for me as my adrenal glands are suppressed. Talking to Lammies I have decided to see a rheumatologist to help with the pain.
I didn't reply as I don't have any answers or advice but I just want to wish you well and hope this won't make your traveling more difficult than it already is (even without a cat)
😃 don’t worry HHp. I wrote an email to the consultant with the lot of them in copy. They are all on holiday I expect. I’ll carry on as I am for now until I get to England, coffee and paracetamol seems to keep me walking 😉
They probably are all on holiday, it seems more and more people are taking the whole festive season off work. Which is crazy when for most of us life still goes on. Keep going with the coffee ☕
I have adrenal insufficiency, I was put on a dose of just 5mg pred every morning. I swapped to hydro as I wanted to try to "wake up" my glands, I was on 10mg am, 5mg lunchtime, 5mg evening. I reduced my am dose to 7.5mg and am attending the endocrine clinic at Addenbrookes 4th January for a check up. I have always had chronic pain with pred or with hydro, sorry for the problems you have.
I have an appointment with the endocrine dept at Addenbrooks on the 4th January. I will have to await the results of a half synacthen test until then and what they propose for me next. Staying on pred makes improving less possible and hydro with it's three doses gives the best chance and also mirrors the bodies release of steroids throughout the day. I will post my results but if I don't by soon after the 4th please post to remind me.
I was on 10mg of Prednisone minimum for 16 months..now I have been on 40mg of Hydro (20mg am and 2pm) for 2 weeks and I have reduced by 5mg today at 2 pm for another 2 weeks. I was supposed to reduce by 10mg at 2 pm.
Actually my LAM consultant just wrote to me and told me to take it easier, and reduced slowly.
I am supposed to have a first cortisol blood test in 2 weeks and then in 3 months.
Then the endocrinologist will tell me if he thinks there is hope or not.
Hi, I had my appointment and my body has started to recover, my Hydrocortisone dose was reduced to 5mg in the morning and 5mg at lunchtime. I am returning in 6 months for another half synacthen test and then about a month later will see the consultant again, there is a possibility that I will no longer have adrenal insufficiency and not be steroid dependent. I will post the results but may need my memory jogged, I have had multiple lacunar infarcts so have memory problems. I think the answer is to take it slowly reducing the dose and hopefully you will have the same result as myself, post how you get on.
Yes you must keep going 😃..sleeping in a good bed is nice, makes a change from the sofa 😉
having proper porridge in the morning is lovely, reading the papers with my coffee, meeting family, friends and colleagues for lunch or coffee, went to see Swan Lake today at the ENO, that was a treat. I am in bed, legs up, essential oils etc by 7pm!
Feliz Ano Nuevo Carino. pasar bien sin Problemas de Costipado. I know , I have probably typed it wrong Fran, as it isn't a Cold, But hope you get things Sorted and sail into 2019 feeling somewhat Better. Also, Happy New Year to your Mum, Bea & Aria. Abrazos Grande y Besitos Mucho. xxxxxx
I am so sorry to read how your feeling dear Fran ,I really wish 🌟 I could help you ,one thing I can do is pray 🙏 for you ,and of course for everyone else who are suffering .
I hope and pray 🙏 that the Endocrinology will tell you there is hope, please Fran keep us posted.
Oh thank you my dear Susan you are very kind but don’t worry 🤗
The Endocrinologist sent me an email saying that it is the change of molecule and tapering down from prednisone to hydrocortisone, which is weaker, that it gives withdrawal symptoms, muscular and joint pain and general discomfort and I have to put up with it and not increase the dosage..
So I am going to London tomorrow for a while, I will start acupuncture again I think.
Maybe see the rhumatologist as well if I can get an appointment but do I want more medication to deal with medication?
Anyway how are you? Did you go home for Christmas?
Oh no ,so I guess your always in pain ,I don't have much faith in doctors anymore.
Are you traveling with the train ,?
I didn't go home for Christmas as I have been invited to two weddings this year but it all depends on my health,so far so good ,I have to see the lung specialist this month .
How long will it take to London Fran ?are you traveling alone ?
Please take care and let me know when you arrive.
I am not looking forward going to the lung specialist as the last one was from Greece,I couldn't understand him ,all he did was stare at me ,I told the nurse I couldn't understand him and he didn't speak much ,she said he's always like that ,so when I saw my GP ,I said to him I wasn't expecting to see him I wanted to see the German specialist,my GP said to me I had a right to see the German specialist, which I didn't know what rights I had ,so hopefully I shall see the German specialist as he is straight to the point which I like.
Enjoy your 🚆 train journey , stay calm ,I shall be thinking of you dear Fran 💕🦋💕
It takes the day really..yes alone but I can manage it..there is always someone helping me to put the suitcase in the carriage.
I’ll take a taxi across Paris from one station to the other and one when I get to St Pancras. I promise I will write when I’m in and made a cup of tea 😊
I am calm don’t worry I have a good book and a bag of snacks!! 😃
Honestly awful to see someone who didn’t speak English. It happened to me once he was a locum I think. And the report came back full of spelling and syntax mistakes, it was unreadable.
Hope you get to see the German specialist next time.
Hola Carino. Dear Fran, You have made it, Your a Real Globetrotter, You must be worn out by Now.. Have a Good Rest and See Beautiful London First. Wishing everything goes well for you. Abrazos y Besitos pasar el tiempo Tranquilo . xxxxx
Sleep well Dear Fran. Good Night. Sweet Dreams xxxx
Hi Fran. I haven't yet read this whole thread, but yes I'm in the same boat with adrenal insufficiency. When first dx'd I started on 30mg hydrocortisone and then gradually reduced it in an attempt to wake up my adrenal glands. Needless to say it didn't work and I just felt terrible. I'm now settled on 15mg h/c per day, ie 10 + 5. I know the ideal is 3 x daily but I always forget! This year though, I've been on 50mg pred several times, reducing by 5mg every 5 days, and as you say walking is nigh on impossible as muscles are so weak. When severe, I think it's called steroid myopathy? I'm using 0.5kg weights to try and rebuild muscle mass but it's a slow process
Let me know how you get on x
• in reply to
Thank you for the info Hanne.
Ah so they let you get back on Pred while you were on Hydro?
I am glad you are now settled. You have done well It gives me hope.
It is painful all over but my legs and knees are killing me when I need to get up from a chair for example.
I was on 8mg of Pred before I went on 40mg of hydro for now and I was only told to take 20mg x2 a day. I supposed because sleep is already difficult..
After 2 weeks I was supposed to go down to 20mg am and 10mg afternoon. Because of the pains, the endocrinologist wrote to me to take it easier. To go down a landing only when I am used to it, then to do 25mg am and 10mg in the afternoon when I am ready. So little by little I supposed.
My whole day train journey was stressful yesterday from Geneva to Paris to London but I didn’t increase further. I had a hot shower and took paracetamol instead and today I will look for an acupuncturist and a physiotherapist in the area 😃!!
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Thinking of our dear Hacienda today 💐
