So I got my new medication today and I start on 20mg tomorrow, not sure start is the right word as that’s the dose I’ve been told to take for how long I don’t know. Got my appointment for an Adrenal test on the 18th December has to be a months time but no earlier. I was told on the phone i would be at the hospital from 8.30 in the morning until 6 at night, a long day. Goodness knows what they are going to do in that time I thought it would be about 2hours can’t say I’m looking forward to it as I don’t do days out very well, a morning out is as much as I can handle now. She did ask if I needed any special requirements like a recliner or a bed I could have it so I opted for a bed that eases the blow. I’m really quite scared to take my new meds as I don’t know how I’m going to feel but knowing my reputation not very well. This whole 4-6 hour, three times a day taking it seems to be an important factor especially as my waking in the morning is erratic it’s going to take some doing. Not had a good week so it can’t make me worse I guess. So my journey continues.
Tomorrow - my first day on Hydrocortisone - PMRGCAuk
Tomorrow - my first day on Hydrocortisone
I think your opting for a bed is a good idea. I have not had the adrenal test yet so can’t share about that. What medication is the 20 mgs for tomorrow?
You are in my prayers.
Changing from prednisolone to hydrocortisone. Thank you very much
It is far weaker than Pred and will show that your PMR is in remission, because it doesn’t do much for PMR pains.. You must double check your advice. I was going to be dropping Hydrocortisone at 5 mgs a time. Also you may be advised not to take it before your day in the hospital. Take magazines or knitting or whatever passes the time for you. Enforced bed rest sounds blissful. I imagine that they will put a stent in your arm ( so there is only one prick) and take regular bloods after giving you the stimulant. They told me that I might feel sick, I didn’t. Take your phone or iPad and let us know how it’s going if you like.
I wouldn’t be nervous of Hydrocortisone, it is much more similar to what our bodies produce than Prednisalone, so is taking it 3 times a day more natural than one big dose. Your mornings maybe difficult because of Pred. who knows?
Good luck, I hope it’s normal, and let us know how you get on. 🍀
Lead to believe it’s the equivalent of what I was taking but it’s more vital to take at strict times. Not going to know until I’ve had it for a few days. Haven’t had a great few days leading up to the start of it felt like a cold coming but it’s not come out just a sore chest and below par.
I will take enough to occupy me hopefully I can go for a wander the nurse did say I could go down to the cafe my husband is going to be there too for some of the time if not all depending if his Sister can have our dog for the day.
I just want to know if my function is on the mend. Thank you SheffieldJane hope you are keeping well as possible
Yes I was told it was equivalent to the dose I was on too. I just meant you would be taking a little 3 x a day.
I really hope your function is on the mend. Mine was normal with a second Synacthen Test, time and less Pred.
Thanks SheffieldJane me too. I’ve never had the energy like some in fact my Mum says I was born tired, she’s not wrong there, but I’d like to get through a day now and again where I don’t crash. It’s okay at home where you can rest but it’s hard to put on a brave face when you are out and about. As you say time!
If the dose is enough and you stick to the times it may well work for PMR - Megams uses it. the halflife and anti-inflammatory effect are shorter so it means 3x daily dosing - far less convenient than 1x daily pred which is why it is used.
Yes I have other meds three times a day but they are not so strict. It’s getting into a routine and also making sure to take some with me if I go out.
I have a dosette box with 4 compartments which I load every evening and don't leave the house without it in my bag. I have to take stuff 5 times a day as two of the drugs must be taken 2 hours apart (and one should be taken during the night but stuff that!). I have the essential but more difficult times set as alarms on my phone. One set is for 7.30am wake up time and one for 10pm bedtime both of which are easy enough! It;s fine as long as you don't forget to take the stuff when the alarm goes and you rush to switch it off ...
I have a dosette box for each day. The mornings are fine the evening are too the middle of the day ones are flexi until now so I will have to leave some on the car. I don’t use a handbag it’s so annoying with crutches as I don’t walk far the cars not far away. It’s just getting into a routine, it’s all new to me atm. Preds are taken and that’s it this is a whole new ball game. I don’t know what happens if i don’t take it on time.
I used a backpack with crutches.
The PMR symptoms will return if it is still there once the effect wears off. The timing isn't critical to half an hour or so.
Thanks PRO that’s reassuring.
A bag who needs a bag? I’m like the Queen I never take money lol
Not for money - for all the useful things. Like meds ...
Please don’t worry I felt pretty much the same on HC. Was also concerned about the day of the test but didn’t feel sick & the nurses were very kind. There were other patients around to chat to but take books, iPads etc. I did have a nap later that day. Don’t take your meds before the test though. They don’t always remember to tell you. All the best x
Sorry forgot to say. They take a blood test initially then give you an infusion of cortisol & then an hour later another blood test. That’s it. They then look at the levels before & after the infusion. To see where your adrenal function is.
Thank you for the information. I was told to not take my meds but bring them with me. Not sure why I’m there from early morning to 6 in the evening though. I will get some info I hope when I get my confirmation letter through. Thanks for your encouraging words.
Hi, I found this quote in the following link about when oral HC is taken...
"10mg before getting out of bed in the morning, 5mg at mid-day and 5mg no later than 6pm."
Obviously you are trying it for a different reason but it may make sense of the long day.
pituitary.org.uk/informatio...
That makes more sense Poopadoop. I gather the no later than 6pm is due to not keeping you awake at nights. There is obviously a reason for the whole day attendance I suppose each hospital does work differently. For example my synacthen test if I was on pred wouldn’t have happened unless I was on 3mg some do it above. Going to read the link thanks Poopadoop.
Not just - the idea is to allow the adrenal glands more scope to wake up by using a drug that mimics normal cortisol production better. One of the triggers for cortisol production is that the lowest level in the body is at midnight - if you were to take the HC later than 6pm there would still be some around at midnight and the stimulus would be weaker. That is the reason they make such a fuss about taking pred before bed.
Oh right I get it, thanks for the explanation that was very enlightening.
There are a few versions of the test - it depends on how many post-stimulation blood samples they decide to use and 3-4 hours is common.
Blooming good luck , I have all my fingers and toes crossed for you to get successful results , being Hypermobile has its advantages!😋😂😂😘
Thank you Blearyeyed me too. If I can get good results I will be over the moon. 😆😆😆
How are you getting on with your new meds??
I feel awful at the moment to be honest. Not sure if it being on hydrocortisone for 8 days or not. First few days think I felt better as I had that boost in the afternoon and not so tired and not to bothered in the morning when I woke up with no noticeable signs that I lacked cortisol in my body however glad when I took the first one of the day . However whether I have caught a bug I don’t know but I feel dreadful so tired, vivid dreams not able to get off to sleep easily and dreadful headaches feeling generally unwell. I have to stick with it as I have my Synacthen test just before Christmas. My neck pain due to wearing disc is not good at the moment and getting worse this can cause headaches but they are knocking me off my feet especially today. I ache more maybe but not sure if this is due to the change. Good news my PMR arm pain is stable no change there. So I’m feeling sorry for myself at the moment. Thank you for asking.
Oh im sorry you feel so bad. I hope you pick up. Fingers crossed for you! Changing meds is not easy. Hopefully it will come together.
Thank you powerwalk 😁
I m in similar situation. I wondered how you are getting on. I’m now on hydrocortisone. Having problems. Hope things went well fir you. Best wishes.
I had to come of hydrocortisone after a couple of months. I took it for my Synachen test. Three weeks of hell but I settled into it. Things went badly wrong at the end January I became very ill. Ended up in hospital with gastrointestinal problems. Thought the way I was feeling was to do with coming off pred and changing to hydrocortisone but I found out it was thyroid issues. Dr thought it was a flare but it wasn’t but he put me back to Predisolone again. I’m on 5.5mg at the moment.
What are your problems?
Oh. Get so complicated doesn’t it I’ve got a few other pain issues with neck and jaw and migraines. I have Polly my algia for eight or nine years. A few flareups almost stopping a few times and last September I got down to 1 mg. I did always get a lot of bouts of fatigue sometimes I would increase the prednisolone it wasn’t a massive issue I had a general anaesthetic in September and after that I went downhill fatigue was really bad in November last year when I saw the rheumatologist he said all the pain was down to degenerative disease and I definitely haven’t got polymyalgia and I had to see the endocrinologist. I actually felt too well then I saw my usual rheumatologist she said much the same and refer me for the SS test. I did tell her I was drenched with wet at night and the fatigue was bad she said it was the adrenaline glands not working. Cutting a long story short I had the short test but it was the lock down immediately afterwards I had a call from the nurse telling me it was very low then a couple of weeks ago I had my call with the endocrinologist he said it was low and to take 25 mg of hydrocortisone. I had actually decided to give it a try and I’ve been taking it several weeks. I started off thinking this is fantastic I felt a lot better then I felt really rough. Night sweats feeling really cold and dizzy. I can’t work out whether to increase it or cut down. today I felt so bad I’ve actually increased it because last night I was wet with sweat again I did wonder whether it was my thyroid I take 50 mg of levothyroxine. It’s such a strange time isn’t it? not been able to talk to a doctor and sort out the little things. I do keep thinking when the fatigue is bad , shall I go back on prednisolone. Sorry if this is a ramble on but really what I need to sort out is why am I sweating? Why do I feel so cold? Do I increase the hydrocortisone or do I try and lower. Oh , the endocrinologist said what ever you do don’t take it after 4 o’clock I found a really helpful website with a professor and he said you must take it during the night. And very early in the morning I tried both and nothing seems to help. Although I do think I need to take it later in day. Sorry this doesn’t make a lot of sense I’m so glad if you’re feeling a bit better although I’m sure you’ve still got your problems. It’s Therapy just writing it down. Wishing you a safe And peaceful day oh, could I just ask did the hydrocortisone make you feel dizzy?? I actually feel drunk rather than dizzy. Very warm wishes Mary. 73-year-old grandma. Brighton x
I think you need to speak to a doctor about those symptoms - do you have any other symptoms that could be Covid-19? Because some of those are suspicious and that does need to be ruled out.
It certainly is very complicated trying to work out what is going on with your body. I was on hydrocortisone for two months. It was the plan to stay on it for awhile at least until May when I saw the endocrinologist ( not sure when with all this going on). My test came back that I was doing well making cortisol but not good enough to come off of hydrocortisone for the time being. However I became very ill at the end of February. I had the shakes, sweating, terrible pain, unable to walk even upstairs, disorientation, dry mouth I can’t remember what else but it was a terrible time. I saw the doctor many times and he said it could be to do with a PMR flare but it didn’t seem to be anything like what I can remember from when I first had it. He put me back on prednisolone 15mg but things got worse. Long story short, I begin to think it could be something to do with my thyroid. I had hypothyroidism for a long while taking 25 mg Levothyroxine per day. I just knew that it couldn’t be anything to do with my polymyalgia and was more likely to be to do with my adrenal glands or my thyroid. I did have to wait about five weeks to get another blood test as you can only have one every two months. The one three weeks prior to this was on par with how it had been for a long time. I managed to get my bloods done just before lockdown. My results come through and the doctor rang me up straightaway to take me off of the levothyroxine and put me onto a drug for hyperthyroidism! My results were off the scale so much so they couldn’t even give me a rating. No wonder I felt like death. As soon as I started to take my new medication within three weeks I noticed the difference. It took me at least a month to be able to get up the stairs my shake subsided quite quickly and the sweating stopped. My mouth was not dry (boy, was it dry) Things are looking up for me I feel so much better. The muscular pains eased considerably but not entirely I have arthritis so it’s not going to be a pain free life. So sometimes things get so complicated with our bodies it just blows your mind. I do hope you get sorted.
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