Ha! I am so chuffed! I have reached 7.5 daily. That's 8 days running now... Thanks to you Eileen and your DSNS method. Fingers crossed it remains good. No pain just ridiculous tiredness and breathlessness. That I can cope with, annoying as it is.
I started on 15mg in July 2014 after nearly a year without a diagnosis, and am now thinking that it is possible that with this method of reduction I would have been able to come down more quickly, but who knows.... I started DSNS when I was having trouble getting down from 10mg in June. It's been straight forward ever since. Now, I know that it may well become more difficult from now on, but at least I have something to believe in. I am alone in this, apart from all you guys, because my GP isn't interested unless I reduce really quickly, so I don't see her. I arranged for blood tests now and again when I was planning a reduction or I had some pain but they've been normal since I started Prednisolone. She says, of course they are! The amount of steroids you are taking! Oh dear, I was doing my best to get them down.
Anyway, enough moaning about her! I'm doing ok thanks to your help and advice. And right now jubilant to have reached 7.5. Am going to stay on this dose for a couple of weeks more because I am going to Norway to visit my daughter and her very lively Viking boys on Thursday and I will need all the steroids I can get.... Hehe...
If you need to up the dose, do so whilst with very lively Viking boys and just remember it was those Vikings what done it.
When you get back and settled down, ask for a synacthen test. You need and Endochronoligist for this test. You GP will probably ask why, tell him you need to know if your adrenal glands are starting to wake up.
Thanks Lodger! Believe me I have told these Norwegians that this is all their fault!... Good idea about the synacthen test. I thought this might be a bit early, no?
So pleased for you! News like this gives us all a lift and those of us on the journey real hope. Yes many of us have numpty doctors I'm sad to say. They are quick enough to put on us on pred, which is right given the diagnosis, but not as happy to do the right thing and wean us down very slowly. In 3 weeks I start the DSNS from 20mg. Cannot wait to start. Hope you have a swell time with your little Vikings. Take it easy though, you don't want a flare. x
Congrats. 7.5 seems to be a tough one for many. I think I have made 7.0 this time after 2 unsuccessful attempts. Just from my experience if you feel that pain coming back( and we all can identify that pain) as you start your next drop don't be afraid to go back and give it a couple more weeks before you try again.
No, not early although some like to wait till 5mg.
I did not know about the test and I had it 6 months after I stopped taking pred. The Acute Medical Consultant went daft and said it should have been done earlier (I was in hospital for another problem). It was done and everything was tickety boo. That Consultant said - and I have never forgotten it, that people who have been on long-term pred should have that test before they stop taking pred.
Left hand not knowing what right hand is doing comes to mind.
Not really - this, or a bit higher, is the point about which the adrenals have to start to contribute again and that could well be the reason for your fatigue now if it wasn't a problem earlier.
Obviously you have a bit of a twerp of a GP - will she be helpful about the synacthen test do you think? If not, just slow down a bit more - and watch out for any increasing tiredness which is really the first sign of poor adrenal function.
That's great news. I am on 2nd week of 11mg though GP sheet said to go from 12.5 to 10. I decided not to risk it as I had a flare going from 15 to 12.5. It was too soon. So far, so good this time. I'm going to do 2 more weeks of 11 then go to 10. I started on 20 towards the end of May so keeping my fingers crossed. Have a lovely time in Norway. My grandchildren are coming to stay next week. They'll be here for a week.😀😀
Honestly - I don't understand why doctors don't appear to understand you need it long BEFORE you get to zero - since after about 5mg is where you will have trouble and by the time you've got to zero you could be in REAL trouble!
I learned the hard way and that is why I keep on saying 'sync test' early as possible. I had a steep learning curve, as you well know - over the past 8 years.
Patients must be pro-active with long term chronic illnesses. My mantra still is 'Knowledge is Power'.
Yes, thank you, Eileen. You are correct. Thankfully, in some ways, they have now just left me to my own devices and sign my repeat prescription on which I wrote what I needed and said it was to start reducing.😀😃
i am currently at 8mg (for over 2 months). I stayed at that dose because I was travelling. I am now settling in and will begin my reduction to 7.5mg the end of next week. Should I have the synacthen test done soon as a baseline?
We were probably all posting at the same time, so you will have read Eileen and my comments by now. Get it done - it is not a baseline, it is insurance or re-assurance.
Glad to hear of your successful reduction👍. Reading your post started my day on a real positive note.
I am going to begin my next decrease to 7 1/2 next week. I have found that at this level it gets a little tricky so follow the good advice of our experts and listen to your body carefully.
Have a wonderful time with your grandkiddies💕. I am envious...
Hi Eileen! I am actually a Dundonian currently living in Craigrothie near Cupar. We have chatted before but I changed my name slightly to include Fife recently.
I doubt my GP would be interested in organising a Synacthen test, she seems to find me having any knowledge about PMR and its treatment really annoying.... Shouldn't read what's said in these forums etc... !! She's the one who should!
Fatigue isn't something new for me and I happily fall asleep at the drop of a hat. Sometimes just for 10-20 minutes but I feel better for it.
Now that doesn't always include at night, that's a bit variable...
However, I was thinking that it was increasing. I will pay attention. I keep a sort of a diary recording how I am feeling etc.