I have been on 11mg for a month or two and doing relatively well. At the beginning of July I decided to try to taper to 10mg using the suggested slow method. Saturday and Sunday ( yesterday and the previous day ) were my last two days of taking one day old and one day new ( 11mg and 10mg ).
Unfortunately, I woke up yesterday with depression, anxiety, loss of interest in things, brain fog and slight increase in pain and stiffness. I felt so "out of sorts" that I never got out of bed or got dressed. Today I am feeling the same way and am very disappointed in the position I am in and concerned with what I should do at this point.
I went back to 11mg this morning and was thinking going forward rather than going back to 11mg every day, I should go back to taking 10mg every third or fourth day so as to maintain whatever gains I made during this past month.
I would appreciate any thoughts or suggestions.
I should mention I also feel jittery, have palpatations and slight nausea.
I've been on prednisone since September 2015 and only down to 16.5mg because my body does what yours is doing. Symptoms come back so i now drop very small doses and over a longer time than the drop dead slow. I repeat werks especially nrar the end. When i do have some of my returning symptoms and I'm at the new level i stay there for at least 2mos before starting again to let my body adjust.
So you may want to go back to the reduction week you were fine at and repeat it for a week or two and then the next for the same or increase the amount you are trying to reduce.
I hope this helps.
Mariane
I'd give it at least a couple of weeks at 11mg and if things hsve settled back in, then you could try your suggested dosage schedule
It may be something else - an infection for example. Did returning to 11mg do the trick?
However - even at the very slow reduction, it may be that the dose you NEED at this stage is 11mg and taking 10mg ever few days still isn't ideal. This isn't a race - there is never any point in trying to force a reduction and you obviously don't feel too good whatever it is due to. It is never a good idea to try to reduce if you aren't well.
I'd go back to 11mg for at least a month and then maybe try again - and like maid marianne, slow it down even further. I do suggest that if you are very sensitive to dose change, some of us are. There is no point suffering just to say you are on a tiny bit lower dose.
Some of these symptoms could be due to a lack of corticosteroid - have you been under any stress recently? It doesn't matter if it is physical or emotional stress, an infection or a fall can be enough - your body can't produce more when needed.
You haven't started a new batch of pills have you? Sometimes different manufacturers use different fillers in their tablets and they don't agree with us - and we don't absorb as much of the drug. Different people don't absorb the same amounts of pred anyway - it can vary from 90% (i.e. almost all) down to 50% - which means you are getting about half the dose you think you are! This of course may be the reason some patients need much higher doses than others!
Since this just occurred yesterday I took 11 my this morning. I did ok the dosing series where I took 10mg for one day and then 11mg for two days. It was when I took 10mg one day then 11mg the next ( last of the series before switching to old dose/new dose series ) that I ran into the problem. Therefore, in my mind it seems logical to maybe go back to 10mg one day then 11mg for three days and stick with that to see if I am ok.
Make sense ?
Perfect - but make sure you feel fine! No having a cruise in Egypt now!
I have been on 11mg and now dropping, but to 10mg is too much for me...I go to 10.5...and I still get lots of your symptoms.....it takes me a bout 2/3 weeks to get rid of some of those feelings.....I have now dropped, so will stay at this level for some weeks....good luck, it`s tricky, you are not alone!
i do trhe slow thing near enough but drop only quater mg per time . yes i know its slower but it is working so far
ps my doc said quater wont make any differance but i still get a little withdrawal symtoms so think it does dont u
Has your doctor ever taken pred himself? When they have - then they can comment! Half a mg can make a massive difference - and there are plenty of patients who will back us up.
I am having the same problems with the palpitations and I also have pain returning. This happened as soon as I was completely on 8.5mgs. It started the week I had my grandchildren staying and even when they were home for a week it continued. They are now back staying for a week and I decided the reduction is too much. Today I went back up to 9mgs and will start to reduce again in 2 weeks when they go home. I am feeling better, the palpitations have lessened and the pain has reduced. I think I was doing too much and the steroids are not quite 'covering it.'
I have been stuck in the same position as you for about 6 months now, suffering the same. It started when I went from 11 to 10. My body just does not want to go down to 10. About the same time I started suffering from possible pred related side effects., so I am feeling the pressure to drop my dose. I feel like I am stuck between the devil and the deep blue sea. I have stayed on 10 for 4 weeks now, but pain and stiffness has not eased. Other problems have continued to get worse. If I wasn't suffering possible side effects I would happily go back up to 11.
Sounds like we are in very similar predicaments.
Have you been getting enough rest, as well as enough appropriate exercise hopefully in the fresh air? You should coddle yourself so your body has a better chance to heal. I know that's sometimes hard to manage, but if you had broken a bone no one would be expecting you to perform as usual, would they? This disease is invisible, but in the need to take time for healing it's no different. 💕
You have to come to terms with the idea of side effects - what do you mean by possible pred-related side effects? And not taking enough pred to manage the problem isn't virtuous - you are getting all the downsides with no benefit to balance it out.
I had PMR for 5 years without pred, I had 2 years on pred with next to no side-effects other than the weight redistributed itself to the typical pred places. Then I had 9 months on a different corticosteroid that brought with it a load of very unpleasant side effects - muscle atrophy, weight gain, my hair went haywire in every sense of the word and I grew a dark beard. Switching to yet another form of pred led to them reversing luckily - I managed to lose 36lbs in weight. But at no point in that 9 months did I feel the PMR was better than the side effects - even though I needed 20mg taken at night to get any pain relief.
During the 5 years I wasn't on pred I put on weight - I couldn't exercise. I was immobile because of the pain and stiffness - a major risk factor for osteoporosis. Together they were a risk factor for diabetes. I was depressed and cut off from my friends. There are risks associated with unmanaged PMR too - it isn't black and white.
Having struggled myelf on and off 4 years now, (10.5mg) would you mind explaining the difference between the choices of pred? I have the side effects you describe with the first lot of pred you were on, but at no time has my doctor or rheumie offered me a different one, could it be the cost!.......I am on prednisilone..
Thank you....
i dont think he has eileen, its all in the reading for them.if it isnt in the text books then they dont know. how it affects differant people x
hi scotth i am on my 5 year pred trip. and i have to say about the side affects. i never had any really that i can rememeber. so i hope this helps. i did have side effects on alundronic. so doc changed that to calceos.which has been ok, from 20 to 2 mg over 5 years wth 1 flare.but now i am down to 2 mg i am very slowly reducing. as at 2 mg.i think i am safe from bone probs fingers x