Hi, I would appreciate any help as am feeling v down and depressed with what Im going through.
Tapering from 15 and down to 13 at moment. Dont feel great at all. Pains in the morning reminiscent of before I was initially diagnosed with PMR. They go after a few hours once medication has worked.
Is this par for the course?
The last 48 hours have had palpitations day and night and cant sleep because worried about them.
Is this what happens when you taper?
For the last 3/4 months Ive been getting 3/4 hours sleep nightly at best and its always broken. Im absolutely shattered. And then too hyped up with the prednisolone during the day to even nap to catch up. Im starting to dread going to bed.
This medication is ruining my life, its all I think about all day.
Doc at hospital wants to put me on something called azathioprine. Anyone had any experienced of this medication? Does it help alongside the pred?
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18 Replies
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Hi there Suzuki56 - you are not alone. Everything you describe I certainly have experienced and hopelessness along with it.
To get the best responses (IMHO), you might want to say a bit more about how long you have been on each dose, what your Rheumatologist has said about tapering etc.
As a newbie to the site myself (though with the benefit of an NHS background), doing site searches are incredibly helpful. There are so many topic threads that are helpful. Just try almost randomly typing in search words around your questions and you will see what I mean.
I don’t have any experience with Azathioprine so will leave that for others.
In terms of dreading stuff like the night, I decided that I just wasn’t going to let it dominate me. So I play my favourite music, sometimes I get up and ‘dance’ (jerk about holding onto a stick!), I sing (very badly), try to write silly rhymes, practice meditation. But the sleeplessness will not dictate who I am....
Don’t know if any of that helps, but reach for your strength...it is in you.
Sending you a big hug
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many thanks
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15mg since Feb. told me to stick at 13 for 4 weeks, then reduce by 1 every 4 weeks.
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Hi again. Yes, I tried that at first but got too many side-effects. I mostly stay on a dose longer until I feel relatively sane, then reduce by .5 mg. it’s all I can manage. I remain in pain, have the side-effects you describe and others (which I expect you do as well).
But progress is progress.
I’ve investigated the palpitations issue quite a lot because it concerned me. I also monitored my blood pressure which was all over the place. A mixture in my case of PMR, GCA and drug side-effects...though I do think you should get an appointment at your GP so they can check it out so that you can rule out anything else.
I’m a mezzo-soprano. I can generally stay in tune but with a squawk quality at the top end. Oddly, I have found hitting the high notes ie almost outside my range to be a mood enhancer for me ( if not the neighbours). I don’t know why that should be but it works ! Sometimes if I’m lucky the dog sings along too.
Wonderful - actually mezzo is my favourite in Opera. I wonder if the mood-enhancing bit is when we push ourselves into a slightly challenging position? I certainly get it when I convince myself to be positive and Do Something..Anything!Anyway, lovely to meet you
Hi Suzuki56. I've no knowledge or experience of azathioprine but I certainly have experienced palpitations and disturbed nights. Unsettled nights and sleep problems are a common side effect of steroids but it's quite possible for things to improve a bit as time goes on and there's lots of 'self-help' remedies that won't necessarily cure the problem, but can certainly ease it. You'd have to experiment to see what works best for you.My palpitations were constant 24/7 and were very troublesome. They were fully investigated and finally diagnosed as ectopic beats.... distressing but not life threatening and therefore most certainly yet another side effect of pred. I was put on a mild dose of propanolol (a beta blocker) and everything is fine now.
As for the pains....I'd say you're not taking a high enough dose of steroid to mop up all the inflammation, but others more knowledgeable will advise you on that.
PMR/GCA can be hugely distressing as we try to navigate our way through it's unpredictable twists and turns, but knowledge is power and power is control. The more we educate ourselves the better equipped we are to make informed and appropriate decisions. We also remove the mystery and fear around what's happening to us which means less stress!
There will always be 'down days' but in my experience these lessen as understanding increases and we become able to manage our condition better.
Since pred, and other drugs can deplete our magnesium levels Mg supplements might be in order. My experience has been this: I had these awful palpitations and I couldn’t understand why. I don’t have a history of heart disease. I’m not taking anything particular that would make my heart do that. Then I looked up about magnesium depletion from prednisone and some of the anti-acids that we take to protect the stomach. In the meantime I made an appointment with my cardiologist for a check up. I decided to try 100 mg of magnesium. The palpitations went away by the time
I visited my cardiologist. And they never came back. I wore one of these 24 hour monitors that you sleep with. I noticed when I take say extra anti-acid for the stomach upset they can pop up. I found the best magnesium for me was magnesium glycinate. This is the only form of magnesium that doesn’t send me to the loo. Interestingly, my nephew who has an auto immune disease called mixed connective tissue disease had a case of atrial fibrillation that was completely abolished by magnesium.
Interesting. thanks.
I am really sorry to hear how you are feeling. Your description mirrors my experience. My best advice is try not to obsess just accept it. It does get better but it's a long journey. Do not taper until you are pain free. I suffered anxiety depression weight gain and unbelievable level's of fatigue. I even cried spontaneously. Al of this was entirely out of character. All of this was accompanied by a loss of confidence.A very grim picture but the good news is it gets better. The time scale is variable and seems to depend on the rate of taper. You will have to go at your pace but everyone will tell you to slow you are not going mad the feelings are debilitating and seem overwhelmingly it will get better plan for two years it's a long time I know there is no quick fix but if will get better based on my experience. Good luck
Hi Suzui56 I haven't heard of azathioprine but I am on amitriptyline which was originally used as an anti depressant but is now prescribed for pain, it also helps you sleep. I am also on Methotrexate which like azathioprine is an immune suppressant drug so that I can reduce the prednisone. This illness is a roller-coaster 🎢 and I have felt very down too this week too . Its just over twelve months since I was diagnosed and at first the steroids plus the amitriptyline made me feel much better but as the tapering started I was in agony again. My situation is complicated as it turns out that I need a hip replacement too my first one done over ten years ago at the age of 48. This forum helped me as through the last few months. As the pandemic kicked in my care had gone from seeing the GP every week and them checking up on me to a phone appoint once a month to being batted back and forth between between the GP and rheumatology. Not anyone's fault just the situation we are all in made it difficult. Sorry for the ramble but I found just getting it all out on this site helped me make sense of things there is always someone with brilliant advice but I also think that the act of writing things down makes it easier to get your head around what you are experiencing. It is a horrible condition I like many others wish you well and hope you feel a little better soon 🌷
Sorry you are feeling so low. You are not alone, I had awful side affects with Prednisolone and suffered really bad depression, anxiety, headaches, sweating pains etc. Thankfully as I decreased the dosage the severe side affects also decreased. Unfortunately decreasing the dosage takes time but I am now down to 1.5 mg and no longer have the horrific side affects I had at the beginning. There is a huge amount of advice and support on this forum.
Hi there. I have no experience with any other drug but Pred so cant help you there.However I can sympathise totally with you feeling fed up. For the first 6 months after my diagnosis ,and going from a healthy fit person who did gym classes 3 times a week, suddenly my world had changed on top of the COVID epidemic too !
Most of the time I managed to stay positive and focused on what I could do without worsening my condition. I made over 400 masks to raise money for a dog charity and continued with my German studies.
On more than one occasion I cried myself to sleep wishing that this had not happened to me when I had kept myself so fit.
This group has helped me so much, not only because it gives support to your questions but you realise some sufferers of PMR are so much worse than yourself.
My moto has always been to think of all the ways you are fortunate despite this unpredictable and horrible disease but a little bit of feeling fed up is totally normal.
As for the sleep patterns I gave in to that. If I woke early I just got up and did something else besides wrestling with sleep. in the afternoon I would then take myself off to bed for an hour or more. Easy for me because I am retired but not so if you are even more unfortunate and diagnosed younger.
I so hope your slow weaning progresses, but again I can relate to that as I experienced set backs which were depressing. Coming down from the steroid dose is so much harder than starting them but listen to your body.
All the best to you and take it easy on yourself...........we all have the right to feel fed up sometimes.
PS. if the palpitations are concerning you make sure to inform your GP.
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Fed up
Another frightening thing is happening to me. 
Am really fed up now 😤 . 😫😫
In pain and fed up
Fed up with tablets 
