I have been on prednisolone for over 13 years now and I can't seem to get down. I have been told by my consultant, Mr Hughes , following a scan two years ago, that I had a residual amount of vasculitis/ giant cell arteritis in my system and I had to reduce my pred. I also had paid privately, two years ago, to speak to Prof. Dasgupta who said after 11 years of prednisolone I was definitely suffering from prednisolone toxicity and it was imperative that I got down to at least 7.5 mgs. Two years later I am worse off and seem stuck around 14 mgs. I was on 12mgs when I spoke to Prof. Gasgupta
I keep trying to drop by 0.5mgs every two weeks and have done this so many times. I get down to 10.5/11mgs and then it all goes wrong and I get my usual symptoms of tiredness, headache, light headedness and generally feeling unwell. These have always been my symptoms no matter what I have tried. Of late when I get a bad spell I try and sit at 1mg above where I have just been when I got the relapse. My thinking is I don't have an illness it's just too much prednisolone in my body therefore just wait until your body adjusts. I have now been at 13.5 mgs for 9 days and I am still feeling rotten. Interestingly I did get down to 8.5mgs some years ago and my original symptoms of polymyalgia started returning i.e. sore thighs and neck etc. I had initially been diagnosed with polymyalgia for two years and that then morphed into giant cell arteritis.
If you read this far then thanks for reading. Any thoughts most welcome!!
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Stkeyna
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I feel like I'm in the same boat as you, though I've been on pred a lot less than 13 years. Just kinda sick of the stuff, and never feel totally well. For me, it's hard to tell the difference among pred, my GCA, adrenal issues ...
It Is so difficult as there seems so many variables, but this area of taking too much prednisolone, appears to me to be a subject that isn't discussed that much as it is so tricky to judge due to symptoms between your illness and the side effects of prednisolone being so similar. I think it helps knowing you are not the only one going a bit bonkers with it all!! Anyway good luck!!
I agree with you, the doctors do not discuss the issues with coming off of the prednisone. I wonder if they, I certainly don't, know which are symptoms of prednisone and symptoms of the illness. It does not sound like there is a line never mind a clear line between them.
In the case of PMR many are similar - I had PMR for 5 years without pred. Weight gain, depression, mood swings and few other things all appeared during those 5 years. And several disappeared with pred!
Fair comment but what I'm trying to say is that people have discussed being ill with GCA for example and then trying to reduce their pred. My point, perhaps, badly put, is I'm ill due to the prednisolone overdosing and not supposedly anything else.
I'm not entirely convinced about "pred toxicity" to be honest - it is very common to find people having increasing difficulty managing PMR/GCA flares with the same dose, they get into a yoyo sort of pattern and with every drop that then requires an increase it gets harder. Some people in the past have managed to get out of that roller coaster experience. But it does take some grit to put up with the bad patch. But as I said below - TCZ might be the way to break the pattern
This is what I posted on your other post at Vasculitis UK: (plus a bit more I forgot to say)
By the way you describe the symptoms, my suspicion is that you are someone who gets into adrenal insufficiency territory at a relatively high dose - it can happen around 10mg or more. And the only way to get past it is to accept the fatigue and limitations until your body catches up - Snazzy will tell you about her story.
The only way to get it to catch up is to stick at a dose of pred that is lower than your body requires for ideal functioning so the HPA axis (hypothalamus, pituitary, adrenal glands and associated hormones) is prodded to wake up - the system producing cortisol goes into hibernation while you are on higher doses of pred because the feedback set-up signals that no more corticosteroid is required, the pred does the job. Just like your central heating boiler doesn't kick in if the woodburning stove in the room where the thermostat is has been lit. Not until the pred level is down will your adrenal function return - and it can take a lot longer than is pleasant or expected. The smaller the reduction steps the less uncomfortable it is likely to be - but we are talking months here, not a few days.
When did you last see Rod Hughes? I assume you haven't seen him since he told you to reduce the dose because he thought the GCA was away?
I would think you should be eligible for tocilizumab since you had a GCA diagnosis. That would give you the confidence that any returning syptoms were less likely to be the GCA or PMR (it gets 50% of GCA patients entirely off pred) and stop the kneejerk reaction of going back to the dose where you feel better. To get better adrenal participation means you MUST be at a lower dose of pred but there is very little you can do otherwise - except if the GCA/PMR isn't a factor, then possibly using hydrocortisone instead of pred might be something they would consider but that might require endocrinologist inout and they tend to be reluctant until you are down to the world of 5mg pred.
I saw Rod Hughes about 6 months ago, and I am due to see him again now, but I have been told there are no appointments available at the moment! When I last saw him I was at 9.5mgs and things were reasonable ....a day later and I was struggling again! I had mentioned adrenal deficiency to him and he'd said he wouldn't measure anything until I got around 5 mgs. As I said he didn't think I qualified for tocilizumab due to hardly anything coming up on the scan. Prof. Dasgupta had told me that it was more than likely that my adrenal glands would never work again! What was interesting was that my PMR symptoms returned when I got around the 9mg mark. The one constant since being diagnosed with vasculitis has been the symptoms - tiredness, headache, dizziness and feeling unwell. Nothing more, nothing less always the same! Just getting more of it now!! Thanks again!
Is it really from one day to the next that you feel rubbish again? What was "hardly anything"? What you are describing isn't typical PMR symptoms - so how did they decide that was what it was? Was the GCA typical even without a biopsy or u/s scan result.
I have to say the duration and the PMR reappearing at 9mg doesn't surprise me in the least - and there are several of us on the forum with similar stories, Long PMR and an increasing requirement for pred to keep feeling well. And finally there is movement from rheumies and drug companies to address it.
Thanks for spending so much time on me!! Anyway I normally feel rubbish for 5 days or so then it settles down and off I go again dropping at about 0.5mgs per two to three weeks. Then I get on a run getting to 10.5/11 mg and bang the same thing happens again. So start about 14/15mg and get to 10.5/11mg. This time I went bang at 10.5mgs went up 1 mg and sat there for a week or so still felt rubbish so went up to 13.5mg and have been here a while and still feeling poorly.
My first two years I had PMR with usually thigh, neck and headache problems then woke up one morning with terrible headache - like an ice pick go into my head. I then had a pet scan and was told I lit up like a belisha beacon with inflammation and was told I had giant cell arteritis. I saw several consultanst who all said much the same thing. I have been under Rod Hughes for about 6 years now and he just says I have vasculitis and that my last scan of about two years ago showed only a residual amount of the disease. From his demeanour, and what he said, I took it that I was just suffering from too much prednisolone and just had to get down. I am now suffering from other side effects - cataracts in both eyes - and quite a few other things which supposedly can't be related to pred. but I'm not so sure.
“Anyway I normally feel rubbish for 5 days or so then it settles down and off I go again dropping at about 0.5mgs per two to three weeks”..
Comment -
feeling rubbish for that period would indicate steroid withdrawal-another reason why slower taper is recommended…
Dropping 0.5mg per two to three weeks - that might be fine for some -but if you are particularly sensitive to tapering -it might be wise to use one of the longer tapers I describe in my Simple taper link .
You are so right! I have now started a fresh with your taper plan, on week 4 and doing really well, i have always wanted to rush it , but it was not for me. I would advice people to follow your plan. Sorry for jumping in to the conversation, but im just so pleased and grateful !🌷
Yes...I'm learning from this...I'm sure the slow 0.5mg taper (at the very least 4-5 weeks) is helping me! Sorry for interrupting Stkeyna but wanted to let you know this is really sensible advice...do hope you get sorted 👍
Cataracts are easily dealt with - I was told in December I finally have developing ones in both eyes, worse in left eye. Can't wait for her to decide they are ready to do something about!
Mmm - was your last scan while you were on pred? Totally messes up the result.
What are your other problems? Maybe someone can come up with suggestions to mitigate them. Doctor's ideas about what is due to pred and ours are often a bit different!
Cataracts are easily dealt with ..mmm...oooh...aaagh. I remember the cataract surgeon saying to me, "It's a tricky operation but it very rarely goes wrong" and that is true! However I seem to have ended up with something called dysphotopsia - dark line and flickering in the corner of the eye as well as having a lot of inflammation for five months after the operation. Interestingly I also had a prostate cancer operation and again a lot of inflammation - I thought that strange being on so much pred.!
Anyway suffering from a lot of stomach bloating and some pain - a consultant thought it down to the steroids. I also recently had a dvt - again higher risk of this happening when on large amounts of pred plus three kidney stones in two years - maybe due to the Adcal I took for seven years - now stopped! No advice given about Adcal!
And yes I was on pred. when I had my scan at Mr Hughes advice. He said to come off the pred. all together as it can release the dragon which it had done on a previous scan where the consultant told me to come off five days prior to it being done.
Anyway I am sure your cataract operation - when you get there - will be fine as it is with most people! Perhaps discussions about judging the amount of pred. you need might be worth considering.
I have taken pred for 10 years plus, and lowering every 2 weeks would be far too quick for me......the DSNS, is the best solution for many of us......I have lowered recently from 7 mg to 6.5mg...will stay there about a month before trying for 6 mg....our adrenal s need to cope....take it slow....it may help....
I have done that too.....and been in big trouble...we are all different, you will have to say hopefully doing this slower I won't keep going back to the higher doses......and my adrenal s might start to kick in....I am under no illusions I may have to stay at some dose longer than others, but that is the challenge....we hope to win.......
Yes as you say we are all different. I just feel that if your symptoms are virtually the same for your illness - in my case vasculitis - and from side effects of the pred. then we should be warned about this fact. Surely the consultants should be more aware of when you step from one to the other. I see this as a big problem that's not really being dealt with. I was told on so many occasions. "Oh don't suffer just go up on your pred." but I am now becoming aware that it was - and for a long time - has been been the pred. that is/was causing the problem. A very difficult one!
You know your body best. I haven't had the same difficulties as you, but I think my experience is somewhat pertinent. Never able to get to zero although I was for some years at a nice low dose of 2-2.5 (I know, you are thinking I'm lucky, and in some ways I am). In 2019-20 I decded to try very hard. At the time I was at 2 mg (please don't laugh. I'd been on pred for about 5 years by then). What I did was take the dead slow nearly stop taper and go through every step twice. I tapered by 1/2 mg at a time. So instead of taking six weeks to taper by half a mg, I took three months! It took one year. I did achieve zero, but within six weeks I had to start again, although I was able to stay at a relatively low dose for several months. In late 2020 I experienced a real flare - CPR higher than it had eve been, the whole shebang. I was able to control it by going as high as 10, which I'd not seen since 2015, the year I started pred. The point here is, more than a year has gone by and I have not yet been able to get back to that old "lowest best dose" of 2-2.5 again. I am, finally , getting close, but I am really taking my time with it. If all goes well I should be at 2.5 in another month or so, but not holding my breath as I've been here before. Patience really is the key. The others have told you to slow down. The only way you will successfully taper is to go very slowly. There is something PMRpro said years ago: "It isn't slow if it works". What you have been doing, doctor's orders/expectations or no, is not working, so really no point trying to taper that way yet again. In my own way I kept rushing each taper attempt most of 2021, and it's only by being very slow and patient that I've finally seen some success.
Also, I was having strange bouts of lightheadedness, not exactly dizziness. This went away once my dose was back below 5 mg again, so I now assume it was a pred side effect, which I'd not experienced in the beginning.
Very kind of you to share your experiences with me and no I was not laughing at any point - just empathizing. Anyway, I think the message about going slow is beginning to finally sink in! It is amazing the medical profession hasn't learned this!!
I will hold my hand up and say I was pretty terrible in the early days - I'd be off running down the pred. numbers 15 , 14, 13 and away in a few weeks and, of course, wham bang I was back in bed. BUT I have followed the medical orders over the last few years and that hasn't worked. AND as you quite rightly say what I am doing is not working so time to crawl - me thinks!
Anyway many thanks again and your thoughtful words have helped! In fact, I have been amazed at the number of people who have contacted me either out of sympathy or out of general interest due to their situation! Sadly there are many out there who are suffering.
My doctor didn't tell me pred wasn't a cure. Because early (pretty fast) tapering went so well I thought I'd be done and dusted in three months! It wasn't too long before I learned otherwise. My doctors however have always been supportive of me, no pressure to reduce quickly, And the forums have helped enormously.
I must say you are a wee bit aggressive in your comments to folks. I am new to this group and when I read such aggressiveness I find you to be intimidating and not supportive. There just may be posts that I and other new folks have not found/read as of yet, please be a little more patient with us. I joined this group because of the aggressive in the doctors TELLING me how I feel, etc. If I want aggressiveness in discussion about my illnesses, I can "try to get an appointment" for 6 to 8 months at the earliest from the time of the issue. PMPpro you have a great deal of knowledge but please, be a bit less aggressive in sharing your information. Personally, I am afraid to ask anything for fear of you telling me I should know the answer or I should have read the answer elsewhere and/or I am wrong in my thinking about my own illness. Telling someone "If you were around here more" that they would have the answer is demeaning and not the least be supportive. That was a very off-putting thing to say to Stkeyna. I hope I am not thrown out of the group for saying this to an "Ambassador" but my fear of getting admonished for asking a question is higher than my fear of being thrown out of the group for asking you to please, be patient. We are scared and we are alone. Be kind.
Have to say, I think that you are maybe confusing aggressiveness with professionalism.
PMRPro is extremely knowledgeable about a great many thing besides PMR…and puts things across in a straightforward manner as expected from a scientific mind.
She spends an inordinate amount of time on the forum reading every post and every reply -and I do mean everything!
We are fully aware that new patients are scared -we’ve all been there at one time -and very often the written word can be misconstrued by the reader -especially early days when newbies are in a bad place, physically and mentally. ..and sometimes things get lost in translation between varying countries/cultures.
We welcome any question from anyone at any time - and there is a great deal of information within the FAQs (put together by a few of us) which members could look at initially.
The only paid members of the forum are the moderators, the rest of us ,even those with a title are patients or ex-patients and give our time freely.
We are all in this together, and being kind as well as imparting knowledge is part of that.
I did not confuse professionalism with aggressiveness. I have written a Q & A column in an international sports magazine for over 33 years. I completely understand how to write a professional, non-aggressive answer to a question whether the athlete asking is a novice or an Olympian. There was nothing kind in the imparting of knowledge in some parts of those posts. A little patience with new people trying to navigate this site while dealing with the medical field is all I asked for. I am asking for myself and other new people to not be intimidated and demeaned for not knowing the answer was posted elsewhere. My original comment was in defense of someone that had asked a question, I was surprised by the answer they received. Please forgive me being new and trying to learn and asking for a little patience and kindness for myself and others. I came to this group for support, not frustration. And from what I have seen, no, we are not all in this together. We have independent and unique situations and "one size" does not fit all and at times it does not fit any.
No forgiveness required for being new -and I’m not sure I implied that one size fits all, but I do consider are all in this together due to lack of understanding from many medical people.
I sincerely hope you get the support you want from this forum -and I’m sure you will.
We obviously have different views on this scenario, so best to leave it at that.
I have read dozens and dozens of posts here. So far, there are some fabulous people in this group, some others are short, terse, and dismissive. Other people are wonderful and kind. They are supportive and have great insights.
There is nothing for help or support out there. None. A friend found this group and thought that it would be helpful but geez, I don't need any more people talking down to me or answering a question with "google" it. I have doctors that do that.
I was not implying you, personally, thought "one size fits all". I am saying we are not in this together, every case is completely different from the next, we all react to different medications and treatments differently. The common thread is a medical field that is not helpful.
I now think I am confused as to what the group's purpose is. I'll reread the HealthUnlocked website home pages and adjust my question/comments accordingly.
The group’s purpose is to help patients -as you say there can be scant support elsewhere - but we cannot give detailed medical advice, only state what we as individuals have found useful.
Maybe look at the UK charity’s website -will link it here-
They are all posts originated by members -and have answers and responses -which are often as important as the original post.
Those of us that have been involved in compiling them do link them in a reply with a short note -if that seems terse or dismissive then it’s not meant to be - but why re-write information when it readily available?
Google does have it uses -and in some instances a link to a medical article is the right response.
I’ve been on this forum since 2012 as both a patient and an ex-patient and have always found it very supportive - I hope you will feel the same in time.
Thank you for your prednisolone story - which as you say - sounds a lot like mine! Not giving up hope resonates strongly with me at the moment. I wake up some mornings as tired as when I went to sleep and then you hit that dark, grey wall of feeling very depressed. At which point you reassure yourself that you are entitled to feel very low after 13 years of this nightmare. So you drag yourself downstairs wondering will you be able to walk to the park today or not? Or can you make it to the shop and back without running out of energy and having to spend the rest of the day lying about doing very little and just waiting for the symptoms to get as bored as you and move on for a while!!
Anyway I am sure you know the story and I am so pleased you have managed to get down or indeed get off prednisolone - so well done to you. May I just ask what drug you were put on to aid your prednisolone escape? Oh by the way the 7.5mgs and below is also always the figure I am quoted as the cut-off point where the level of prednisolone really isn't doing you long term damage anymore! Mmmmm but isn't everyone different in the way they absorb prednisolone!!??
"Mmmmm but isn't everyone different in the way they absorb prednisolone!!??"
I've wondered about this myself. I have the metabolism of a volcano. With pain meds I seem to require doses about average. At the dentist, a double dose of lidocaine is always required. Ibuprofen takes 800 mg to be effective. Tylenol 1000 mg. The list goes on. I wonder if that could apply to Prednisone as well.
Or maybe its not metabolism, but a low threshold of pain issue.
Mayo Clinic Lab has a test for blood serum levels of Prednisone. I have been talking with my GP about possibly drawing blood samples three or four times on a day to see how the levels change throughout the day. It may provide insight into how my body is metabolizing the steroid and help personalize dosing and tapering a bit more.
Thanks for the contact. All I can say is when I first saw my experienced consultant he looked at me and said, "Well you don't seem to round in the face so that means you are not absorbing the pred. as much as others might!" I have rounded slightly in the face but not like the moon face of some others! Good luck!!
After two years on pred, my cardio tells me the other day that I have a surprisingly minimal Cushing appearance. Additionally I've only gained 10 lb over my weight at diagnosis.
I suspect there are significant differences in the way folk's bodies metabolize Pred (and drugs in general).
That's interesting! I've been on Pred for 3 years, starting at 15 and now on 1. I had minimal rounding of the face- in the early days. My weight never increased and has been constant throughout. So, I think you could be right.
Ah yes, but I have the MOON FACE even after the taper! I did gain 12 pounds practically overnight. I am on a strict vegan diet (for at least 20 years) I walk 4.5 miles every morning and swim laps at night (at least 10 years). I was in great shape at diagnosis. Even with the only change being prednisone, I got more weight gain and a giant MOON FACE! I also starting growing long hair on my arms and face. Weirdest of all, any scars from stitches, some over 40 years old, bubbled up with weird blisters and turned BRIGHT RED. So after 6 months of 20 mg a day, the oncologist and the rheumatologist said to taper. I am now on 5 mg (3 months now), all but 10 pounds of the weight was sweated off but the MOON FACE never went away, the scars are bubbled and bright red, especially where I had 6 stitches under my right eye 55 years ago. Until the prednisone, that scar was invisible. Both doctors say that is from the prednisone but the MOON FACE and the bubbled red scars are ridiculous. The long hair on my arms and face stopped growing. Phew!
I was having the same problem in trying to pass the 10 MG mark. My rheumatologist finally convinced me to try Leflunomide and so I did last September. I am now successfully at 7 MG and hope to continue my slow .5 MG taper one or two months at a time.
My PMR started October 2018 so I count myself lucky when compared to many on this forum.
Yes it does have it's downside. Two main side effects for me are random dizziness and daily regular bowel movements. I had to break the dose to 10 MG in the am and 10 in the pm to slow my bowels down.
My doctor is aware of both complaints but both her and I are on the same page as I am finally having success in prednisone reduction and so I am resolved to put up with these two ongoing annoyances.
I had temporal arteritis first, then Polymyalgia. They both went after a couple of years and I immediately got autoimmune hepatitis. I have been on Prednisolone now for twelve years. I have had problems with all other medication and so I am stuck with pred. My liver readings go up and down and so the pred does too. Last year I said I wanted to get off it and take my chance. As I reduced it my liver improved and for that reason I believe I have pred toxicity too. All was well until I got Covid (mildly). Afterwards my liver flared enormously and so I am back up on the pred and feeling awful.. I do feel we can’t win! Good luck.
PMR 20 years, GCA 10 plus. Was on the yoyo a long time, Every time Rheumy and I would try a slow taper I would flare and we would be back up to 20mg per day. Have been on 5mg. now for almost 18 months. Been on Actemra 18 months. My SED never goes to normal, illness never goes away. But Actemra helps make life livable. My rheumatologist told me I would be on 5mg. pred for the rest of my life. I am 67. So, I accept it, toxicity or not. Stuck between a rock and a hard place.
It all makes sense - adrenal insufficiency and prednisolone over use. During this latest flare I had to increase my pred to 30mg just to get through the day but as I reduced it I felt so much better. I got down to 10mg and at the moment any decrease makes me ill. But I am determined!
Pred is great when you first take it, the symptoms completely disappear & is a good way of diagnosing PCR or GCA but it is not a miracle drug & can do a lot of damage to your body. I would suggest you take Prof Dasgupta's advice & one way or another reduce your dose of Pred as far as you can, find alternatives & speak with him again.
Have you tried taking vitamin D3 supplement? I managed to wean myself off prednisolone after five years whilst taking a fairly high dose of vitamin D as a precaution because of the Covid pandemic. I was taking 4k IU at the time and the rheumatologist who gave me the all clear did not disagree with my assumption that the D3 may have helped; she did, however, advise me to reduce the dose in the summer months. Another rheumatologist whom I met afterwards on a non-PMR matter, however, put it down to coincidence.
Many thanks for your kind thoughts but yes I am on vitamin D3 but not noticed any difference apart from strengthening my bones. We are all different as we know. Much appreciated.
Prednisone is a feel good medication. When you drop to a certain level your body makes you feel terrible as if all your symptoms were returning. You have to push through these feelings and you you will feel better in 5/7 days until the next time you drop down and the whole cycle starts again but will again adjust in 5/7 days, this was my experience of getting off it altogether,
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I am having headaches not at the temple but over the eyes and top which is unusual. I’m on 10mg of Predisolone. Poor sleep and shoulder pain
