I followed the protocol to reduce slowly from 15/ 12.5 in Aug of 2018. At times had to go up and then down as everyone knows. Now I am down to 1mg and my rheumatologist suggests I stay there even know he also says it is not doing much. I sometimes skip a day and also tried taking it every other day and a few times with other meds/illnesses I was off completely for 5-7days. I think I am hesitating to cut the cord.
I feel much better than 2018 and will always be grateful to the prednisone, but I do now know I have some arthritis and skeletal issues that cause some of the continuing discomfort. The reason I would like to let go of the Pred is not the weight - that came off several months ago. But as many have mentioned, the bruising is ridiculous.If I look at my legs the wrong way, a bruise appears. I will do self-tanning and makeup this summer but it is far from an answer. Also, since we do not have coated Pred in the US it has destroyed my esophagus and my already problematic colon.
I am also being evaluated presently for Afib which I understand Pred can contribute to.
I want to let go completely and I think I am more psychologically attached to it now- not an addiction or anything like that - I just think it is like taking training wheels off the bike. Has anyone else successfully cut the cord? I can always go back if the doc and I think PMR is reviving and I have plenty of supplies so that is not the issue.
Thank you all for all you say and do!!!!!
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bluegirl7
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It isn't unknown for 1mg and even 1/2mg to be keeping any low level inflammation under control - been a few people discovering zero pred was a step too far.
It is unlikely 1mg pred is causing your afib - in fact my afib was due to damage to the sinus node caused by the autoimmune part of PMR, and it was worse if I had a flare and then more pred improved it. Pred often gets the blame - but most autoimmune disorders come with an increased rate of afib, including PMR. It is also common in our age group.
I would have a go with one of the slowed tapers, using zero as the new dose and very slowly, repeating steps several times, gradually increasing the number of days without pred. See how you get on. But don't pin all your hopes on zero pred meaning no bruising - I had horrendous bruising which has already disappeared at 8mg pred. And afib is likely to mean you have to take an anticoagulant as protection against stroke.
Hi, I have very slowly tapered down from 80 mg to 0.25 mg per day over a 4-yr period, using the protocols suggested on this website). My inflammation markers are still normal, but at this dose, I simultaneously developed bilateral carpal tunnel, inflammation of a tendon in my ankle (or maybe the calcaneous bone is inflamed?), both knees mildly inflamed, and other stuff.... Will get my cortisol levels measured before I even think about upping the dose. Seems like a lot of people have their issues going to zero. Maybe 4 years on pred makes the adrenals inefficient?
They most certainly are likely to - the dose of pred you were on will definitely had suppressed cortisol production and the adrenals take time to get up to scratch - though it isn't just the adrenal glands themselves, it is the entire HPA axis (hypothalamus, pituitary, adrenals) that must get itself sorted out and in balance. Even after stopping pred entirely it can take up to a year before it all functions reliably and consistently.
Thank you for your knowledge and experience and sharing so graciously all you know about PMR. I was reading this post with interest as I am slowly reducing and even though my Dr and Pharmacist say 1.5 mg of Pred is nothing I know it is not! I know when I drop a 1/4 dose on the slow taper I feel it everywhere. My body has to adjust to it very slowly. What I am trying to say is that I think you are right even a tiny amount of Pred is keeping inflammation in check and I believe it will take me months to get my body systems back to normal when I /if I get off Pred. Your advice I believe is spot on.
Dear PMR Pro and everyone who has very kindly and helpfully responded,
All of you had something worthwhile to contribute and I realized that indeed it isn't just that I am hesitant to stop the Pred, but I do believe PMRPro and others are correct, and it is still doing something for me at this low dose. I am finally in a position to start exercising which for me means walking a lot and stopping on hills etc and I do feel it. Easy does it not to erase the progress this body has made seems sensible.
Thank you all for your wisdom and sharing your experiences. BTW, I was checked out by a very good cardio in France yesterday who said I am not having AFIB but it is a stress reaction that causes my weird heart to beat very quickly but different from an AFIB beat. I am living here with my husband after basically being at home in the States since March 2020. He was very very ill and the toll on me set all my physical issues into motion. I had all my cardio tests and info with me from NYU and this doctor did the EKG and Echo immediately and could see the results were the same as always with my irregularities so that is good news.
Now it is about the two of us doing our walking "exercise", staying as calm as we can through meditation and prayer to ease the PTSD we both have, and my gradually going down from my 1 mg Pred if possible. Again I am so grateful to you all for all your help. We had just arrived here and were met with a few challenges too many. And for all of us with unsightly bruises I will keep trying different forms of camouflage and report back! If anyone has any other ideas as to why my bruising actually is much worse now that I am almost off the Pred and my skin is transparent I would appreciate knowing. I believe PMRPro said she stopped bruising after going down on the Pred or did I misunderstand that?
Not sure bruising stops completely-I’ve been off Pred since September 2016 -and although I still get the occasional one, it quickly disappears. I put mine down to age!
The horrendous multiple bruises on my lower shins have stopped but I do still bruise a bit!
PS, I know all about the physical responses to long term poorly husbands - you aren't alone there, And I bet you had forgotten about the effect of an international home removal!!
I do recall that you lost your husband after a long illness. I am grateful to still have David but I am hyper-vigilant and I have to stop. And yes even arranging 5 months in France was ridiculous and exhausting. One suitcase filled with just meds so that we didn't have to spend the first month with new docs. But I will work on relaxing. The leg thing is so unsightly and embarrassing and another reminder of aging and learning to accept it. Thank you for reaching out.
Are you just there for 5 months? After all that effort!
My skin is improving now I'm at a lower dose of pred and the purpurae as opposed to bruising have stopped altogether. The local rheumy nurses used something called "Base Mixture" from a regional bio-cosmetics company containing prunus amygdalus dulcis oil, lavendula officinalis oil, limonene and geranium oil when I had some awful bruises on my entire hand after another nurse just pulled a drip out without warning me and pressing on it properly. I'm on anticoagulant therapy so I bled like a stuck pig. It did an impressive job. Maybe a French organics/herbal company would have something similar.
Thank you. I will see about this interesting mixture when I go to Italy for a week at some point and will also ask a few alternative practitioners here as well. Yes we go back 9/30. David will have another biopsy in Octoberand a few other things and then we will see what to do next. I have a couple of things to attend to as well. We are trying to get fit here so to speak to go back and hopefully get through a couple more things and then we can decide if we move or do something in between. We are determined to try and extract the well-being this place has always provided us every summer before COVID. Best to you.
That sounds a lovely cream mix. Are you allowed to quote the make? I buy a base cream and add the oils but it would be nice to see the price of your ready made one...
Did you take anything to help with the bruises? I am covered in arnica all the time. I am under the impression that the Pred makes your skin thinner so you bruise and you can't reverse it?
If you have been able to stop for a few days, you could try dropping off one day, then take pred, say do it for a week, dropping for two days then take pred, etc etc. It means that psychologically you know you can have some pred in the future, but you may find after a while you no longer need it.
I’ve been off pred 8 months but I was also anxious about stopping altogether. I stayed at 1 mgm for the last 6months then reduced to 0.5 for the last 6 weeks before stopping. I used the dsns taper, it’s very gradual over about 6 weeks.
I have been on1/2mg for 10 weeks and like you, wary re stopping. I have been tapering by 1/4mg since 2.5mg. I know I have to take the plunge eventually but will probably go to 1/4mg first. All the best. 🌻
Sounds as if you’re close. As always PMRpro’s advice sounds good - carry on slow taper with zero as the new dose. I’m tapering from 2.5 to 2 at the mo, so hoping to see myself in your position in the foreseeable. Perhaps one day you’ll find you’ve just forgotten to take it, and you’re OK, then you’ll know
i did think the same when I was trying to come off Pred…..I would get down to 1/2 a tablet then everything would ache so back up to 5 mg, did this twice.But this year I thought I would try again and at nearly 70 I told myself many of my aches and pains were age related.The bench mark I put was if my arms and shoulder were aching but I could still lift my arms above my head ( something I couldnt do and prompted my first visit to a doctor) then all aches were my new ‘normal’. Although it sounds stupid it took a bit of courage to stop even though I was only taking 1/4 a tablet and knew that wasnt really doing any good. Been off pred since beginning of March and still panic if my shoulders ache etc but so far so good. But that last bit of tablet was like a security blanket and it took me long time to lose that blanket.
you ask if many have managed to ‘cut the cord’….I wondered this once, but then realised most were probably not actively looking at this forum then! They don’t need help any more & will be in the land of freedom, not reading these, I reckon!!! DL stayed here to help, but most, I think, will have disappeared into the freeeedom!
interesting…no, I don’t know why, really! GCA is, in my mind, is worse than PMR! I am very very short sighted, & without lenses plus spectacles I couldn’t see the world beyond six inches from my nose with any clarity! I know you coped with it, but the thought of losing sight is dreadful. S x
Maybe because those of us who have been there with GCA want to stick around to help others ( that’s my raison d’etre for being here)
Plus once diagnosed and treated correctly (maybe doctors take it a bit more seriously and, much as they would like to, know they can’t rush you off the Pred as readily as PMR) I think it’s not as complex as PMR to navigate.
Yes, I reckon so! Maybe not quite as hard to get rid of…less flare issues etc, but can leave sightlessness (not a word, brain fog), in its wake. Plus the initial doses are much higher, & diagnosis seems harder to achieve. I ‘hang around’ because there are so many questions about sciatica, bursitis, osteoarthritis, fibromyalgia (less often), & stuff that’s not GCA/PMR, but things I actually have! I try to leave the PMR & GCA questions to the experts!! But I may post my current situation soon…need one more consultation with doctor first (adrenal insufficiency is subject matter!) Take care & enjoy tomorrow…for those of us near the south coast the sun is due to shine!! Thanks for all the support you give. S x
I’m feeling really good after going back as you suggested gone up to 12.5 from 7.5. Then back down 2.5 after 9:days then take it fom there ,also the last few days my breathing as got better and better , mabee it’s the Scarborough air 🤪 I have supposed to have AF
BUT all my friends who has it doesn’t get so out to breath as I do. When out of breath going up stairs I always feel is it my chest or heart,cos don’t get palpitations or pain 🤷🏽♂️
hi Ronzy, good news, but it was not me who suggested it!! I’m glad you are breathing better, I think it is the warmer weather!! My husband has AF & it does not make him breathless. BUT he has asthma, and he smoked for 30 years…that makes him breathless!! Good to see you are doing well! Take care, & breathe the Scarborough air!
I get out of breath when mine is bad Ronzy - maybe you do more than them when it is going on! Mind you, Scabs is pretty bracing - blow owt away! I can recommend Scabs A&E this weekend - the daughter and grandson are both working!
Hi there, I understand exactly what you are saying and thinking.....that final last step and 'letting go' is hard, when pred has been our 'friend' in keeping aches, pains and stiffness at bay. It took me several weeks to reach zero from 0.5mg, using the DSNS method, and when I finally got there I was watching like a hawk and 'feeling' for anything like the PMR symptoms in case they returned. I think you're right when you say as we get older we arrive at a new 'normal' and that some aches are due to age and wear and tear, and that we can tell the difference between that and PMR symptoms (painkillers see mine off, when I need to take them, which isn't every day). I've been off pred now for 12 months......I've kept a close eye though on my 'aches' just to be sure it's not symptoms returning, and had my bloods done for inflammatory markers, as it pays to be cautious. Good luck, you can do it, but as we all have said, do it slowly.
You have done well!! Don’t rush it. I’ve been the same up and down. Got down to 2 and three quarters 2 weeks ago and flaired back up to 5 again! It never occurred to me my horrific bruising was being caused by Pred! Hope you finally manage. 🤞
Great news that you are on such a low dose, and I understand what you mean by the training wheels!!
I to am down to 1 mg and have stayed there for just over a year. Back in January I tried to reduce to 1.5 mg on the DSNS but I flared up , so I waited a while and then started to reduce to 1.3/4 mg still using the DSNS , and so far so good. It seems the lower the dose the smaller the reduction needs to be. This I have learned from this site.
I guess where we have relied on pred for so long it’s going to be hard to let go, but I think if it’s done slowly and gradually then hopefully overtime it will just happen. We have to listen closely our bodies though and make judgments as we go.
Good luck to you, it seems like you have things covered x
What an uplifting and inspiring series of posts. Congratulations and continued good fortune. And a voice of thanks to the esteemed knowledgeable contributors, who I'm sure contributed in part to your successful efforts.
I agree with your feelings, bluegirl. I have slowly tapered from 40 mg in 1977 to 1.75 mg today. My dependence on pred now is probably more psychological than physical. It’s an old friend that has been with me for six years. Hard to let go.
I was in the exact situation as you. I made the jump to cut the cord and I am two weeks prednisone free. Like you, I am feeling the arthritis pain in my hands and back which I did not feel while on steroids. I am not feeling the same pain as I did with PMR. I think after being on prednisone for 4 years, I was using it as a psychological crutch. I def felt better on 1 mg than I do now though. I don’t know if I’ll stay off of it or if the PMR will stay quiet. My inflammatory markers were up a bit last labs. Sed rate was 47 & CRP was 16. I will repeat them in two weeks. They never were normal the entire time I was on prednisone, but they had gone down. If they are higher next lab work, I may return to 1 mg as maintenance dose. I hope you are successful if you take the plunge to stop the steroids.
I do relate to what you say, about wanting to cut the cord!
Piglette has a suggestion I approve of - to gradually increase days you take zero pred. I did this back in 2020. In 2019 I decided to try to get to zero (from 2 at that time) after four years on pred, and using the dead slow nearly stop method, but doing each step twice, I took three months each to taper in .5 mg steps. My final taper was using zero as my "new dose".
Unfortunately there is a sequel to what seemed to be a successful strategy. Within six weeks I was back on pred, although still at a low dose. And then a few months later I had a major flare, which I at first blamed on osteoarthritis, but when it became apparent that some of the symptoms were an awful lot like what I'd had in 2014-15 before PMR diagnosed I tried higher dose of pred. Miracle! This was 2021, and it took me a very long time to get back to 2 mg again, although I was in single figure dosage except a couple of days at 10.
Today I take the occasional 1 mg as an experiment as 1.5 seems to have been okay for some time. This time I will not adhere to a schedule, other than to not taper any faster than DSNS, but have been paying attention to how I feel. I will not accept that any PMR symptom is "pred withdrawal" but taper as slowly as I must to avoid any pred withdrawal, experience having taught me that pred withdrawal might actually be a PMR niggle.
This post and responses is very uplifting and hopeful and serves as a reminder that people with PMR and GCA actually do get down this low dosage wise. Thanks to all who responded.
I was diagnosed Nov. 2021. I have not figured it out. I'm at 4mg of mythlprednisone. I made it to 2mg once, but the old pains returned. back up to 8, then slowly back down to current 4mg. I still have a way to go.. I can't wait to tell it goodbye forever... Good luck..
That part about you even looking at your skin will make it bruise, yes here too. and i am on Prilosec probably for the rest of my life..
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Back up to 40 mg pred
5 mg Pred when to taper again
feet problems - on 3 mg Pred
UGH...UP TO 60 MG PRED
