I'm scared. I think if I don't quit working I'm never going to get off the prednisone. My work, though, has been my passion for two and a half decades. Other than my family, it's the thing I love most in the world. Please indulge me a brief description of what I do . . .
25 years ago I founded a nonprofit called DanceSafe, which has grown into the largest peer-based drug education and harm reduction nonprofit in the US. We have volunteer chapters all over the country. It started in 1998 when counterfeit ecstasy tablets began killing young people in the rave culture. I began setting up booths at events in the San Francisco Bay Area where we would test ecstasy tablets for people using a chemical reagents that could detect the counterfeit pills.
DanceSafe grew quickly and spread across the US and Canada. Similar organizations also formed throughout Europe and the UK. (The org in the UK is called "The Loop".)
Then, in 2016, when the fentanyl crisis hit here in the US, I developed an immunoassay test strip that could detect fentanyl in a drug sample. We began selling fentanyl test strips through the website. Then last October, I created new and improved fentanyl test strip that worked even better. And now DanceSafe is making over $2.5 million a year selling fentanyl test strips to state and county health departments and various harm reduction programs all around the world.
I am an advisor to the FDA and CDC, and I do trainings and media interviews almost daily. I feel blessed to have created something that is helping to save so many people's lives. My work is so rewarding.
But now I think I have to give it all up.
I had my first experience of adrenal insufficiency over the past few weeks and it was absolutely terrible. I think the bouts started happening fairly consistently about a month ago, when I got to 7 mg in my taper. Along with feeling sick, I become extremely irritable, which affects both my personal and professional relationships. And now it feels constant.
I do not feel myself anymore, and I do not like how I am. I think my body is no longer producing enough cortisol to handle the level of stress that my work brings on, and in order to get off the prednisone I need to retire.
It scares me to give up my activism, especially because last October I finally, for the first time, started making decent money (when the fentanyl test strip program took off). I don't know how I am going to support my family if I retire, but given the stressful nature of my work, I don't think there's any other way to get off the prednisone and heal.
Mainly I want my old self back.
Has anyone else here had to do something like this? How did you do it? I seek any advice you might have.
Thank you,
Emanuel
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As you know PMR is life changing. I am a director of a family business dealing with multi national clients. I did have to turn my world upside down so that the PMR did not take over my life, but I could still be involved. It did mean me delegating things, saying no instead of yes and generally changing the way I worked. I am still an activist too in spite of PMR!
I am not an expert but have you discussed this with your doctor. It is possible that you could have hydrocortisone to help with your adrenal insufficiency. I really think you should get advice before making your decision
It doesn't work alongside pred -if you were to take both, then your corticosteroid level would be higher, the adrenal function wouldn't start to wake up. It is possible to use hydrocortisone instead of pred but it doesn't manage the PMR inflammation as well so you would tend to get breakthrough symptoms.
Where it may be used is when you persist with the lower pred to encourage return of adrenal function but carry a "rescue dose" of hydrocortisone to use if you were to become ill as a result of a threatened adrenal crisis.
You are obviously a very focussed, motivated person, and perversely I think this has had an adverse affect on how you have approached and managed your PMR.
I appreciate you started at higher doses than we would normally expect for PMR,and that in the early days you needed and were able to reduce quite quickly…but in a matter of months you have got to 5mg [albeit that you have had to increase due to flaring]. I know you say you haven’t had a return of PMR symptoms, but I do worry that you have ploughed on through issues that actually have been just that.
A more measured taper may have also helped your adrenals, which are obviously now coming into play.
As for you main concern, can you continue working - yes you can, but you need to seriously think about delegating a lot of the daily training, and perhaps some of the media work to others. You are way too stressed try to keep all the balls in the air… you need to let others catch a few.
Deep down I’m guessing you don’t want to step away completely- and I don’t think that is necessary or probably good for you personally in the long run… but you do need to re-evaluate and find a balance.
You may want your old life back… and you will one day, but at the moment that is just not on the cards.
I make no apology for sounding like your mother, in fact you are about the age my son is, so I’ll say to you what I’d say to him.
It may be scary, but stop and think rationally. Consider what you can, and can’t do, and ask for help, it’s not a sign of weakness it’s a sign of taking control. No-one is going to think less of you. Discuss your work issues with colleagues/other business associates … and medical issues your doctors. But most of all be honest to yourself.
Thank you DL. Yes I need to delegate. That's going to be hard for me, but I need to learn how to do it.
And thank you for acting like my mom. My mom actually passed away few months ago. She lived in Blackpool (married a Brit 30 years ago), and she struggled with Alzheimer's over the last few years of her life. She was driven like me. A real viking.
So what I have learned through this is that I need to manage my stress as well as prednisone, and it's going to be a long process.
I took 9 mg today. Can you look at my PMR journal and tell me what you think I should do? Here is a copy/paste from my PMR journal since June 28th. Basically I felt fine going from 8 mg to 6 mg between June 28th and July 13th. But then when I hit 5 mg on June 14th, things started happening, and by July 29th, I went back up to 8 mg, and today I took 9 mg. What do you think I should do now?
June 28 - 8 mg prednisone - Down to eight. Woot woot!
June 29 - 8 mg prednisone
June 30 - 8 mg prednisone
July 1 - 8 mg prednisone
July 2 - 8 mg prednisone
July 3 - 7 mg prednisone - Down to seven!
July 4 - 7 mg prednisone
July 5 - 7 mg prednisone
July 6 - 7 mg prednisone
July 7 - 7 mg prednisone
July 8 - 7 mg prednisone
July 9 - 7 mg prednisone
July 10 - 6 mg prednisone
July 11 - 6 mg prednisone
July 12 - 6 mg prednisone
July 13 - 6 mg prednisone
July 14 - 5 mg prednisone
July 15 - 5 mg prednisone
July 16 - 5 mg prednisone
July 17 - 5 mg prednisone
July 18 - 5 mg prednisone - I have had mild arthritic pain in my hands for the past three days. This likely means my adrenal glands need to start coming back online.
July 19 - 5 mg prednisone
July 20 - 5 mg prednisone - Really tired/fatigued the past few days. Don’t know what to make of it but thinking it’s pred withdrawal. Still have mild pain in my hands.
July 21 - 5 mg prednisone - mild hand pain still.
July 22 - 5 mg prednisone
July 23 - 5 mg prednisone
July 24 - 5 mg prednisone - I've had mild Nausea the past few days. Not sure what this is. Feels strange. It's there all the time.
July 25 - 5 mg prednisone - This nausea-like feeling in my gut hasn't gone away.
July 26 - 5 mg prednisone - Nausea still. Also diarrhea (for the past few days) and really tired. Starting to think this might be related to PMR, or prednisone withdrawal.
July 27 - 5 mg prednisone
July 28 - 5 mg prednisone
July 29 - 8 mg prednisone - I went up to 8 mg today. Symptoms are way too much. Getting worse for many days. I don’t know if they are disease manifestation or prednisone withdrawal but it absolutely *has* to be one or the other.
Sorry to hear about your mom…. It’s a difficult thing to have to contend with whilst you have PMR or GCA, many of us know how much bereavement can impact on our illnesses.
First thing I would say on your journal [and sorry to sound like a broken record ] but much too fast a reduction. 1mg a month is nearer the mark, and some struggle at that.
Even though you may not have had any “typical” PMR symptoms, a week at each dose is suicidal. It can take at least 2 weeks sometimes longer to know your current dose is okay before you taper. …. Do that 2, 3 or 4 times on the trot - and you end up flaring, but also not knowing what was your last dose that had everything under control, That makes it difficult to then gauge what dose you need to go back to when you flare. -usual advice is to add 5mg to that dose.
Another issue with reducing as you have, is that it doesn’t give your adrenals a chance to catch up either - so you have a double whammy- too little Pred for illness, and adrenals floundering.
So - re-evaluation time again… personal opinion only [others may not agree] ..first get your flare under control - so if you take 7mg or 8 mg as being last ‘good’ dose, add 5mg to that giving either 12mg or 13mg - stay there for 7-10 days [full advice in link below] - then drop back down to 8mg, stay there for a least 2 weeks, and then recommence tapers- monthly!
Hopefully the increase will also help with the nausea etc….
Once that has happened, you can then concentrate on adrenals…and a slower taper is good for them….
It may be a longer and slower process than you would like, but it is the only way… much better slow and under control - that too fast and feeling rubbish!
I have to echo DL - far far too fast. All that happens when you try to rush is that it eventually catches you up and you have no idea where it went pear-shaped. We have a mantra: the lower, the slower. Once you are under 10mg you have two things to balance, keeping the PMR in check AND encouraging adrenal function to wake up. And the latter can take a lot longer than you think. There is no wonder you feel so tired and going back, having a bit rest and allowing yourself to recover may mean you can cope with a lot more than you can at present. The nausea and other gut problems are typical of adrenals not keeping up with the pred reduction - and you seem to have tried to reduce by 3mg in less than 3 weeks. You might do that after a few WEEKS on pred above 10mg, but not after a few months. Everyone is different and you can't see on a dial how things are settling down - you aren't a car. At this stage many people notice the difference if they drop 1mg, and they settle for 1/2mg.
And as DL also says, losing your mum will continue to be a factor for a time, it isn't all done and dusted in a few months either.
So glad you described your tapering regime. I think it's pretty likely that you are feeling so awful because of the breakneck speed of your taper. Once you slow down and take it much slower in future as others have advised you are likely to feel much better. But give yourself time to feel better!
Once they are settled your adrenals may indeed grumble, but they won't need to scream at you. And don't forget pred affects the whole body so there are other things screaming at the moment, like your digestive system.
There is no reason why you should give up the fantastic work that you love, but as everyone has said, you need to slow down, involve others, and take more care of yourself, by for instance using wellbeing techniques. Exactly the advice you would give to other people ...
I'm taking 9 mg again today. Late last night I got that nausea-like feeling in my gut again. If this is adrenal fatigue (low cortisol), could it really have taken three weeks before it showed up? I felt totally fine at 8, 7 and 6 mg. Three whole weeks feeling fine. Then I slowly started feeling sick at 5 mg.
Also, Viveka. The name of my film company is Viveka Films. Here's one short documentary I produced... youtube.com/watch?v=W9iKx2M...
EDIT - Actually, after reading everything below, and then re-reading DL's message above, I'm going to take 12 mg today, not 9. I'll stay at 12 for four days and then drop to 8, where I *think* I am stable.
Hi, have replied further down about the 12mg for 4 days, but just wanted to say video link doesn’t want to play- may be because I’m in UK - so will have a play… when link is okay you should be able to see first frame of video in your post .
I'm not one of the technical experts here - I'm an expert in trying to get off pred too quickly during the first year of GCA till I learned better. Dont know about the nausea - very often there is no logical reason for things. If it persists could be something else, so best see doc. I just know if I had gone down as fast as you I would have been a gibbering wreck.
Did you name your channel after the sanskrit 'viveka'? Interestingly I did a course on yoga and the immune system recently and the key theme was viveka - basically our wayward immune systems are not applying it and need to rebuild discrimination.
Had a look at your vid - very interesting; I've seen a lot of info on the use of MDMA and ketamine etc in PTSD, fear of death and spiritual development; I think in the US, IONS are doing research into using it with veterans.
Yes it was based on the Sanskrit word. In the vedantic texts its meaning is "discrimination between the real and the unreal," and of course all this around us is the unreal.
I realize that I am so attached to these worldly things (my work) and that I don't practice viveka very much. Maybe it's the reason I got PMR.
I had to give up a job that I thought very worthwhile because of PMR, then GCA/LVV 2 years ago. It was a tough thing to do, but there was no choice. But you're still young! and if there's any way you could possibly delegate or keep the business going in some reduced way so that it is ready there waiting for you when you get better, then I would definitely go for that.
OTOH, if it is not possible and you have to give up work to get better, it is not the end of everything! There are other ways to be worthwhile. I hope you can work something out 🙂
Completely agree with DL and will also add that from 8mg you might want to consider dropping by 0.5mg at a time rather than 1mg. I work on a five week taper and even then only drop if I feel secure at that dose. It might feel slow but if it works and allows you to lead a relatively normal life it makes sense.
Hi, I also concur with all that DL has said and I wanted to add that maybe you could start to think of Pred as the “enabler” to your lifestyle and activity instead of a demon drug that does you harm, like the very drugs you have helped to banish.
My family adopted a homeopathic approach to medication and my mum is 96 and going strong, so I was horrified when I was prescribed steroids. But they gave me back my life and I have worked with them to maintain an active lifestyle. I stuck at 8mg because my body needed it, thus not having to deal with the adrenal insufficiency and almost pain free. I took 3mg at bedtime and 5mg in the morning. It worked for me.
Your work is admirable and important, but your driven personality has almost certainly brought on the PMR, now you have to work with it and let pred support you . Best wishes, Chrissie
Don't make any decisions yet. As both DL and Pro say, your taper was way way too fast, no wonder you feel awful and thinking you can't carry on working. I was advised this week by my soon to be new consultant to reduce by 0.5mg over six weeks. You have rushed and now feel deflated. I used to work on current affairs and the Head of News and Current Affairs at the time (For Channel 4) was called Dorothy Byrne, who was going through PMR, and connected with this charity at one point I believe. It was a very high pressured job that held huge responsibility and she was very driven, so it can be done, you just need to sit down and look at what is important and what others can do, I think what you have done in your work is brilliant and clearly a need for it so take your time, deep breath and regroup.
So sorry to hear about your Mum. That alone has added to your stress . If you are a driven, passionate and high achiever it is so difficult. Not saying PMR is not horrible for everyone. However you can not treat the condition like you do business objectives. The best advice I have received being part of this group is very slow taper. DL advice I have followed to the letter and it has helped me have some normality in my life. I had to defy my Rheumy who was tapering me too quick and resulted in major flair ups. He wasn't impressed but told him my body. I had to reduce the stress parts, refuse assignments/clients etc which I found sooooo difficult. I also paired back my spending and explained to my family I had to do this for health/sanity reasons. We all think we can't do it, business won't survive without our 200% commitment. It does, you delegate, manage, develop a successor. As we all know, money, materialism are not important. Without good health the rest is irrevalent. Good luck, it will not be easy, but from your mails and good advice of this group you will get there. This is a community of fellow suffers who are the only people who totally understand. Although your loved ones try it is impossible to understand. Thank you DL for always your great no nonsense advice and to all who listen and advise on this site
Great advice already. The only thing that I can add is that if you don't take the rest that your body craves, your body will make the decision for you eventually. That's the voice of experience speaking. I ran myself into the ground and had to stop work for good. You are very hard on yourself, so in the nicest possible way, give yourself a break. If you want to be able to continue with your passion, take some R&R and use that time to gain some headspace to figure out your priorities and then find some middle ground. Don't do it for the sake of your work, or your family, do it for yourself. Since I joined the group a few weeks ago, it has been my observation that so many people here with PMR and GCA are passionate driven talented people and then they crashed through ill health. There might be a theme going on there.
The work you do is simply wonderful and it would be such a shame to have to give it up just when you are in a good financial position to provide for your family.
I don't think (m)any of us on here have tapered as fast as you have - as PMRpro always says, you're not racing relentlessly to zero pred! My Rheumatologist kept me on 5mg pred for 5 months from January to May this year and now I'm tapering at 0.5mg / month!
You have received so much good advice which I hope will help. Remember that PMR should go into remission at some stage, so if you can get over this hurdle, you ought to be able to look forward to many years PMR-free.....
Agree with others. I think you will find that if you slow way down on your taper and stop yo-yoing you’ll feel much better and your adrenals will be given some time (months not weeks) to wake up. I worked full time as the director of a cardiac surgical ICU throughout most of my PMR journey. But I also stayed at 2-4 mg for a couple years. I didn’t taper any more than 1 mg (usually 1/2) every couple months. If I had any symptoms I’d wait. Unfortunately I then got GCA and I now think the stress in my life at the time may have contributed. I learned there is as much satisfaction in helping/letting others succeed by delegating and mentoring…and reducing our own stress.
When I finally got diagnosed I cut down my hours (one hour less a day - working in two secondary schools). Of course, I came in earlier to make sure I got the job done. When I got home I would lay down for an hour then carry on. Your job/life sounds pretty stressful and PMR and stress are not great together. Can you cut back a bit? My PMR went away after 6 years. I made good use of steroids and cut down very slowly. My rheumy cut me loose after a year (told me to come off steroids in a year hahaha) but I just did it slowly and read this forum daily as my support system.
It helps that I am lazy. When I am tired I go home and get in bed with a book.
I developed PMR out of the blue while building my house. I have managed to carry on with, for a time, less lifting and a gentler pace. Friends and partner( now wife) have been very helpful in facilitating this. However, I found that the advice on the forum about a slow taper is the key. Go down slowly and if the symptoms start to re-assert, pause, or on one occasion, go back up a step. As I could carry on doing what was important to me, I felt in control and it became almost a game I was playing with the pred. It's wonderful stuff but you do need to incorporate a feedback loop from your body. Three years later, I have our house signed off by Building Control ("to code") and have got down to 1mg! Jeremy.
I just took two more mg. So I did 14 mg today. I think I need to stop fearing it, and I *do* have PMR symptoms still as much as I wanted to deny it. Mild, but they are there still.
The earlier in the day that you take the pred, the better. The cytokines (inflammatory material) are released at around 4am, so the sooner the pred gets to work on them, the better relief from your symptoms will be. Some folk take their pred at 2am so that the pred is there waiting! (It's nearly 3pm here in the UK.)
I don't comment much here but I think I can add a response for you on this one.
First off, amazing work on the drugs front. You are clearly committed and passionate about your work.
This doesn't have to be the end either as I found in my case. I'm now at 3mg and found the 8-6mg stretch very challenging because of fatigue. I work full time.
I'm absolutely fine now having got over that very tiring time by absolutely pacing myself meticulously but also pushing myself on odd days with adequate rest afterwards. Work had to be to rule, delegate and cut your hours a bit if possible.
Another thing to consider is how you taper. I could see further down that you look to be dropping a full mg at a time and you are dropping very quickly. As your dose reduces, a full mg is much higher percentage of your overall dose and it's a significant drop. Do try a slower taper as this will smooth the worst of the bumps somewhat and will keep you on a more consistent dose without rollercoasting. The FAQS have some good plans to try.
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