I have been down to 1mg of prednisone since January and toggling back and forth between 1 and 1/2 mg since April. But I feel mentally out of whack. Paranoid. Insecure. Incompetent. Stupid compared to others. Depressed. Anxious. This curtain came down on me when I was with people I have always liked and had fun with. If i resort to an anti-depressant, as I feel I must, what do folks suggest. I went through a similar but less intense bout more than a year ago and my doc gave me zoloft. Wasn't great but she did not want to use anything else.
Heebeejeebies on low pred??: I have been down to... - PMRGCAuk
Heebeejeebies on low pred??
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Greytree
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Personally I would not consider taking anti depressants unless a doctor said there was no other choice. They really are not a good thing to start on if you don’t have to.
Ok. I will hold off (I have a lot if the zoloft left that was Rxed) Thanks.
That's no strictly true these days.These meds are often used at low doses to help manage short term adjustments in pain , neurological conditions and illness induced mental health swings.
They shouldn't be viewed as a negative and actually taking them early on when you recognise an issue often means that you struggle less in recovery or tapering from other medications and reduce how long you may need to take the meds or suffer with any mental health issues.
They shouldn't be viewed as a last resort like they were in the past.
perhaps it is because I have worked with the pharmaceutical industry for thirty years that I have become sceptical!
It's the balance in new approaches that counts, your right that there has been occasion of doctors just upping the dose or giving too much, too early in the past.
DorsetLadyPMRGCAuk volunteer
Think most of what you describe is down to adrenals not functioning as they should… and rather than throw an antidepressant you, your doctor might be better looking at that.
Have your had your adrenal function checked - at all. A simple blood test done early morning would be starter.. and then any more detailed one if necessary and a referral to endocrinologist.
did suggest same thing in your post last time around - see link -
healthunlocked.com/pmrgcauk...
I looked for previous post I had done but apparently could not find that one! My apologies. Don't know why this problem would come and go.
No need to apologise.. and you should can find all your posts on your profile page.
Why the problem comes and goes? - is probably just life - some days the adrenals have enough to cope, other days they don’t…. also depends on dose of Pred… last time you were on 3.5/4mg - and then they obviously recovered a bit, but now you are 0.5/1mg they are struggling again.
Aha! Did not remember that about the previous!
PMRproAmbassador
Could be adrenal insufficiency. We don't like the toggling between two doses like that to reduce, we think it confuses your body and much prefer a slower approach to getting from 1 to 1/2 or cutting the tablets to get about the same dose every day.
It's a rock and a hard place isn't it?
The doc had recommended the toggling. Will stick to 1/2 now!!!
Yeah. Had s/he ever tried reducing the dose? A lot of them have this thing about alternating doses - our slowed tapers are a bit less of a shock ...
Have you considered reducing the steps to 0.25 mg? It’s not difficult to cut the 1 mg tabs in quarters. Once I was at 3 or 3.5 mg (I forget) I went from 0.5 mg steps to 0.25 mg steps. Still used 5 week process, sometimes skipping week 4. No issues. Disease ran its course in 2.5 years.
Have you had any changes in life? Doing anything extra physically, mentally or emotionally? I’m asking in case any extra need for cortisol may not be happening and low cortisol really messes with one’s emotions. Just because your adrenals are coping under normal situations, doesn’t mean it can pay out extra suddenly or for a sustained period. It was sustained cortisol need that was my Achilles heel.
Where does the feeling come from that you “must” have an antidepressant? Ask yourself and write the answer to, I must have one because…..fill the blank quickly and honestly. You don’t need to tell us.
Thanks for that idea. Yes, i just haf a strenuous week. Had set up a cabin for me and four other women in the Smoky mountains. I drove the four hours there and back with 3. We hiked for three days. Had a big time but ai am exhausted! I just don't expect it to affect me mentally. Hmmm.
Um - I'm tired just READING it. And when you are tired - and maybe disappointed you couldn't deal with it better - you are likely to feel down.
I have an absent kidney. Does that mean I have only one adrenal gland?
Thought you were going to finish writing at the end that it was wishful thinking….. I can’t manage to walk round my garden! Amazing, be careful…
Me too "Longtimer" ! just a walk around garden and perhaps water a few pots and I am done in ... I have been off Pred for some time now .. I was getting on fine , well fine for me at 87 years and all seem to go down hill after I blacked out and was in hospital for 3 days . I had lots of tests and my Adrenals were working OK , but the day I came out they gave me a blood pressure tablet " Bisoprolol " and I have not been right since. I didn't look at the side affects and I didn't get a chance to anyway , and no counselling about it anyway but I seem to have picked up all the worst side affects ... weak muscles, cough , runny nose, itchy skin ( no rash) The itchy skin just about drove me mad , thank goodness that has gone now , but I still have all the others ! Also the leaflet said I should have been monitored more frequently If I was also taking "Eye gel Timolol" ( both beta blockers) I was not monitored ! Also to start the lowest dose 2.5mg should be halved to 1.25 for the first week and the doctor will then decide how to increase .. I am gutted none of these safe guards were done ... I stopped taking this pill after 54 days .. I did it gradually for a week ,, as I could not get an appointment with my doctor and after 3 weeks I got a phone appointment and when I told her all this it seemed to go on deaf ears ... eventually I phoned my Glaucoma clinic at the hospital and they have made the changes and I am now having appointments every month ...
I feel very let down , the surgery used to be one of the best , now it has gone down and everyone complains . I am having gentle Physio and even that I arranged myself ..it is part of the NHS but separate named "DynamicHealth MSKSpecialists "
Dang! As we would say (I would say) in the U.S. - that sucks. Healthcare so many places seems to have to be SelfHealthcare. Good for you to persist and get monthly appointments and gentle PT, which I hope gets you over the hump caused by previous, misguided treatments.
Good that you have got yourself sorted, but we shouldn’t have to! I have been having balance issues among others so GP arranged Brain scan, another GP rang with results said I need to see Neurology but there’s a years wait said he would fast forward me to the Older Person s clinic! They would fast forward me, saw doctor there she lectured me for being on steroids for 12 years, I said that’s not what I’m here for, I said are you sending me to Neurology? She said why would I?….she hadn’t read my notes! She said the blood vessels swollen in your brain must be Cholesterol! I need to ring my GP to move it on, or I will pay to go private. It is quiet frightening how bad things have got. Hope you can get yourself sorted soon. Keep us posted.
Backdoor privatisation ...
Too right !I have to wait atleast 3 weeks for a doctor appointment and that is a phone one and I have had to try several times having to phone at 8am only to hear I am 15 to 9th in the queue and then only to hear all appointments gone when atlast the phone is answered ! Yet I can get my Physio the same day !
I was 24 in the cue last week
I hope you got a face to face appointment after all that time and not a phone call which was useless ?
It’s when we have several things at once that it be too much. Hope things improve for you soon.
Thank you Longtimer I hope you get sorted too ...
I just read your profile and I noticed and loved that you find restfulness and sanctuary in your garden, I too am the same ... I cannot really garden I have no strength but I have a lovely lady Gardener .. This winter was hard and long so I missed the relaxation it provided .. You have really had a very hard time and I think we baffle the doctors and even the specialists .. and HealthUnlocked provides us with another sanctuary and we realise we are not alone ...
You are so right. I am sitting in my summerhouse right now looking at my Rhododendrons and Wisteria they are wonderful this year must be all the rain we had, it’s my paradise, even though in lots of pain and heavy fatigue! We do our best. Z
Wish I knew how to send a photo, dipsy head!
In this link-
healthunlocked.com/pmrgcauk...
But relevant para here --
4. TO ADD A PICTURE TO A REPLY IN POST
After you have written your reply, just tap the picture icon below - on PC/Laptop it will take you direct to your pictures, on iPhone/iPad you will have choices -
a. Photo Library
b.Take Photo or
c. Choose file.
If you select library, you will be taken you to your pictures on you device. Take photo is obvious, and select file takes you to your files on your device. Select what you want and select Choose or Use (varies) - it will also ask you to add a title.
Picture should then appear - reply as usual.
Have sent two photos, goodness knows where they have floated off to! Might try again, Thank you.
You can only attach one at a time…. Which is another HU pain!
Ok
DorsetLadyPMRGCAuk volunteer
Last time you were on 4/3.5mg now you are on 1/0.5mg Pred - so in between your adrenals rallied a little, but now they are struggling again… and life has a habit of not doing as you expect. But seeing what you’ve done recently, no real surprise… pace yourself is the mantra 😉
I get it now! (-: Thanks.
Thanks everyone for your thoughts! I feel better already (from a lying down position). (-:
Hi Greytree. I love the term "Heebeejeebies! And understand the experience. Do try and avoid antidepressants. I was on prozac for 10 years, and am really much better off having dropped them last summer. I prefer the ups and downs emotionally and mentally, to the grey zombie feeling. I admire your stamina - pottering around the house and garden exhausts me!
I think you found your solution - wow that is some energetic holiday when adrenals aren't on top form.
I am on the same level as you, 0.75 and at the start I had days when I felt back to 'normal' - feeling positive and waking up with enthusiasm for the day to come.
But over the last week the weepy-wobblies have crept back. I feel low-mood, irritable, shaky, and brain foggy. I recognise these as having happened many times in the past at various low pred levels and presume that 'this, too, will pass.'
I use some effective techniques for raising mood - things like heart coherence, gratitude, EFT tapping, walking in nature (you may have done too much of this lately) etc.
Also, I am going down by 0.25 a month, so from 1 to 0.75 and next week to 0.5. I think that is a gentler way of reducing - though I guess it isn't problem-free.
(I love how this site gives us glimpses into other people's lives. Cabin in the Smokey Mountains - lovely.)
I've never heard of heart coherence and have looked up the tapping. Interesting! Getting the free pamphlet from site below. Cabins for rent in the Smokies, yes. Every year there is an event held called the Great Smoky Mountains Wildflower Pilgrimage (April 23-26 next year), where scores of walks, hikes, talks, etc. are held. I recommend it! Just don't overdo like I did. (-:
I've never taken an antidepressant that made me feel better than I did without it. And believe me, I tried almost all of them (or so it seems) in my younger years. Since being on pred and coincidentally also being retired, I have mostly felt quite happy, apart from being fed up that my body is letting me down. During that time, whenever I do feel low, it is almost 100% my body telling me that I need a wee bit more rest. I was going to ask you if maybe you are not just tired and then reading down, I see that you have said that you are. I would have a couple of self care days and just do enjoyable relaxing non strenuous things and see if you feel better then.
I’m 70 and have been on prednisone for almost 4 years. I’ve gotten down to 1/2 mg daily and understand how you’re feeling. I had a very busy week including golf, pickleball and bowling as well as managing a breakfast get together at church!! In the middle of the week I felt sore, extremely tired and depressed. I’m trying to figure out what I can do and still feel well. I don’t want to stop athletic activities completely but I do see the need to rest a day in between. I had thought about a mood elevator too but find that having a fairly inactive day between activities seems to work. Good work for both of us getting down this far! This is the first time I’ve been able to get to this low dose!
You are right! Almost the same issues. And I turn 75 this month. Am impressed with your activities!
It certainly sounds that as your adrenals are taking over they are going into overdrive and over doing your autonomic nerve reactions to the things and people around you . Swings in adrenaline can cause a great deal of these mood swings and then you start to feel depressed because you don't feel like you can enjoy your life or the company of others they way you want to.Plus, you did overdo it physically in your bodies opinion.
I do have a suggestion here.
I don't take a medication for mental health needs , but I take a medication that is " on book" used for anxiety and depression.
Off book , it's used to help with controlling adrenaline and neurological pain and problems so it's really helpful for those with neuropathy and Fibro as well as rapid dips and spikes in mood linked to the Autonomic Nervous System.
You can take one a day before bed starting at a low dose of 10 mg - 25 mg.
Some people take two doses a day.
The medication I believe is called Duloxetine, or Cymbalta I believe in the US.
I had no side effects with this , and neither did my daughter whom has similar other health issues to me (Fibro, EDS. Dysautonomia , Chronic Migraine) but she also suffers with mood swings and M.E/ CFS. It made a big difference to her anxiety levels and brain fog.
Duloxetine is an SNRI , which means it helps target a more broad spread of health issues , because it helps to control the response of your autonomic nervous system and prevent Central Nervous Sensitivity Syndrome, often the trigger for many of those niggling mental and physical side effects we feel as the adrenals try to get back into control of the body.
Zoloft ( Sertaline) is an SSRI, or serotonin reuptake inhibitor , so targets more of the responses of the brain rather than the body as a whole.
Personally, if you are also suffering with the occasional side effects to the body of steroids withdrawal as well as it affecting the mind , I'd probably trial Duloxetine first.
If it doesn't help after 4-6 weeks try the Zoloft again.
I'd also see if there are any CBT or Chronic Pain/ Pacing courses available to join via your GP or Physiotherapy.
They can really help you slowly learn pacing techniques and coping exercises to help reduce your sensitivity to environment and get used to taking charge of the way your body and brain reacts to things again.
If you need a medication to help with Mental Health or Neurological issues, even short term, while you still recover and taper your steroids , do use one.
It's sensible and proactive to do that and you are doing well recognising that you have an issue at the moment and want to get control of it.
More antidepressants are prescribed these days for pain and to help the brain and body adjust to various health problems than are prescribed just for things like Anxiety alone.
No body should ever be made to feel stigmatized for taking control of their lives and using all the methods available to do it.
It's not a badge of honour to say I don't or won't take a pill on principle . Nor sensible to draw a line in the sand saying I won't take a drug just because it says antidepressant or anti anxiety on the label, it's a badge of honour to try to take control early on , even if you need a pill to help you do it. Don't be put off by others opinions.
Hope things improve for you , let us know how you get on.
The point you are at in recovery is a very bumpy , confusing and tiring one even if your PMR has left the building , recovery after it and after steroids can take time, it can take up to a year after you get to Zero to fully feel yourself again , so how you feel is normal .
Keep writing if you need some support. Hugs. Bee
Thanks so much! I agree that sometimes folks - myself included - can need more help. My doc gave me Cymbalta in years past. It was one of two meds I've had over the years. Zoloft being the other more recent one (they were both generics but the names are harder for me to remember). I feel like I am pulling through right now, but will remember that Cymbalta was the more successful of the two if I don't make it.
Right now I am feeling hopeful and looking forward to fewer, gentler activities that not only occupy me but are satisfying.
Yes it's not surprising you felt more emotional it's a common Neurological response from your body when it's telling you to put the brakes on and slow down.People forget sometimes the short term feelings if confusion , anxiety and sadness are a physical stress response not just a mental health or thinking reaction.
Always feel hopeful , when you get your pace of life right each day and give your body enough rest and time to keep recovering things will slot in to place , even if you have the occasional run of funny moods.
It's takes time and patience we can't just jump back on the bike when the illness has gone and the pills are finished, the body needs chance to get it's strength back again.
Take care , Bee
Wonderful, supportive post. I'm sure it will help many of us. Thank you for your wisdom.
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