Doing well but....: Have posted before. On 4mg Pred... - PMRGCAuk

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Doing well but....

Heinrich7 profile image
21 Replies

Have posted before. On 4mg Pred for PMR. Went off for 2 weeks but symptoms were returning. So went back on low dose. No pains now. According to one reply, they thought might be Pred. Withdrawal. Is there such a thing? I know - I’m not as knowledgeable as I could be. I just don’t have patience to study. I’m busy with other stuff.

Really, my question is: I suffer from feeling mentally crappy. Depression Anxiety Panic. And I really do have my shit together. My Book Launch was really good. So I don’t have that to worry about anymore. I have everything going for me - loving, supportive husband etc etc. I talk to a Social Worker every other week or so. I do have a history of depression from childhood traumas. Received lots of counselling in my married, motherhood years. But still have difficulty. Too many dumb things bother me. Hubby is even keel, thank God and he loves me unconditionally and it makes him sad that I suffer mentally. Even though I try to do ALL the right things. Yoga walking vitamins mindfulness and holding close to my faith.

Was in Effexor xr for over 5 years. Went off in spring 2017. I think it helped me. Should I go back on something OR is it the damn Pred. and symptoms of it and the PMR.

I am sick of feeling crappy. And as I said ‘I have my shit together’ so I am very keen on living a healthy happy life!!!

Really appreciate comments and I do feel badly for those who suffer physically so much more than I. But mental illness is real!

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Heinrich7 profile image
Heinrich7
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21 Replies
fmkkm profile image
fmkkm

Hi Heinrich,

I am a victim of childhood trauma. The prednisone has made my brain a bit raw and I occasionally have panic attacks. I use CBD oil and it has helped in this regard. It is not marijuana, not addictive and for me has no side effects. It just levels you out a bit.

Heinrich7 profile image
Heinrich7 in reply tofmkkm

I really wish it worked for me. Have been taking regularly for about a year. 3-5 mg am and pm.

Heinrich7 profile image
Heinrich7 in reply tofmkkm

What dose of cbd do you take?

PMRpro profile image
PMRproAmbassador

At low levels it could be described as steroid withdrawal until your adrenal function returns to normal levels. Poor adrenal function can cause some of the symptoms you describe and they will improve as that returns to normal. Even after stopping pred altogether it is assumed it may take up to a year for your body to settle down as the whole lot of organs/glands and substances involved gets back to where they should be in the set-up called the HPA axis (hypothalamus. pituitary, adrenals). It's complex and changing one factor affects the others and they swing about. Eventually they find the stable point and you feel better.

As you reduce the change in dose can induce something called steroid withdrawal - it happens as soon as you change the dose and it is the body saying, Hey, what's going on? It usually settles down within a few days to a week though it may take longer for some people. It is confusing because the steroid withdrawal often resembles whatever you are taking the pred for - and often described as steroid withdrawal rheumatism. One way of reducing that is to reduce in very small steps and allowing the body to stabilise between reduction steps. Top experts have said for years that a step down in longterm use of pred shouldn't be more than 10% of the current dose. By 5mg that is down to 1/2mg at a time, less would be better below that. So we suggest other ways of managing smaller changes:

healthunlocked.com/pmrgcauk...

and other suggestions are available.

fmkkm profile image
fmkkm in reply toPMRpro

Thanks for the helpful info. This year has been the first time in my life I have experienced panic attacks. It is no coincidence that I also am unable to stay under 4mg very long.

Heinrich7 profile image
Heinrich7 in reply toPMRpro

So there is no point getting adrenal glands checked. What I’m going through is normal as long as I do things right way. And there is no point going on an antidepressant because in the end when I’ve finally tapered off Pred and possibly within a year off of it, things will return to normal.

Ugh! Just sounds like it’s going to take a long time to feel better. I shall have to find ways to get through. Bury myself in good books, shovelling snow in winter (ha), learning to play guitar, joining seniors for coffee each week.

Will try to print off tapering suggestions and follow them but for now staying on 4mg.

Thank you PMRpro! I appreciate your help.

PMRpro profile image
PMRproAmbassador in reply toHeinrich7

Of course there is a point in having a synacthen test - it will show whether your adrenal glands are CAPABLE of producing cortisol when stimulated. If they aren't it doesn't matter how slowly you reduce the likelihood function will return is low. OTOH, there are people who had very poor responses at doses above 5mg but by persevering the adrenal function has returned, albeit slowly.

In the meantime you need to be advised and equipped to anticipate an adrenal crisis - it could happen at any dose if the stress you were subjected to was extreme but it is more likely at the low doses you may need to stay at to encourage the adrenal function to return.

Heinrich7 profile image
Heinrich7 in reply toPMRpro

I have new family doctor GP. Will discuss this with her. And also seeing RA in September. I will make notes of your info. Thanks for it.

So you would not advise mixing things up by going on antidepressant again?

PMRpro profile image
PMRproAmbassador in reply toHeinrich7

Why not? If you are also clinically depressed then there is an argument for it. But I am neither your doctor nor you.

Heinrich7 profile image
Heinrich7 in reply toPMRpro

Thank you. I may explore that option. People in general seem to go on them without thinking. But I hesitate. And I have a few people who suggest I should. It IS a really big deal for me.

PMRpro profile image
PMRproAmbassador in reply toHeinrich7

There are other non-pharmaceutical ways of dealing with depression which perhaps would be suitable. People do tend to dive into medication because they are unable to see the difference between feeling how they do because of sadness due to a situation and true depression. There is a time and place for most things.

in reply toHeinrich7

Cognitive behavioural therapy helped me enormously and it's a skill I can carry for the rest of my life.

Heinrich7 profile image
Heinrich7 in reply to

Did a course in that. May take again! Last time I tried to do all courses. This time I’d zone in and spend more time on the big D. Thx for reminder.

Perhaps the busy-ness could be part of the anxiety and general feelings of being unwell, especially if your adrenals aren't supporting you at this dose. Knowing the ways that illness and its treatment may affect you is a priority. You can't just ignore these feelings filling space with being busy, especially if the events and activities are too much for you at present. I too have a life time history of depression and anxiety and know it won't go away if ignored. You can only use the mental and physical energy that is available at this moment. The last thing any of us need is to potentially lengthen the periods of physical and/or mental anguish by not taking heed when we feel the solid ground shifting.

Heinrich7 profile image
Heinrich7 in reply to

So how do we take heed?

in reply toHeinrich7

You pare your life down so you start start to uncover what symptom goes with what. I am in my 4th year and am at 6mg. I take meds for depression and anxiety because I understand that there are changes in the brain so I have no issues with rebalancing. It could take 3 years to reduce from 4mg, you may go back up to 15mg or you may be off pred. There is no way of telling.

The point is we have to deal with each day and adjust events and activities based on the way we feel physically and mentally that day. If we overdo things then it can lead to feeling much worse. I had a family weekend just gone and had to talk to more people, my meds routines got messed up. On top of pmr, diabetes, hypothyroidism and fibromyalgia I now have some sort if issue with a colitis inflammation that means my food group just got smaller. The weather was hot and some members of my family forget I need to sit everyso often. They watch a mediaeval battle while I sweltered, had stomach cramps etc. I was in bed 7.30pm Sunday night with my lovely sister looking after me. I knew I would have increased pain, stress, anxiety and my body would hurt for days. I arrived home yesterday @1ish and can't get out of bed so brought food water and a bucket as I knew I just wasn't on solid ground. Rest, recuperation until my tired head and my aching DOMS- riddled body comes back. At the moment my batteries have run out. That's the opposite that we should be doing. Count and use your spoons more realistically. I think it is particularly important at lose dose.

Heinrich7 profile image
Heinrich7 in reply to

Oh my word! I am sorry you over did it. I pray you rest and recover. Inspite all you are going thru you took time to respond to me. I appreciate it!

Our place in the country attracts family and friends. We have a steady line up of people who want to come to stay or visit. I feel guilty if I say no. So instead of looking after me I am wondering what I’m going to cook, that house is decent - all for them. Who would ever spend their whole summer doing that for me? No one. Besides I still work. Off now to restock fridge. Sis coming for a few days. LOL. She however needs respite as much as I do. Blessings for today!

in reply toHeinrich7

When there are lots of people we all share shopping and cooking. People like to help and the more stress you take off yourself the more you can enjoy the people visiting. After all that's the important thing...your relationships. Sever big pans of chilli etc and salad and leave them to it. Enjoy.

PMRpro profile image
PMRproAmbassador in reply toHeinrich7

Then an early and important lesson for you to learn is how to say no.

For those who are able, you tell them they can come if they pitch in. I hand guests the bedding and covers and we make the bed together, we often eat out - because they are here to try local specialities and I don't do those - and share other tasks. If they don't like my home as it is, they can do the other thing. It doesn't seem to make much difference.

I lived in Germany for some years and that was where I learned that the important thing about visitors is the time spent together over a simple meal. Doesn't have to be Michelin stars on the table!

Mary63 profile image
Mary63

Take heed by looking after yourself, resting when you are tired, doing things you enjoy which don’t wear you out. Might be worth considering anti depressants a s a short to medium term boost?

Heinrich7 profile image
Heinrich7

Thank you Mary63. Did start low dose antidepressant. So far only 6 days and not much change. Really think it’s the now 5 mg of Pred. Seeing family doc Monday.

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