Tapering, trying to get by.

[Lanakay]

Tuesday my rheumatologist lowered me from 7.5 to 7 mg. Can this cause me to feel really weird. I don’t know if it’s that, I wasn’t ever diabetic but maybe a low blood sugar, panic attacks or a brain tumor. The rheumatologist prescribed lorazepam and I do take that when things get bad. I don’t take more than prescribed but could I be addicted to it already. I just don’t know what my problem is. I have an appointment with my primary care Dr on Tuesday. I’m just trying to get by until then.

[DorsetLady PMRGCAuk volunteer]

Hi Lanakay,

Could just be steroid withdrawal. 7.5 to 7 doesn’t sound much, but it can make all the difference to some people. If it is steroid withdrawal then it should only last 3 to 4 days. A slower plan may be better in future for you if you are particularly sensitive to change. See below.

If longer than that the may well be your adrenal glands - they need to kick back in around this level, and again some people get more problems than others. If it is that, then really it just a matter of taking your taper really, really slowly and giving them a chance.

Try this plan, or one if the ones listed under Pinned Posts (tap view more) -

healthunlocked.com/pmrgcauk...

[SheffieldJane]

Hello Lanakay! I am struggling between 7 mgs and 6 mgs too. The unfamiliar symptoms can make you nervous and suspect something else serious has joined the party. I think it is our Adrenal Glands . I am trying not to lose my nerve with it all. The end is in sight with any luck. Occasionally I feel completely normal for a few moments, that’s the star I’m following.

[1Purplecrow]

Hi Lanakay, I’m sorry you are having such hard time. The taper process is truly rough at times, and the concerns you listed are (in my experience) very common to PMR . I want to assure you that it is most unlikely that anything is seriously wrong, eg.brain tumor, etc.

As Dorset lady said, you are most likely experiencing pred withdrawal, and it will pass.

In the meantime, take extra care of yourself, afternoon nap,... nice cup of decaf tea,.... chocolate😁, ....good “cozy” novel, ...snuggle with your fav pet or person.... most of all, know you are not crazy or dying...you are working through a very difficult phase of prednisone taper, your body resents the hell out of giving up its drug, and your PMR is not gone...its just hiding behind the screen.

Now... in my opinion...your rheumatologist is not the one who should be running your pred taper. It is your taper, and your body may not be ready for a .5 mg drop.

DorsetLady gave you links to accepted pred taper schedules. I found that alternating days of pred doses...eg., 7.5 mg one day and 7 mg the next, then 7.5 again, etc. helped me get through rough tapers. Sometimes, I just stood still and let my system rest at 7.5 (for example).

In the words of wiser than I, “ this is not a race to get off prednisone” .

Perhaps your doctors, including rheumy, would be able to learn something new by reading the pred taper schedules. I do not believe that many docs have graduated med school knowing as much as you will learn by reading this forum... so, take them copies of the schedules, and prepare to defend your right to proactively participate in your own PMR recovery

Kind regards, Jerri

(Diagnosed with PMR Sept, 2013, currently on 2 mg pred)

[Elaine-W in reply to 1Purplecrow]

What a good post. I wish you well as you move closer to the Zero club xx💐

[PMRpro Ambassador]

I agree with my friends!

There is a recent post about what a difference 1/2mg can make - it may be your adrenal glands, it may be withdrawal or it may be a flare. Or 2 or 3 all together. Flares don't always manifest as you might expect.

[Lanakay]

Thank you for your responses. I’m not feeling so alone now. I so appreciate this site.

[Hidden]

Hi Lanakay, I can say from experience 5mg can make a HUGE difference!!!

When I drop 5 mg (which is every 10 days) I am crippled by weird, unusual, disturbing side effects/withdrawal symptoms. I was dropping from 80, 75, 70, etc. and I'm now at 55 mg.

Each time I drop the side effects/withdrawal symptoms change and it never ceases to amaze me and freak me out!

You'll see me back here on this forum, asking the experts, "Is this normal?" "Why do I feel like this?" "Is this GCA?" "Is this PMR?" "Am I losing my mind?"

[Lanakay]

Believe me I get it!

[Lochy]

I read posts every morning with my cuppa and this has become my crutch for dealing with this condition. As I struggle with a taper and worry myself that I’m developing some other strange disease I defer to reading everyone else’s stories and that usually helps! It’s as if my hand is being held by virtual friends who all understand.

My real life friends and family are hugely supportive but don’t get it and I find it difficult to explain my symptoms without boring them all rigid. And we all suffer from “oh but you look so well” and I always get “and you were always so fit and active, how did it happen to you (that one hurts a little as one does feel bit peeved when you’ve made an effort to look after yourself most of your life and then get dumped with this!) Thank goodness for this site is all I can say.

[Reeceregan in reply to Lochy]

I feel like I just wrote this post! You must be inside my head. Morning cuppa, Early reading of the daily posts, positive reinforcement that I’m not crazy or alone, then I’m good to go. My husband sometimes thinks I read too much...my answer to that is for warned is for armed and if not for this forum I’d have no idea how to treat this dreaded PMR/GCA. My rheumatologist for all his knowledge has not experienced this in real life and his determination to successfully “race to the bottom” with regard to getting of the prednisone causes more harm than good. I do it my way...slow taper. So far so good, from 50 to 8 in 9 months with the occasional hiccup. Fingers crossed I can manage more but I won’t be rushing. Bless you all and have a sunny day....💪

[Lanakay]

Thank you for your reply. I feel the same about people not understanding this. I am thankful for this site because it feels like we have friends who really “get it” here.

[sondya]

Starting (for GCA) at 60mg, I am (14 months later) down to 2mg per day. Each time there was a reduction I had a couple of days 'adjustment' - it's steroid withdrawal. It goes and I feel better for being on less prednisone. Once GCA goes, the prime objective is to come off steroids.