Does anyone struggle in the morning. I feel horrible.

[lizg0017]

Does anyone struggle in the morning? I’ve been awake for 3 hours now. But I’m feeling so horrible. Very lightheaded, legs feel like weights, bilateral shoulder and wrist aches. I’m currently taking 6mg Prednisone. Diagnosed with PMR March 2018. Maybe it’s not enough? Seems like mornings are just a struggle every day. Thoughts?

[HeronNS]

When did this struggle begin, or has it always been this way?

[Yellowbluebell]

Hi, can you clarify when youbwere diagnosed with pmr as one of your posts says may 18 and another feb 19? Either way your taper has been fast so it is quite possible you are not taking enough pred. I was diagnosed oct 18 and started on15mg but i am only at 9mg now and this is a taper my gp and rheumy suggested which is a lot slower than yours. I think you need to back to a dose where you felt good and stay there for a while and only take very small tapers after that. Good luck

[DorsetLady PMRGCAuk volunteer]

Initial reaction - too low a dose.

You started on 20mg but seem to have had problems most of the time - maybe due to too fast a taper, not getting full benefit of meds, you not pacing yourself enough, incorrect diagnosis or more than PMR?

Have you ever felt your symptoms were fully under control? If so, as YBB suggests return to that dose, stabilise, and then reduce much more slowly.

[PMRpro Ambassador]

I think you need to go back and read all your past posts and our replies then. You can get to them from here:

healthunlocked.com/user/liz...

You were reduced at the start at a totally unrealistic rate, you had a pair of nincompoops as doctors (as I said then). When you flared it was ignored and at a guess it is no different now.

Your reply then was

"Totally agree. I bumped it up to 6mg from 5mg yesterday. And this morning upon wakening, the pain is less than yesterday at 5mg. Maybe pain level of 1 or 2 rather than a 5 yesterday. I still feel the PMR, but it's definitely more subdued. My instincts tell me 5mg of Pred is my unlucky number right now. So I'm planning on staying on 6mg til I see the rheumatologist January 3rd. Thanks for your response."

You need more - the underlying autoimmune cause of PMR doesn't remain at a single level all the time, it waxes and wanes. The idea is to find the lowest dose that manages the symptoms as well as the starting dose did, you should never feel worse at the end of a reduction step than you did starting it. The reason you have not done well with pred is because you aren't using the pred correctly. To be at 7.5mg after barely a year is excellent, the median time to 5mg is 18 months, you were well within that. Your rheumy insisted on mtx - that made you ill. So he wanted to try leflunomide.

We discussed this last time. You were at a physiological dose after a short time, there is no reason to add anything. You just need to use the pred better. Every time you force a reduction and allow a flare it puts you back.

I would say the best answer is to go back to 10mg and if that is enough start over again to reduce once the symptoms are stable and minimal. And if your current doctors won't have that - you must find one who will.

[lizg0017 in reply to PMRpro]

Thank you. I do get it. I was just trying to see if I could tolerate the low dose or if over time I would adjust to the 6mg like being on 10mg and that the PMR would eventually burn itself out. I understand it can take years to go into remission. Guess I’m trying to say I was testing the boundaries of my pain tolerance hoping I could get through my weeks without bumping up the Prednisone. As most say in this group, follow your instincts. If you’re in pain, bump it up. And do it very, very, slowly. I shouldn’t have posted anything today. I’m a believer in trying all options rather than complaining and doing nothing. Was just having a down moment. Your reply was helpful and you took time to read my previous posts to answer as best as you could based on knowledge of what I’ve previous written. But I couldn't escape the feeling you were talking to me like I was in second grade. Almost scolding me for not doing what we previously discussed. At least that’s what it felt like to me.

[PMRpro Ambassador in reply to lizg0017]

That's why we are here - because it isn't always obvious and everyone gets down at some point and can't see where to go next.

I'm sorry if that is what it sounded like - it wasn't meant to be. That's the way I write and when we aren't face to face it doesn't come over the same. I was just trying to guide - not scold.

[lizg0017 in reply to PMRpro]

Thank you. I appreciate the apology and response. True, writing interpretation can get misconstrued. I’ve been there. Too bad we couldn’t do a face to face as I just became a citizen (dual citizenship) of Italy last year. Thanks again.

[PMRpro Ambassador in reply to lizg0017]

Is it worth it? We aren't sure we want to be Italian! We don't need to work cross-border any more - but are there other positives I wonder? Had we been resident in certain other EU countries we would have been there in the queue on day 1!

[lizg0017 in reply to PMRpro]

I have a soft heart for Italy. Both sets of grandparents born in Sicily. I’ve heard of the challenges there. I’m looking to visit early 2020 for the first time to see where my grandparents lived.

[PMRpro Ambassador in reply to lizg0017]

I suppose in some ways I don't really live in Italy - I live in an autonomous German-speaking region in the north. Our nearest large city and airport is actually Innsbruck in Austria. It has the nice things of Italy with rather more discipline and orderliness because of the Germanic personality!

[Hidden in reply to lizg0017]

Hi. I think a lot of people think it's about whether you can get as low as possible and tolerate the pain. I took weeks to increase from 6mg (where I had been for 12 months) to 7mg with a 3 days 10mg burst to start the increase. I hadn't realised how much pain and fatigue I was tolerating. It brought it home when my markers rose from 1.6 to 35 in the past 3 months. There have been other things going on but it showed me I should have hit it with the pred when I felt it and not tested my fuzzy edges. I am one of those people whose esr and crp seems to follow symptoms.

[Noosat]

Yes, I'm down to 3.5 for past week from 4mg. in the mornings I have felt leg stiffness and some hip aches which gradually work out as I move around. I do have osteoarthritis and osteoporosis as well as PMR. I assume it is because of aging, not necessarily PMR. I am 91. I do not assume that I will ever be discomfit free at my age. It is just part of being human. In a couple of hours, I will take Lily dog to the undeveloped river park where she can run free and I will walk.

[Lanakay]

I always feel terrible in the mornings. With me it’s not so much physical as mental I think. I have trouble facing a new day as the new me. The new me just doesn’t have the “go power” like the old me did. Once I’ve had my meds and coffee I start feeling better.

[PinkertonCat]

Responses to this post SOOOOO helpful to me. Thanks all for this site!