I still struggle to figure out if my current symptoms are related to PMR ...

[Zacsmimi]

It seems to me that so many folks here seem to have a solid handle on what is happening with their body... Taper schedules, lab values, symptoms, adrenals, etc. I still have a rough few days ( suddenly sleeping all the time, for instance) and it doesn't occur to me until like, day 3 that perhaps this is part of the disease process and not just a touch of some thing else. I'm in no hurry to taper from my 8 mg methyl prednilosone until I feel solid, but I'm beginning to think that may not come. I am still recovering from my broken foot, and I've gained 20 pounds in the past 10 month since diagnosis. I guess there really is no way to know the cause... I'm appealing the denial of my long term disability insurance claim... And I hardly can explain to myself what's wrong and why I can't work yet... And some how we have to prove it to the insurance company. How does one know when the adrenals are functioning? And is there anything we can do to insure against developing diabetes from these steroids?? Random fears...

[Caro12line]

Hi Zacsmimi. Personally I think the majority of us feel exactly the same way as you. We research and find out as much as we can about the disease, the meds and the side effects and can sound fairly knowledgeable....but when our bodies are screaming out we all find it difficult to work out if it's a flare, a taper or a new side effect. Combine the physical effects of all this together with the phycological effects and having to deal with everyday life, it's no wonder we all feel a bit battered and bemused. We just keep on, soldering on.

I don't think there is anything that can insure against diabetis developing. No med that will help. But I think just a good clean diet with lots of fresh fruit and veg and little refind sugar would help?

[bunnymom]

Know just how you feel. I am tapering so now most random feelings of whatever I am putting down to that. I do have a shoulder issue on one side which Drs thought was unrelated to PMR but now seems better to me since tapering. Go figure! The scary thing for me is that I have to go in and coherently explain all this to a dr who may or may not get it. I am still working full time but have made drastic changes to accommodate this illiness but it is working very well. I am fortunate that I could do that. Hope your ankle is mending nicely and that you are up and around by holiday time. Wishing you well, Terri

[NonnieJ in reply to bunnymom]

Excuse my ignorance. I'm new.... what's tapering, please?

[PMRpro Ambassador in reply to NonnieJ]

Reducing the starting dose of pred to find the correct dose for you. In both PMR and GCA you start with a dose that is likely to be too high for what you need longer term - to get the inflammation under control quickly. Then you reduce the dose in small steps at intervals of a few weeks to identify the lowest effective dose for you. Everyone is different.

[MARION7]

Hi Zacsmimi,

Just to let you know you are not alone. I've had a horrible week, still feel awful. So fatigued I shake, don't want to eat, have sweats, my head hurts to touch, my whole being feels as if I'm about to expire. I really don't understand what's happening to me. I think to myself perhaps I have something else going on to. I felt okay-ish for a couple of weeks before this episode.

After reading your post I googled and found the this, "Reducing Steroids while on a Low Dose & Activating the Adrenal Glands By Marian Mesker"

May be helpful to you.

Hope you feel better very soon.

[nuigini in reply to MARION7]

Very interesting article on reducing steroids. Thanks Marion.

[SheffieldJane]

Please don't imagine that you are alone in finding this disease a complete puzzle. On good days I feel fraudulent and bad days I'm sure I'm going to drop down dead.

Get your GP, or better your Rheumatologist to write a letter for the Insurance Company ( they may charge).

Your broken foot will have been a massive set back.

Patience is the name of this game.

I am going to give up chocolate, as I have become a chocolate monster ( my only vice now). I feel better for a gentle walk on the flat most days. I am hoping to look less like a heifer as a result. Courage!

[TooSore]

Please know that you are not alone. Most of us are posting here with our best guess as to what is going on, looking for the collective wisdom to agree or point us in the right direction. I too gained weight as I tend to eat when stressed and the medication leads you in that direction anyway. I followed the advise here to watch sugar and carbs and am now walking. You are at a disadvantage with your foot so I'd just try to not gain more, worry about losing later when your foot is better. I also know that my blood inflammation levels went up with a sprained ankle so I'd guess you'd be dealing with the same with a break. That may be why you're tired. I would think the doctor could help you with the disability form. This thing we all have demands rest and adding in your foot, you need some time off! Hopefully today will be a better day!

[nuigini]

PMR is a puzzle for sure. Every day the puzzle pieces are shuffled and we have to fugure out how to put it together again for the day. Some days the pieces come together easily and on others they are a huge challenge.

Some of the pieces: Is it PMR? Is it withdrawal? Is it a flare? Am I reducing too fast? Can I reduce faster? Does the DSNS regime ensure that I'm doing it right? Is it prednisone? Did I do too much yesterday? Is it regular aging aches and pains? Is it simply a stained muscle? Is it the weather temperature? Is it the humidity? Is it stress? Am I stressed? Is it some other health condition? Is it my mood? .....

Some days I feel like the pieces have not only shuffled, but the whole picture has changed!! Fortunately, these don't happen that often. On most days I give my head a shake and come to realize I'm really doing OK? And believe it or not, most of the time I do feel like I have a "solid handle on what's happening" with my body.

You are definitely not alone. 🤔😍

[bunnymom in reply to nuigini]

Amen sister!

[Zacsmimi in reply to nuigini]

Very well put. A puzzle indeed!!!

[tiasbear]

I know exactly how you feel. I've never had raised CRP or SED levels, but when they gave me 20 mg of steroids back in 2013 all my pain went away after a couple days. They say that usually proves you have PMR if the pain goes away. But then again I had one Dr. tell me that steroids will take away a cold! I know she was over exaggerating but after 2 1/2 years on steroids, and my pain returning, I still don't know for certain what is causing this dreadful pain! (I do mean extreme sobbing and crying pain!) I do know for certain I have osteoporosis, osteoarthritis, bursitis, and scoliosis. But how is that causing pain all over my body?? Sorry, I didn't mean to make this about me, but I wanted you to know that I think many of us are in the dark... I just called a pain management clinic to see if I can get in there, and if SOMEONE can figure this out once and for all...

[mepoly20 in reply to tiasbear]

I feel exactly the same. My ESR was 59 at its highest ( now 25) and my CRP 1. Been on Prednisolone for 3 years, Max 20 mg , but mainly 5-7. Now on 6mg for a while. The pain got worse for the past few weeks and I am not sure anymore if I really have PMR or something else.

[PMRpro Ambassador]

If you are on 8mg then it is fairly likely your adrenals are not functioning at present - not because they can't but simply because you are still on a dose that signals to the body that it doesn't need to make any more steroid, there's enough present. It won't be until you try to get below 8mg that that hurdle will be met - and if you go slowly enough, most experts feel that almost everyone will have their adrenal function return.

Avoiding diabetes? Well, you can cut the amount of carbs you eat and that often also helps with the pred-induced weight gain. If you are already diabetic then being on pred does cause some fairly interesting effects and for some people even strict control with insulin doesn't seem to avoid spikes in blood sugar. And they aren't related to the time of taking the pred either it seems. Exercise does help keep BS levels more stable. I do realise that's all quite difficult with a broken foot!

However - if you weren't diabetic, you should be having your Hba1c level checked every 3 months. That is a reflection of the AVERAGE BS level over the past few months. It should be below a certain value for the optimum health of your body. The odd spike of high BS doesn't do much damage - it is persistent high levels that does damage to the tissues. As long as that Hba1c level is low enough you don't need to worry too much. If it starts to rise it is a signal you are becoming what is called pre-diabetic and more care is called for. if it is high possibly even adding in something like metformin.

When you have a bad few days - do you ever look back on the previous few days and consider if you have been doing (or not doing) something to trigger it? Keeping a diary of symptoms and activities often helps people identify reasons. For example, while your adrenal glands are being lulled into a state of stupor by the presence of pred in the body - any form of stress may affect you. You have your broken foot - have you had any other stresses? Of course you have - the refusal to approve your claim and the process of appealing is pretty stressful. And there are probably other factors. And you are obviously worrying...

And as a postscript can I remind you all that this forum has been pushing the concept of slow reduction for the last 3 years! It's been on the other forums even longer!

healthunlocked.com/pmrgcauk...

We've also been talking about cutting carbs with pred for the same amount of time!