Test Rat

Diagnosed in April with PMR at 52. Got a second opinion yesterday and the new doctor seems very very thorough. Took several blood tests, xrays, of chest and hands. Previous Dr never did anything this comprehensive. Anyway, I tapered to 7.5 mg a few weeks ago with no problems from original 20 mg in April 2019. The new doctor doesn't think I have PMR based on my history with this sickness that I had for several months when I was 46 that quickly disappeared. He wants me off prednisone in a month, so I tapered to 5 mg today. He wants me to essentially get into a flared condition so he can perform additional tests to accurately diagnose me. He said that I may have been misdiagnosed with PMR. Anyway, I am struggling pretty rough. Also have a nasty cold to boot. PMR pain not there yet, but I think it is brewing. I can feel all the neck pinched nerves in neck/shoulder that I had prior to PMR... Has anybody else ever try to get themselves to flare to allow the doctor to run more tests to find a better fitting diagnosis? I feel like a test rat.

[GOOD_GRIEF]

Not a chance I would do that without a life-and-death scenario at hand.

[jinasc]

Each day I think I have seen and heard nearly all.

Watch for jaw pain, one sided headache etc and most essential .................any sign of a problem with you EYES.................A&E fast.

I have no medical knowledge, but I do know that I would call him and ask the question

'Will my adrenal glands wake up that quickly".

Hopefully someone else will be along shortly with more knowledge than me.

[Hidden in reply to jinasc]

Right eye is very dry and getting crusted up. I think it's because the cold. no loss of vision

[Hidden in reply to Hidden]

eyes are both red and feel dry. going to get some eye drops.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

As you “have” PMR - allegedly- I would br more concerned about adrenals struggling than possible GCA and sight loss.

If you begin to show any signs of adrenal insufficiency such as nausea, light headedness, extreme fatigue you need medical advice.

[Hidden in reply to DorsetLady]

Thanks to all of your responses. And poops and piglette. I’m not looking forward to this but maybe it will shed some light in the long run. Getting pmr every few years for the rest of my life would be bad too.

[Hidden]

There have been people who have been told to reduce quickly for scans and suchlike. It is not a road I would like to travel. I think some sort of negotiation about the speed of reduction should be entered into re adrenals. As others have said be aware of what's happening with eyes. My neck doesn't like being with pred. I think it was madcountrylover(?) Who had to do a fast reduction in the past couple of months for a scan. I know she did suffer. What is Dr thinking it may be? I hope you can take it easy and let us know how you are doing.

healthunlocked.com/user/mad...

[piglette]

Has your doctor never heard of adrenal insufficiency? Or is he trying to reduce the world population?

[SheffieldJane]

I am glad the doctor is being thorough. I share everybody else’s concern. It seems unusual and potentially reckless to me. He needs to be transparent with you. What does he suspect is wrong with you that would be obscured by tapering Prednisalone?

Let us know what happens please.

[Hidden]

Thanks Jane. He really doesn’t think I have pmr and whatever I has mostly passed. Will keep you guys informed on this new journey twist

[Yellowbluebell]

It's kind of irrelevant whether your doctor thinks its pmr or not, it's the way he has decided you need to come off pred that is the issue. Downright dangerous. You need to talk to him further about this and plan a more manageable taper. Good luck.

[Hidden]

Thanks Yellowbluebell. I feel as though I am in a predicament. I would really like to have a better understanding of my health. He may be right. That I don’t have pmr. But I really don’t wish to go thru that pain again. However, having this painful experience twice in six years and not even 53 is odd. Chances are at this rate I’ll go thru this several more times before I enter the golden years

[Yellowbluebell in reply to Hidden]

I wouldn't worry about what may or may not happen in the future and concentrate on sorting your present problems out, your doctor being the biggest one. Like you say he may be right, but his method of tapering could make you seriously ill and then it won't matter who was right or wrong. Talk to him again or even see another doctor if need be. Keep us up to date please.

[nickm001]

Why does he suspect the first diagnosis? Did you ask what tests exactly the first doctor missed that he will do? Can he not use results of the tests done previously? What does he suspect you have instead of PMR? I have seen few patients gone thru fast (and dangerous) reduction on this forum and in most cases diagnosis did not change. Don't be afraid to ask these questions, because tapering down after several months just so he can do testing puts you in potentially dangerous position. Read up on adrenal deficiency symptoms and watch for them. Good luck to you.

[Hidden in reply to nickm001]

Hey Nick, dr mentioned lupus, stills, and a few other things I’ve never heard of. But dang it sure hurt and my symptoms seem to line up with pmr. But there are some things that just dont seem to add up. If I still have the sickness, I should know the next few days. Had a good night so maybe the young rheumy is right

[PMRCanada]

Never heard of such a thing!! As someone has mentioned, watch out for adrenal crisis. Despite being thorough, this approach is not mindful of your quality of life. If they are watching for increased inflammation markers (ESR and CRP), they need to realize that for a percentage of people, these do not go up.

I can appreciate they want to give you an accurate diagnosis, and unfortunately PMR symptoms overlap with other autoimmune diseases. Did you test negative for RA? Even that can mean seronegative arthritis.

Good luck, and keep us up to date.

[Hidden]

Yes ra is as positive this time. Negative last few times. Esr and Crp was elevated. But having a cold may have caused some of that. Yes thanks for all about being aware of adrenal glands. He didn’t mention it. On a positive side. Feeling pretty decent today. Few niggles and tired but nothing excessive. Thanks for your thoughts. I am really watching what I eat right now but sure could go for some of that maple syrup! It’s the best