Hello,
I have been told my PMR is gone. I am on 7 mg Prednisone. and trying to taper to 0.
I am taking one 5mg. and two 1mg to make 7mg.
Yesterday, I took off an extremely tiny corner of a 1 mg away with my fingernail.
So, I took 6 7/8mg of Prednisone yesterday instead of 7mg.
Today I have debilitating pain in my shoulders and hands and I can barely walk.
What am I battling? Adrenal Glands or PMR? What is causing me not to walk?
I will go back to 7.
I don’t know who told you your PMR had gone but you will not know that until you get to zero without pain. I would say you still have PMR and that is what you are struggling with.
Not sure anyone can say you don’t have PMR any more … Koalajane says you need to be off Pred for a good few weeks/months with no symptoms to know that. Plus with your track record would doubt it very much.
Your pains certainly sound very PMRish to anyone on here.. although the tiny amount difference in one day seems to indicate you have a flare that has been building, and it just coincidence it happened on that day. .
Have a look at this -
healthunlocked.com/pmrgcauk...
Sounds a bit extreme to be adrenals - unless you have fatigue as well -
healthunlocked.com/pmrgcauk...
I wrote in detail, my situation a few days ago. I asked a specific question, exact and simple. It is though nobody believed my recount of my experience and in fact, have challenged me, chided me, disrespected me and in all battled me further.
Yes, I actually took a tiny piece of a 1mg off to make 6 7/8 dosage rather than 7mg for one day. Those were the symptoms that I came to this forum for help and understanding. I took the 7mg the next day, without a corner missing and I was fine.
I have come here for help only a few times. I will not again. I only get mostly disrespectful answers, sometimes even sarcastic. It seems like you should all take a vacation and that you are truly burnt out. If you can't answer a question with respect to the author, don't answer.
Perhaps if you were here more often you would know the responses you get are not any of the things you claim but realistic opinion learned of years of experience. And we are Brits - we say it as it is.
Perhaps if you knew me to be an educated, healthy, productive person, you would not (generalize) your answers. I still know nothing more than before I wrote here.
Just like all of us.
Alexandria, why are you being so rude to people who are genuinely trying to help you? They are doing it because they care. If you feel people, holding out their hands to help you, is of no help, at least you could recognise their goodwill, say thankyou and go off on your own way.
Yes you did ask what you were battling.
I think most of us said, it was PMR - or certainly sounded like it to us.
What we were questioning is how your Rheumy could say your PMR had gone whilst you were still on 7mg of Pred.
At no time did we challenge you, chide you, disrespect you nor disbelieve you.
Comments obviously lost in translation.
I live in Los Angeles, California, USA with the best doctors in the world. I have one of them. I do not know how the Rheumatologist came to that conclusion. It was just after I had a blood test.
I asked a simple question. I was hoping for a ''one or the other" answer! Is the tapering symptoms from PMR or Adrenal adjustment and cortisol adjusting?
Yes, I had extreme fatigue. Sent me to bed. The next day, I took the 7mg, and was fine.
Unfortunately with our illnesses there very often isn’t an easy answer to a simple question.
At the dose you are at presently could be your PMR complaining , it could be your adrenals struggling to re-awaken, or it could be a combination of both.
The fact that a day after fatigue you took slightly more Pred and that helped might suggest it was adrenals.
But have to re-iterate just because your bloods are okay doesn’t mean your PMR has gone -it just means the Pred is controlling the inflammation caused by the underlying disease.
Your Rheumy may refer to it as remission -but that’s clinical remission (I.e symptom free) but not the remission we talk about (I.e. disease burnt out).
Hope that clarifies things.
My gosh you must have met someone with psychic abilities who can tell you that the PMR has gone when you are on 7mg.
Is this the way you like to answer a person!? Do you feel good about this answer?
I am sorry if I upset you, that was not my intention at all. I was just surprised that anyone was able to look into a crystal ball and tell you that your PMR has gone when you are still on 7mg.
I can't imagine that a dr would tell you the PMR is gone while you are still on prednisone, which controls the symptoms!
Your dose drop is far too small to be clinically significant. I can say this because I have many years experience in Phase I Clinical Trial Research where the relationship between dose and clinical response of a new drug is very carefully measured using statistically valid groups of human volunteers.
I can not imagine that your very small dose drop was responsible for your wake up pain.
Best wishes.
Agree . More likely just a coincidence if flare was already building up….
Well, it was clinically significant! I was the research!! Do not dismiss my ability to recount what happened.
Your PMR has gone? How can they tell? Even ONE mg pred can be enough to manage the inflammation and keep symptoms at bay.
However - the tiny difference cannot have led to the massive increase in symptoms so quickly. Correlation is not causation.
Was there anything there before? I can wake up almost unable to get out of bed and walking is very painful with low back pain. It is predominantly muscular - the back muscles are very tight and even a slightly bad night can result in agonising spasms.
So as far as your lower back pain, which I have also along with other issues ai have listed before, do you believe this is PMR ?? Because you must have had MRI s done , and showed various issues causing lower back pain, I too have been told mos ago, by rheumy, didnt think I still have PMR, rather other serious issues that were shown on MRI, exrays etc, so that is why been advised to continue to taper, today will be 3 days at 5 mgs, so I am doing what was advised , hope it s right thing to be doing
I have said before - NOT PMR directly but aggravated by PMR and a scoliosis plus myofascial pain syndrome. And no, never had an MRI.
Pure coincidence. Being anxious won't have helped.
same here. Apparently I no longer have PMR. I ask them why all of my original symptoms have returned.
Tapering but should I go further?
What to do? I am exhausted!
To taper tonight or not to taper.
Should I continue to taper?
What am I going to do?
