So why am I so exhausted now. Been down to 1 mg for 6 days and am o-k with only some pain but can hardly get out of my own way. Pmr for over 1 year and so glad I am able to get to 1 mg but what is with the tired feeling. I could stay in bed the whole day it seems. Nothing stressful going on so what is wrong?
Hi marilyn, thought I had been dreaming then realised it was your post. How wonderful to be down to 1mg so quickly, its what we all dream of. I would imagine that as you have come down so quickly it does not surprise me that you are tired and exhausted. Please don't over do it and cut this last few steps too quickly, you have done so well so far so take your time cutting further. Well done and keep up the good work.
well done maz in 1 year and down to one, hope you stay well
How fast have you reduced from about 7mg down to 1mg?
Even in under a year you are still a chronic pred patient - and your adrenal glands have been on holiday for much of that time. It isn't that they are "atrophied" or have stopped working - but there is a very complex feedback system of hormones that governs their production of the natural corticosteroid, cortisol, which is essential for life. If you have reduced that last 6mg or so faster than this set-up has been able to get into kilter again then you are, to all intents and purposes, suffering from adrenal insufficiency. The symptoms include extreme fatigue and weakness.
This is the main reason that a slow reduction is emphasised, especially in the later stages. Some people manage 1mg/month with no bother at all - but for others a slower reduction allows their body to keep pace with the changes and the effect is far less dramatic. One top PMR rheumatologist in the UK keeps his patients at 5 mg for up to 9 months to allow this to balance out. It seems to work!
Certainly don't reduce that other 1mg just yet, wait until you feel better. If the weakness and fatigue get any worse you may have to take a higher dose of pred for a short time and reapproach the reduction. In the meantime, your doctor should request an adrenal function or synacthen test to see if your adrenal set-up is functioning properly - if it is, all well and good, but if not then you need medical supervision until things are better.
Funny - this is the second or third time this week this has arisen!
My rhumy has taken me down about every 6 to 8 weeks by 1 mg. I see her in 2 weeks and wonder if she is taking off all together. Hope she knows what she is doing. OPnly have a little pain and weakness in hips and legs. Nothing bad and the bloodwork is normal. Just got up from nap and could go right back for another. These docs all have different ideas on how to reduce pred. I think it is a guessing game and we are the subjects. Thanks for the info. I will ask about the adrenal function. Good info
yes be carefull maz. as i got down to 1mg with a little pain but the pain crept in a bit too far so now i wonder if i have left it too long to up by another mg or will i have to go more i am helping it with paracetamo; at the mo so we will see what happens, if it stays put or gets worse. another thing i wonder, if i take paracetaol will my creatins still rise and what happens if they do
Marilyn
Re-read what EileenH has said In the meantime, your doctor should request an adrenal function or synacthen test to see if your adrenal set-up is functioning properly - if it is, all well and good, but if not then you need medical supervision until things are better."
You will be in trouble bigtime if your adrenal glands are not up to speed.
You need that test, before you go any further down the road off pred.
Thanks for info, wrote all down for next visit to rhumy. Sounds like too fast might be the issue, was just so excited to get down on pred. I might have made a mistake.
Marilyn
Pred is not the enemy PMR is and it has a mind of its own. It comes when it wants and goes when it wants. Yes, some in some people it goes into remission between 18 and 24 months. I have not heard of anyone to date less than that time. However, that does not mean it does not go away faster - just that I have not personnally come across anybody. But then we never hear of the people who have no problems.
The last thing you want is for PMR to flare and then up the preds.
Do let us know how you get on.
Hi Marilyn
i see that you are also on Methotrexate which can cause problems. Have you been having regular blood tests? When was your last test? I also agree with others that you may have reduced the pred too quickly. Might be time to see your GP.
take care
Kathy
Diagnosed dec 2014 and am just reducing from 5mg to 4mg been reducing 1mg every 4 weeks since 10mg. I have never been pain free except the first month i was first put on prednisone. As soon as i started reducing 70%of the pain returned. When I reduced from 6 to 5mg one of the biggest side effects i had was fatigue. A wall of fatigue there is no way to break through. Nothing like I have ever felt. I am 58 and on those days was lucky to be able to do any daily activities. Other symtoms were pains in right side of adomen, nausea, diareaha and very very large mood swings. Im not sure if these symtoms are lack of
adranal gland
Why are you reducing pred. if still in pain. Thought we are to stay on a dose until pain is mostly gone which happened to me. I reduced pretty well until this time from 2 to 1. Some pain came back but the fatigue is tuff to handle. Also mood swings like you have. This is not a fun illness, hope you feel better. I just keep moving on in the mess.
Blood test every visit with the rumy and they are normal. But going to ask for thr adrenal workup. Methotrexate seems to be no problem but how do we know what is good or bad with side affects. A guessing game I guess.
Hi Marilyn
Goo to hear that the MXT has not presented any problems for you. You have done really well to get down to such a low dose of pred in such a quick time frame. Let's hope that your Doc can work out what's going on. Hang in there girl you have lots of people who care about you on this site and what a wonderful thing this is.
cheers
Kathy
New to forum; so thankful to have found it. PMR for about a year and a half. Prednisone was taken and felt so much better for a couple of months. Have taken paquenal, methotrexate, and currently on leflunomide, also am on 9 mg. of prednisone. I, too, experience extreme fatigue, mood swings, and no desire to do anything fun or homewise. So tired of feeling this way! I've concluded that I will neev
When the pain came back my gp and rheumy diagnosed me with fybromyalgia as my bloods have never been raised after being put on prednisone they believe the pmr is in remission as long as bloods are normal. I tend to disagree but only time will tell all. I like you muddle through on a day to day basis. I hope your fatigue lessens over time and you will soon be prednisone free.
This is truley an illness for only the brave. I never heard of pmr till i got it. Never had such pain, mood swing. tired all the time and do not even like to shop. I said if someone gave me a bunch of money and told me to go shopping I would have to turn them down. Never had something that took everything out of me like this. Hope you feel well or better soon.
You're right, not for sissies and am not feeling very brave at this time. Often wonder if I ever will be totally pain free. Not a fun way to start retirement! I don't know anyone else except an ex-sister-in-law that sufferes from PMR. She, however, is in a semi-remission and not having difficulties that I've had. Am quite certain people assume we are lazy hypochondriacs, but if they only knew. Hope you feel better soon, too.
I was thinking that your previous post sounded very much like my own situation, as I have endured the painful range-of-motion issues in my shoulders and hips throughout my one-year reducton from 15 to 10mg.
But, if you have fybromyalgia, then can I assume that there is none of the tell-tale range-of-motion issue in your shoulders, i.e. that you have no pain specifically when raising objects higher than shoulder height?
I worked down from 15mg to 2.5mg pred over a 1-year period, but by that time my thumb joints were acting painfully arthritic, and the severe fatigue had also set in.
So I am back up to 5mg for the last two months, my thumb problems and fatigue have gone away, ,and now seeing slow overall improvement so will try 4mg every other day at some point soon.
But the taper-off rate now is going to be a lot less than the 1mg/month that worked "well enough" for those first 10 months.
My rheumy had recommended my also taking Plaquenil or sufasalazine, but I did not follow up with discussion of this possibility, and have not talked with him since over 1 year ago. The sulfasalazine/Plaquenil was to address a supposedly-high rf level, but I saw the numbers, rf=3.5, not abnormal from what I have read. BTW I am 55.
well done, but what dose did you start on, it does not seem a long time to me,. but i am still a newbie, i have been on 10mg for 7 months and still trying to get to nine.
Hope you keep well