I’ve gotten down to 6 mg and now my fatigue and pain are worse
Posted , 12 users are following.
I have been diagnosed with PMR now for ten months and was doing ok with my taper from 25 mg to 6 mg when my fatigue worsened and my joints hurt more just as I was suppose to go to 5 mg.
It was a mg a month taper since 10 mg.
I told my Rheumatologist that I wanted to go back to 8 and she didn’t want to have me do that since my inflammatory markers 3 weeks ago were normal and it risks dependency.
She told me to hang in there and if I didn’t feel better she would repeat the markers and possibly send me to the endocrinologist for steroid dependency testing or add other meds .
My question is . If I’ve had a relatively fast taper why wouldn’t this just be that I don’t have enough Pred on board? I actually remember feeling better at 8 or nine mgs.
Seems to me that it would take longer to shut down the adrenal glands since others have been on higher doses with more drawn out tapers and not mentioned this in posts?
I have gone back to 8 mg on my own the last two days and not better yet.
0 likes, 15 replies
Daniel1143 Vic1028
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BettyE Vic1028
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I'm not sure how dependency is defined but I do know that to have reduced from 25mgs. to 6 in ten months is pretty fast. Also if you have been told to reduce at the rate of 1mg. a month that is also very likely too fast. You say ,
" If I’ve had a relatively fast taper why wouldn’t this just be that I don’t have enough Pred on board? I actually remember feeling better at 8 or nine mgs."
Good question. Did you ask her? What did she say?
When you reduced from 10 to 9, that was a 10% reduction. After that you have been reducing at a more than 10% which I understand is not recommended and from your symptoms it certainly sounds as though you are now not getting enough to control the inflammation.
Also the "normal" ESR level does not apply to everyone. Some people's are never raised as reported by other patients on here.
Do you just see the rheumy or does your GP have any input. Might you get more sympathetic and, dare I say, knowledgeable advice from him/her?
You felt better at 8 but, having been forced to reduce too quickly, even eight is no longer effective. You may need to go higher.
Around the 10 and below mark has proved a sticky time for many of us. I had to stay on 10 for three months. I was allowed to work out my own schedule and report back to my GP. I have been symptom free now for almost four and a half years. Towards the end I was reducing by as little as 0.25mgs. It took five years in all to get from 15 to zero.
Best wishes and please do let us know how you get on.
ida40908 BettyE
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BettyE ida40908
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ida40908
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i made an appointment with the gp re the bl. Pressure , as you people advised me, in about a weeks time AND tapered the steroids to 6 mg and once 6.5. In the meantime , from the seven on which I had been for a long time.....( my gp wanted me to be on 10 mg. Which I did not think was necessary.... that is me....That is why I did not taper before)
The result is that the blood pressure is already getting more normal Nd the swelling is already less my body feels more like me. Pain is not worse, and actually very acceptable. So really my thing is, I am the expert about me, with your help, not the “ experts” who don t know how it feels to be a pmr person.....
one other “thing”do you people feel that your “ filter” does not work very well, I mean like being on a market with lot if noise and impulses..... my head can t do it... it just feels I can t block off all the various stimuli???? It drives me nuts????
so thanks you again dear Friends, for advise and listening....Ida/ Alida.
EileenH ida40908
Posted
If your adrenal function is still lagging behind a bit it can make you very sensitive to being disturbed in any way - things not going smoothly, noise, activity and so on included.
"I felt that the side effects of high bl pressure and the side effect of the steroids, swollen up feeling, we’re worse than the pain from the PMR."
All I can say is your PMR musn't have been as bad as some people experience in that case! One friend spent the best part of a year in bed and went on to develop GCA which is more common in untreated PMR. I've had some very unpleasant steroid side effects - I never felt they were worse than the PMR. But then, I'd had 5 years of PMR with no relief from pain or stiffness at all. Pred gave me my life back. Most pred side effects can be managed pretty well when you know how - low carb and low salt diet improves the bloating/puffiness a lot, good moisturiser, etc etc.
ida40908 EileenH
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“you had 5 yrs of PMR with no relief from pain and stiffness at all “ were you not diagnosed??? I can imagine how the steroids really are a “girls best friend! “ in your situation....What a path.....the flip side is that you are able to help everybody else on the forum, if that is any good for you.....with kindness, Alida/ ida
EileenH ida40908
Posted
I kept going to the GP who took bloods - which were never out of "normal range" - so obviously there was nothing wrong! In retrospect though the levels could have been raised for me, my normal is 4, during a month in hospital some years ago they hovered around 16-18 for ESR, apparently "normal" so no-one said anything. It was put down by the GP to the usual guff: "your age", "depression" and somatism (though I called him on those. Never once a thought of autoimmune disease or cancer - both prime candidates for PMR-type symptoms. At least he didn't insult me with "fibromyalgia" which is the usual lazy doctor's answer to everything!
ida40908 Vic1028
Posted
Hi there,
go with how YOU feel, your body and mind know you, and you know we are all different, and you know that this is a slow, slow business......you are the expert for you, do what you can do as physical exercise, moving, walking, to move this stagnation, get out of your head, and go with what your body tells you 😉💗 alida
Anhaga Vic1028
Posted
Normal inflammation markers after you've been on pred for a few months means nothing more than the fact that pred is doing its job. All pred does is reduce the inflammation. It does not cure PMR. Your doctor needs to prescribe enough pred for you to get the pain under control again, and then allow you to taper only as you feel well enough, and at this stage it's probably going to mean a taper of about .5 mg every couple of months. It isn't slow if it works.
As Daniel says, you've been dependent on pred for months now. In fact it doesn't take more than a few weeks for the adrenal glands to stop producing cortisol, and therefore tapering by the time you are at 8 or so needs to be even slower because one has to wait for the adrenal glands to amp up production. Which they will, but it takes time, and each taper down means they have to get used to producing just that little bit more.
Quite frankly if you have done well until the last little while when your dose obviously is too little too soon, I think it would be foolish of your doctor to suggest adding any more drugs, all of which come with their own nice little suite of side effects, to the mix. In some cases if people have been on pred for several years and had continual problems with tapering, then it's time to reevaluate, but you are nowhere near that stage yet, and will probably continue to do well if allowed to taper according to your own symptoms.
Low doses of pred do not have nearly the side effects that doctors fear, with some justification, which occur at high doses for an extended time. A dose of 8 mg is very close to what the body produces naturally so any side effects will be minimal, and should not have a significant effect on your long term wellbeing. Allowing inflammation to build up again and continue unchecked is far more serious.
Vic1028 Anhaga
Posted
Ill have to ask how the Doctors can tell the difference .
I did get a note from a fill in Dr. while she is on vacation.
Good timing to get another’s opinion !
He admitted that sometimes you need to slow the taper down but stood up for her that this a routine withdrawal time line .
He will test the blood to make sure there is not something else but didn’t discuss an Endocrinologist yet , so I guess he’s not checking for steroid dependency.
i will ask
thank you all!!!!!
EileenH Vic1028
Posted
"So , it’s difficult to tell if increased aches and fatigue are a result of PMR or steroid withdrawal?
Ill have to ask how the Doctors can tell the difference "
They can't - it isn't their pain! The patient is in the best place to work it out - and a good doctor will explain (if they understand it themselves).
When you reduce, if pain starts within 24 hours of changing the dose it is most likely to be steroid withdrawal and that will then improve over the following week or two. If you have reduced in a big step it is more likely than if it was only 10% or less of the current dose. If you are OK at first and then pain starts that is like PMR and then continues to worsen it is almost certainly a flare - either because you have now gone to too low a dose though it can also happen because the activity of the disease has increased for some reason (because you are under stress, have an infection, or it is just more active).
And if by "routine reduction" he means it is what they suggest in lots of medical literature then I suppose you have to agree. However, I have yet to read one that didn't say "it must be adjusted to the patient's needs" and that the reduction must be done "with due regard to return of symptoms". And YOU have a return of symptoms. So the reduction needs to be adjusted. Which means stopped for now, you return to the dose that you are good at, wait a couple of months and then try again. Often that is all you need to do. It isn't a race.
dmart7 Vic1028
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The adrenals are likely to have largely shut down production of cortisol after ten months, and your reaction on getting down to about 6mg reflects the fact that there is now a deficit of steroid. The adrenals need to make that up and the transition to reactivating them can be very slow - often as drawn out as the period you've been on steroids. This suggests that you need to taper more slowly than 1mg a month, and the DSNS method would help. It is nigh on impossible to avoid some discomfort during this transition because you have to get to a steroid deficit to force the adrenals to re-start. Good news is that there is a good chance that you will succeed eventually, and it is possible that your actual PMR is already in remission or inactive.
nick67069 Vic1028
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Our bodies usually make 7-8mg or cortisol every day. When you take pred above that level for PMR, body is smart enough to shout down it's own production. When you are at high dose of pred for more then 2 weeks, adrenals shut down. After you taper back below 8mg or so, the adrenals need to wake up and start producing cortisol again, but this does take time. This is why taper at lower then 7-8mg has to be very slow to give time for our body to adjust. In your case it seems that you have reduced too quickly too soon. By the time your markers show that underlying PMR is still active, you will feel symptoms come back with vengeance and you will have to bump up your dose to 10 or even 15mg to recover. pay attention to your symptoms; if the symptoms are becoming WEAKER over time(week to 10 days into taper), then it is steroids withdrawal . If the symptoms are not going away and becoming STRONGER then you have missed your minimum dose that you need for managing PMR and need to go back up to whatever level you felt fine ASAP. For you that may have been 8mg. The longer you wait, the higher you will have to go to take care of accumulated inflammation. Last thing I want to mention is that you can go to 10 or higher for short time (one week or so) and then go right back to your "feel good" level, 8 or so based on your description.
EileenH Vic1028
Posted
Your doctor is in cloud cuckoo land - you do NOT become "dependent" on steroids in any bad way and there is absolutely no point diagnosing PMR and giving the patient pred if you then don't allow them to use it properly! You need the lowest dose that gives your symptomatic relief - and by the sound of things you have already gone below what YOU need.
The others have said it all! Your body slowed its production of cortisol within 2 or 3 months of starting at any dose above 10mg. Now she has not only to be sure you are on enough pred to manage your symptoms, she has also to allow you to reduce slowly enough for your body to start producing cortisol again. It won't do so until you are below about 8mg pred dose - and it would be pointless testing for "steroid dependency" as she terms it at the current dose. Most doctors won't do it until 5mg.
Some people never have raised markers ever - and a lot more don't have raised markers while they are on pred, it is just so, and that is why SYMPTOMS always trump blood tests. It doesn't matter how fast you taper really as long as you don't have problems so it shouldn't matter you reduced fairly quickly to 10mg. But you do need to taper slowly now - and listen to your body. If the PMR symptms return - you are at too low a dose. If you felt good at 8mg that is where you need to be - but it may need a bit more for a few days to clear out the accumulated inflammation that is obviously present. Three of four days at 10mg say may be enough and then you can drop straight back to 8mg and see how you do.
And maybe these links may be useful for your doctor's education:
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
On average, PMR lasts just under 6 years, very few are able to get off pred in under 2 years. And once you are below about 9mg there are very few extra adverse effects that wouldn't have been found in a matched group of people who were not on steroids. She is worrying unnecessarily. It doesn't mean you wont' get lower - just not yet. Which after only 10 months is hardly surprising.