Severe fatique but am down to 1 mg pred and still on methotrexate
Posted , 14 users are following.
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?
1 like, 36 replies
tavidu marilyn79703
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pauline36422 marilyn79703
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EileenH marilyn79703
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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!
marilyn79703 EileenH
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EileenH marilyn79703
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Yes, everyone is excited at the thought of getting off pred as soon as possible but sometimes it bites back.
pauline36422 marilyn79703
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lodgerUK_NE pauline36422
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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.
marilyn79703 lodgerUK_NE
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lodgerUK_NE marilyn79703
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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.
Kassie_beetle marilyn79703
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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
marilyn79703 Kassie_beetle
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Kassie_beetle marilyn79703
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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
jo42444 marilyn79703
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adranal gland
marilyn79703 jo42444
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jo42444 marilyn79703
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dan38655 jo42444
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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.
EileenH jo42444
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The idea is to find what the starting dose does for you and then look for the lowest dose that achieves about the same result. Pred doesn't cure PMR, it can't, nothing can, and you are supposed to be using it to manage the symptoms. You are not being allowed to do that - your doctor is reducing you according to some plan that simply doesn't fit your illness. As long as the underlying autoimmune disorder is active you need pred - and nothing anyone can do will change that.
Since you got to 5mg your body is protesting at that speed - and it is almost certainly lack of adequate adrenal function that is causing the fatigue. The aim isn't to get off pred come what may - it is to allow you to function at a fairly normal level even though you have PMR. It isn't perfect, the drug has side effects but one of them is very useful: you feel reasonably well when it is used properly.
Remission does happen - but it can take a long time. I've had PMR for over 10 years, 5 of them without any medical help, but I have only been as bad as you are describing when having a major flare. I have been there though - and it is only proper use of pred that has allowed me a pretty good quality of life for the last 3 years. I have reduced 1mg at a time, spreading every reduction over about 5 or 6 weeks - nothing else worked. Previously I got stuck at 9mg, 8mg brought the symptoms back.
If the pain came back when the pred was reduced it almost certainly wasn't fibromyalgia but too low a dose before natural remission had happened. Before that you have to depend on drug-induced remission which should mean low ESR/CRP and reasonably acceptable pain levels.
I've never had raised markers at all - ergo your doctors would say I've never had PMR. One in 5 patients never has raised bloods. The telling difference between PMR and fibromyalgia is that pred will relieve the PMR. possibly not 100% but considerably. Fibro isn't touched by pred - but it is possible to have both at the same time and that may be one reason for not all the pain going. Myofascial pain syndrome is another mimic of PMR and that improves at higher doses of oral pred but often returns as you reduce the dose. It the excess pain that doesn't go is in your buttocks then piriformis syndrome should be considered. Physical therapy and manual mobilisation of the trigger points or cortisone injections are a better solution to these than higher oral pred.
If I were you I would be looking for a different GP who would at least trial you on a course of pred to see if it helps again. If it doesn't then another answer is required - possibly more than fibromyalgia, a diagnosis that a lot of GPs at least use as a get out when they haven't a clue what is going on. If it does help you have not only an answer but also a far better QOL.
EileenH dan38655
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jo42444 dan38655
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EileenH jo42444
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jo42444 EileenH
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EileenH jo42444
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I suppose under the circumstances there is little point taking up-to-date medical literature for them to read? On the other hand - if you aren't taking enough pred to manage the symptoms then there is little point taking any at all - you have side effects but with no benefits to balance things out. But the bottom line is: it can't be cured, it can only be managed whatever the cause is and they are denying you adequate management which they COULD provide if they were willing. I do hope you don't develop GCA - because they can't mess about with that!
I found aqua aerobics rather than swimming helped in that first 5 years - I couldn't swim, it hurt my shoulders and neck too much. Pilates and Iyengha yoga were also good though had to be adapted. Bowen therapy dealt with some of the muscle pain - not all, but what was left was more bearable. An electric blanket used before getting up makes that first getting moving process a bit easier - warm muscles are easier to stretch and once you get them moving it does often improve incrementally so that by the time you go to bed you don't feel too bad and then it all starts over again next morning!
lodgerUK_NE jo42444
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Ask your GP for Double Base Gel (they can prescribe it as you can get thin skinning - if not buy it over the counter) then use it as it says.
There are loads of Tips and Tricks and they are all available in a booklet called 'Living with PMR & GCA' go to the pinned section on this site and take a look. http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316
jo42444 EileenH
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EileenH jo42444
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I'm flabbergasted at the level of ignorance - physios are usually a bit better.
jo42444 EileenH
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lodgerUK_NE jo42444
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Gentle exercise is the key - if it hurts - stop
They is a set of exercises developed by a fitness expert specifically for PMR patients. It can be found if you go to the pinned section and follow the link to the North East - you can download it free of charge.
http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316
jo42444 lodgerUK_NE
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Joanne
jo42444 dan38655
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Joanne
EileenH jo42444
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EileenH
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