Maybe a silly question but......
Posted , 11 users are following.
I am in lots of pain, (all over) with fatigue etc...have had PMR 6 years and cannot get below 10mg without the latter....I have posted on here many times....but my question, (which maybe pointless!) is when I see my doctor on Monday...is there any point in asking her for an adrenal stress blood test. The reason I ask this, is because I seem to have the symptoms associated with it....but am I on too high a dose?
Thanks for any replies.....
0 likes, 16 replies
lilian05079 linda17563
Posted
Prednisolone steroid suppresses the adrenals and all the endocrine system such as hypothalmus adrenals and cortisol so you will have symptoms of adrenal stress/fatigue....when you taper off preds your adrenals and cortisol and endocrine system slowly returns over time...but it can take up to 2 years for your adrenals cortisol and hypothalmus to function properly. This is why you have to come off preds very slowly or you will experience bad side effects because your endocrine system is not yet functioning normally...so all in all i think asking your doc to do a blood test for adrenal fatique/stress would serve no purpose at this point until you have tapered off preds completely over a long length of time.....best wishes
BioMedGeoff linda17563
Posted
I have had PMR for 12 years and only twice been below 7mg of prednisolone. You must bear in mind that prednisolone does not cure PMR but reduces the associated inflammation to enable to be free of the classic symptoms of PMR. Naturally you adrenal gland produces approx 7mg of corticosteroid a day. From your description of your current symptoms, I would suggest that you are currently not taking enough prednisolone. May I suggest that you increase to 12/12.5mg for a couple of days to see if you get relief. You could always revert to 10mg immediately. If 12/12.5 does not give full relief, you may need to try 15mg. Good luck, Cheers Geoff
linda17563 BioMedGeoff
Posted
Yes maybe it would give me some relief going higher....did go to 12 for 3 days with no relief, but the side affects are unbearable, .......I just fear I will never get off them...and still feel so ill while taking them.....after all these years....
?The hospital is not even sure after all this time that I have PMR.....but doesn't know what......
?May I ask if after all these years still taking the dose you are on that you feel reasonably well?
Thanks for your reply...
lilian05079 linda17563
Posted
It took me best part of a year to taper off preds...i was sooo determined to get off them because of how they were making me feel.....when i took my last 0.5mg a few days later i started to get withdrawal symptoms.....shaking, crying and feeling very anxious and generally awful...then a few days later i started getting pain mild at first then the most horrendous pain i have ever had but it was in my bones. This happened because long term steroids use affects your bones.....moving on i went to docs who gave me tramadol pain killers and Voltarol rub in cream..which is marvellous!.....I rode the storm because of my determination to never go on steroids again....fast forward...10 mnths later i feel so much better pain is now localised to my shoulders and arms it was in every bone in my body prior and the tiredness has got much better....my endocrine system is returning to normal slowly...but it will take up to 2 years to be functioning normally again...i am soo glad i fought to get off preds. I know sometimes they are necessary and they do save lives..but i would never have taken them to begin with had i known the consequences..i knew nothing about them at that time i am sure i could have dealt with the pain how i am dealing with it now with painkillers and Voltarol..of course there is GCA which could happen with PMR....but cross that bridge if you come to it..i think doctors are too quick in describing preds...i send my best wishes to you for your success in getting off steroids/preda
lilian05079
Posted
Sorry meant 'prescribing preds'
linda17563 lilian05079
Posted
How quickly did you drop, and from what mg? That's very interesting to hear, I have posted on here before that my husband has said, if you feel this bad on pred......get off them and take painkillers....I amhousebound now with pain etc......so would be prepared to shut myself away to do it, if I'm to feel better after.......just want to be able to live a fairly normal life!
After I see my doctor on Monday I will put this to her....did you tell yours?
Thanks for your story.......love it, gives me hope....feel so trapped by it all....
lilian05079 linda17563
Posted
Hi linda17563
I was prescribed 15mg preds in April 2016 doc diagnosed PMR and referred me to a rheumatologist...although the preds took away the pain in a week.....i was feeling awful. I felt very tired and lethargic and picked up every virus that was going..because they suppress the immune system. I felt very down and depressed....i eventually saw a rheumatologist who diagnosed PMR...and because i had been on the preds for a month he told me to drop to 10mg a day....which i did still no pain and still felt like i was another person and not me....by the time i saw the rheumy again 2 months later....i had shingles... kicked off by the preds and also had eye infections they were very dry and i had a very dry mouth no saliver and also cataracts....very tired but couldn't sleep i had none of these problems prior to pred....by this time i was in a state. So my rheumy told me to start taking 5mg which i did for for 2 months and then to 4mg for a month..then 3mg for a month by this time i was starting to feel some pain ..then 2mg for a month then 1mg fir a month then 0.5mg for a month....I have explained the withdrawal symptoms...but my doc did help she gave me diazapam for the shakes and panicky feeling plus the tramadol and voltarol rub in cream for the pain.....it was approx a
10 months to year of tapering.....best thing i have done although it wasn't plain sailing but i've got there through sheer determination and help from my rheumy and doc.....it may not work for you so check with your doc/rheumy first......my best wishes to you hoping you will get to where you want to be...
Anhaga linda17563
Posted
I don't think you wait to be completely off pred before asking for test if you feel you have symptoms. You would need to be at physiologice dose, maybe around 5 or so. If your adrenals are not producing cortisol, even with slow taper below 8 or 7, you would become very ill if you stopped your pred completely.
linda17563 Anhaga
Posted
Anhaga linda17563
Posted
I was really responding, I suppose, to a comment above from someone that you'd need to be completely off pred before the test.
EileenH linda17563
Posted
I think before that you need to have a long and careful discussion about what it is you have. It is perfectly possible that what you have is not PMR or not JUST PMR. It is also quite possible that you have "just" PMR but are one of the small number who have it for a long time and/or need higher doses of pred to manage it. There are patients who need above 10mg, considerably above 10mg sometimes, and for a very long time. I know that isn't what you want to hear - probably your rheumy may not agree. But it is a reality I'm afraid.
As for "am I on too high a dose": some people only absorb about 50% of the dose they take. Others absorb 90%. The physiological dose, the equivalent dose to what the body would make naturally, is about 7.5mg. So if you are a 50% person and on 10mg, yes, you could be only absorbing about 5mg and for some people that might not be enough. But there is usually no point in doing the synacthen test until you are on well under 10mg - so persuading a doctor to do it is likely to be difficult. You can ask though.
linda17563 EileenH
Posted
Thank you Eileen, I certainly will be having a very detailed discussion with my doctor.......I am writing every symptom down, it' s quite a list!.....the last time I saw her she said, do things your way.......but with the rheumie saying he's not sure if it is or ever was PMR......,I feel caught between a rock and a hard place.........I will be asking for as many blood tests as possible!......what else can I do. What do you say to people who simply cannot tolerate the side affects of pred?
Thank you much appreciated......
mimi1950 linda17563
Posted
They're so many decisions to make when it comes to health. You have to keep weighing the pros and contras.
IMO, with PMR, you can choose to live your life more or less as before in exchange of the Prednisone side effects, most of which you can control by lifestyle changes, or , you can quit all your activities, become dependent on a caregiver and hope you are one of the few lucky ones whose PMR disappears in 3-6 years , after which you can start rebuilding your muscles that would be athrofied after all the years of inactivity, in exchange for not taking any prednisone.
Also, having inflammation in your body untreated for so long is a big risk.
I haven't heard one health guru, even naturopaths that advice not to take Prednisone for PMR, as now they are saying that PMR and GCA are on the same spectrum.
My mother had a type of parkingsons disease.She had been super advanced when it came to natural food and health, swore she would never take any drugs , etc..and yet when she got the horrible symptoms that were controllable with Ldopa, she chose to take it despite the involuntary movements that they were sure to cause.
linda17563 mimi1950
Posted
The problem for me is, I have never had any resemblance of normal life since being on pred......I only wish I had......then to cap it all the Rheumie says he's more than sure it 's not PMR......would you want to continue with s drug that makes you feel so ill if not necessary. I am under no illusion that he is right or wrong, but sure I will find out in month or two! He's also one of those that says my readings are very low, but they would be on pred anyway......I don't trust the medical profession to help me either way.....so feel I must try this myself........
This forum had given me more valuable advice than anywhere else......sad to say, but that's a fact.......
I am not against meds at all, just wish I could tolerate them!....I envy people who can!
Thank you......keep well, and your mother...
mimi1950 linda17563
Posted
Yes, I agree, I would not take any Prednisone, either, if I weren't convinced I had PMR. I was started on 10mgs but it didn't do a thing, so I went up to 15, and sill nothing, but when I went up to 20, the improvement in a few hours was sectacular. That's when I was convinced I had PMR and had to accept that I needed Prednisone.
I was prescribed Methotrexate which I took for about 8- 12 weeks( I don't remember exactly).The side effects were so bad that I felt worse than when I had PMR symptoms without pred. So taking mtx was defeating the purpose.
For you it may be the same, if you feel better without pred than with, either you aren't taking a high enough dose or you have something other than PMR as your rheumi says.
I hated it before I got the official diagnosis, so I really relate to your dilema .my doctors were beating around the bush just to avoid admitting I had something that required long term steroid treatment. I was practically bed bound for 6 months and my muscles had athrofied to the point of not being able to walk more than a block( 100 meters?)
I hope you get some answers soon.
linda17563 mimi1950
Posted
How I envy those that have a GP that oversees and understands things, and don`t get referred to a Rheumie.....worst thing that ever happened to me....such an arrogant lot......I see mine for the last time next month (hopefully)....he insists, and I say why?......but I have worked it out, when I first saw him he asked if I would sign up for Vasculitis research, which I was more than happy to do, if it would help others get a definite diagnosis!....now I think he just wants to see my blood etc....maybe I`m his puzzling guinea pig!