Reaching lowest dose of Prednisone

Thank you for the information. I guess I'll try reducing on your schedule at 8 mg for awhile.

5 minutes agoThe Rheumatologist gave me Methotrexate and told me to immediately drop from 15 mg pred to 10 mg.

The Methotrexate made me so extremely fatigued, nauseated and half my hair fell out.  I stopped it.

After several Rheumatologists who told me I was crazy (only 1 told me not to dose down no more than 1/4 mg (.25) in a month), when I said every time I dosed down I relapsed.  The one rolled her eyes at me!  Then says that never happens and anyone she has had she just doses down and it is gone.

Do they overlook the obvious.... If it keeps relapsing, then I still have it!  The SEDs etc. are slightly elevated, but I am also on prednisone that helps disguise it.

I went back to my GP, and he is willing to work with me on dosing down.

I am soooooo grateful I found this group, because I have made it down to 3 mg., but I am in terrible pain.  I want off the prednisone so bad.  The lethargy is really zapping me physically and emotionally.  It seemed to start getting worse under 5 mg.

Has anyone else experience a "fight or flight" type reaction to a situation of extreme stress or something terribly emotional that was unexpected, and your body can't kick in because it has been on artificial steroids for so long, that you have a relapse?

I am just so glad to read that others are experiencing this same dosing down dilemma, as well as to read about the side affects and especially the lethargy.  I thought it was just me.

Last question... has anyone had problems with their eyes, vision, blurriness and extreme tiredness in their eyes.  We are trying to figure this out, and I did not know if it is another side-affect that others are experiencing.  Of course there is always the fear of Giant Cell Arteritis, but my GP says as long as I am on prednisone that won't happen, but what if the dose is too low?  So many question I have. 

Thank you all!

Thank you so much!  This has been an eye opener, and makes me feel somewhat "normal" in a very not normal situation.

Last note- Cut out all salt.  I read every label and there is so much salt in processed food.  I rarely eat out because of it.  I even make my own tortilla chip, homemade soups, etc. to avoid salt.  I am 5'2 1/2 anf gained 30 lbs.  I lost 20 of that just cutting out as much salt as I can.  I know when I had too much salt, because I will have that "pie face" in the morning.  The only good thing about that is it hides any wrinkles [smile]

Jacqui, Eileen is great and she will likely see this post.  But please be aware that the post you are replying to is four years old and most of the people you have replied to here may not be using the site any more or may not see your comments.  You have some important questions.  Please make a new post that all the current forum members will see.  😉

Thank you for the information.

5 minutes agoThe Rheumatologist gave me Methotrexate and told me to immediately drop from 15 mg pred to 10 mg.

The Methotrexate made me so extremely fatigued, nauseated and half my hair fell out.  I stopped it.

After several Rheumatologists who told me I was crazy (only 1 told me not to dose down no more than 1/4 mg (.25) in a month), when I said every time I dosed down I relapsed.  The one rolled her eyes at me!  Then says that never happens and anyone she has had she just doses down and it is gone.

Do they overlook the obvious.... If it keeps relapsing, then I still have it!  The SEDs etc. are slightly elevated, but I am also on prednisone that helps disguise it.

I went back to my GP, and he is willing to work with me on dosing down.

I am soooooo grateful I found this group, because I have made it down to 3 mg., but I am in terrible pain.  I want off the prednisone so bad.  The lethargy is really zapping me physically and emotionally.  It seemed to start getting worse under 5 mg.

Has anyone else experience a "fight or flight" type reaction to a situation of extreme stress or something terribly emotional that was unexpected, and your body can't kick in because it has been on artificial steroids for so long, that you have a relapse?

I am just so glad to read that others are experiencing this same dosing down dilemma, as well as to read about the side affects and especially the lethargy.  I thought it was just me.

Last question... has anyone had problems with their eyes, vision, blurriness and extreme tiredness in their eyes.  We are trying to figure this out, and I did not know if it is another side-affect that others are experiencing.  Of course there is always the fear of Giant Cell Arteritis, but my GP says as long as I am on prednisone that won't happen, but what if the dose is too low?  So many question I have. 

Thank you all!

Thank you so much!  This has been an eye opener, and makes me feel somewhat "normal" in a very not normal situation.

Last note- Cut out all salt.  I read every label and there is so much salt in processed food.  I rarely eat out because of it.  I even make my own tortilla chip, homemade soups, etc. to avoid salt.  I am 5'2 1/2 anf gained 30 lbs.  I lost 20 of that just cutting out as much salt as I can.  I know when I had too much salt, because I will have that "pie face" in the morning.  The only good thing about that is it hides any wrinkles [smile]

It took me a long time to realise that some of us are such delicate flowers that even 1mg at a time "overnight" isn't do-able. I wonder if I would have been on an even lower dose than I am now if that had dawned sooner. 

We've got a few doctors in tow on this - but others are still ignoring the evidence in front of them that their patients simply aren't getting anywhere with their big steps version. Once that happens they start digging out labels like "steroid resistant" and "steroid dependent" or even "not PMR" and want to add in other drugs which still don't work. 

I keep saying - never mind the vastly expensive trials with new drugs that no one is going to approve for use in the NHS as it is at the moment and concentrate on using pred BETTER. It's cheap as chips and works - just make it work without as many flares.

Thanks again.

Good afternoon Eileen,

I have just been given Prednisolone 2.5mg Gastro-resistant tablets by my doctor after having a blood test which still shows inflammation. I have always had that result with a blood test, but seemingly that does not show where the inflammation is in the body.  I am now down to 10mg daily for my PMR, and apart from slightly aching arms and wrists I am ok.                                                                                                        Being very lethargic is really my problem just now, as I really do not feel like doing much at all. Quite happy to sit with my feet up and read a book, but I know that I must move myself which I do under sufferance.

Thanks for all your help in the forum.

Regards,

Grace

If you are still indicating there is inflammation I don't see why you're being expected to reduce - no it isn't specific but if you are going to bother measuring it in PMR there isn't much point ignoring it! Oh well!

I had enteric coated for a long time and liked them. Then I got a dodgy batch of 5mg tabs, it was as if there was no pred in them! They 2.5mg ones I got were fine but of course I got through them a bit fast! Then I was switched to Medrol here in Italy - and that was a whole other story!

I am in the US.  Diagnosed with PMR in January of 2015.  Prescribed 20 mg dose of Prednisone daily. Reduced pain and stiffness significantly in two days.  Felt great for about 4 weeks.  Doctor reduced me to 17.5 mg and within two days symptoms returned.  He had me take 40 mg for two days then 20 mg again.  At this time I started having side effects to the prednisone: weight gain, swollen face, eyes, neck, arms, legs, ankles; blurred vision, irritability, hard time concentrating, fatigue.  I do not even feel like myself anymore.  After going to the doc on 4-17-15, discovered my Sed rated was lower but still elevated, CRP elevated and A1C up to 7.1.  Even though I still show inflammation in blood tests, doctor is going to try and lower the prednisone because of the side effects I am experiencing.  Was on 20 mg for 3 months and am lowereing by 2.5 mg every two weeks.  I just want to feel somewhat normal again.  Anyone else have these feellings while using prednisone?

I would suspect your side effects started because of that 40mg boost, short though it was. The reduction was - for you - too big a step. 

Basically you have a choice - you get the inflammation under control with 15-20mg pred over a period of about 6 weeks and then reduce very slowly and accept the side effects or you accept the "side effects" of PMR, if that is what you have and that is what it sounds like by your response to the initial pred dose. 

Most people have experiences like this with pred - some worse than others. But unless you take enough pred you won't manage the symptoms and then there is little point taking any at all. To be on 20mg for 3 months is rather a long time - and does suggest there may be something else going on besides the PMR.

If you follow this link

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

you will find links to all sorts of resources and the "Bristol paper" in it is a paper written for GPs to help them manage their PMR patients without recourse to specialists. They start at 15mg - and then reduce in 2.5mg steps. We, as patients, have had the experience that there are many patients for whom this is too large a step once their body has got used to its pred supply. In the replies section you will find a very slow reduction programme which has worked for everyone who has tried it so far - you are looking for the lowest dose that manages the symptoms, not aiming for zero. In the early stages this management dose may be relatively high, it will reduce later but it is very dependent on the activity of the underlying autoimmune disorder that causes the symptoms to which we give the name PMR. The fatigue is part of the underlying autoimune disorder - the pred does not help that, you must try to manage it with rest and pacing yourself. Google "the spoons theory by Christina Miseriando" for a parable about that.

At various times I have put on something like 40lbs in weight - I'm a whole 5'1". And I have lost it again. I have never had blood sugar problems - maybe because I have cut carbohydrates drastically and lost that 40lbs as a result. Cutting carbs is also a good way of managing raised cholesterol levels.

But it is also not a case of pred is bad, no pred is good. PMR causes inflammation all over your body - and it is not innocent. In the long run it can give rise to other illnesses, especially cardiovascular disease and cancers. Accepting the downsides of pred reduces those aspects.

I know it sounds hard - but it isn't a simple equation.

Ellen H., thank you so much for your response.  I am almost 70 years old and am a whopping 4'11" tall.  Although I have just been diagnosed with PMR since January, I feel I have live with it for longer.  So am just beginning my journey to gain knowledge and understanding of a disease I had never heard of prior to January.  I also think I have something else going on in addition to PMR and so does my doctor. I have tightness in the muscles in the ribcage area of my back on each side of my spine and tightness between my shoulder blades.  Have never taken Prednisone before so am experiencing side effects I have no experience with.  I plan to explore the web site as you suggested.  It is good to know there are others, unfortunately, who are going through the same things I am and to be able to communicate with you and them and read about their journeys with this disease.

 

Look up myofascial pain syndrome - it often occurs alongside PMR in the form of trigger points on either side of the spine in the shoulder (sort of where your bra strap is), alongside the mid spine at rib level and in the lower back where the dimples on your bottom are. It causes muscle spasm - initially just tight muscles trying to protect themsleves but as it worsens can really cause spasms that are excruciating. The trigger points are concentrations of the same substances that cause the PMR pain and stiffness - cytokines. They are shed generally in the body in thevery  early morning leading to the morning stiffness and that is why taking your pred as early in the morning as possible will help that - many take it when they wake and then settle down for another couple of hours by which time it is having its effect.

Yes - my daughter is a whole 4' 10 1/2" - I'm tall in comparison! There is no place for an extra pound or three is there! She has bad asthma and has been on high doses of pred for the last couple of months - immediate blossoming as a result!

Truth be known....I am actually your daughters height.  Just rounded up to 4'11"!!  Thanks for the info on myofascial syndrome.  How long have you had PMR?  Do you go to a rheumatologist and internist?  I don't know how much my internist knows about PMR.  Thanks so much!!

I've had PMR for 10 years or so - for over 5 years it wasn't diagnosed ("too young at 51, and normal bloods". Then it went totally pear-shaped and I finally got pred. Miracle in 6 hours!

The rheumatologist I saw wasn't interested in my response to pred, he wanted it to be something else and use another drug - in the UK you are referred by your GP to a hospital. I never went back. A different GP in the practice accepted it was PMR and wrote the prescriptions - I wouldn't have seen the rheumy had I seen her first. Here in Italy I see my GP for prescriptions and that is all. She worked in rheumatology in a previous life and trusts me to manage my dose - I'd like to get lower than the 4mg Im on, she isn't bothered!

Follow this link

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and download the "Bristol Paper" and the Mackie and Mallen paper from the BMJ in the research guidelines link. They are aimed at non-specialists to help them manage PMR. Maybe your internist will be interested and find them helpful.

Hi, I was diagnosed with "large vessel vasculitis" in Nov 2013 and started on 60mg prednisolone in Feb 2014.....after various infections and trying to decrease the dose---I have struggled through the last year and am now down to 7mg per day. I live part time in Spain, and the specialist here and the one in the UK recommend totally different dosage reduction schedules. The UK one says 1mg every 2 months and the Spanish one 2.5mg every month!!!!! I have follow up appointments with both and dont want to upset either.........What should I do? Follow something half way between do you think?????!!!!!!

 

Personally I'd stick with the version the UK doctor wants to use - 7mg or thereabouts is the dose at which your body needs to start to make its own cortisol (the natural corticosteroid) again. For some people that is no great problem, especially when they haven't been on a high dose or for very long but for others it is less easy. 1mg every 2 months is a reasonable rate - below 7mg is low dose therapy, the side effects of the pred are far less. In the UK it is slowly being realised that patients do much better when you don't rush at things.

We on the forums have pushed SLOW for a few years now - from personal experience - and have found there are far fewer flares or discomfort from reducing the pred dose as your body protests at losing its fix of pred. The "king of GCA" in the UK tells his patients to reduce very slowly, 1mg over 3 months, once they get to 8mg, by doing 1 month of 8/8/7 repeat, 1 month 8/7/8/7 repeat and one month 7/7/8 repeat before getting to 7mg every day

The Spanish have good research groups - but I'd be surprised if the doctors have as many GCA patients as a UK rheumatologist though I might be wrong. Can you explain to the Spanish doctor that you want to be able to keep on good terms with your UK doctor - after all, if you return to the UK you would have to work with him in future! Who provides your prescriptions? Your UK doctor will provide enough pred to do the 1mg version presumably. I have PMR and when I had the same "problem" before we moved here to Italy full time I just said the symptoms were flaring if I tried to reduce faster. Now it isn't a problem, my GP here is the queen of slow reduction - she thinks even I try to go too fast! And I'm the queen of the "dead slow and nearly stop" reduction plan.

Thanks. I had more or less decided to try to follow the RCP 2010 guidelines which say reduced by 1 mg every 1-2 months depending on "patient response and preference"!! I do have a facility here to get my ESR/CRP checked before a change the dose, as I dont get symptoms back like PMR....its just the risk of relapse I want to avoid. So far, the only time the markers have gone up again have been with some sort of infection. My initial symptoms were fever, right headeache inside, and extreme lethargy. I havent had those back since the beginning, but tests then showed my aorta and carotid arteries were affected.I had a big load of steroids early on (about 3 months on 60mg) so I am keen to reduce but not increase the risk of relapse. Thanks again for your comments and help. What are you doing in Italy??

Same as you in Spain probably! 

My husband decided he couldn't take the NHS any more - all admin and cutting his budget instead of research and patients - so he helped them cut the departmental budget by taking early retirement as soon as he thought we'd enough income until our state pensions started. We had had some spare money about 10 years ago and had a choice: pay off the UK mortgage or buy a bijou little residence abroad. We lived/worked in Germany when our daughters were small and always said we'd return to a German-speaking area at some point. Our favourite skiing area was the Dolomites and it is German-speaking on the northern side - so we came to look and found a 3-room flat we could afford. That's all 2 people need to live in - there is an enormous balcony, cellar and enclosed garage. And we have a camper van. My husband works with someone a couple of days a week in Innsbruck - an hour and a half drive - which keeps the brain in gear and provides a bit of pocket money. I have been translating until last year - the "crisis" turned that tap off eventually but I don't mind, I "do" 3 PMR forums, moderating and providing "expert patient" info. I do some stuff with one of the research groups - again as a patient advisor. All good fun.

Sounds great! We also came out of the NHS but bought a business over here which has been successful but my illness has meant I couldnt really keep going and have now managed to retire at last. We are renting a flat but havent yet decided what to do in the longerterm. Still have a cottage in the UK. 

Will keep in touch!!

 

Yes, do - we didn't want to work so we hung on until we had enough to manage even if we didn't have my income - it was always part-time and for extras really. We have 3 places in the UK - 2 flats for daughters working in the NHS and no money (they pay rent I hasten to add) and when we sold our UK house the market had gone pear-shaped the week before it went on the market! Had we been able to sell it 3 months earlier (the NHS made a major mess of OH's pension stuff which delayed things) we would have got about 70K more as it was exactly what someone wanted, close to the hospital and 3 double bedrooms but they bought 2nd best along the road   As it was someone in the same village wanted our house but couldn't sell theirs - so we part-exchanged, lived in it for 6 months ourselves and then came here and rented it out. It's all income! Really wouldn't want to live in it - the house is cute and has a lot of potential but I have no desire to go back to Durham!

I am in NZ. Diagnosed with PMR in April 2015. Prescribed 20mg daily. My journey is very similar to yours. I don't feel like myself anymore either. Yes I am having the same feelings as you. I am looking  on Dr Google to remind myself why I need to take this drug. Extremely painful stiffness versus a whole new set of unpleasant problems. I have similar side effects plus some other weird ones. Will we get over the fatigue etc as our bodies adjust ?

The fatigue is mostly due to the underlying autoimmune disorder that is the cause of the symptoms we call PMR. Unfortunately the pred has little or no effect on that so the fatigue remains for a long time even with pred. At higher doses it may outweight the fatigue - but when you do too much because you feel so good on the pred it will leave you exhausted the next day (or longer). Pacing yourself is essential - know your limits and be strict about not exceeding them. Resting before doing something does help to allow you to do a bit more on special occasions or having a meltdown early evening.

Hi Linda 82701,

I'm in Canada and was recently diagnosed with PMR in March, 2015.  The disease came on very fast, the pain was excrutiating, it started in both my knees and quickly spread througout my body.  My GP sent me to a Specialist at Toronto Western Hospital, who put me on a daily dose of 40 mg of Prednisone and within 48 hours the pain magically disappeared!  My problem is - I'm a diabetic! Prednisone is wreaking havoc with my diabetes so much so that I've ended up in hospital a number of time with a blood sugar level of 31.1 mmol/L.  Both my GP and Rheumatoid Specialist are now rushing me through the weaning process of Prednisone, Like you, I've been dropping 2.5 mg every two weeks with the hopes that my symptoms don't come back! I've experienced some aches and pains througout my body, mostly in my neck and shoulders but it's hard to say if it's symptomatic of PMR or part of the Prednisone weaning process?  I'm down to 12.5 mg daily...Like you Linda82701 I too just want to feel normal again...my diabetes is currently out of control which, in turn, makes me feel quite ill and the Prednisone just exacerbates my feelings of not feeling well.  Luckily, I haven't gained any weight while on Prednisone but I put this down to being a diabetic and habitually counting calories.  I want to get off Prednisone as soon as possible so that I can be back to the way I was. 

What a shame your doctor started you on such a high dose - that is the starting dose for GCA. PMR typically responds well to 15-20mg/day and then you reduce to a much lower maintenance dose, avoiding many of the problems of high dose pred. 

As long as the autoimmune part of PMR is active you will need pred to manage the symptoms - or you have to accept the pain and stiffness so it isn't as simple as just getting off pred asap. PMR comes when it likes and goes when it will - there is nothing you can do to hurry that.

Can you not reduce your carbohydrate intake to help manage the diabetes rather than calorie counting? The American Diabetes Association has recently approved the low carb approach as a means of short-term management of diabetes - up to a year or two I think, mainly because they feel that low carb is a difficult diet to stick to but I know plenty of people (including me) who have no problems sticking to it. I do it to lose weight while still on pred but there are diabetics who find it ideal. It is an obvious approach for someone who needs pred and for whom management of their BS becomes challenging.

You might find a blog called Diabetic Mediterranean Diet blog of interest. It is written by a diabetic doctor so not total internet hype.

Some people find that methotrexate does help manage on a lower dose of pred - they are in a minority but it is always worth a trial to see if you are one.

Hi EileenH...thank you for your response

The suspicion at first was that I also had GCA, I was experiencing many of the symptoms, so rather than wait and possibly have vision loss, they gave me a higher dose of Prednisone.

As a diabetic, I do limit my carbohydrate intake, if I didn't my numbers would be all over the place, but as a weight loss tool I would find it too difficult to stick to - that wouldn't work well for me. Counting calories is something I've always done, I do it to maintain my weight.

My doctor has mentioned Methotrexate to me and that she'd like to get me to a point that she can introduce this to me and see if I respond to it better than Prednisone...not sure if she wants me to take both Pred and Methotrexate?  I'll know more when I see her next month.

Thanks for the diabetic blog information, I'll most definitely check it out.

If it is PMR/GCA then methotrexate alone won't cut the mustard. There is no reason why she couldn't start it now as far as I know - they do in Germany I believe. It is a DMARD, a disease modifying anti-rheumatic drug, and is normally used for RA. However, it changes the way your body metabolises pred and in some people it allows them to get the same result for a lower dose of pred. It rarely REPLACES pred though and definitely isn't a substitute for pred in GCA. There are other drugs that are being used for people like you where it is imperative to reduce the pred dose, one trial at present is with toxcilizumab but it too is being used alongside pred - in suspected GCA it would be unethical to do otherwise since pred is proven to work in GCA and until something else isproven to be as reliable you can't put someone's vision on the line which is the risk with not using pred. But for most people the other options seem to work for a while but then they cause problems too - it is a case of suck it and see. 

Good luck and keep in touch

Myself having tapered down on Prednisone, I would think that at your current dosage something like 1mg/month would make more sense than any 2.5mg drop-off. Especially in your case with risk of arteritis?

So you could say that I am in between what your two doc's are recommending.

I just last week have been told I have Inflammation in the blood and my shoulders and upper arms are the worst, and the doctor wanted to try Prednisolone 20mg daily over the weekend to see  if it could be PMR, and  if it would help, I couldn't believe it the next morning I felt like the tin man in the wizard of Oz and someone had oiled my joints but weird side effcts like tightening,of my face a burning sensation dizzyness so it's been a week now so I going to see what happens if I stop cause I think it will be another trip to doctors cause do you feel the urge to empty your bladder more often too

  

If you have PMR and stop the pred the symptoms will return. You are in this for the long haul I'm afraid. The doctor meant the SIGNS of inflammation are in your blood - the inflammation is in your muscles and maybe joints. The pred will manage it until the real illness burns out and goes into remission.

You won't stay at 20mg for ever - the doctor will reduce the dose slowly to find the lowest dose that manages the symptoms as well as that starting dose is doing but it is a slow process and if you try to rush it it will cause problems. Be patient - the sode effects of pred do settle down some after a while. Don't give in to your feelings of hunger and cut your carbs lots - that will help quite a bit with any tendency to gain weight. But it is worth it, honestly!

12.5 isn't too high any more.  Could you slow down your tapering for a bit to give your body a chance to catch up, and then start weaning at something closer to 1 mg a week until you are at 10, and then more like 1 mg a month, provided that your symptoms stay under control, of course.  As you are in or near Toronto I'm going to suggest you google bioflex toronto kahn and investigate whether light therapy might help you, I'm finding it helpful.  It has been studied and found effective in reducing inflammation in rheumatoid arthritis, but any help for PMR is, I'm afraid, still anecdotal.

Hi Linda, I was diagnosed with PMR in March 2016. Extreme pain & stiffness to my neck, upper arms, hips, groin, & knees. My Rheumy wanted me to take 15mg of prednisone. I refused. He then said 10mg daily was the lowest he could go. I thought since I was in pain the past 3wks. I'll try 5mg the first day. It worked!!! My CRP went from 16.8 to 3.5 almost normal. My pain & stiffness was 95% better!!! After 1 month I started having SOB, chest pains, hyper and fatigue, irritability, sleep disturbance, intermittent headaches, & just feeling out of sorts. I weened myself off after being on it for 2 1/2 months. I take supplements and foods for inflammation and immune building. I still have the pain and stiffness. I will take a NSAID 1x a week. Tylenol arthritis a couple times a week. That does alleviate the pain and stiffness. I'm hoping the PMR will burn itself out in the year or two as they say. I'm 64 and still working as a nurse. I can't wait to retire in a year and 6 months.

The Rheumatologist gave me Methotrexate and told me to immediately drop from 15 mg pred to 10 mg.

The Methotrexate made me so extremely fatigued, nauseated and half my hair fell out.  I stopped it.

After several Rheumatologists who told me I was crazy (only 1 told me not to dose down no more than 1/4 mg (.25) in a month), when I said every time I dosed down I relapsed.  The one rolled her eyes at me!  Then says that never happens and anyone she has had she just doses down and it is gone.

Do they overlook the obvious.... If it keeps relapsing, then I still have it!  The SEDs etc. are slightly elevated, but I am also on prednisone that helps disguise it.

I went back to my GP, and he is willing to work with me on dosing down.

I am soooooo grateful I found this group, because I have made it down to 3 mg., but I am in terrible pain.  I want off the prednisone so bad.  The lethargy is really zapping me physically and emotionally.  It seemed to start getting worse under 5 mg.

Has anyone else experience a "fight or flight" type reaction to a situation of extreme stress or something terribly emotional that was unexpected, and your body can't kick in because it has been on artificial steroids for so long, that you have a relapse?

I am just so glad to read that others are experiencing this same dosing down dilemma, as well as to read about the side affects and especially the lethargy.  I thought it was just me.

Last question... has anyone had problems with their eyes, vision, blurriness and extreme tiredness in their eyes.  We are trying to figure this out, and I did not know if it is another side-affect that others are experiencing.  Of course there is always the fear of Giant Cell Arteritis, but my GP says as long as I am on prednisone that won't happen, but what if the dose is too low?  So many question I have. 

Thank you all!

Thank you so much!  This has been an eye opener, and makes me feel somewhat "normal" in a very not normal situation.

Last note- Cut out all salt.  I read every label and there is so much salt in processed food.  I rarely eat out because of it.  I even make my own tortilla chip, homemade soups, etc. to avoid salt.  I am 5'2 1/2 anf gained 30 lbs.  I lost 20 of that just cutting out as much salt as I can.  I know when I had too much salt, because I will have that "pie face" in the morning.  The only good thing about that is it hides any wrinkles

 

"The one rolled her eyes at me!  Then says that never happens and anyone she has had she just doses down and it is gone."

Any doctor who rolled their eyes at me would find it wasn't the PMR that had gone but me! How unprofessional.  She is of course totally wrong - not just because the PMR doesn't go away with the starting dose which is presumably what she thinks but also some people are so sensitive to a change in dose they suffer steroid withdrawal pain that is indistinguishable from PMR for many people.

Your excess fatigue since 5mg is because your adrenal function is lagging behind your reduced dose - and do be careful. I realise you want off pred, who doesn't, but if your adrenal glands are not making up the amount of corticosteroid to the amount your body needs to function (the equivalent of about 7mg pred) then you can become seriously ill with secondary Addison's disease. The pain COULD also be to do with adrenal function - but far more likely is that - as you are obviously aware - the cause of the PMR (which is just the name, not the disease) has not yet burned out. If it is still active and you force the reduciton you will just end up back in the same state you were originally and need a much larger dose of pred to manage it. Anyhting under 5mg is a very low dose and won't cause problems.

But your GP is wrong - as a lot of people will tell you. if you reduce your pred dose of course GCA COULD appear. If a low dose of pred protected you rom GCA they'd use it. They don't.

This is a 4-year old thread - I really don't know how many people in it are still here so you would be much better starting a new thread that more people are likely to see.