PMR, TAPERING FROM 9 to 8

Thank you...I am "layed up" with the foot problem, so I think it might be a good time to try another taper. I will let you know how it goes.

Kathy

Not a good idea at all.  Wait till foot problem has been solved.  You rbody has enough to cope with without asking it to cope with a drop.

Kathy is using one of the two reduction schemes available on the forums which patients worked out for themselves to reduce very slowly. If you really need to at lower doses then cutting a tablet does make the step even smaller but both of the schemes spread the drop over about 4 weeks from every day old dose to every day new dose. 

In addition to the 10% rule - which is still too much for some people there is the "Dead slow and nearly stop" approach which you'll find the details of in the 4th and 5th posts of this thread:

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

Lodger's is very similar, we just wrote it out differently and obviously she uses hers, I use mine ;-)

Im confused...diagnosed with pmr dec 11 14...do people reduce prendisone on thier own? I was under the impression i had to take exactly what my dr tells me to...i know so little about this disease except i just dont feel good..reduced to 17.5 a couple weeks ago and my back is killing me..im so gratefull for this websight...sharon

Hello tuningup, I'm just wondering if you reduced just a nit too quickly. Whilst on the 20 mgs did the pain in your back go away and this pain did it surface as part of your pre diagnosis pain.

many drs and even rheumatologists don't know a lot about PMR/GCA and very often treat us on a wing and a prayer. Plus we are all different and whilst one person can reduce with no problem some of us, because the inflamation is still burning away inside us do to speak find that fast reduction is simply non achievable. Also, because this condition will eventually burn out as and when it's ready and not before, drs try to fit our inflamation to their dose of prednisone when really the prednisone needs to be just a high enough dose yo keep the inflammation in check. There is also a paper called the Bristol PMR plan that explains all about how to diagnose this condition and then in turn treat it. Many of us feel that there are some drs that gave never heard of this paper and attempt tapering and reduction of prednisone out of line with this paper. I try and keep my reduction plan as close to this paper as possible, but I'm lucky as it appears both my rheumatologist and Dr know a lot about PMR and the Bristol treatment plan and along with that take me and any results and how I feel in consideration when reducing. But if you read this paper and believe that your practitioners are not treating you in line with bedt practice then some of us one way other implement it even if our drs don't like it. Christina 

Is there a similar plan for reducing from much higher levels ?  I have glomerunephritis and have been on 70mg for about 5 months, and am now on a taper.  Reduced to 60mg for a month, and on 50mg now.  So far, so good.  I suspect the rate of reduction needs to slow as the dosage gets lower based on your guidance above.  Just wondering if someone has already worked out the details.  Thanks.

Many of us were left to our own devices because the GPs don't know much about PMR. Others have been subjected to demands from doctors to reduce so fast it isn't true - and it never works.

Several of us on this forum, and the other 2 UK ones, are heavily involved in the national charity and the support groups and have a lot of experience of reduction problems and good ways of getting round the difficulties. Every patient is dependent on their GP to get their prescriptions but we provide the background information and links to relevant papers and articles to allow patients to discuss how they reduce with their doctor. Many doctors are happy to accept such help and advice and cooperate with a patient but if they reject such assistance and insist on reductions their way that are too big or too fast and so don't work then we suggest finding another doctor!

I have only come across one doctor on the forums who has had PMR - and she is a retired GP. Her attitude now is totally different to the one she had as a doctor when she was telling patients to reduce, reduce, quickly, quickly. I worked alongside another elderly former GP in discussing PMR from a patient's point of view in a research group - and she understands the need for slow reduction too from personal experience.

I assume you started at 20mg in mid-December? The longstanding recommendations for reductions are that any drop should be no more than 10% of the current dose - at 20mg, that is 2mg. So your drop wasn't too bad. Has your doctor done any blood tests? Were your symptoms improved in that month before you reduced, since you say you don't feel good? Is the back pain new? It could be something other than the PMR, such as something called myofascial pain syndrome which is often found alongside PMR and can cause more localised back pain.

As patients it is our responsibility to notice how we get on with our chronic illness - only we know how it affects us. We are going to have to live with it for some time - it is unusual to be able to reduce to zero and get off pred in under at least 2 years. Five years is more common - and I have had PMR for 10 years. For 5 years I wasn't treated at all, for another 4 years I never managed to get below 10mg without a flare of symptoms. My GP has never pushed me to reduce - she is the one asking me if I am sure that reduction is OK. I have finally got to 4mg but can't manage 3mg yet. 

A good GP will work with you - but you have to understand what your body is telling you. And to do that you need knowledge. The most important bit is to know yourself.

I have learnt to go by what the old engine tells me & that Drs are not all ways up to the job of treating this strange journy.I  found that with super advice of these forums& how i feel i am slowly getting to where i can just see the light in the tunnel so to speak.IF you need any advice or just a kind word these forums are the place.Drs?? O. and somtimes a slappd:; wrist.All the best, it does get better.Dave

That is some dose to be on for 5 months!! Has it worked on the glomerulonephritis? What happens - do you have to reduce to zero or are you looking for a maintenance dose? That is the problem in PMR - we are looking to find a dose to use to manage the symptoms longer term. Dropping in large steps means you can easily miss the end point.

At these high doses the 10mg drops seem to work quite well, probably 5mg at a time is better once you are down to 30mg. I must ask my daughter how she deals with pred drops for my asthmatic granddaughter from such high doses. I'm sure it is in 5mg steps from 30. It is from 10mg you have to be careful - that is the point where your body is going to have to start making cortisol itself so you have to go slowly there, 1mg at a time probably, to avoid the risk of an Addisonian crisis. I'm sure your specialist will have his favoured approach - it is a bit different from in PMR.

Hi Eileen,

Yup, 70mg for 5 months is interesting... to say the least. :-)  At some point, you start wondering if the disease is worse or the side-effects of the Prednisone/Cytoxan combo.   But, the good news is that the lab tests seem to indicate the glomerunephritis is on the mend... and the doctor has started the taper a couple of months back. 

I suspect long term if the disease goes in remission the plan is to go to zero on pred and be on some other immuno-suppressant.  Haven't had that conversation yet.  Taking a day and a week at at time at this point.  Tapering from 70 to 0 will take a while anyways. 

Thanks for the guidance.  Is it better to hold the 5mg step downs fpr a month once it's around 30mg or is 2-3 weeks good enough ?

 

Thank you to all of you for the constant reminder about tapering. I was all set to go from 9 to 8 tomorrow...but have decided to wait a few weeks. My rheumatologist is very agreeable to me suggestions from this forum. He was going to start the Methotrexate t help me reduce the pred...starting FEB. 1st, but the threat of the Methotrexate gave me the impetus I needed to taper on my own in January...really gave me incentive! Lodger is also correct about my foot problem being enough to cope with. Really appreciate the support!

Kathy

What does your consultant say? If you feel well I'd have thought 3 weeks was enough. I wonder if he will introduce another immunosuppressant before you are all the way down on pred. This is really interesting (I know, I'm sad really...)

Nope EileenH

I offer both so the person can make up their own mind which to use and if they try them and find which one suits them that is fine. 

Ty for your help...my dr is a rheumotologist who treats prm..when i started on 20 last dec my sed rate was 68..when it dropped to 45 my dose was reduced to 17.5...yes ive had blood work..every few weeks with a f/u appt in march...i do have a narrowed spine so my back is a mess also...im so tired of pain that is only releaved by sitting down....but since prendisone my hips are so much better...its so hard for me to figure out why the pain because ive had over all pain for so long..3 years ago i had to quit working because of pain...maybe i had prm back then ...i dont know but when i told my dr i was ready for a wheelchair she did blood work and diagnosed me....i had been using a walker for many months and a cane almost 3 years..since the decrease in prendisone i think im tollerating it but i guess i better go to pain management to see if they can help with the back pain...i am 63 and feel like im in my eighties...i dont know how long ive had prm so i dont know how long this journey will last..my faith will see me through..ty again for your help..sharon

That sed rate was still way above a normal level even if it was falling - you would have been better staying at 20mg for longer. Until all the inflammation is under control there is still work to be done by the pred dose. Once the reservoir of inflammation has been cleared out, then you can start to reduce the dose to find the amount that stops it developing again.

Ty...i was thinking that it was too soon for a reduction and my pain and stiffness has increased since lowering pred dose....im going to call dr and tell him about the pain increase...i just thought i had to deal with the stiffness so ive been using walker when it gets bad...

I will let you know what dr says....do you know if my sed rate shows any hint of how long ive had prm? Ty so much for helping me...sharon

No, sed rate doesn't tell you much about history. The best indicator of how long you've had PMR is your clinical history - the symptoms you've had and how long you've had them. For many people they went to bed fine and the next morning can barely get out of bed. Others had little niggles over a longer period and possibly never have a sudden "can't move" attack. I have never had a raised sed rate at all. It does tend to lag behind what is going on - you could have symptoms without the sed rate being very high at first but if it were left untreated it might continue to rise. If the PMR progresses to GCA the sed rate can shoot up - but doesn't have to, even with GCA it can stay "in normal range".

But if you were better at 20mg and didn't need a walker then that is what you should be aiming for - clear out all the inflammation and THEN you think of reducing.

Ty..my dr called and told me to goo back to 20 and IF i feel better in a week take 20 one day and 17.5 the next...my blood work also showed low hematocrit...low hemoglobin..low mch...high rdw....low alt...low potassium....high tsh...high alpha 2...sed rate 68....glucose was 121...kidney good...urine negative for everything...high rheumatoid factor...i have saved my blood work papers for hears and this is the first time i ever had anything come back low or high...other than arthritis ive been healthy but arthritis has taken a toll for sure...i know u are not a dr and i dont want to burden you but i just wanted to share the complete blood work up with you...my father died at 68 with multiple myaloma and although it is extreemly rare to 2 family members to have it i still wonder if the dr should do a hip bi-opsy to ease my mind..anyways...you are so sweet to take so much time with me...i live in new york in the states and no one seems to know about this prm..i dont know one single person who has it...your suport is special..you have a god day.sharon

Im sorry i make so many typing errors...have a good day

That sounds a better approach to reducing!

Haematocrit and haemoglobin being low is common in autoimmune disorders - PMR has an autoimmune disorder underlying it. The low potassium is also probably due to the prednisolone making you lose potassium in your urine - did your doctor comment on it? He should check it from time to time while you are on pred since you are obviously one of the people it happens in - doesn't happen in all of us. Foods that are rich in potassium include:

Fresh fruits: bananas, cantaloupe, oranges, strawberries, kiwi, avocados, apricots

Fresh vegetables: greens, mushrooms, peas, beets, tomatoes

Meats: beef, fish, turkey,

Juices: Orange, prune, apricot, grapefruit

The sed rate is high - that will be the PMR and the pred dose not having yet dealt with all the inflammation. Maybe you need a bit longer at 20 than just a week - at least until the sed rate is down to "normal" levels. The glucose is also a bit high - that's probably due to the pred too. Having given you the list of potassium rich food I'm now going to say you should try to keep your carbohydrates down - keep fruit (especially bananas and fruit juices) down, lots of veggies and meat instead. 

The first tests to be done for MM are blood tests to see if there is any indication of a need to have suspicions of it. Since you have a family history do discuss it with your doctor - I assume you have already told him? Some of the tests are very specialised so would have to be requested specifically. He wouldn't do a bone marrow/bone biopsy without doing them first.

Did he do a T4 test as well as the TSH? If the T4 was low, with a high TSH it is a sign of an underactive thyroid. If the T4 was normal it means you may be at risk of an underactive thyroid in the future. Something else for him to keep an eye on. 

Most of us blame the pred for the computer making all the spelling mistakes ;-)

Just met with my nephrologist....

She is going to start tapering pred (I'm have gone from 70 -> 60 -> 50) over 2 months.  Next is 45 in 2 weeks and 40 in 2 more.  5mg decrements till 30 or 25 and then slower decrements..... and so on. 

Meanwhile, i seem to have sterioid induced diabetes.  Do you know of any discussions in this group on that ? Would really appreciate a pointer.  I am reasonably good with avoiding refined sugars (except an occasional dessert :-) and do get a lot of exercise (20miles of runnnig a week) ... but that still doesn't seem to be doing the job of combating

the pred-induced insulin resistance adquately (H1ac at 72).

 

Hi abhijit, I've been following your communications with Eileen, you must be very pleased that you're tapering to a more manageable dose. The only thing I know about steriod induced diabetes is not only kept off the sugars but try to avoid, cut down on the carbs also because carbs are converted to sugar. Also, the blood levels will get better as the steriod dose reduces. All the best, christina 

Just refined sugars isn't really enough - it will have to be fairly dramatic carb reduction probably. My favoured reading matter there is a blog called Diabetic Mediterranean Diet by a doctor, Steve Parker. Google it.

However, however good you are at cutting carbs it will take a few months to get that Hba1c down significantly as it is a measure that compiles over about 3 or 4 months. It will improve once the pred dose goes down - the pred changes the way your body processes carbs of all sorts. Mind you - for a diabetic, most doctors would be pleased with an Hba1c of that!

Thanks, Eileen and Christina for your responses.

Will definitely look up the blog.

I agree.. will take much more than cutting sugars.  It gets a littel tricky since I love distance running and do need some carbs as fuel.  So, need to strike the right balance.

Just curious... there seem to be a large number of members on this board on long-term maintenance doses (in the <10mg) of pred.  do you see steriod induced diabetes (as opposed to steroid induced weight gain) a lot ? or is the insulin resistance more common in the higher doses, and likely to reduce/go away once one gets into the sub-10mg range ? of="" pred. ="" do="" you="" see="" steriod="" induced="" diabetes="" (as="" opposed="" to="" steroid="" induced="" weight="" gain)="" a="" lot="" or="" is="" the="" insulin="" resistance="" more="" common="" in="" the="" higher="" doses,="" and="" likely="" to="" reduce/go="" away="" once="" one="" gets="" into="" the="" sub-10mg="" range="">

Hi abhijit, long distance running - the one sport I've always wanted to do but unfortunately I have tried many times and always been out of breath in no time at all! 

I am not medically qualified but from my point of view I am not currently on a maintenance dose, if at all I require that. I was only diagnosed December 2013 and my drs have more or less had me on the Bristol PMR plan of reduction, and so I am still on a reduction programme as opposed to a maintenance dose. Obviously from my point of view I hope I go all the way to zero but I simply have to take each reduction as it comes and take it from there. I'm currently at 9.5 following a glare up in October 2014 when I attempted to reduce from 9 to 8 and the drop was simply to large a leap so I put myself back up to 10 so that the prednisone could really stamp down the flare up.

i was already overweight by almost 3 stone when diagnosed with PMR. Whilst on prednisone I have not put on any additional weight and infact have started a low carb diet and am losing weight slowly. And, I have not fortunately had the urge to eat more, prednisone simply hasn't effected me that way. My husband is type 2 diabetic so I steal his monitor once a week and check my sugar levels. So far they are fine. But I'm not a huge chocolate or sweet eater and as I said now I'm on a low carb diet that should also help. I do believe that the lower the dose of prednisone the lower the risk of steriod induced diabetes, but hopefully Eileen will clarify that. One thing I do know is the lower the dose of prednisone the lower the side effects of the prednisone. All the best, christina 

Thanks, Christina. 

I don't want to digress from the PMR discusisons here... but if you want to be a runner, you can be one.  Here's what I follow - the run/walk/run method. 

Start with brisk walking and when you can walk a mile or two, throw in 10 sec of jogging, followed by a minute of walking... and this way as you get comfortable, you keep increasing the jogging component and reduce the walk component.  In a few months, you can maybe do 1 min jog/1 min walk, or even better than that.  You just need to stay at what feels comfortable as in being able to carry on a conversation.

Before my illness, I have run half-marthons and even full-marathons using this technique and never felt the urge to continuously run.  I used to do 3min run/1 min  walk.   Now with all the side-effects of 70mg pred - low hemoglobin etc. - and high blood pressure meds that keep my heart-rate artificially low - I can do a very slow 1 min walk/1 min run.  But that's good enough.. I can do that for a couple of hours and go 7-8 miles.

Give this technique a try.  Exercise helps a lot - especially in uplifting one's mood.

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Hi....had a bone density scan today..will know what changes there are since last one in 2003 sometime next week...i think i take yur advice and stay on 20 for longer than 7 days..im so tired of not feeling good...i wasnt prepared to have a disease that i couldnt pronounce and neVer heard of...well ty for all  your information...take care of yourself and thanks again...sharon

Hi Sharon, it's always a good idea to stay on each dose for 2 to 4 or even 6 weeks as it can sometimes take a good 10 days for a flare up to happen, and if you're reducing too quickly you won't know at which dose was a good dose to stay on that covered your inflamation. I always stay on each dose for a good 4 to 6 weeks so that each dose can really do its job. Good luck with the bone scan results. Christina

Hi abhijit, your technique sounds a lot like the technique I used only I used to walk/run between lampposts gradually working my way up to simply running for just over a mile.

for you, yes it's very important to keep fit not simply as a morale boost but also prednisone is notorious for damaging our bones and joints and keeping ourselves fit is promoted as a good way to ward off - well it doesn't ward off completely- the bone wastage caused by prednisone. 

Also prednisolone can cause fatigue in some users so again sometimes forcing ourselves to do abit of exercise is good. I have a border collie dog who is mad as a hatter so I am kept quite fit with walking her. Thanks for the advise. All the best, christina 

I was doses above 10mg for a long time - because I couldn't reduce without a flare. I have never had a problem with blood sugar at all. Cholesterol went up, presumably with the pred but low carb has sorted that. I know a lot of people who have never had steroid-induced diabetes, or even pre-diabetes.

I don't know - one theory is that pred speeds up the process of aging in some way and I wonder if that tips some people over into the pre-diabetes stage they would have reached at some point anyway - in the same way that for some people it is existing cataracts that deteriorate faster once they are on pred. In some cases there are pred-induced cataracts but they are different. Unless people have been monitored previously for anything it is often when they develop PMR symptoms that they are looked at closely enough to identify such problems - were they already there?

As a physiology graduate my knee-jerk reaction to your thinking it may get tricky because of carb loading was - not necessarily! So I googled low carb diet and running - to find there are experts who think the same as me. Once your body has learned to work with a ketogenic diet (that just means it is using fat not glycogen from muscles to produce energy) it works with it during exercise too. Unless you are competing at the top level it shouldn't pose too much of a problem - because you don't necessarily cut carbs altogether, you are just getting the amount you need elsewhere, and if you are eating them DURING running you will use the sugar produced from the carbs for energy. It is when you are eating more carbs than your body needs at the time that you get them being deposited in the form of fat stores for later. If you google "is the paleo diet right for runners" you should get a link to an article on "running competitor" which explains the theory and practice of when to use the carbs in the context of a low carb diet.

PS - a search on low carb diet and running has brought up some fascinating reading. I'm enjoying an article by a guy called Peter Attia.

Thank you so much,  Christina and Eileen.

Actually the science behind all this is quite fascinating and would be so much more enjoyable if you weren't the patient  LOL.

Eileen, since you are  a phsyiology graduate, i have question for you.. it maybe really stupid.. but something sruck me as I was reading up on sterioid induced insulin resistance.   It seems in a lot of cases, mine included at this point, the fasting sugar blood results are actually pretty good.  I haven't actually done a post-prandial test, but my Hb1ac is high,  This would lead me to belive that after a meal it takes my body a longer time to deal with the sugars in the blood. 

So, here's my question...if I were to throw in some exercise - maybe a 30 min brisk walk - after lunch and dinner,  it should help my body deal with it by reducing some of the sugar hanging out in the blood.   Does this make sense or too simplistic ?

I think so - but don't quote me! That seems to be what the stuff I read yesterday is suggesting but it is probably a bit more complicated than that and biochemistry was never my strong point! Yes, I think the body would preferentially use the carbs you have just used - but I think it would also depend on the glycogen stores in the muscles and the fat metabolism too. You would think that must be the basis of the role exercise plays in reversing pre-diabetes. I've always known and said that doing single fasting blood glucose checks won't tell anyone anything about what your body is doing with its fuel but so many doctors relied on that for many years. If you are pre-diabetic your blood sugar will rise in much the usual way but remains higher for longer than normal and that is how the glucose tolerance test identifies pre-diabets and diabetes: it measures your blood sugar level 2 hours after a "meal" containing a fixed amount of carbohydrate. The normal result is below 140mg/100ml, diabetic is over 200mg/100ml and pre-diabetic is in between. If you draw the graph you see it falls back to normal levels comparitively slowly. If you load on carb the level will rise and if you are then snacking on carbs while exercising it will keep that level raised and you would see spikes on top of the raised level as you introduce the next lot of carb - can you see what I'm saying? Shame I can't draw a graph here! But it would increase the are under graph - so the cells are bathed in more sugar overall and that is what does the damage and increases the Hba1c.

Exercising in that time you would think would use the excess carb up quicker, but the abstracts I can find online suggest this works for breakfast - but not for lunch! Most of the work I could find was from the days when they were still totally convinced that everyone needs carbs and were telling diabetics to eat what seems to me like vast quantities of bread and carbs in every meal. One did admit that work was needed on identifying how much (or how little) carb was advisable in pre-diabetes.

There are loads of articles that are written by athletes who use low carb diet - and a surprising number are science or medicine qualified. I shall carry on reading later...