Reaching lowest dose of Prednisone

That is an extremely fast reduction though I suppose you are also on mtx. However - whilst mtx may help you manage on a lower dose of pred it does not replace the pred altogether in PMR. As long as the underlying autoimmune disorder that causes the symptoms we call PMR is active you will need some pred - and what you are doing is reducing to the lowest dose tht controls those symptoms. It may well be that about 8mg is it for now - it doesn't mean you won't get down lower later.

And 7 or 8 is also the amount your body makes normally and hasn't been doing while you were on a higher dose so your body has to catch up and the feedback system governing it all has to get back where it is meant to be. Don't rush to keep trying to reduce if the symptoms keep coming back. Once you start yoyo-ing the dose you end up in trouble as reductions become more difficult.

Thank you Eileen for your excellent advice and counsel. What you say makes sense, so I will tread carefully where reducing is concerned and try not get focused on a number per se. I must say though, that once the old methotrexate kicked in (about 3 months after starting it), the reductions and overall feelings of well being were markedly improved with few side effects or drawbacks. Here's hoping my little adrenal gland will kick in and start doing its job soon.

Hi PatpomI am in the US and also find that PMR is commonly not known. In talking about it to acquaintances, I have discovered 3 other people who have had it. Two did the Prednisone treatment. One did not, but all are currently PMR-free. I was finally diagnosed back in December 2013 after 4 months of debilitation and having being seen by a number of Drs and misdiagnosed by a rheumatologist as having Fibromyalgia. I was taking so much Ibuprofen and aspirin that I got a bleeding stomach and anemia. A new rheumatologist diagnosed me, put me on 20mg of Prednisone (symptoms disapeared) and then reduced me to 15 mg after 2 weeks. Since then, I have been reducing by alternating the current dose with 1 mg less every other day for 3 weeks. For example: 15mg/14 mg/15 mg/14 mg, etc for 3 weeks, then 3 weeks of 14 mg, then again 14/13/14/13, for 3 weeks, then 13 for 3 weeks, etc. This has worked for me. (I had to interrupt this, due to a rather alarming and unrelated rash, when I had to take 60 mg then 40, then 20 and back to 10 (which was the then current PMR dose) but have started reducing again, and am now on 9 for 3 weeks and then going to 9/8/9/8 for 3 weeks and then 8mg for 3 weeks. My rheumatologist tells me that 8 mg is often a sticking point, as the body seems to have a hard time finding equilibrium at this dose and am told to be prepared. I will see the rheumatologist when I am on 8/7/8/7. If symptoms return before my appt, I am to call her and jump back on 15 mg and we will discuss on the phone, or I will see her. So far so good. I walk, do yoga daily for stretching and strength and work full time. I try to work standing up some of the time, so as to be weight bearing. I eat a lot of yoghurt, cheese and try to ingest enough calcium rich food to get 1200-1500 mg per day. If I do not get there, I add a calcium supplement. I also take Vit. D in a prescribed dose, based on blood tests that determine my Vit D level. Am curious about people's experience with bone density after Prednisone/Prednisolon therapy.

Paula, it's good to hear how well you are doing and it sounds as though you have a rheumy who also knows what she is talking about when it comes to reducing PMR.....slowly!  Hang on to her!  

However, although she is correct in saying that there can be "sticking points" at the lower doses, this is often experienced at around the 7.5mg dose of Prednisolone (Prednisone can vary slightly I believe) and down to 5mg, probably because 7.5mg is around the equivalent amount of natural steroid (cortisol) our bodies reduce when well.  This natural production can be somewhat suppressed by the high dose steroids so will be trying to kick back in at doses around 7.5of the artificial steroid, leading to a possible shortfall whilst our bodies adjust, hence the possibility of some returning pain.  However, if you do experience returning symptoms whilst alternating 8/7, I doubt you will need to return to as hgh a dose as 15mgs to get things under control - 10 or at the most 12.5mg should suffice. 

My experience with bone density whilst on steroids for both PMR and GCA some 5+ years, was to have a DEXA scan soon after commencing Prednisolone at 40mg to get a baseline reading which showed normal density.  Two years later there was a miniscule reduction in density and yet another two years later another very tiny reduction taking me slightly into osteopenia, but not in need medication.  Having recovered and discontinued Pred almost two years ago, I am hoping that my next scan will not show any further deterioration, unless of course Anno Domini comes into play! I'm assuming you have had a DEXA bone density scan to keep a check on your levels whilst on steroids?

Sorry "reduce" in the middle of the second para should, of course, read "produce".

Hi MrsO,

Thank you for this information. Really appreciate it. 

Regarding the bone density: A DEXA scan in May 2013 (baseline before taking steroids) showed good bone density. Am scheduled for another January 2015 (after 1 year of Prednisone). BTW: I fell on the ice and and shattered my left shoulder February of this year (adding insult to injury, as my left shoulder had 'frozen' due to the PMR). Started PT after 3 weeks, which continued for another 5, at which point bones well healed and permission to return to all activities. Continue the exercises at home, daily, in addition to the yoga. Started rowing on a rowing machine at that time. Frozen shoulder went away, also, possibly due to the PT.

My current rheumatologist urges exercise, provided there is no pain, of course, in addition to the medication. I wonder whether exercise increases natural cortisol levels and can therefore help in the steroid tapering process. It can raise endorphin levels, but does it actually raise cortisol?

It seems that the 3 other people I met were on Prednisone and the online PMR sites all mention Prednisone as the treatment (Mayo Clinic, Johns Hopkins, NIH, etc.) The lowest dose that is available at the pharmacy is 1 mg and they are so tiny that cutting them in half causes them to shatter. This is the reason for leapfrogging doses. A nurse told me yesterday (after I saw this blog) that Prednisolone is available at the hospital where she works and is given to certain patients who have liver issues, as Prednisone has to be processed by the liver to turn it into Prednisolone. Am curious why Prednisone and not Prednisolone is the drug of choice here, so will ask my Doc next time. I don't think I would want to switch, unless it is necessary, liverwise. 

I failed to mention that during the 4 months of undiagnosed PMR, I also started getting Acupuncture treatment. I believe it may have helped to reduce the inflammation in my body. I started out with a CRP of 47, which had dropped to 3 by the time I went on Prednisone. I was also taking Neurontin, which the earlier Rheumatologist gave me, thinking it was Fibromyalgia, not PMR. (I had stopped the Ibuprofen due to bleeding and the Paracetamol, when I started on the Neurontin). 

FYI: I am 68. Thank you, again!!

Paula

Yes, exercise can raise cortisol levels, as can trauma, infection and disease!.  So whereas a certain amount of exercise which keeps us moving can be good for us whilst suffering from PMR, we must be careful not to over-exercise as this can spike cortisol levels and eventually cause adrenal fatigue - our adrenals can already  be suppressed by the steroids, so the sensible answer would be not to over-exercise.  Plus the more exercise you do with inflammation in your body, the more recovery time your muscles will need.

The 1mg Prednisolone pill supplied in the UK is also small but our pharmacies stock pill cutters which do quite a good job of cutting the 1mg pill in half - not perfect halves but incorporating one half into whatever dose we are taking on one day means the other half can be incorporated into the following day's dose, so we're getting the complete 1mg over two days.  Hope that makes sense! 

Hi MrsO.

Makes perfect sense.

Thanks to your suggestion am finding pill cutters on Amazon and will research them.

Regarding exercise, also makes perfect sense and I will be vigilant.

Thank you so much.

 

To anyone reading this thread and conversation about pill cutters, and in case you aren't already aware, it is only the non-enteric coated Pred that may be cut.  Enteric-coated pills should never be cut.

If the active ingredient of a pll is sensitive to acid or may be irritant to the stomach lining, an enteric coating may be used which is resistant to stomach acid, and dissolves in the less acidic area of the intestines.

MrsO has said it all

But I will add I have been on pred for over 5 years,most of the time above 10mg and have never taken any "bone protection" medication other than caclium and vit D. There has been no change in my bone density!

And in this link you will find my reduction scheme for use at lower doses

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

which has worked for me and a lot of others. I "stuck" at 9mg until I used this and am now at 3mg. With no problems at all so far except that the first few times I take the day of new dose I feel "off" but that then disappears and nothing else happens.

 

I am in NZ - recently diagnosed with PMR - never previously heard of it, but apparently it is "popping up all over the place" here. I feel a little better after reading your story - I guess I just  have to resign myself to going slow. I will try to take your advice -do not rush. How are you a year down the track ?

Remember math and ratios.  If you go down from 20 mg by 1 mg, that is only 1/20th.

If you go from 4 to 3 mg, that is 25%! 

If you really have PMR and are constantly in pain you are simply on too low a dose of pred. An equivalent of 3mg/day of medrol is an extremely low dose - most people wouldn't have got to there after 18 months or so having started on 15mg/day (or thereabouts, I work on prednisolone doses which don't transfer directly). Thsi link will take you to a post on this site with links to an excellent info site and its associated forum (at forumup, one of the administrators there also lives in France, I'm sure she can offer tips for dealing with the French system) plus a few other places. There is also an excellent link to a paper written by top UK rheumatologists who specialise in PMR and GCA about managing them. They start patients on 15mg and reduce over 2 years - if you have always been on this low dose, which is what it sounds like, you have never got the inflammation under control to start with. That must be done first, then you reduce to the lowest dose that manages the symptoms at an acceptable level. 

Ther is no virtue in being on a pred dose that is too low - it does nothing other than create possible side-effects. If you are on the right pred dose you would need far less paracetamol and codeine - and they too have side effects. Paracetamol is really not good for livers and codeine is addictive and causes lower gut problems - just because you gan get them OTC doesn't mean they have no side-effects or risks. 

Basically, you have a choice: bite the bullet and take a decent dose of medrol and be far more comfortable or you might as well stop taking it. Life in permanent pain is no fun and many of us have said we'd rather be a bit overweight than in constant pain. Also, it indicates your body is in a constant state of inflammation which predisposes you to cardiovascular disease (heart attack or stroke amongst other thigs) and cancer. It isn't a case of no/low pred is good, more pred is bad. There are several considerations - it isn't a simple question.

I agree with Eileen H