Prednisilone reduction

Do you know of any research documents that discuss the pred dose vs. the adrenal restoration activity ? Also in the research zone - is there anything that demonstrates that MTX assists in the stabilization of the pred/adrenal function in the 6-7 mg pred zone ? (I'm taking prednisone not prednisolone)

I am currently 'creeping' down from 5 to 4.5 mg and using 3 month increment per 0.5 mg reduction and it seem to be working. I am also on consistant weekly 20mg of MTX. 

I have kept a very detailed daily diary for the last year, (medication level, pain/ache level, fatigue level etc.) and I started to notice slight pain/ache increase when I was between 6 and 7 mg of pred while decreasing 0.5 mg monthly. I continued this reducion procedure to 4.5 mg with the slight pain/ache increase and at the 4.5 mg I started a  more severe flare so I increased to 5mg for 3 months and from then onward I am using  a 3 month increment - tomorrow I decrease to 4.5 mg.

I would appreciate your thoughts and any research documents you may have found to be helpful.

Dave

I only took pred and never took any steroid sparing agent at all. Although I was offered a barrage of them.  I reasoned, I had enough side effects to deal with on pred and as nothing cures either pmr or gca and pred is the chosen drug, why bother with adding stuff. They go into remission when they want to, nobody can make them.

I had GCA so you can imagine the high doses.  However 5 years down the line, remission and into my 4th year.

I am not advocating what I did to anyone, it is a very personal decision.

I have never seen a document, but both my Consultants and the Consultant Endochronologist explained it in detail.   Eileen is on holiday at present and may not be able to get a signal.   However if she does she can enlighten you further.   There is a limit to my knowledge.

As an aside, I see you are located in the States, a group of your compatriots have started to email each other, if you want to join them send a PM with your email address and I will forward it to them.  They are a good bunch and most of them use this site.

If not how about seeking an ACTH test to see if your adrenals are kicking in, now you are below 7.5mg.

I don't really mind how long it takes because I am feeling so good 

in comparison to how I was this time last year.

Medicine is a branch of biology not physics/chemistry/maths and there are no fixed laws to be obeyed. Shame - but there it is. Unfortunately, there are too many managers in the healthcare service you believe you can use graphs and algorithms to predict demand and length of hospital stay - has a lot to do with staffing levels and expenditure and problems...

I realize that each patient has different criteria - age, HPA axis interaction etc. – all related to Biology, but my point of tables, charts, algorithms etc. is not to do with the biologic prediction of disease correction needs but to keep the professionals that we see “up-to-date” with our disease condition so that they can make a ‘better’ biologic decisions or to stimulate a reason to ‘think’ about it and research what should be done.

As you are aware, most of the professionals that all patients appoint with during long disease cycles (in our case PMR) do not have the time to review all the medical files describing the historic issues, test results, detailed remembrance of the patient’s biologic activity, and in some cases, some don’t have much interest in what is going on – the “business professionals”.

My point is that specifically in the case of PMR, appointments and in some cases only oral communication is only on a 3-4 month increment basis (unless there is a major issue requiring an interim appointment).

When the patient meets with the professional for an appointment that 3 month cycle of biologic activity and the changes (or no changes) in the blood test activity and medication dosage, has to be discussed in a matter of minutes and a future program and decision of medication determined. Could you remember the accurate details of 2-3 years of meetings with several hundred patients ? I don’t think I could !

As a professional in a different field, it is not possible to make accurate review or decisions without seeing a historic cycle of the ‘project’ to allow the professional knowledge to react and make accurate decisions.

Typically the medical professionals do not create their own ‘simple’ patient review histories either on paper or electronically to educate themselves on whom the person is who is sitting front of them.

So that is why I mention the need of the patient to keep an accurate daily diary of their condition (pain/ache, fatigue, whatever), medication type and dose and show the professional what is currently going on in a graphical format and present a graphical reminder of what has happened over the prior years of the patient’s disease.

I realize that this recordation is not simple for some – thus, why are the professionals not assisting and preparing something for each level of age, ability, etc. that would end up helping their patient’s to prepare a record and assist themselves make decisions based on a presentation they can review in ‘minutes’ and make an accurate decision – rather than not going through that “2 inch thick” paper file (or maybe electronic file as my professionals do) and 15 minutes of ‘mumbling’ with the patient.

I realize that this may seem ‘different’ but I have had success with it and along with you and others on Patient, I think both my medical professionals and myself have benefitted.

As always – thanks,

Dave

There was a gentleman on another forum a few years ago who was fixated on his graphs - but as an engineer he made the mistake of looking at day to day variations rather than the overall picture. What he was trying to force down people's throats because he was so insistent about it and he dragged it in to every discussion was not only too complicated for most people it was also missing the entire point. It's a bit like weighing yourself when trying to lose weight - your day to day weight can fluctuate by as much as 2 or 3lbs or sometimes more depending on a whole load of factors and people who weigh themselves every day often end up downhearted and even depressed even though the general trend of their weight loss is perfectly acceptable.

It can get the same way with PMR and GCA if you are not careful. Too much introspection leaves you less aware of the overall improvement over a period of months and even years. We often tell people who are totally downhearted about their progress in the first few months that they will look back in a year and be astounded how far they have come. Chronic illness is just that - long lasting.

With 'humans' we are all different, a change in temperature - making it warmer can cause a problem for some people, colder and it affects others.  Pollen affects some people but not others.

Yes, we provide our members with a Steroid Medication Record Book which also has space to record other medications issued, by whom, the date and when it was changed or stopped.  Simple but it helps us to remember.  

I am happy that you have had success with it and note  'you think' that both your medics and yourself have benefitted.

YOUR illness, I can assure you is different to mine although it has the same name it does not have the same person.