AM I ON TRACK WITH MY REDUCTION OF HYDROCORTISONE?

[Megams]

Started on 15mg x 2 daily, morning and evening dose 14 February 2015 for my PMR which was finally diagnosed in January 2015. Fairly certain it started May 2014 when I sustained a fall playing table tennis. ESR level February 2015 was 16, 3 weeks of Hydrocortisone when bloods done in March was down to 8.

I have not had ESR tested since then but presume now down further, hopefully.

Saw my Rheum. Specialist 9 April and asked if we could begin reduction.

Apart from mild neck intermittent niggles I am not experiencing pain and disability like I did.

My day changes with any stress however, and the next day I am fairly fatigued which I gather from reading posts on this site is from the fact our adrenal glands are suppressed by the medication.

It took along the "dead slow and stop" method of reduction kindly supplied my PMRPro and asked my Rheum. Spec if I could follow this method.

His comments were that this method was for Prednisone and not Hydrocortisone so I would need to drop 5mg Hydrocortisone each month.

My initial total dose was low and was equivalent to 10mg Prednisone.

My question please: can I taper any quicker or am I going to take the approach as suggested by him to drop 5mg per month? Provided all goes OK under this system it will be October 2015 when off Hydrocortisone.

Whilst the dose is low I have been sensitive to the side effects which has created on going range of medical issues, with added mood swings and dreadful sleep.

I appreciate there are folk worse off than me - still count my blessings especially on a good day. Thank you in advance.

[Hidden]

Any idea why you are on Hydrocortisone and not pred?

[Megams in reply to Hidden]

Hi there Saxjody

Yes I was put on Prednisone in January 2015 when first diagnosed. In NZ where I live, Prednisone is not coated - this created erosions in my gut, and PPI's did not help me either.

I have a history of gut intestinal issues/sensitivities.

With the help of a holistic pharmaceutical company in Auckland I had an acid resistant capsule made up which was obtained from Australia.

This capsule takes 12 hours to move through my system and breaks down in my bowel.

This has efficiently and helped managed my PMR very well.

By the way I thought my wee picture was small - its huge, didn't realize it would come out this size.

Thank you for your question.

[Celtic PMRGCAuk volunteer]

I echo Saxjody's question as to the reason you have been prescribed Hydrocortisone rather than Pred, when it is well known that Pred is generally the first-line treatment for PMR and the the best one that works at present.

An ESR of 16 at diagnosis would not be considered elevated - mine was 92 at diagnosis. It can vary with age. The CRP blood test is generally considered the more specific test of inflammation. However, about a quarter of PMR patients never have raised markers, so the blood tests can be non-specific.

If, as you say, your Hydrocortisone starting dose is equivalent to 10mg of Pred, then reducing your medication by 5mg a month with a view to you being off treatment in only 9 months would be nothing short of a miracle, if your diagnosis is correct.

It can take anything from two years upwards for PMR to go into remission, with a very lucky few people managing it in 12 months; however those "very lucky few" are more likely to relapse after coming off the treatment. That treatment is not curing PMR but reducing the inflammation until the disease runs its course, and that can vary from person to person.

[Megams in reply to Celtic]

Thank you Celtic, I appreciate your response.

I must say that I initially responded within a 2 day time frame to Prednisone, my ability to turn over in bed, the morning stiffness, the getting up from a sitting position and struggling to get the legs going without pain in the muscles dissipated.

The Prednisone was prx'd without a PPI - erosions in the gut from Preds plus side effects from starting two different PPI's was ceased.

The reasoning for Hydrocortisone was the fact that it was considered a more natural alternative with my having a long history of gastro intestinal issues.

It was able to be made up without fillers in a slow release acid resistant capsule to by pass the stomach as mentioned.

My Rheum Spec. is inclined to opt for a holistic approach where possible and of course I am all in favour as it adds to quality of life without too many side effects.

I am presently reading "The Autoimmune Solution" by Amy Myers M.D. which prompted me to ask my initial question - she gives me much hope.

I am still working hard to heal my gut which is the source of all my issues.

I appreciate what you have mentioned and thank you for your feedback.

[Megams in reply to Celtic]

Celtic - I failed to tell you that 5mg of Hydrocortisone is equivalent to 1mg of Prednisone.

I probably didn't mention that last year when I fell I did significant damage to my entire left side of my body - it was then that I believe I was probably d dispalying signs of developing PMR as it was muted by another Doctor.

My Rhemy Specialist who treated me, chose to inject the painful damaged soft tissue injury/ies with minute doses of Cortisone/Kencourt injections - had total of 14 over a 8 month period and think this helped but I still continued with intermittent pain and difficulty getting up to walk after being seated, moving in bed.

This January 2015 pain appeared in right side all the way down from head to ankle.

I had significant number of nasty virus's in 2014, one requiring hospitalization, had 3 family died (2 tragically) and firmly believe the stress overload plus virus's sent my immune system packing.

Kind regards once more.

[piglette]

Hi Megams, so sorry to hear that you have PMR also that pred caused problems. As Celtic says your ESR is in the normal range already, mine was 127 and has never been as low as 16 let alone 8. Are they checking your CRP too? As the others say your reduction sounds very fast and it should not be aiming for zero but to ensure you are reasonably pain free. Good luck with the reduction.

[Megams in reply to piglette]

Hi Piglette

Wow that is so scary to know that you good folk have such high ESR levels. My PMR was bi-lateral and must say that all I have left now is pain in neck (literally), and odd pain left side in head. Had nasty migraine left sided 4 days ago and Rhemy Spec thinks I may have some vascular changes that side of head as I have had 2 small dents appear which I mentioned on this site recently but didn't know what they were - he is suggesting an MRI and will discuss next visit.

Had eyes thoroughly checked yesterday at Optometrist, normal IOP'S, blood vessels back of eyes looking healthy, changes in vision due to cataracts which I can deal to knowing some souls have lost their sight.

Thank u again Piglette -

Kind wishes.

[piglette]

Hi Megam, I may just be someone with higher ESR! I suppose one of the problems with hydrocortisone is it only lasts around eleven hours while pred can be up to thirty six hours, so you need to take hydro more often.

I am sure PMR can be caused by stress too.

[Megams in reply to piglette]

Thanks Piglette, I was not aware that the hydrocortisone lasts only around 11 hours, whilst preds 36 hours - that is most interesting.

Yes I have read of others like your self with a very high ESR - I am fortunate for the want of a better word, that my inflammation markers were not higher even though the symptoms i.e. pain, fatigue, loss of weight, mood and sleep deprivation to name a few were very real and present - I am not completely out of the woods completely yet but a vast improvement.

Kind regards again and thank you Piglette, your comments appreciated.

[PMRpro Ambassador]

Hi Megams - there is no "on track" for a reduction. Whether you are on pred or hydrocortisone you will need as much as you need to manage the symptoms - and the METHOD of reduction is much the same, just the figures will be different. I could write it in algebra if he wanted!

You started at a dose that was plenty to manage the symptoms - and it did. Now you are reducing in small steps (as small as possible) to find the lowest dose that manages the symptoms acceptably. You are NOT reducing to zero - as long as the underlying autoimmune disorder is active you will need some steroid.

He isn't quite truthful - you take the new dose (whatever it is) on one day and the old dose for the next x days, one day new dose, old dose x-1 days, rinse and repeat. It makes the transition from old dose to new dose smoother and more acceptable to your body. You can fiddle about with it depending on the substance and the numbers but the concept is the same.

But I would say that 9 months of steroid of whatever sort it is is not long enough to manage PMR which is a chronic illness and 2 years plus is far more likely. Maybe he knows better - and if 6 months of hydrocortisone is enough for PMR the gentleman needs to write a paper because I know an awful lot of people who would be interested. Including a large number of rheumatologists.

[Megams]

Hi PMRpro - great to hear from you and I sincerely appreciate your feedback.

As you might remember I have previously asked a variety of questions on this site which I have found so immensely helpful - keen to do everything right with managing this difficult pesky illness and it's myriad of challenges.

When my Rheumy Spec made his comment on the reducing programme of yours, I felt an immediate quiet sense of panic thinking, "what have I missed?"

Absolutely agree that Hydrocortisone and Preds both steroids, just different names and composition.

He is aware I am an avid follower of this site and he also knows that I do all I can to dot my" i's and my t's".

In New Zealand we don't quite have the same in-depth question and answer system like PMRGAuk.

I have this morning started to follow your suggested tapering and gone back to my previous dose of 15 mg morning and 15 mg afternoon - as of yesterday dealing with neck and the odd head pain.

Tomorrow I will go back to the new dose and so forth as you recommend.

I sometimes ponder with some of our medical folk.

My Gastro of 2 years springs to mind who recently referred me back to his "Nutritionist" to take another look at a FODMAP plan as a source of my lack of appetite.

I very reluctantly saw her, (just in case I missed something last time round), and what an absolute waste of time and money. I have moved on and when required will find another Gastro.

I look forward to the day of speaking up once more - creates stress which I don't deal to very well without feeling wiped out next day.

Must add that now having regular B12 injections, (borderline in blood test and thrilled when Rheumy Spec. suggested it 3 months down track).

Appears to have helped kick start my system albeit for a short time until the next injection.

Sincere good wishes to you in meantime.