~What immunity have we with a reduced steroid intake for our PMR? ~

[Megams]

Continuing to struggle to get past 15mg Hydrocort, equivalent to 3mg Pred.

As soon as I have dropped my morning dose from 7.5mg to 5mg I can confidently say that within 24 hours my legs/hips flare plus fatigue.

Discomfort manageable but fatigue wears one down - told by my Rheumy that he wants me to reduce & push through with symptoms.........

He is aware that my fingers & toe joints are slightly swollen & very sore some days & may have forgotten that when I first dropped to 5mg some 3 months ago these new symptoms appeared - I wrote to this site for advice at time & decided in the end to step back up to my usual dose.

Added is my concern that I have been fighting mild sinusitis off & on for months - I just come right after throwing everything natural at it, plus non drowsy anti-histamine to settle inflammation from constant sneezing.

I can't use a steroid base nasal spray so chemist says.

I think the on-going sinus issues has been exacerbated by breathing through mask on the CPAP machine used for obstructive sleep apnoea diagnosed Nov 2015. I use the humidifier in machine which has helped.

Have now switched to more expensive larger mask to breathe through mouth to get me through night.

Into autumn in NZ so change of seasons never help - dreading winter!

My question :-what is happening to immune system when taking less steroid & when can I reasonably expect immunity to return to some form of normalcy, if there is such a thing?

Decided this morning to step back up to usual dose plus consult my ENT Specialist to see if he can wave a magic wand.

Appreciate feedback as always.

~Sending abundant Easter blessings to you all ~

[leeman49]

I don't know if you believed what I say. About 10 years ago I had a bad cough and always happened after food. A healthy carrots salmon and potatoes or just healthy plate of food. Went through all the investigation and nothing wrong with me but the cough still there. Came across the food intolerance test in Far East and had a long list of food that I gave to be careful. The red chart were to avoid eating for three months and introduce back 1 in 4 days. I stopped eating those food and my cough went in two weeks. And no more antihistamine. So maybe you could convince your GP to see if you can get those test? Proper blood test and not the patches. Those time I though I had asthma too. I don't have cough anymore and still watched out what I eat. Is worth watching over.

[Megams in reply to leeman49]

Thank you leeman for your interesting story.

I do have certain sensitivities to some foods which I avoid.

Doctor did allergy tests years ago showing certain reactions to common allergens which I also avoid.

For example if I walk in long grass my legs swell into red hot areas where grass has touched. House dust triggers sneezing instantly.

I was asthmatic as child, no inhalers then.

Grew out of this, as adult if I get chest infection asthma returns until infection settled.

My sensitivities seem to be heightened since living with PMR and steroid use.

I try and avoid antihistamines where possible and use a natural and clinically researched formula derived from Quails egg powder.

If all else fails after 2 days I resort to quicker acting antihistamine.

Kind regards

[leeman49 in reply to Megams]

Take care 👍👍

[Hidden]

Have you tried a nasal rinsing system such as Neilmed? It's a bottle that you fill with warm water and a sachet with sodium chloride and bicarbonate of soda. It's great for sinusitis if used twice daily religiously. I have repeated bouts due to my underlying auto immune illness and it certainly helps clear it.

[bettyv910 in reply to Hidden]

I use what we call in the US a Nettipot. It is a rinsing system such as Keyes mentioned but it looks like a little teapot. You fill it with warm water and add a provided salt packet. You lean over the sink and press it against one nostril and it flows out of the other side into the sink. Then you reverse the process. It feels a little weird at first but it really helps. It is very inexpensive and seems to work well without having to add yet another medication to my list!

[Megams in reply to bettyv910]

Thank you bettyv910 - yes I have used this wonderful piece of equipment and when travelling would take it with me.

I have progressed to the plastic bottle which of course is lighter. I still have my Netti pot in the cupboard and is probably better for me than the plastic bottle.

A most wonderful natural invention & agree with you that not needing to add any further meds to our list where possible.

My kindest wishes once more.

[Megams in reply to Hidden]

Hi Keyes

Thank you for your usual helpful advice.

Yes been using saline rinse for some years now and add a few drops of aloe vera gel as recommended by my Rheumy.

Also use a bioptron light which helps heal from outside and if any sign of infection seek help from physio who uses ultra-sound with excellent results.

Had surgery recommend as last resort (12 or so years ago) as infection lingered 3 months with no response to various antibiotics.

ENT opened area up to improve drainage as bone structure very narrow. This helped tremendously.

My Father had similar issues plus surgery.

Both my late parents were English, I am first generation NZ & weather at times does not bode well for us sinus folks.

I watch diet very carefully also, no sugar, gluten free & follow fairly strict natural diet.

Also need to watch my gut issues as many problems stem from here without doubt.

Kindest wishes to you.

[Celtic PMRGCAuk volunteer]

Megams, for those of us who are vulnerable to infections at the higher steroid doses, we generally find that we experience fewer infections as we get to the lower doses. But as it can take up to 12 months for our bodies to completely return to normal after coming off steroids, no doubt due to all our various hormones adjusting themselves, it is wise to continue to take special care of ourselves, ie via a healthy diet and sufficient exercise such as the simple daily walk. Easter blessings to you, too.

[Megams in reply to Celtic]

Hi Celtic

Lovely to hear from you once more and your useful information.

Yes I feel for you all being so vulnerable to infections when on a higher dose and I thank God that I was only in that situation however brief at the time when having a temporal biopsy to rule out GCA Sept 2015.

I so wish I could say the same with being on the lower dose of steroid and the association of little risk to infection.

Unfortunately for me I am prone to infection especially for a cold turning to pneumonia & that was prior to PMR.

That is why I am so extra vigilant when a cold virus is around as I can not afford to be exposed.

Since PMR diagnosis I have continued to pick up any virus in circulation I have been exposed to especially when serving the public at our business, fortunately only 1 day a week now.

I am vigilant in washing my hands & carry a natural hand sanitizer in my car after having pushed a super market trolley or handling money.

I try equally as hard not to become too hyper sensitive to our situation & live life as normally as possible, what ever that is.

One of my favourite mottos: "those who matter don't mind" and "those who mind don't matter".

Take good care

Easter blessings in abundance.

[PMRpro Ambassador]

I don't think there is a straight answer to the immunity thing - some of us found we had fewer infections while on pred than normal! Or maybe the pred calmed down any inflammation with them so we felt better!!!

I appreciate your rheumy would like you to push through the reduction - but if you have PMR then you will need the low dose to manage the symptoms, which after all is all the steroid is doing in the meantime until the underlying autoimmune disorder burns out. Only then will there not be the daily dose of new inflammation that the daily and low dose is combating. There are many rheumies who believe such a low dose is not doing anything - the truth emerging when they persuade/order their patient to stop pred and within a matter of weeks, sometimes months if they are lucky, the symptoms have returned. It may not need very much, and that is the purpose of the slow reduction - to most accurately identify the lowest dose that does the job. Most good rheumies I know of who had a happy patient on the equivalent of 3mg of pred would be delighted. It really isn't only a case of the adrenal function returning and using the slow reduction - there is a point to be reached for most people where the obstacle is the return of PMR symptoms.

[Megams]

Thank you PMRpro - wanted to digest your post & come back to it.

When I saw Rheumy 2 weeks ago, I revisited the issue of numbness in toes & balls of feet becoming more evident. I initially reported this early 2015.

He has referred me to my Neurologist for further evaluation.

I also reiterated mild arthritic painful symptoms in toe and fingers/wrists.

Also complained of my on-going tendon/ligament issues & difficulty walking at times.

I did ask him if I have any of my own immunity now in which to fight with?

He suggested my adrenals would be working now being on a low dose??

It was only last month (February) he was suggesting I would probably need to remain on steroids for the rest of my life.

He did not qualify nor quantify his statement as I quietly sat reeling from what he'd uttered.

To have him say at this recent apptment to reduce came as a surprise - would love to reduce further.

The last thing I want is a major flare - I would rather err on the side of caution.

Whilst I can not assume what he was thinking, I came away somewhat confused.

On the strength of this I have made an appointment for a second opinion with another Rheumy closer to home with whom I consulted some years ago.

This Rheumy diagnosed osteo arthritis in fingers at the time - unfortunately can't get in until May.

I have lost count of the number of $$ spent seeing my present Rheumy on a monthly, basis, (some times twice a month), since June 2014 initially from soft tissue damage sustained in second fall until PMR diagnosis early 2015.

Would you consider seeking a second opinion a reasonable thing to do?

My kindest regards once more.