PMR and corticosteroid nasal spray

Bones, joints and muscles
1

Hi,

I have recently started using a prescription corticosteroid nasal spray for allergies. I know I will need this for at least 6 weeks (so much in bloom right now) and perhaps longer. Do you happen to know if there are issues with long term use of this when on prednisone?

I have been on prednisone about 15 months and am just getting down to the 5 mg level (again, after a relapse in December).

My doctor said there is no problem taking both (but he knows very little about PMR) and the pharmacist also assured me that I could take both (not sure if he fully realizes that I will probably be taking prednisone pills quite long term).

I am awaiting an appointment to an allergy doctor (probably about 3 month wait here in Canada) and I suspect I have an allergy to something like mold or dust as I have allergy symptoms year round now so there is a chance I will be on nasal spray a long time.

Spring is lovely here - but so much pollen in the air!

2

No, not any issues with inhaled steroids and oral steroids. Loads of asthmatics use both without problem. I'm surprised at the concept though when you are already taking pred unless topical is far more effective. Not something I'd use as I'm sure there is a kickback when you try to stop using them - or is that just with the other stuff to reduce the swelling?

We get periods with tons of pollen - after winter spring happens in about 2 weeks and everything blooms at once! I imagine Canada must be similar. So far I haven't had a real problem - but we have Sahara sand this week into the bargain!

Have you seen my reduction scheme? "Dead slow and nearly stop"? Here it is if you are interested!

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

all the best

Eileen

3

I have been taking oral steroids for Cicatricial Pemphigoid for 2 years. I am down to 4mg daily and trying hard to taper! [Unfortunately blisters are reappearing, so we shall see!] I also use steroid eye drops for a type of chronic uveitis. When I was on a high dose of oral steroids, I could ease up on my eye drops but since I have been below 10mg daily of oral Pred, I have had to resume the eye drops.

The Ophthalmologist told me that the oral equivalent of the ocular steroid, would be a much higher dose, which is why the topical steroid is better. Whether the nasal spray is similar, I don't know. I have found that Hospital Pharmacists have a greater knowledge than those on the High Street

4

Eileen, you are so well informed about prednisone! And I have taken to heart your slow dose reduction, which I am doing now.

Can I ask one more thing...?

I have been on varying high and low doses of preds (oral) for 8 years, and after reducing from 20mg, am currently reducing from 12.5 to 10mg daily, by going alternate days (so far so good). Over the years this has first been for RA and more recently for PMR.

My major problem now are my eyes. I have contracted an RA offshoot called keratitis, an extreme dry-eye syndrome. My eye doctor put me on pred drops along with a lubricating eye gel and tear drops (plus a twice daily drop called Restasis to stimulate the tear ducts that needs to be taken long term...)

My work is on the computer and involves large amounts of reading (whose doesn't?) and this has become a torment for me.

He took me off the preds drops after ten days but in desperation, after two further weeks, I have gone back on them twice daily, one week before my next visit is due.

I know that taking long-term cortisone eye drops is dangerous, but I wonder if you happen to know whether my increase in eye problems over the last week could be affected by my recent reduction in preds daily pill dosage?

It's a bit complex, I know, but Mrs CJ's post above, talking of corticosteroid (prednisone) allergy nose spray, made me wonder if the same might be true for corticosteroid eyes drops.

Any clue?

5

Light, may I ask you a question, how long have you been using steroid eye drops? If it is a long time, it becomes progressively more difficult to come off them. You tend to get a steroid rebound. I have been using steroid eye drops for many years.......under supervision. Whenever I reduce them too much, I get a flare up of the uveitis.

6

I think I would have said what mrsmop has said - I suspect that the use of topical steroids of any sort is always associated with difficulty trying to use less. I suspect too that that also applies for the oral doses we use for PMR - and why our terribly slow (apparently) way of cutting down works better than the bigger reduction steps. And yes I also suspect that a higher oral dose supports other usages - or makes things that need topical steroids not bad enough to feel we need the topical ones yet. Does that make sense? I know what I mean!!!

You need a super optician/eye doctor! Have you got "computer only" glasses? That I find makes a mega difference - far better than trying to use vario-focals. The specs I was given for computer-only when I first got PMR, not recognised so no pred but dry eyes, now also function for reading when I can't manage without and holding the book closer. Although my distance prescription has remained near enough the same, the same can't be said for the rest! But I haven't updated them - I move my specs up and down my nose! I have distance, computer, sunglasses - all slightly different but they all come into use and it saves me spending an arm and a leg on variofocals. In fact - it is beginning to be thought that variofocals just might be a factor in many people being unsteady so I'll be sticking to my way I think!!

Eileen

7

Thanks for your input, both of you.

About 3 or so months ago I stared on cortisone drops x2 day for ten days, reducing to x1 for another week and then to every other day for the next week and then to stop.

But a new ophthalmologist referred by my rheumy because he understands RA-related eye problems took me right off them and put me on the other three lots of drops & gels. But two weeks later or so, I was back in agony and so he put me on a different type of cortisone drop, less percentage, which relieved the pain somewhat and again was slowly reduced.

I'd been off them altogether for about three weeks and it felt like everything was very slowly getting fractionally better.... and then suddenly a slide-back. That's when I prescribed the drops for myself again, yesterday, starting at x2 for 3 days, with a plan to reduce the same way but quicker...

I'll be seeing him again in just over a week. Each time I go, he checks the tearing rate of each eye and the first time it had improved slightly.

Eileen, the problem isn't really with my eyesight so much as with extreme burning, stinging, and itching, and microbe filaments that attach themselves to the cornea and make me feel as if I'm feeling a thousand onions non-stop while sitting in your Saharan sand storm (or as it sounds like it must feel – but probably a lot worse). It happens with focused vision, looking into the screen, but even on paper, reading or any detailed work which means the eyes aiming at spot for a while.

But i will ask him about special computer glasses. Right now, I've inverted my screen image to white on black and it seems to bring some slight relief. Makes everything look very eerie though!

8

I had a bizarre problem in the early days of PMR - we thought it was dry eyes but that didn't account for the bright red burning itching photosensitive expression of whatever it was! I suspected the new improved version of the contact lens solution (others had had similar results!) but going back to the old version didn't help either. I managed to get on fairly well with daily disposable lenses for occasional use but it wasn't the same as before and eventually I just gave up except for special occasions. It was never as bad again, it improved after a few months.

I haven't had any repeat since being on pred - and am considering trying out lenses again since I have 6 months worth on the shelf still within date (I think). I do find I need to to look away from the screen far more often than I used to. Don't know anything about the filaments you mention - but the rest sounds horribly familiar.

9

That has reminded me about rose tinted lenses and photophobia. I think initially the rose tint was to help migraine sufferers but it might be useful for computer screens too

I suffer from photophobia because of my eye condition but it is also a side effect of Methotrexate. Having said that, I wear photochromic specs inside and a very dark tint outside unless it is very dull and not rose coloured tints!

Photophobia is a side effect of several drugs and I can't remember whether or not Pred is another.

Good luck with your next visit Light. Another idea for your visit, is to ask for Minims eye drops. They are the single use, preservative free eye drops. The Ophthalmologists might use them in the clinic you attend. I have to use them because I am allergic to so many things but one of the Ophthalmologists that I see, told me that some of the ingredients cause problems in most [or many] people.

Google minims single use eye drops and you will probably recognise the boxes!

10

Just for the record, I have been on Pred for more than 13 years now, asthmatic for the same amount of time (late onset) and using steroid inhalers, but every year I need a steroid nasal spray or the pollens get to me. I've also been photophobic since childhood and wore specs all through my teens, twenties and thirties, then didn't need them for nearly 20 years as my eyesight evened up (myopia plus astigmatism).

The only time someone has questioned my steroid load was a new nurse at the asthma clinic. She definitely didn't want to give me a repeat prescription for a new inhaler, but when I asked her what she wanted me to do she said she didn't know! I had to work hard to convince her that I needed it. Not one other person has so much as mentioned steroid loading to me. It didn't worry me particularly as I was aware of the situation before it started, but someone not knowledgeable would have found it a problem I think.