Link between dry eyes and throat and PMRGCA? Any ideas?

[allofaquandry]

This is my first post, so it’s a bit long-winded, as I’ve included some context and background.

Context:

• About 20 years ago, when I was in my mid-50s, I developed dry eyes and dry throat. This was eventually diagnosed as ‘dry eye/dry throat syndrome’. I had my tear ducts plugged to minimise loss of eye moisture and that did seem to help along with eye drops etc. The dry throat was bad, often choking/coughing badly when eating. Night time was particularly difficult. Blood tests negated Sjogren’s syndrome and I learnt to cope. Recently, on having an eye test, I was told that those plugs are no longer present.

• 5 years ago, I was diagnosed with PMR and when 15mgs prednisolone wasn’t having much impact a rheumatologist diagnosed GCA also .

• Having only just discovered, and become a member, of the amazing PMRGCAUK organisation, I am now trying to unravel and make sense of my own autoimmune journey.

• I have followed the rheumatologist’s advice on tapering off my use of prednisolone, but have had two relapses, thinking these to be withdrawal symptoms that I must work through. In retrospect I realise I was really struggling and should have sought help/advice.

• I have been prescribed methotrexate and then when that had extreme side-affects (coughing from deep in the chest through the night) I was prescribed leflunomide which compromised my liver.

• Each time I’ve tried to taper off my use of prednisolone, I seemed to get stuck at 7.5 mgs of prednisolone. However now, through this group, I have discovered the ‘dead slow, don’t stop’ approach which I have started to follow. But it’s early days.

The problem:

• I have noticed that each time I reduce down from around the 7.5 dosage my dry eyes/ dry throat problem kicks in. It is especially a problem with my eyes and ointments and eye drops(preservative free) are not helping.

• I’ve learned from this group about taking prednisolone at around 2 am to try to wake up my adrenals and I have had 3 days/nights now of taking prednisolone at 2 am.

My experience so far:

o The extreme dry eye problem does seem to kick in at night around midnight.

o Ointment and eye drops don’t seem to help. Cotton wool/ tissue soaked in warm water resting over each eye does help ease it. This is, again, something I learnt from this group thank you so much.

o I have noticed that not long after taking my prednisolone the eyes start to ease up. The dry throat is helped with glasses of water by my bed side and isn’t as troublesome as the eyes, though my voice is getting more gravelly. I will try the coconut water – thank you for this suggestion.

• The dry eyes do seem to be linked to the production of cortisol? I’m not sure where I’m going with this as I’m only just linking things up and trying to make sense of what is going on. In the past I have found it so difficult to know what aches and pains are down to PMRGCA, what is due to arthritis and what may be some other condition. I have recently been prescribed tablets for peripheral nerve problems in my legs and feet. These would appear to have more side effects that would also impact on dry eyes and throat, so I won’t be taking this up.

• Any advice/suggestions as to the way forward would be much appreciated. I think what I am doing here is organising and equipping myself with information and evidence to push for help from our overworked and under-resourced medical profession

I’m sorry this is so long-winded and many thanks all for bearing with me and for such helpful support and information.

[PMRpro Ambassador]

Hi and welcome!

Basically, you aren't heading relentlessly for zero - you are looking for the lowest effective dose at any given time. The PMR part of the GCA may still be active, it doesn't necessarily go away in a few years, some of us have it a lot longer than the doctors think and continue to need the antiinflammatory effect of pred.

Although you haven't got the antibodies that confirm Sjoegrens, there is a similar condition they call sicca syndrome that is common in people with autoimmune conditions, identical symptoms, just no antibodies.

It sounds as your problems are a bit inflammatory in nature and pred calms it down. If you are at 7mg or more, the likelihood of cortisol being involved is minimal, the pred takes over the function as they are both steroids, and pred is far more powerful.

[allofaquandry in reply to PMRpro]

Thank you, a big learning that I am not relentlessly heading for zero, but also I am not necessarily stuck at 7mgs and that the tapering approach should be at the very least less than 10%! I'm just hoping that I can wake up the adrenals by this very slow approach. I have learnt so much through this group, ie in stressful or demanding times to stop tapering and maybe increase dose briefly. It explains so much. On wards and upwards. I will research Sicca syndrome. Best wishes (or better still a big gentle hug!)

[PMRpro Ambassador in reply to allofaquandry]

It may be that you need a different brand of eyedrops or gel. Maybe discuss it with your optician?

[Sharitone]

Xylimelts can help a dry throat as well as a dry mouth at night

[allofaquandry in reply to Sharitone]

👍 I guess I get these online or can I get in pharmacy?

[Sharitone in reply to allofaquandry]

I don't know about the pharmacy, but you can certainly get them online, you know where! There are various prices, but the cheapest I found worked out at 25p per tablet. You put one between your upper gum and cheek and it sticks there. I found they last about 6 hours. If you have a bad problem, you can put one on each side, though that starts to get expensive!

[allofaquandry in reply to Sharitone]

Excellent.....hopefully one will do the trick. Many thanks.

[Daffodilia]

I use Theoluz Duo drops for dry eyes - dried an eye mask from optician but didn’t find that helped - you might?

[allofaquandry]

Thank you I haven't tried these yet. I did try the eye mask and also found it didn't help.

[Smithie49]

Hi there and greetings. I have read so much on here from many people with multiple allegedly auto immune conditions. Who knows? It does seem that some of us are susceptible to them. I too have dry eyes, PMR and other bits and bobs!!! My lousy cough has been found to be caused by silent reflux, presumably nothing to do with the autoimmune lot. I used to take all sorts of cough medicines or lozenges with no effect but Gaviscon or equivalent helps enormously. I've decided that some of us blame PMR or steroids or adrenals for anything happening to us when the symptoms could be something else entirely- or then again, maybe not 😞😓😩

[allofaquandry in reply to Smithie49]

Hi there, I agree, it is confusing trying to map it all. As I had the dry eye dry throat stuff well before all of this, and unfortunately somewhere along the way here I have lost the wonderful tear duct plugs that were making quite a difference, it seems to be the prednisolone that has been masking the old problem.....probably nothing to do directly with PMRGCA however all inflammatory stuff. I did have the possible reflux issue checked way back then and not a problem in my case. So much unravelling and learning. Onwards and upwards.