Hi,
I have many many symptoms of Sjogrens but the one that gives me the most daily pain is severely dry eyes. My rheumatologist has now prescribed Pilocarpine and I started on 5 mg today. Almost immediately I noticed my mouth wasnt quite as dry but after one day I’ve not noticed any difference with my eyes. Did anyone have success with this medication? If so after how long? Can you recommend any other tips? For example how much fish oil do you take a day etc.?? Thanks
I've been taking Pilocarpine for many years. I can't say that I noticed much improvement when I started. But my eyes weren't very bad at that time. I think it has slowed down the progression of dryness over time. With no known or experienced side effects, I will continue to take it as long as there isn't a better alternative. Studies have shown it to have positive effects. And I'm in it for the long haul. 😀
Yes, I am similar to you, LWhelan , and SusieW2 . Pilocarpine helps my mouth much more than my eyes. However, when I miss a few doses (not often but if I'm out of routine or something) I do notice my eyes are more dry (feel like dust in them). So there is something it is doing. Also, I notice if I increase my tramadol it worsens the dry eyes. You didn't say anything about Tramadol but I mention it because maybe, since you aren't getting apparent help from it, looking at any other exacerbating factors is worthwhile. It sounds so minor to say, "I have dry eyes" or even "...severe dry eyes" but we know it can be miserable on top of so many symptoms.
Pilocarpine is typically prescribed 3 per day but I recently asked for 4 per day and I did get the increase as my oral and eye dryness has worsened over the years.
Do you have punctal plugs? My GP didn't know of them but it is a non-medicinal way to retain any tear film you do produce. Had to get consultant opthalmologist to insert them. It helped right away when I first started using them years ago. The first ones were the right size; they stayed in for a long time. Something like 10 or more years before one came out. The second pair I had to go back a few times, a few separate appointments between being too large or too small or out of inventory of the size I needed, but when right size inserted again it helped a little. (Over time my dryness has gotten more severe to the point I do not think I make much, if any, of the 3 or more ingredients of natural tear production.)
Currently (xabout 2 years) I use Xalin "night ointment" both during the day and night because none of the drops provide me relief as they dissipate too quickly or even give a burning sensation when I put them in my eyes.
I tried Omega oils but already have a lot of digestive/bowel disruption and that just worsened it so I couldn't tolerate them. Some people do find it helpful. You could probably search even on this site and find testimonies, or ask the admin how to get input on that. Maybe it needs to be a new question with "omega" or "fish oil" in the title. I don't know much about how the search feature works but it seems like the admins read the posts and jump in helpfully. Hmmm, i just scanned this and realise your article/question does have a tag called fish oil so maybe that is a good search word.
I used to find a warm compress helpful. It increases the fluidity of oils from your own meibomian glands, if you have some production of this oil. Maybe I don't make any of it anymore. Occasionally when I'm desperate I use the warm compress for comfort/soothing but I don't get increased tear film on my eyes that I can recognise anymore. If you want to try I got one off ebay or amazon that -- hmmm, can you say brand names? well, it has little beads in an eye patch that I warm in my microwave for 20-25 seconds. It stays warm a lot longer than a face flannel warmed with hot water and I would do so for two or three rounds.
Having dealt with this since the early 2000's I am feeling for you and hope there is some pointer in here that is helpful. H2
Many thanks for all your suggestions this really helps. I have only been taking the tablets for a few weeks and to date they have made no difference and I am really struggling with my eyes, however, I am only taking 1 x 5mgs a day. The rheumatologist has advised I can increase 2 twice a day after 6 weeks then 3 times a day 6 weeks after that so hopefully as I increase the dosage things will improve.
Hello. I also have severely dry eyes. I have 4 punctal plugs. I did use Pilocarpine for about 6 months and also found there was a greater impact on mouth lubrication than in my eyes, though there was some improvement.
However, I didn't enjoy the side-effects 😒 I found that about 20-30 minutes after taking a tablet, I had quite a severe chill with heavy perspiration all over but feeling really cold and shivery.
I now use iKervis drops (Ciclosporin) twice a day, which has been amazing. My eyes are actually occasionally runny!
I also recently bought a pair of moisture-retaining glasses, recommended by my Opthalmologist. They're like normal non-prescription glasses but with an inner silicon eye cup magnetically attached to the frame. Almost like swimming goggles but not tight fitting. They are superb at retaining moisture. I wear them in the house when the central heating dries out my eyes and especially in the car which had become unbearable. Mine have reactions lenses so will act as sunglasses in the summer. The clear lens has a very slight yellow tint to it which is great for driving at night and cuts down screen glare.
Thats great advise. My eyes are sore as hell and gone double sighted and I dont get on with Pilocarpine. I will ask about these drops and glasses. Been on waiting list for punctal plugs for a year x
A waiting list?! Gosh, I'm so sorry 😞 I must have been very lucky. I started with just the lower lids and there was some improvement. But I ended up needing the upper ducts plugged too to get real benefit. They do fall out occasionally and I have had to stand my ground to get them replaced.
I do hope you get yours soon. They're so small and inexpensive. Take around 30 seconds to apply. It's very frustrating that you've waited so long 🤞
Are they sore to be inserted?
Usually some local anaesthetic drops are used. But I've had then inserted without and the discomfort (not pain) is definitely bearable.
Great thank you
I have punctual plugs inserted about every 3 mos. I have some numbing drops put on before. They do help
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