Sweats

[Nsmith13]

I’ve just been diagnosed with severe Sjögren and I’ve got to have some plugs put in my eyes I’ve had really bad fatigue and head sweats as well as headache in a morning I’ve been on steroids and hydrx for a while going to ask doctor for oxybutynin to see if it helps sweat 😓💦 any advice ??????xx

[Hidden]

No but I will be very interested to hear how you get on. I’ve been suffering from sweats particularly head ones but the DRs have dismissed them. I get dry eyes, mouth and skin . I have asked for SS test but have to wait 6 months until they refer me (next Rheumy appointment )

[Nsmith13 in reply to Hidden]

Yes al the same symptoms horrible will keep you posted thank you for reply x

[Shalf]

Hi lovely, not heard from you in a while.

I have same thing. Unfortunately plugs didn't work too well and I'm currently continuously putting hyloforte in eyes. Waiting on appointment at specialist hospital

Re head sweats/headaches and fatigue, it appears this happens more when inflammation is very active. What's your med situation now? I'm still in the trial and error position with drugs. It's so emotionally tiring and physically draining.

I have refused steroids so many times but gave in last week as couldn't stand the symptoms any longer.

Sending love xxx

[Nsmith13 in reply to Shalf]

I’m still here I’ve just been like you up and down but at

Least I’ve got results the plugs are just to try and if any good I can have a more permanent ones fitted so go Bk in 4wks I’m just fed up with dripping hair 😖xx

[Lizard28 in reply to Nsmith13]

Hi, I’ve just had plugs in after complaining for years, I had red eye every few days, doctor said I had almost no tears in one eye after the test they did. They are great during day but my eye is still very dry at night but I’m still pleased. I go back in a few weeks to see if they are working. The small plug one was too small she said so tried a bigger one, it was too big so back in again with the small one. So far so good, it’s still in. I’m afraid my Rheumy kept dismissing my dryness but she is finally listening to my moans, she keeps referring me on, this time it’s my feet, never ending.

[Hidden in reply to Lizard28]

I’m glad they have started to listen to you . I’ve the same problem. I went to my GP at the start of the year with dry eye. Gave me drops and said my eye lids were baggy nothing he could do . I explained about my dry mouth and skin he didn’t even acknowledge me.mentioned it to Rheumatologist who said we will review again next appointment 8 months . Same with my feet I haven’t had a day since Christmas where I have not hobbled, shuffled or limped. Gp says it’s just your RA , only reply is mmm might be time to start biological meds . Then told application denied. No mention of help with my feet. 2 weeks a go I had to break down in tears at my Gp( I saw a new reg) who said I will refer you orthotics and push your Rheumatologist for a SS test. Will have to wait and see.

[Lizard28 in reply to Hidden]

I’ve been seeing a Rheumy doc for over 7 years now and for some reason, if the bloods don’t show it, everything is a no no. She said I habeen a mixed connective tissue disease and this is prob causing the dryness. There is not a cure for SS but they can hopefully make the symptoms a bit more comfortable. I think it’s at the bottom of the list in my Rheumys eyes. I told her my GP gave me salivax for my dry mouth and she wrote that down, maybe just to tell next patient to buy them. Good luck with getting a diagnosis.

[Chester02 in reply to Lizard28]

Hi. Have they not prescribed you an ointment for nighttime? I have severe sjrogrens and dangerously thin corneas and ointment is wonderful if not a little messy but a small price to pay for keeping them moist at night. Maybe worth asking your GP. I use Xailin Night lubricant but there’s plenty of others to try. Good luck x

[Lizard28 in reply to Chester02]

Hi, yes I’m just told to buy my night ointment, it only lasts a month but the one my optician advised me to get is no longer available, the chemist either gives me viscotears gel or zailen night but even they have stopped working. Consultant ophthalmologist said they were ok but I may ask him if he can advise me of another..

[Nsmith13 in reply to Chester02]

Yes 2 drops and ointment day and night just waiting for prescription as there over £20 and I get free ones

[weathervane]

This is quite strange, i have Sjögrens and i also get head sweats . I thought it was just me , my hair can become soaking. I am receiving 6 monthly rituximab infusions which has helped with some of the dryness and fatigue and definitely other symptoms, lymph node enlargement and muscle and joint pain. Personally I would be loathe to try oxyybutynin but I would be really interested to hear if anyone had any success with it . Best wishes 🌸

[Nsmith13 in reply to weathervane]

Yes I was offered Rituximab after mtx and benapali but I’d had enough but this is not nice at all x

[weathervane]

So far rituximab has given me a life as i was very low a couple of years ago and unable to function. I have had trouble on an off with low white blood cells and infections but so far managing it . Best wishes, i hope you can find a treatment that makes a difference 🌸🌸

[Nsmith13 in reply to weathervane]

Thank you 💐

[sylvi]

The eyes being plugged are to stop the tears from running straight through and to keep your eyes moist. One bit of advice Don't MOVE when they are doing.xxx

[Nsmith13 in reply to sylvi]

I’m ok with eye drops and looking in my eyes so hopefully I can keep still xx

[Barrister]

I take oxybutanin for irritable bladder but I still get head sweats (I have PsA and Adrenal Insufficiency ).

Clemmie

[Hidden]

Get your Vit D levels checked mine were incredibly low and this is what caused mine so 12 weeks later better but still taking the Vit D

[Deli1]

Hi all. This is interesting to read. I have really bad head/face sweats & extreme fatigue. I didn’t know it could be linked to RA/sjogren. I am always carrying a bottle of water with me as constantly thirsty - thinking this could be dry mouth now and have just noticed inflamed lymph nodes. Something to discuss with doctor.

What are the plugs you are talking about?

[Chester02 in reply to Deli1]

Hi. They are called punctal plugs. Tiny silicone plugs that go into your tear ducts to try keep any tears in your eyes longer rather than them draining straight through the tear ducts. I’ve had them numerous times for dry eye but have had some trouble with mine. One for embedded in my tear duct and caused infection so had to have it cut out!not pleasant but may be worth a try as do work for a lot of people x

[Deli1 in reply to Chester02]

Thanks. I think my eyes are ok though. Well, at least for now! Worth knowing about though. Sorry you had a bad time with them. They sound v fiddly!

[Deli1]

PS - I wanted to tell you that I have Botox in my head (scalp) for the sweating. It seems to reduce it & lasts about 9 months. It’s difficult to find someone who does it though as it’s a different process to Botox for wrinkles! This is what I meant to say before I went off on one about Sjogren symptoms. Lol

[Hidden]

I have been puzzled about the way I sweat on top of my head for years now. It is so bad that it runs down my face and into my eyes and down my neck. I get all cold and clammy with it and sometimes put a towel around my neck so that I can keep mopping it up. I look as if I have just got out of the shower and not bothered to dry my hair. I also have dry eyes and mouth. I was tested for Sjogrens but was told I didn't have it but had Siccca Syndrome. I am also constantly thirsty and have to carry a bottle of water with me wherever I go and also some boiled sweets to suck. I have mentioned all this to my rheumy but she just doesn't seem interested.

[Deli1 in reply to Hidden]

That’s interesting. I know it’s horrible. I used to carry around towel too, I still sweat but it’s much better with the Botox. I put it down to all medication I’m on. Try and see if you can get some treatment. Good luck.

[Nsmith13 in reply to Hidden]

Yes I agree with all that it’s horrible l get so fed up !!!!!

[Lucky4]

I can really relate to the dry eyes. Mine got so bad it felt like someone kicked sand in my eyes, always. Over time, I got punctal plugs in both eyes which helped a bit but the best thing I ever did was start on cyclosporin eye drops (forumulated by pharmacy but essentially Restasis). One of the punctal plugs wasn't working well enough so my one tear duct was surgically closed. I use the eye drops every night and occasionally in the morning. My eyes now feel essentially normal now.

I did end up with another problem which was a scratched cornea (now I put goggles on to garden). Those of us who have really dry eyes don't heal as well with our corneas, I was told, as at night the new cells that can heal the cornea get torn off. So, at night for three months, I used either a good eye get or ointment so that I wouldn't end up with a chronic cornea problem. Also used good eye drops during the day (not Visine but good quality with no preservatives). So far my cornea seems to do be doing OK.

Sorry for the long blurb. Dry eyes were unbearable and dry eyes can profoundly effect quality of life. I wish you all well. I'm very happy with my eyes and was fortunate enough to have some excellent eye doctors/specialists.

Hope you can some improvement.

[Nsmith13 in reply to Lucky4]

Thank you I will keep you informed on any improvements

[Fruitandnutcase]

Dry eyes are awful, it sounds simple to say you’ve got dry eyes but no one realises the agony they actually are.

The rheumy I see has told me the past twice I’ve seen him to try ‘Sno Tears’, they contain PVA, none of the places I asked sold them so I gave up, Last month knowing I’d be seeing my rheumy again I looked them up and managed to buy them from an online chemist.

Normally I use preservative free eye drops such as HycoSan, Hyabak etc. They are expensive but gradually I’ve found they’ve all stopped being so effective and my eyes have been drying out really quickly..

This year I felt that if see the same guy I when I go next month I just can’t say I still haven’t tried them so I googled and managed to get them from an online chemist and they seem to be really good!

I don’t think they are even preservative free plus I think they are probably quite old fashioned compared to the preservative free drops you get nowadays but they are very cheap and I’d say it’s definitely worth giving them a try.

[Nsmith13 in reply to Fruitandnutcase]

Ok thanx