Hi. As i’ve already said. I’ve been on this forum a few times. Not on a regular basis though. So maybe i repeat myself bit. (Sorry!) I’ve just turned 49. (I had a publess birthday last week). I’ve had rheumatoid arthritis & Iritis since i was 21. Glaucoma came on about 9 yrs ago. I’ve had some awful procedures done to my eyes. Plus very, very painful stuff done to my feet. I’ve been having an Infliximub infusion every 6 weeks for about 15 yrs.
As i’ve said. I’ve just turned 49. For the last year i’ve had, what i’ve THOUGHT to be menopausal symptoms building up. I now have a horrible feeling the meno has triggered Sjogren’s Syndrome. Especially in the last 24hrs!! I’ve been driving ‘Dr Google’ mad asking him questions. (Scaring myself too, looking at photos of faces & eyes), that seem to have it. In the past 24hrs, i feel my face is a bit swollen & my eyes have started looking heavier. The lids seem heavier. Those 2 were totally new. But i’ve been driven up the bloody wall with excessively dry eyes & the most awful dry mouth. I’ve drunk what seems like buckets of water. I’ve got fake saliva. Dry mouth sweets. Sug free gum. Dry mouth gel. But this is permanent. They help for a while. I just feel quite scared that I MIGHT have an extra auto immune disease on top of the RA. I rang a lovely Rheumatologist yesterday. He’s going to order some blood tests etc. I was actually tested for SS 2 yrs ago. But i feel the menopause has triggered this awful syndrome.
God i ramble on! I might be having some tests this week. I just wondered if anyone’s in my ‘crappy’ boat??
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Vixen2
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Hi Vixen2, sounds like you’re having a particularly rough time at present. I hope your lovely Rheumatologist will pinpoint the problem and perhaps help to reassure you.
I had terribly dry mouth etc when on Leflunomide, resolved when changed to biologics, not as bad as what you describe.
I found the ten years leading up to menopause were difficult but in my case not as bad as expected; I was otherwise pretty healthy, pre RA.
It might be best to try not to Google any more for now, get on with something that helps you relax if possible, and trust that the docs are working to treat you appropriately. Sending gentle hugs. 🤗
Hi Charisma. Thanks for replying. I’m no good at summarising. I always gabble on. I’m glad your health seems to have settled.
I agree about cutting back on googling. I’m already ahead of you. I’m watching Miranda on iplayer. I know it’s a bit silly. But i need something lighthearted when i’m not feeling well. (Plus a lovely cup of tea & a few jaffa cakes!!)
Sounds good... constant rain here yesterday and today. Been on my exercise bike, enjoying my lovely views to the river and park while playing an uplifting CD. Take care. x
Your place sounds idyllic. I live over a Primary School. It’s sad seeing them standing on their 2m spots. Just looking at eachother! They have a ball. But they’re only allowed to bat it with a stick! Take care too. X
Your place sounds beautiful. I’ve only got a small flat. But it’s in a lovely location. (Covent Garden). Right by lovely old Theatres. It’s nick named Theatre land. But at the moment it’s just ‘Land’. I’m so scared about the beautiful old pubs & theatres round here. I bet you’ve got some lovely old pubs near you with beer gardens. You have more space in Scotland. It’s more built up in Central London. I can’t even think of a ‘boozer’ near me that has a beer garden. I’ve got to go to Scotland one day. I love the old tenement buildings in Edinburgh & Glasgow. I lost my lovely mum 2.5yrs ago. Miss her like mad. She used to love watching Rab C Nesbitt. She was in fits watching him.
Everywhere is indeed still rather lifeless but it’s just a few months out of the many years to come for theatres etc.
I used to enjoy beer gardens in York and surrounding areas many years ago when I lived there for about 23 years.
SW Scotland is beautiful but definitely low in population, not so many places for cultural pursuits; one theatre remains and one very small cinema in the centre of the largest town, and the odd one in other parts.
I tend to enjoy the outdoors here, always loved outdoors so feel very fortunate to have my home back here again. I currently am still very limited in how far my ankles and feet, knees and hips will bear carrying me; not been pre RA normal at all for five years but relief from drug therapy does occasionally mean I can do a fraction of what I was once capable of.
I hope you have some decent neighbours/friends/family near enough to have company outdoors now, weather permitting. Stay safe.
There is a woman called twitchytoes on the Lupus Healthunlocked Forum who has primary Sjorgens, after an initial diagnosis of RA, and has had a really, really crappy time. Head over there and look for some of her posts, as might help you get a diagnosis.
Bloody hell. I was wondering if all along i’ve been diagnosed wrongly all these years. But i doubt it, as my treatment has been working. But now these new symptoms. I think i might have secondary sjogren’s. Might be nervous to hear what twitchytoes. (Great name. Or is that one of her symptoms?) has been through. I will though. Thanks helixhelix x
Many of us have secondary sjorgens...primary is a whole new ball game. I hope for your sake you haven’t but her posts will give you an insight into how to get a diagnosis.
Hi vixen. I have had RA for 4 years and have suffered with a dry mouth on and off. Last year it ramped up eyes, nose and mouth very very dry to the point they really were sore. I was diagnosed either Sicca ( Sjögren’s related to RA) GPS not much help. Opticians may be able to offer better eye drops. I now use a biotin toothpaste and mouth wash alongside a mouth gel but it is all just short lived. I find ice cream helps as does a citrus ice lolly( this really relieves it) . I often find if I’m flaring it is much worse. You need to let your dentist know as you are more prone to infection and gum disease as your not making enough saliva
Think I might be in a similar crap boat to you. I've had JIA since the age of 14 (51 now), and developed secondary Sjogrens Syndrome about 5 years later. (I was told by a very precise Maxfac consultant that when you get SS with an existing disease like RA it's always called secondary Sjogrens)!
I've had serious eye complications related to my cornea too, resulting in 4 corneal transplants. I've also had bouts of scleritis and steroid drop induced glaucoma resulting in a trabeculectomy in the past.
The dry mouth thing is an absolute pain as you say. Sometimes it's hard to eat and swallow, and I think it's definitely affected my taste buds over the years too. Unfortunately as you say, there is no magic cure. Some medications can cause dry mouth as a side effect, so that can exacerbate things. I use a dry mouth spray, gel, sweets etc as you do. I also use a dry mouth mouthwash made by Boots which can be quite helpful. It's quite thick and syrupy so hangs around in the mouth for a while. I've found the symptoms do come and go though, so there are times when I don't use the mouth things very much at all. Hopefully you'll find that too.
The eyes have been much more problematic. It's like a constant thirst that's never quenched. I'm under the care of Moorfields as well as my local hospital in the midlands. I have to apply eye drops approx every 10 mins. Sometimes more, occasionally less. They are permanently clutched in my little hands!😊 I have to use preservative free drops as using them so often over the years has made them extremely sensitive. It's worth trying different types as some may suit better than others. I get them on prescription too (20 bottles per month). Some people find gels like celluvisc useful too. I also use something called simple eye ointment overnight. About 3 years ago, Moorfields enrolled me on a trial for something called 'blood serum' eyedrops. I have to order them from the NHS transplant dept in Liverpool every 3 months. I have one's made from other's donated blood. You can donate your own and have them made from that, but I'm usually too anaemic, so this was the best alternative. These drops have been amazingly helpful. I think they're only used when things have got very severe though. Hopefully, you'll find products that work well for you. Other tips are don't stare at screens too long, blink often, beware of air conditioning and windy weather. Also, central heating can aggravate too.
Again, it's about the best management and there definitely will be times when it's less bad. So, try not to worry too much, there are lots of things to try nowadays in order to keep things under control.
Hope some of this may prove useful. Any questions, please feel free to ask!😊
Hi Kags. Bloody hell. You’ve been through the mill too. I thought 21 was young enough to go through this crap. But 14? How awful. You should have been jumping about playing netball. Not dealing with such serious health stuff. I think it gives you more empathy having such emotional things to go through.
I’ve been there with eye stuff. I’ve been going to Moorfields 28yrs. But i’m lucky i’m only a bus ride away. You live in the Midlands??
I’ve had 2 cataracts removed one when i was 26 & 1 when i was 40. A Trabectolectomy, a shunt fitted. 2 steroid implants injected into my eyes last year, as my vision was really going downhill. (Very scary). Loads of steroid injections in the eyes over the years. Now with the severe dry eyes, i’m getting double vision & dizziness.
I’m quite low about this. But tomorrow i’ve got my infusion. It saved me. Just before Christmas I had the worst flare up of RA of my life. I was bedridden for 3 months. The pain was indescribable. I felt suicidal. Steroid injections didn’t help. Then my lovely Rheumatology Nurse gave me double my normal dose & bloody magic. Within HOURS i had slight relief. The next day? I couldn’t believe it. Fantastic. Thanks for all the advice. Like i’ve said. I’m having blood tests tomorrow. I was tested for SS 2 yrs ago & Lymphoma. Thank God they came back negative. But i have a nasty feeling the menopause has triggered SS. Anyway. I might find out tomorrow... Might keep you up to date! X
Haha - yes , it's surprising how much crap such a lot of people have hadto wade through isn't it?! I agree though, it definitely helps to give you more empathy toward others which is certainly a good thing.
I've been going to Moorfields since 1994. They have been fantastic. I go to the 'external diseases' clinic. My local eye dept (Coventry) didn't have experience of my problems at that point as apparently quite rare(?), so thank god they referred me on as it was that or lose the eye! My eye is still in situ, but I don't have any vision in it. The hope is that maybe in the future some operation/treatment may be found, and also in case anything happens to my remaining 'good' eye, there may be something that can be salvaged. All a bit rubbish, but as I'm sure you know, you have to try your best not to focus on those possibilities as it would drive you round the bend!😁
Sounds like you had an awful flare up last year. Still scary aren't they, even after all these years? So pleased your nurse was able to adjust your treatment so it helped. My god, that must have been such a relief. It is so scary when the eye problems occur too. Hard to explain that horrible feeling in the pit of the stomach when you fear it's getting active again. I can tell you've had a lot of experience of that with your eyes!
I do hope your appointment goes well tomorrow. Yes, please do keep me posted. That would be nice. Good luck🤞
Ps. I did used like to play netball in middle school before I was poorly. Don't think I was too much of a loss to the sport though as pretty rubbish! 😄
Hey Kags. You sound great. Positive! I do try & remember there are people worse off than me. Especially now with this evil virus on the scene. But then i think. Bloody hell. There are people better off than me too! But you’ve got to try & find a balance.
One of the things i love to do, is sing jazz & soul. But with my bloody dry mouth, it’s weakened my voice. Good job i’m not some up & coming singer. Imagine if i’d won X factor & you lost your voice!! Simon Cowell would b pissed with me! x
Aah bless, thank you for that kind compliment, although it's totally undeserved! Sounds like you do your best to stay positive too. I think you are dead right about trying to find that balance as yes, there are many people who do seem to float through life, while some of us most definitely don't!😳 Don't know about you, but I find it's soooo much easier to stay positive when things are stable and you feel relatively ok. I guess that probably goes for most people?!
Singing - oh I envy you. I love singing around the house but for the sake of humanity, that's it! I bet the dry mouth is a bugger with that. Coincidentally, I love soul music - massive fan. My husband is a big jazz and blues fan, so I've been dragged along to many jazz gigs in the past. Last November I went away with 3 friends for a weekend. First time I've been well enough to do anything like that for years. Went to Butlins (I know, perhaps not the classiest of places, but then I'm not classy!), to a Soul Weekender. Absolutely fantastic time! Most fun I'd had in years - felt like I was back in my early 20s again!😊
My primary diagnosis is APS, ( anti phospholipid syndrome.) it’s a blood clotting disorder- part of the lupus spectrum. ( problems in childhood/ surgeries/ etc.)
I had a very high RF detected at age 40.
I’m currently undergoing rituximab infusions and steroid ( solumedrol injections of 80-125 mg as needed to control immuno thrombosis en situ and vascular swelling due to Vasculitis ( not ANCA/ PANCA) due to APS antibodies along the vessel lining.
Sjögren’s syndrome can often be proceeded by sicca syndrome by a few years . This is picked up on by clinical symptoms, especially in light of negative antibodies for Sjögren’s.
Hydroxychloroquine might be suggested by your rheumatologist to halt progression if you are not already on? I’m sure you might be?
Hi KellyinTexas. I’ve been on Infliximab infusions for 15yrs. I used to have steroids in with that. But i started getting hair loss on my crown. I asked them to stop the steroids. (So vain!) I was also on Methatrexate for a while. But i took myself off it. Then i was on Humira injections a few months ago. I was just getting used to injecting myself. But it wasn’t doing anything for me. Was having the worse flare up of my life. Inflammation in every joint. So i came off that & sticking with Infliximab.
Thanks for the advice though. I’m seeing my Rheumatologist soon. I’ll ask him about the drug you’ve suggested!
Hi again. I would really be interested. I’ve just come back from the Pharmacy. I’ve told the Pharmacist about my swollen eyelids & slightly swollen neck. She told me i should call our non urgent medical advice line. She’s wondering if i might need A&E. She didn’t know much about Sjogren’s. If i didn’t have my appointment tomorrow, i think i would. I’ll go tomorrow instead. Hopefully i’ll be able to see a Rheumatologist too.
The tests they do is take a piece of skin from inside your mouth and it doesn't always confirm Sjorgens. I have it and my eyes are always sore dry, itchy, mouth always dry as well. My eyes are always swollen and look red on the lids too. It is just another problem to get used to. xxxxx
Hi Sylvi. I know. It’s frustrating. Especially if the tests don’t confirm what you really know. I noticed my eyelids looked heavier than normal. (Swollen). My left eye used to be lazy. (All the procedures over the years on both of them & steroid eye drops. The muscles have weakened). But now they both look the same! It’s the fact i’ve got some fluid on the left side of my neck. I felt it yesterday. I hadn’t before. Plus it aches on that side when i turn it. I look a bit like i’m on steroids. A bit moon faced. I bloody hate that. Especially as i’m not on them!! I’m quite nervous. Haven’t slept at all much. So i’m trying to take my mind off it. Got a horrible sink full of washing up!! But SOMETIMES i like cleaning & doing boring every day things. Rewarding when it’s done. Good luck with all your health crap too!! X
A kind, patient man is lovely. Shows they have real empathy! I’ve got a nice cuppa, a few jaffa cakes, my fan on & i’m going to watch something funny on my tablet. I’d go mad without something to laugh at x
Hi Viven I have similar problems to you. My dentist referred me to hospital Sjogrens was confirmed sorry no cure. Just another thing to add to the list of ailments. wishing you well Carol
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F#*& off R.A. and u 2 pain meds. 
inflammation in eyes 
New member awaiting confirmed diagnoses of RA
