Sjogrens Syndrome

[Golfer5418]

Hi All,

My name is Paul, and i hope you are all on the right road to better health.

I have been struggling with poor health myself for 30 yrs now with no real light at the end of the tunnel. Extreme fatigue , aches and pains, inflammation nausea and dizziness and very poor immune system, with lots of ailments seeming to hang around for months instead of weeks.

I have been down a road that many of you will recognise with consultations and opinions and diagnosis too numerous to mention, all in good faith may I add , from the top people in every trade available at many hospitals. From Chronic Fatigue to Vertigo , ME, and our old favourite Fibromyalgia.

I have been recently diagnosed with Sjogrens Syndrome , and with all the combined ailments that seem to go with it, including very dry eyes and dry painful mouth and the new kid on the block "Rheumatoid Arthritis " and after all the research that I've done myself i think (or hope) the specialists might have finally nailed it.

So !!! The consultant has put me on a Leflunomide and Hydroxychloroquine as a combined attack. I have now been on them for only 9 days and i understand that it can take quite a while for them to take effect, but I am already getting headaches and nausea .Can anybody tell me if this is normal and does it ease off or do I need to speak to the doctor again (who is probably sick of the sight of me ha!ha!)

Thank you for listening to my rant

Kind Regards

Paul

[Madmusiclover]

Leflunomide has headaches as a side effect. I couldn’t tolerate it at all! Others will comment with more experience than I.

[Deeb1764]

I had what you had horrendous headaches with it however I also now on Baritcitnib which is a JAK and I don't BUT the fibro does now give me bad headaches which is part of that. So don't suffer with them if really bad and it does not settle call the RA team and see if it can be changed. My team got me off them within 2 weeks as I was crawling so they wont be surprised!

[Vixen2]

Hey Paul. Welcome to our ‘unwanted’ club. I don’t want to be a member. But the people on here are very nice. I’m not a regular. But it’s comforting to come on here sometimes. We all know how frustrating chronic, longterm conditions can be. I’ve had RA since i was 21. (50 now). I also have 2 serious eye conditions, Iritis & Glaucoma. I have Infliximab infusions every 6 weeks at UCH & millions of outpatient appointments at Moorfields Eye Hospital. For the last yr i’ve been getting really, really, really dry eyes & mouth. I was tested for SS. They’ve told me 1 of my salivary glands are narrow. But they don’t think i have it. They’re suggesting it’s the bloody menopause. I still know how frustrating it is. I love to sing. But the dryness of my mouth is affecting my voice. Very depressing. I sometimes choke on food. Quite scary. I’ve bought fake saliva. (Very expensive. Nearly £10 in superdrug!) My gp’s given me sugarfree sweets, fake tears too. I know i haven’t been diagnosed with SS. But i think we’ve all got enough health crap to deal with. All i can say is. Don’t feel guilty about ‘pestering’ your gp. That’s their job. If they’re good. They will understand. Our health is so important. If you don’t feel as ‘ok’ as you can be. Life can be very depressing. Hope you sort things out. In the meantime. You can come on here. Day or night. Good luck x

[Hidden in reply to Vixen2]

Sore dry mouth vixen has been a real trial for years for me . Recently told to use oralieve by my hygienist. She works with cancer patients they use this for dry sore mouth relief. Game changer for my especially the mouthwash . This is available on prescription too. I really recommend.

[Vixen2 in reply to Hidden]

Hey. Thanks for the mouthwash tip. I’ll defo give that a go. Maybe Paul could too. I wake up every single sodding day with the dry eyes & mouth. Sometimes i can hardly open my eyes. I’ve had so many serious problems with my eyes. So many injections in them & operations on them. The body is a complicated machine. Very frustrating. But thanks J1707! I’m seeing my gp today. I’ll ask about the mouthwash. X

[Libluce8]

My husband was diagnosed with RA in 2009 - after ventures with various dmards and no improvement but lots of side effects he came off them all just over 2 years ago - he’d started, similar to yourself with dry eyes/mouth, extreme fatigue and vague aches and pains - diagnosed in 2000 with paladromic rheumatism - then full blown RA - then last year told whilst he has positive RA factor the RA not active and Dmards not recommended - during this time he saw individual specialists for his aches, eyes, skin and mouth dryness/croaking voice etc - finally in January this year a doctor (not his RA specialist) has put it all together and he was diagnosed Sjogerns syndrome - he has steroid eye drops and told he needs low dose steroids orally - he was on hydroclorachrine when his RA first diagnosed but came out in blisters on his skin and in his mouth so thats a no go - would be interested to see how you progress as it seems to be a horrible disease that is slow to diagnose yet causes so much pain and distress

[janmary]

Welcome to the club. I was diagnosed with Rheumatoid disease about 11 years ago. Never been on Lefl , and couldn’t tolerate Hydroxy- so can’t advise about those- will just say that you need to keep in touch with the rheum team - they will be used to jiggling drug regimes, but can’t find the right ones for you if they don’t have your feedback .

[smilelines]

If you continue with both headaches and nausea then I would call before suffering too long. Maybe they will drop one of the medications so you can figure out which one or both are giving you problems. Certainly call if either symptom gets worse. I am very sorry that you are having such a bad time of it. Hearts.

[Hidden]

Hi Paul welcome to our family. So sorry you have had to join us . Your story unfortunately is a common one. I couldn’t get on with Hydroxychloroqine or sulfasalazine had anaphylaxis with both. If your struggling contact your Doctor he needs to know the good and bad if he can help.

I’ve tried so many things for dry mouth and recently advised by my hygienist to use oralieve. She works with cancer patients and they use this fir side effects of treatment. This has been a game changer for me. Love the mouthwash / toothpaste and spray. Keep in touch no questions too silly we have all been there.

[AKA13]

I suffered with sickness for many years when I started on medication for RA. I was taking Lansoprazole to cope. I started to take probiotics from Holland & Barrett and cut out on meat. My condition improved so much within weeks and after a couple of months I no longer needed medication for sickness. There is so much to say for having good gut health and I am sure the medications we take for RA take a toll on our digestive track. Just a suggestion!

[Bagpuss2021]

Hi Paul, There are lots of medications available to people with RA. I have lost count on how many I have tried. you have to keep going until you find the one that is right for you. Speak to your RA team and ask to try something else, and keep going until you find the right one for you. Good Luck.

[puffyface]

Hi Paul, sorry to read that you’ve been feeling bad for so long. Hopefully they have the right diagnosis and can now help. I have Sjögren’s and take hydroxychloroqinine. I have been on it for years now, but I definitely remember feeling nauseous when I started. I now take a probiotic. Not for long though I would suggest taking meds apart and the hydroxy with or after food until you get used to it. Sjögren’s is systemic and so can affect every system…it’s why we just all over and it’s difficult to diagnose. I use hylo tears and hylo forte eye drops….I don’t like the thicker ones because they make my eyes blurry. These help a lot. If they get very bad (and you can deal with the stinging) Ikevos (might have spelt that wrong) drops are great. I use Salisax sugar free pastilles for dry mouth and biotene mouth gel. I also always have water with me and chew a lot of sugar free gum…it helps with saliva production. The hydroxy should help with the need to ‘lie on the floor I’m so tired’ feeling. Other aches and pains might be RA…but can come from Sjögrens too in muscle and joint aches or peripheral neuropathy. Keep an eye on it, watch your symptoms…and be kind to yourself.

[oldtimer2]

You need to get back to the rheumy team and let them know about your side effects.

Do you have a telephone number for a specialist rheumatology nurse? The usual procedure seems to be (for most of us) to ring and leave a short message about your problems on an answerphone with your name, date of birth and contact number. Some people have an email contact.

[ABwn]

I take Hydroxychloroquine (as well as mtx) and found that there is only one lab/distributor that I can take without it upsetting my stomach. Let your doctor know that you are having an adverse affect. Good luck.

[Cal48]

Dry eyes get gp to prescribe Thealoz duo for day, Xailin gel for night.Boots dry mouth spray tastes better than most others.

I’m on methotrexate and Lefluamide. Seems to be ok except for tummy occasionally.

I have had RA for many years with Sjogrens dry mouth and eyes.

Hope this helps