How long do Sjogrens flares usually last . My glands have gone up again my stomach is upset and I ache all over. When I was first diagnosed I had a flare that lasted for many months , I've had rituximab infusion and I've improved but I had a couple of 4-5 day episodes of nausea pains and exhaustion in the 8 weeks following treatment. I know everyone is effected differently but I would be keen to know if anyone else is effected in same way and are these mini flares ????

16 Replies

  • I would like to know the same thing! I've been feeling so poorly the last 2 weeks... Nausea, stomach pain, headaches, achy shoulders and upper back, fatigue. It came upon suddenly as I was going GREAT all of April and part of May. I was back into a fitness routine (cardio, core and resistance) and that all just crashed one day and I couldn't do it.

    I have SLE (lupus) on addition to Sjogrens as well as hypothyroidism. Pinpointing the cause of my symptoms therefore is very tricky. After reading your symptoms, I now think it is a Sjogrens flate as my eyes/vision has been bothersome, and last week, my upper palate on my right side was swollen and sore and it extended down into my throat. That has gotten better thankfully.

    I've not had these types of symptoms lingering for so long before now. I have no appetite yet at times, I feel like I am starving.

    Anyone out there have a similar experience and can offer help?

  • It's a weird condition but we all seem to have similar probelms . It would be great if could get help 🤔

  • Hi, I posted here a couple of months ago with the same question. I had a really bad flare with the same symptoms as you Weathervane, and it took me two rounds of steroids to get past it. That was two months ago and since then I've had mini flares where my lymph nodes swell and body aches all over for a day or two and then I'm back to normal for a week or so. I searched a lot of post and sites trying to figure out if there was an average flare time or certain triggers but there doesn't seem to be. My Dr told me that the upset stomach I had could have been a stomach virus and that triggers the immune system to flare. I don't usually have upset stomach with mine. Each time I flare I hurt in a different place so it's really hard to tell if it's just the Sjogren's or truly something else I should worry about.

  • Hi there, I get the same message when I went to doc, basically they did not know- GP had no experience of Sjogrens or the treatment. Does it all just vary from person to person? It would be great to have a definite answer🙄

  • I think it all varies and it's random how often or how bad they get too. I'm a bit of control freak so not knowing just kills me. LOL At this point I'd just like to know if the things are happening to me a typical symptom of Sjogren's. It's a little more comforting to know others have the same issue and have advice on how to get through it.

  • Hi wsjkcj1

    I'm back to the rheumatologist in August with a list of question!! If I get any definite answers I will let you know!!! If you get any please let me know👍👍

  • you've got a deal! :) I don't go till September though but I'm making my list now! Good luck.

  • Need to put in my diary- the way my head works I'll have forgot by then LOL

  • Hi Weathervane I have found I have been feeling very clammy and the sweating has been ridiculous even when the weather is cold I also feel really tired and can't seem to concentrate on any thing I also feel very down this seems to last a couple of days every week is anyone else experienced this it's driving me mad.

  • Hi ladyjay

    I had something similar in the first 8 weeks after rituximab along with nausea and weakness. This has settled down a bit now and have felt good bit better the last 4 weeks. I mainly get the clammy hot feeling at night now, can wake me up at times. Im beyond the change so cant put it down to that!!was ment to be with rheumy this week but has been changed to end of september now. Im keeping a food diary as i think somethings make it worse so no coffee or spicey food at moment. I will have a list to discuss with the doc when i see her😀😀

  • Hi weathervane I have been thinking about doing a food diary as well just to see if certain things effect me. Keep me informed if you find anything out regarding food diary and I will you maybe between the two of us we can help make life a bit better for each other. Hope everything goes ok with your appointment in September .

    It's really nice catching up with you take care

  • Only prob with a food diary is remembering to do it!!! Keep it by bed now and find thats a bit better😀

  • My flare seems to have finally subsided and I am feeling more human each day. This round of symptoms were so perplexing to me but I now truly believe it was my first Sjogren's flare. I've definitely have had other flare times but they were different and I suspect they were due to lupus. Perhaps as time goes on I will get better at figuring out the triggers so that I can do my best to prevent such an awful experience as these last 2 weeks. I'm tracking symptoms in a log which should help.

  • Hi milkwoman

    Keeping a log is a great idea, I have a note of some of the episodes which may have been flares but haven't logged the duration. I hope you make a good recovery from this one 🙂

  • If I didn't keep a log, I wouldn't remember any of it! Damn this brain fog!

    Thanks! I hope so too!

  • SS and how it behaves in individuals is a mystery sometimes. I have been taking the Mannatec products of Ambratose and Plus for 9 years which has given me a better quality of life all round. Flares are short lived as are fatigue patches. Mannatec is a natural product which helps keep cells healthier which in turn helps your whole body function better. It is suitable to apply to any condition and doesn't interfere with any medication that is being taken. In fact over time you can wean yourself off a lot of the medication. I too have hypothyroidism which I have to have the pure extract not the orthodox medication and it presents a problem in that it has to be taken on an empty stomach. An elderly wise Dr once told me that I would have to be my own Dr often and try to separate the fatigue flares and the thyroid fatigue so that I don't over medicate with the thyroid stuff as after all it is a hormone. Since experimenting with this I am taking less thyroid stuff and feel much better. For nausea I take Ginger capsules or chew chewing gum to get more saliva down into my system. Both help and its a better thing the ginger being a natural product. Maybe something for you to try. Good Luck.

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