Another question oh wise people...
I have a cold virus happening, and my Sjogren's symptoms seem much better? Is it just because I'm so miserable otherwise, or does having a cold decrease the SJ symptoms? I'm very confused, and can't decide what the heck is going on...
I have seen a few people mention this too.That their symptoms seem to improve when they have a flu or a cold.I haven't really experienced it myself, as far as I can remember that is.My memory is not the greatest!:) But curious to see what others have to say to this.Great topic!
catching a cold with all this ging on isl ike a walk in the park,, my sister has ne now and you swear shes at deaths door
I have the dry issues, so I hate having a cold.
It makes me soooo much more dry, my throat and nose blocks up,
and I cannot sleep at all, as I feel I can't breathe,.. so the less colds I have the better I like it!
Dolly
Hi:
Potentially it could be when you have a cold, your immune system gets diverted to fight the cold, instead of fight your own mucous membranes. Does that make sense?
My autoimmune symptoms do not seem to decrease when I catch a cold. I take mega doses of Vit. D, Vit C, L-Lysine and Zinc lozenges to fight the cold. Seems to work for me.
pegasus
Hi,
I've found the same thing. Whenever I'm sick my dry eyes feel better. I'm not sure whether its my immune system off fighting at another campus or that I feel so miserable with whatever infection I'm fighting that i forget my eyes!
Chelle
My eyes don't feel as dry, and I don't hurt as badly. The rest of me feels pretty rotten...I probably don't hurt as bad, because I'm a total vegetable.
CHAPTER OF SJOGREN'S YEARS AND HOW I HAVE LIVED AND LEARNED SOME POSSIBLE HELPFUL TIPS FOR YOU...
Well All, The time of this post should indicate my immune system is screwed... 2:30 a.m. and I went to bed at 11 p.m.
Decided to check board as have been preoccupied with doing what I can to help hubby get ready to install new carpet in his bedroom and mine.
If you have problem reading long post, please free free to 'fast forward' As times flies at 67,I learned by trial and error to lessen the affects of cold symptoms.
He was kind enough to paint my room... which to sleep on couch one night nearly did my back in. Then floor next night and neck and shoulders joined in. We have been working to get all the furniture moved in my room. Thank goodness we have had nice weather and my double garage has accommodated all my 'stuff' as hubby refers to it.
Started having congested sinus and a nasal passage one at a time a month ago. GOT OUT MY TRUSTY GUAIFENESIN and took up to 1200 mg a day plus using Nettie Bottle first thing in morning and at least an hour before retiring as recommended. Had to use some Neosynphine to open closed side of nasal passage or Nettie Bottle Rinse did not get to sinus areas.(deviated septum)
Second week hubby finished painting room and we left my outside door open all day and fans running and seemed to alleviate smell. Moved my bed and two nightstands back in with humidifier and all my music and white sounds,little pillows, cold packs and my Sleep Comfort Mattress? Have adjusted it several times lately to get comfy. Tempur-pedic replaced my small neck pillow as it was breaking apart and it had a 3-year guarantee. To keep what little moisture I get from pilocarpine (Salagen) moving on nights when mucus is really thick and no moisture, hubby puts 4" blocks under head of bed. Helps keeps me from having the chocking? sensation. Though shifts lower back and can only do a couple of nights then back down! then up! Vicious cycle!
Had began to think since I had only seen clear discharge from sinuses that it began to feel like last year's bout that ended up being bronchitis, lung involvement and finally, which had never experienced, wheezing with asthma! Took 40 + days of Biaxin 500 mg. x 2 a day and it with inhalers and much other "homey" stuff, I got better after 4 months.
Am trying to head this off this year!
Will call GP tomorrow and go Friday to get her thoughts on issue. Biaxin has been taken three times in the past to clear up lungs, etc. First time, ended up on O2 for over 2 yrs. Live and learn.
Second time waited through Thanksgiving and just before Xmas of 22nd called and GP RX 1st round of 14 days Biaxin, 2 wks. Later 2 round and inhaler for Synibicort (Bronchitis) and 3rd round of 14 days, inhaler for asthmas to be used 2 puffs twice daily as was with S.
Finally, in mid April I felt better and began to be able to walk twice around the outside of our home. Went back to Wellness Ctr. and climbed what seemed a mountain to get to feeling well enough to drive and go do one errand a day.
THIRD TIME? Am not pleased we have ended up removing and installing new carpet but carpet had already been ordered and Lowe?s is tired of storing it. So, to end my rambling of an hour, and the installer will be here in 5 hours.
WHAT HURTS MOST? Ended up calling PT and he worked on my back, shoulders and 'flossed' the sciatica nerve. Went to Ortho Sports Med. MD last week and started Halagen shots on R&L knees! Thought I could get by without DepMedrol shots but went back today and got shot in both knees! Now I'm wired and sleep will not be mine until after carpet installers come at 9 a.m. this morning. Took my 2 tablets .50 Zanax. Helped alleviate most of pain.
Hubby and I need to move my bed and two nightstands and all my belongings before installers come. He moved all his bedroom items today and stored them on his screened-porch and is sleeping in basement with the three kitties. Sitting here in the garage and expressing myself has relieved a tremendous load of stress that would not free my mind up for sleep.
If you made it this far in reading my posts about heading of a COLD that with Sjogren?s doesn?t stop with just S-I-M-P-L-E COLD? SEEMS TO PROGRESS WHEN IT TIRES OF YOU CALLING IT JUST A COLD OR YOU "TAKE TO THE COUCH OR BED" AND DO NOT KEEPING MOVING AND "PLAYING A GAME OF CHESS" WITH THE SYMPTOMS!!
Best Wishes to Each of You this Winter... HANG IN THERE...LOL, Joy
I have not had a cold in YEARS, so I have no idea how AI symptoms will be impacted.
Well, my cold is going away, and my Sjogren's symptoms are coming back with a vengence...
I answered my own question I guess...LOL! ::)
Yes, it seems when I am sick my SS and fibro go away and then when better they seem to come back with a vengeance!!
Since having SJS, I don't get many colds. Used to get a couple of bad ones twice a year or so. Don't want to brag, but I rarely get the beast now. Lucy
I think my body kills off bugs right along with attacking itself. Right now all other 5 in my family have bad colds. For 2 days right at the beginning my only symptom was parotid gland swelling. It may have even been unrelated to the cold but it hurt to open my mouth...now the pain and swelling are gone and i have no cold symptoms while everyone else is really congested. I guessmy immune system is ramped up even on low dose prednisone. I am having a flare of arthritis, I guess that's the trade off.
Kerrikins
A couple of weeks ago I had something - I'm not sure if it was a cold since I had a low grade fever - that in and of itself was relatively mild, but my neurological pain was off the charts to the point that when my cat lightly brushed up against me it felt like a belt sander on my skin. I assume it was a case of my already overactive immune system going overboard trying to fight whatever it was I had.
I have been off work for 7 years now and today I think that I might be having some cold symptoms. I feel blah and have a headache in my left sinus. I have think mucus that is draining a lot. That is the key to my idea it is a cold. I always have terrible thick mucus, but it never drains like this. I am just laying around today and watching it snow off and on.
I do remember havaing a cold back in around 1998 or so cause it was such a doozy and then after that only infections.
I just finished 14 days of doxycycline and now am on biaxin one tab a day for 3 months. My ENT wants to try this as he says that the biaxin has the antibacterial effect plue anti-inflammatory effect. Time will tell. Do you remember that cruddy way you feel when you have a cold??? I have never had that feeling ever except with a cold. Irish ;D
I know my Sjs symptoms disappear when I am sick... have a killer cold right now and my sjs is in remission!!! there has to be something in that I think... get the immune system to focus on something else and control the sjogrens....
hello fellow sjogren's sufferers!
that's exactly the point! when we get a cold or the flu our autoimmune system is off fighting a "real" enemy not us!! this is a key! there is a basis to look into this phenomenon!! because it really happens and when i have talked to those who can open up dialogue with researchers they make sounds like they will do something but they won't because doctors and those that promote meds, powders and potions to alleviate our "symptoms" are in bed with pharmaceutical company's that make those drugs that they insist on throwing at us! and some of these drug (the ones that "work") come with all kinds of side effect including the propencity to develop Mad Cow Desease!!
we are the ones who have this desease! we need to be proactive and start our own movement to get trials done in this country. France, Italy and Canada are actively involved in clinical trials, while the Sjogren's Foundation can't give you any information on the subject, even when you ask them the question directly!!
some of my colds i do feel better but most of them i have found i end up worse than the common cold. Just this last "cold" i had i ended up with a breathing machine n 2 different med in it along with my regular inhalers n meds. it was awful but like some here i have been the only one that didn't get sick. i think it's how low ur immune system is at the time as to how it will affect you but thats my opinion I'm new to all this too. but i was sick from Thanksgiving till after Christmas too with the start of a common cold to continue to double ammonia. Dr's couldn't get it to stop progressing for awhile n i started to worrie. now i have no definite diagnosis from all my rumy , neuro n those kinda dr's but strokes, n a def ss-a n ana testing. n they all dismissed me so i dono what to do. i hope u find the answer cause it looks like this forum is my dr for a long time i give up. going off the meds they have me on as i wont b able to get another prescript im sure. last resort im doing is the Cleveland Clinic for the last try so wish me luck.
Maybe the immune system is diverted and targets the cold/flu virus and so our healthy tissues are not attacked and we feel better. (how sad is that? We feel good when we have a cold or flu!)
My theory is that for some unknown reason, the immune system activity drops suddenly and that allows the cold virus to take hold. You feel better because the immune system has calmed down and is functioning at a lower level of activity for a short time, not necessarily because you have a cold.
As for me, I haven't had a cold or flu for about 17 years. No virus can thrive in my dry airways. :P
Quote from: BonusMom on November 11, 2010, 07:22:56 AM
I have not had a cold in YEARS, so I have no idea how AI symptoms will be impacted.
-
Same here.
As this is my first post on this forum, I'd first like to say hello to all of you.
I was diagnosed with Sjögrens late September last year, on the basis of a lip biopsy. My GP referred me to a rheumy after blood tests he ran because I complained of a swollen and painful knuckle showed signs of some form rheumatoid disease. I did not have any other symptoms, but for some reason the rheumy suspected Sjögrens. It may have been because I was diagnosed with Hashimoto's thyroiditis in March of that same year.
The doctor who performed the lip biopsy said he did not think I would have Sjögrens, because I seemed to produce plenty saliva. Nonetheless, the lab tests did show signs of infiltration in the salivary glands and the rheumy concluded it was Sjögrens after all.
Now, why I am telling you all that is because I have actually had symptoms of a cold for months in a row, it must be at least half a year. My nose always feels slightly blocked and I have to blow it a few times a day. Yet, it is not as the normal colds that people get. These last a week or so and when at worst, really make you feel miserable. This is not the case with me.
It makes me wonder if my nose is not just irritated because of some Sjögrens antibodies attacking it. Could it be that I am in this very early Sjögren stage where the various glands are actually 'over-producing', rather than not functioning anymore at all? It would also explain why I produce much rather than little saliva.
From my 'thyroid experience' I know that the thyroid can sometimes initially produce way too many hormones, because of being attacked and infected by the antibodies, before finally slowing down and stop working competely. Perhaps this is also true for the glands affected by Sjögresns?
Does anyone have experience with this?
I guess I am looking to find out what I will be able to expect. I am told to be ill, to suffer from a disease, while I do not appear to be ill at all. I know I should appreciate that and be glad, but it is a bit strange to know something is wrong without knowing really what that is.
Looking forward to hearing more about your experiences.
This is sorta something I can't figure out. I seem to not get sick... Or I'm always so sick I can't tell when I am sick ;D I also suffer with constant constipation. Well, my son and husband almost two weeks ago came down with a bug and I have to admit it was the funniest thing to watch... Them both running to see who could make it to the bathroom first lol We have been busy working on the other house to move into and it's been COLD, Rainy and down right icky outside. Everyone, but me is sick or getting sick. Hubby was just at the ER we thought he had pneumonia. UGHH We're sitting there and of course me and my chapstick... and my cough... & must have my drink by my side at all times... the Dr says, sounds like your getting sick too lol Ummm nope I'm good this is normal :)
My hubby was actually told he had bronchitis and Stage 1 COPD while at the ER :( I always kiss him, he's always drinking from my glass etc. yet I do not get sick... So confused, unless my inside critters get to the sickness since their always working so hard on me :o
Welcome to Sjogrens World, Anne! I just joined not too long ago. It's actually kind of strange... because your symptoms sound almost exactly like mine. I also had the random swelling in my knuckles and fingers. I was also diagnosed because of a lip biopsy I had done, even though my mouth definitely produces some saliva! I don't have a lot of other symptoms either. How strange.
As for colds, I'm going on my third week of having this cold. It's not bronchitis, but my doctor gave me an antibiotic just in case. It's lingering in my throat and hasn't improved much. I give myself wicked headaches just coughing, and coughing, and coughing. There is so much crap in my throat!
Hello. Thanks for your reply. I figured there must be some people who, like me, have been diagnosed in an early stage, without too many symptoms. And like me, you are also young. Admitted, I am some ten years older, but still....
When have you started your Plaquenil treatment? And does it help you?
I initially started with 400mg a day, which rapidly helped me to get rid of my inflamed knuckle. After two months, my rheumy therefore decided to lower the dose to 200mg a day.
Now, only some vague symptoms remain vaguely present. I do feel tired, cannot concentrate (but always think it is just because I find my job boring), and I get brief pains in some of my joints every now and then.
Have you started the antibiotics already? And has it improved your situation?