Man, you are getting hit pretty hard right now. I hope you feel better very soon, your eyes clear up, and that you don't have glaucoma!! Get some rest and take care of your self.
Josh
Qadosh2him said:
Thank you Ethansmom
I'm in a medical hospital right now...this time for a severe asthma attack. Hoping maybe to go home on Monday or Tues making the visit one week long. I'm glad now that my Eye doc is on the 21st so I can be someone better from this illness, ;particularly the very heavy doses of IV steroids which =as they alwys do-=have make my eyes so blurry that they are useless. I hope that does not interfere with the test for glaucoma....blessings to you.
For the nose, even just plain saline spray can be really useful, and you may want to stash them in a few different spots- car, bedroom, etc. I pretty much always use it before bedtime.
Ethansmom said:
Hi Josh,
Thank you for the welcome! I was just diagnosed with SS in August but suspect I have had it for a while. I started with only the dry mouth. It seems to be picking up with the cold weather. I now have a dry nose and very dry eyes. I really don't cry that often. But it took me off guard when I had a very (what should have been) tearful moment only to produce little to nothing! It bothered me. But I guess it could be worse.
I will research the episode of House. What date was it on? I do like that show. As for the onion, I had very little of anything happen. My eyes just felt really uncomfortable.
I am so sorry you are in the hospital. The respiratory aspect of SS is the worst! My heart goes out to you. Know that I am praying for you.
Blessings,
Shari
Qadosh2him said:
Thank you Ethansmom
I'm in a medical hospital right now...this time for a severe asthma attack. Hoping maybe to go home on Monday or Tues making the visit one week long. I'm glad now that my Eye doc is on the 21st so I can be someone better from this illness, ;particularly the very heavy doses of IV steroids which =as they alwys do-=have make my eyes so blurry that they are useless. I hope that does not interfere with the test for glaucoma....blessings to you.
Ethansmom said:
I hope and pray you don't have glaucoma, my friend!! May all the tests be negative!
Qadosh2him said:
My doctor didn't do the test but he did comment and said my eyes are very dry. He did TONs of tests. He was quiet the whole time and at the end had a suspicion of glaucoma.Ihave to go back for one or two more tests to confirm this.
I am sorry you have been through so much. I appreciate that you are a wonderful advocate for yourself!! How do you stay optimistic with all of this as well as your MS? I am having a pity party and I just have Primary Sjogren's.
I was surprised about the lip biopsy too. I had a positive DUAL pattern ANA which is extremely rare. My initial doctor said she had never had a patient with that kind of result before so she repeated it. I also tested positive for the SSB. I have all the classic symptoms. I also have multi-system involvement. So why the biopsy? I guess just to get a complete confirmation. Yes, I still have a numb lip! Nobody told me about that one!! It feels totally strange.
I kind of feel like a bit of a lab rat with this whole thing. Since I have decided not to do Plaquenil, the doctor just put me in a coasting pattern until I see her in March. Not terribly reassuring. But she is brilliant. She just doesn't seem to have much compassion. In the mean time, the medical bills are really hitting. Yuck!
Thank you so much for providing me with all of this information!! Again, with being new to all of this, I sometimes wonder what is normal for Sjogren's and what is not. Sometimes I think there is no normal!
I hope you are able to find a doctor who is experienced and has great compassion!
Blessings my friend!
Kaz said:
Hi Shari, I am not a newby to specialists. Have been dealing with them all my life. It's just unfortunate I inherited this latest one as my one left. So I have to source out a better one in the hospital and that is what I am tryng to do. Yes, I also rejected to take Plaquinel and also Pilocarpine. It was mentioned to me many times over the last few years, even this specialist wanted me on one or the other or both. BUT they don't seem to understand that meds for Sj are bad for people with MS...
Plus I have extremely sensitive to many drugs. Have severe allergic reactions and severe sensitivity to others. So I very reluctant to add a drug like pilocarpine to the mix when it comes with very nasty adverse reactions when I am already dealing with a lot. Same with Plaquinel, there is a very good chance it will worsen my MS, so I choose to not take these. Somehow I think this was why this rhuematologist then decided I must not have Sj because I wouldn't take the meds... as it was at this point she got very aggressive with me.
Anyway, I have bigger things to worry about than her and will be transferring to someone else sometimes next year. I just have to suss out from the immunologist who is best. I have the name of one guy and saw him many years ago when he was the registrar. I found him good then and have thought I may transfer to him. But he is only young and I have multiple issues that I need someone who has experience (that's the whole problem with this current one - lack of experience in my opinion).
I am shocked they did a lip biopsy on you when you tested positive to SSB. Did they not run SSB to ensure the test was accurate, as one can have false positives, and false negatives in many blood tests - ANA being one... Do you have permanent numbing from the lip biopsy??
Yes, you will find the weather has a big bearing on moisture. The drier the weather (as in no humidity) the worse it will be. My joints are always really bad in winter and my oither Sj symptoms also bad. It is my worst time of year. Also have flares in summer when days are very dry, but love the humid weather (which most people loathe).
I am so sorry that everyone on this forum is going through so much, but it has been a blessing to me to learn so much from others.
Thank you for the information on House. I am going to watch it later tonight! ;)
As far as the eyes go, it is more of a problem with my left eye right now. The right is bad but not as much as the other. I just stocked up on all kinds of things to help with all the symptoms. Things that used to make my eyes tear don't work any more... even allergies! So ONE good thing out of this mess... LOL!
Thank you for the kind welcome!
Blessings,
Shari
joshedu said:
Shari,
It's quite common for people to have Sjogren's for years before being diagnosed. I had been sleeping with a cough drop every night for years to prevent my uvula from swelling painfully. Even a few hours of sleep would make my throat hurt. Then the eye problems started. I was showing signs for 10 yrs before my diagnosis. So, your in good company.
I can't remember when exactly when I saw it. I think it was last week. I did a search and it's from season 5 episode 5, called Lucky Thirteen.
Your response to the onion is very interesting. I thought they just made that part up for the show. I do know there are a lot of ways Sj can effect us. Glad to have you online with us.
Thank you for the information!! I will keep supplies readily available. It is amazing how some of the nose sprays are loaded with chemicals. Like you said, plain saline sprays, right?
Stoney said:
For the nose, even just plain saline spray can be really useful, and you may want to stash them in a few different spots- car, bedroom, etc. I pretty much always use it before bedtime.
Ethansmom said:
Hi Josh,
Thank you for the welcome! I was just diagnosed with SS in August but suspect I have had it for a while. I started with only the dry mouth. It seems to be picking up with the cold weather. I now have a dry nose and very dry eyes. I really don't cry that often. But it took me off guard when I had a very (what should have been) tearful moment only to produce little to nothing! It bothered me. But I guess it could be worse.
I will research the episode of House. What date was it on? I do like that show. As for the onion, I had very little of anything happen. My eyes just felt really uncomfortable.
I don't see anything anywhere called FESS Nasal gel...there is AYR which is saline plus Aloe. This one is available in a no drip veriion (which is the one shown. The plain saline was only $3,99 and there is also one by NeilMed , no drip, saline also and that one costs about $7.50. What do you suggest? is the no-drip feature woth doubling the price? It would seem it would probably eliminate wasted product if it is not all running straight out right away.
Have any of you used a Netti pot or one of the sinus flusihng squirt bottles to cleanse your sinuses? I found that if I flush my sinuses at the first sgn of sinus burning or discomfort then the symptoms of an impending infection are washed away. Is there any benefit to flushing more frequently ? Or will that just dry out my sinuses more? Do you people all have ENT's to take care of nostrils and swallowing issues? Have any of you had any swallow studies done? Do you think it wsa helpful if you did?
UGH ..sounds like that hurt a LOT. I'm sorry about that...How do you mouth breathe all night without spit?? My heart goes out to you.I sleep with a BiPAP and O2..and if I push my mask off accidentally and I mouth breath for awile,my tongue ends up feeling like a strap of shoe leather. NOT pleasant.llllllllllllllllllllllllllmklm
Kaz said:
I am mainly under a neurologist as I have MS and have more than just Sj swallowing issues. I have MS swallowing issues added to the mix, so not pretty...
I would use the sinue flushing except that I can't. I broke my nose in a fall (MS related) and the bone snapped off and now has rejoined sideway. My my septum is completely deviated and closed off. Need surgery to correct this. So can't use the pots as can't get anything up or out of one nostril. But I if I could I would use it regularly. Once I get my nose fixed that will definitely me my course of action ;-)
wow. I 'll bet that 30sec it took to fall down,must live high in your list of "do -overs" :)
Yes I have severe obstructive Sleep Apnea. I got it as a consequence of being on IV steroids for about two months in a row which treating a recalcitrant case of asthma....By the time that treatment was over, I was in a wheelchair, had damage to swallowing...and large trunk muscles. Had to be tied into the wheelchair as I didn't have the strength to hold myself vertical. I was in rehab in patient for about another 2 months ...when I left they told me I would never walk again. But I did it. I worked like as dog and got back on my feet...close to 3 years later. that was right before I got sick with PsA. I wonder if there is any kind of link between all that muscle damage and the autoimmune disesaes. Most likely they were independent because my mom was (is)also a sufferer of several RADs which handily got transferred to me. so likely it was just genetics...It COULD have chosen that time to emerge due to the stress my body was under...I don't know...all I know is its here now.
yes, I have had an MRI of the brain...but I'm not sure how long ago that was.I recall that the only ting they told me was that there were areas of the brain that have undergone atrophy...but that is likely from another cross diagnosis I would assume..although who knows...maybe a dead brain comes from this disease also. :P
I haven't used either spray so I can't speak to them.
But I do use the Ayr nasal gel. I use it twice a day and it makes a big difference. Obviously it only works as far as it is applied, but I can feel the relief instantly especially on my dryer days. It's a must before going to bed and using my nasal CPAP machine. I found it on Amazon and it's cheaper ($3.59) than in the local stores.
I haven't used either spray so I can't speak to them.
But I do use the Ayr nasal gel. I use it twice a day and it makes a big difference. It won't last all day, but I don't really want to carry it with me. Obviously it only works as far as it is applied, but I can feel the relief instantly especially on my dryer days. It's a must before going to bed and using my nasal CPAP machine. I found it on Amazon and it's cheaper ($3.59) than in the local stores.
My ENT wants me to use the Sinus wash everyday. Sometimes I just don't feel like doing it. I find I feel it helps the most when I'm sick or if I have a pesky nose sore.
It feels better to use luke warm water than cold. BUT it is very important to use bottle water as there is a parasite that is common in tap water and will not hurt you if you drink it (it just goes through the system). But if it gets in your nose it can move to the brain and cause big problems. But it's safe as long as you use bottled water.
So, I fill my bottle with water and the salt solution. Then fill the sink with hot water and put the bottle in it.
I perfer the bottle over the netti pot. The netti pot requires gravity to move the water. This does two things. First, is it takes a little longer as you can't control the speed by squeezing. Second, you have to learn the best position by trial and error. You have to lean over the sink and tilt your head and the pot so the water will flow. I have had water run down my chin, neck, and chest on several occasions. The bottle doesn't has this problem as you can just lean forward.
Josh
Qadosh2him said:
Have any of you used a Netti pot or one of the sinus flusihng squirt bottles to cleanse your sinuses? I found that if I flush my sinuses at the first sgn of sinus burning or discomfort then the symptoms of an impending infection are washed away. Is there any benefit to flushing more frequently ? Or will that just dry out my sinuses more? Do you people all have ENT's to take care of nostrils and swallowing issues? Have any of you had any swallow studies done? Do you think it wsa helpful if you did?
Try using pure petrolium jelly (like vaseline brand) to soften & keep moisture in the nasal skin. I use it every night as bedtime. You can use it more often until it heals but get it checked too. It really helps me!
Just had to add a little humor to the mix! Dryness, dryness everywhere & not a drop to drink! Hope & pray all goes well(didn't realize this was a pun until after I finished - the "well" part, as in well for water!)! Hang in there!
Only one very persistent sore problem, which seems to finally be healed.
I developed it during a 1 week stay in the hospital back in April of 2012, from the oxygen. It would seem to heal only to start bleeding again within a few days. I saw the ENT about 7 or 8 months ago. He said the dryness was preventing it from healing properly. I was doing the sinus wash daily, a daily RX spray for my sinus, and some moisturizing spray he gave me (until it ran out). Then I ended up switching to the Ayr gel.
I can't say exactly what made it finally heal but it's been a good month since I've had any problems with it. But really, a year and half really is a very long time for such a thing to heal. I was starting to really believe it was never going to heal.
Josh
Kaz said:
Josh, it is common to get ulcers of the nose with Sj, but if you have a persistent nasal sore you need to get that checked as they are not meant to be persistent. If they are ulcers they resolve of their own accord (slowly I have found), or you can definitely quicken the healing process (and help warden them off) by taking folic acid. This is what the specialist advised me and I have been doing this ever since and found it definitley healed them more quickly, now I take it every day and have not had a nasal mouth ulcer for a few months which is very unusual for me... Also heals mouth ulcers more quickly.
Just had to add a little humor to the mix! Dryness, dryness everywhere & not a drop to drink! Hope & pray all goes well(didn't realize this was a pun until after I finished - the "well" part, as in well for water!)! Hang in there!
I also have seriously dry eyes & plugs. One kept popping out, so finally had lower ducts cauterized. I see my terrific ophthamologist every 6 months to check retinas because I take Plaquenil. She'd told me to use Systane Gel (OTC) drops during the day and Systane Ointment at bedtime. I make sure to use the ointment after I've finished reading in bed because it makes vision blurry - but it does the job - eyes feel great, When she was off one day I had to be seen by her Jr. associate for 'grit' in eye, who told me to only use Systane Ultra...next time I saw her, she said that I shouldn't use anything but the Gel because that has an ingredient that keeps eyes from drying out faster. That is especially important when the weather is windy (hot or cold).
I had a problem for a few months with what I thought was some 'grit' in inner corner of one eye...like a tiny pebble there which sometimes I could pick out with my finger, but the next day it would be back again. When I had seen her Jr. associate that one time about this I had asked him what it was - he wouldn't answer that question and just kept repeating "just leave it alone"...not any help at all. He also never looked at my face - never made 'eye contact' with me, only looked in my one eye. Needs to work on his people skills, which they can't teach in MD school.
So when she returned from vacation I went to see her and she said that it was the result of the upper glands near the nose being too dry where they empty into the eye and getting dried out at the bottom. She said to remove the little grit use a warm wet cloth there for a while and to keep it lubricated better with the Systane Gel, and they'd go away and not return. But if I let my eyes get too dry, those ducts will dry out at the bottom, and the fluid in them will turn to grit again. End of problem. I now swear by Systane Gel.
