Author Topic: Anyone else with debilitating dryness  (Read 759 times)

Way2dry

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Anyone else with debilitating dryness
« on: April 12, 2021, 07:38:48 AM »
Since I was diagnosed in 2013 my symptoms were only dryness which I?ve been able to manage.  After my COVID shot, my dryness went off the charts.  No tears or saliva.  I was on a prednisone burst but it did nothing for me.  I?m so miserable I can?t sleep or get comfortable for very long.   Does anyone else have this?  How do you manage/cope?
Primary Sjogren's dx'd 2013 on symptoms. Blood tests neg. Breast cancer 2013. Dry everything. Tinnitus, GERD,Tamoxifen, vit d, Restasis & Evoxac stopped working, COQ10, fish oil

meirish

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Re: Anyone else with debilitating dryness
« Reply #1 on: April 12, 2021, 03:21:56 PM »
I am so sorry that this has happened. I am wondering if you are using pilocarpine or exotic to help with your mouth dryness. How about using a personal humidifier by your chair and bed to help your nose, mouth and airway to be more moist. Having the air more humid also helps the skin be less dry.

There are a lot of products at the pharmacy for dry mouth and nose, gels, etc plus skin. I don't use much for my nose but my skin is really bad now and I use Cetaphil moisturizing cream. This is water based and just seems to soak in and make the skin feel better on hands, feet and rest of body including the face. The oil based lotions and creams just don't work as well for me. Just sort of sit on the skin and have to wipe some of it off so you can do your ordinary living.

I have worn a paper surgical mask like we are wearing now for the pandemic. I wear this at night a lot as it helps to hold some of the moisture in and I don't dry out as fast. I leave it a little lose so that I can breath good but still have a little bit of moisture buildup that I breath out. I have done this for years. Some of the things we come up with are out of desperation and we figure things out that work for us.

I also have used wet cheesecloth for years. Since I was a kid as my mother showed me this.I am 78 years old now. I buy the cheesecloth wither by the yard at fabric stores or in packages that have a few yards. Keep it stored where it stays clean and cut off about a foot or so. Place it in a clean bowl and pour distilled water on it. I try to boil my water cause these days who knows about any of the water. Anyway, get the cloth wet and wring it out some so it is damp and just a little sloppy. Fold it so that you are comfortable with the way it lies over your nose and mouth. Breathing through this is just wonderful as it cools and moistens the nose and airways and lungs. You can fall asleep doing this as you become so much more comfortable.

I use the cheese cloth a few days or so...just depends and then get a clean piece. Try to keep things clean. Also, I have a Hunter personal humidifier that uses an empty water bottle. You empty out a water bottle around 15-20 oz and fill it with boiled distilled water. This humidifier is great. I haven't seen them in Menards lately but  do think that searching the web will result in finding some sort of good set up that works. Menards and some pharmacies also carry these smaller personal humidifiers and they are so much easier to clean and don't get your walls and furniture wet.

I would suspect that you are having an autoimmune response to your vaccination...seems like those of us with autoimmune disease have bodies that rebel over just about everything. I have been sleeping a lot and wonder if this is from the vaccine that I got on March 4th. Luckily I don't have to go to work.

Also, in the search line on this site put ins some terms related to dealing with dryness issues....or what are some OTC ways of treating dryness. I have been on this site for over 10 years and there is a lot of info on there that is available if one does a search. Another thing I would do it do a search on internet for inflammatory foods. There are some foods that seem to kick up inflammatory reactions and in some people eliminating them from diets can improve symptoms. Everything and anything is worth a try.

I have to add that I also have myasthenia gravis besides SJogrens, hashimotos, bullous pemphigoid and autoimmune hearing loss and have been on IVIG since 2006. I get a big dose monthly all these years and I have to say that my sjogrens doesn't seem to respond to this treatment as it gets worse as the years go by. However, I will never know just how bad it would have been without the IVIG.

Have you been put on Hydroxychloroquin? This dry really does help one to feel better. I helps aches and pains and seems to work on receiving inflammatory reactions in the body. It is the Gold standard for treating Sjogrens, Lupus and  Rheumatoid arthritis and is usually the first med given. It helps but some people with these diseases have to go on to the stronger meds as time goes on. Take care and good luck. This was long!!!meirish

Way2dry

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Re: Anyone else with debilitating dryness
« Reply #2 on: April 13, 2021, 05:16:20 AM »
Thank you, Irish, for your suggestions and kind words.  I think I?m having a very bad flare.  I feel generally weak and miserable.  My Sjogrens is out of control as I?m not on anything for it.  I can?t see a rheumatologist until Sept. 
Primary Sjogren's dx'd 2013 on symptoms. Blood tests neg. Breast cancer 2013. Dry everything. Tinnitus, GERD,Tamoxifen, vit d, Restasis & Evoxac stopped working, COQ10, fish oil

Floridalady

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Re: Anyone else with debilitating dryness
« Reply #3 on: April 13, 2021, 09:40:10 AM »
I could not get by without Evoxac three times a day. The longer you are on it the better it works. I use Restasis for my eyes.

Hope your flare subsides soon.

Anna

sixty

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Re: Anyone else with debilitating dryness
« Reply #4 on: April 13, 2021, 06:24:05 PM »
I have tried evoxac and one other one, but they make me sweat so much and I hate that.  I think eventually I may need to use them regardless because I just get worse and worse.

meirish

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Re: Anyone else with debilitating dryness
« Reply #5 on: April 13, 2021, 11:16:06 PM »
sixty, I sweat just terrible on the pilocarpine so I quit it for a few days. I was on 10 mgm tabs and restarted it with 2.5 mgm and after a week or so went to 5 mgm. I would cut the pills in pieces. I was able to get along with the 5 mgm...still sweat some but not like when on the 5 mgm. I eventually had to quit that pill as I had to take Mestinon for the muscle weakness with my myasthenia graves autoimmune disease. The pills didn't go well together so the mestinon was the one I needed to take the most.

way2dry, Is there any way that your family doctor or interest could order the pilocarpine for your dryness in mouth. I would think that he or an ENT could order this for you as it is given for dry mouth related to dry mouth syndrome unrelated to autoimmune disease. Just a thought. Take care all. meirish

Way2dry

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Re: Anyone else with debilitating dryness
« Reply #6 on: April 14, 2021, 09:22:28 AM »
Anna, thanks.  I hope my flare subsides soon too.  I?ve never experienced anything this bad before and it?s been going on for over 2 months.  I take Evoxac 3 times a day and it helps but not for long.  I was on Restasis and it worked great until this flare.  My eye dr. said to try it 5-6 times a day.  It didn?t help and seemed to make my eyes drier and achy.

Sixty, sorry to hear your mouth is getting worse.  Evoxac makes me sweat too but it does give me a little relief.
Primary Sjogren's dx'd 2013 on symptoms. Blood tests neg. Breast cancer 2013. Dry everything. Tinnitus, GERD,Tamoxifen, vit d, Restasis & Evoxac stopped working, COQ10, fish oil

Floridalady

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Re: Anyone else with debilitating dryness
« Reply #7 on: April 14, 2021, 05:32:47 PM »
Interestingly, I have been on Evoxac for fourteen years and I seldom sweat anymore. I did profusely in the beginning but could not swallow food without it.

Anna

meirish

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Re: Anyone else with debilitating dryness
« Reply #8 on: April 14, 2021, 09:43:25 PM »
I would think that using Restasis 2 times a day would be something that would stay the same. Seems like they would really dry out the eyes. I know that many eye doctors use steroid eye drops for a couple of weeks and then have people start with  the regular preservative free eye drops to soothe the eyes and then do the restates drops 10 minutes later. Then about 10-15 minutes after the restates do the preservative free OTC eye drops again.

Another thing that eye docs will tell people to do is to keep the restates in the fridge and then let it warm a bit prior to putting it in the eyes. My eye doc says it helps keep the burning to a minimum. We can't use steroid eye drops for a long time as it can cause damage to the eyes with long term use. Using the steroids for two weeks helps to decrease the inflammation in the eyes and then it is easier to get back into the regime using the over the counter eye drops before and after.

There are a lot of ways that people have come up with to work with the restates. It is also wise to have more frequent eye exams when they are so dry so that the doc can watch for other issues that could occur. Good luck and hope things get better.
meirish
« Last Edit: April 14, 2021, 09:45:43 PM by meirish »

Kathy57

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Re: Anyone else with debilitating dryness
« Reply #9 on: April 15, 2021, 11:44:06 PM »
Way2dry,

I?m so sorry to hear about your awful flare😱. I can tell you that I feel I have been where you are at.  It was absolutely awful 😢. This was before I had a diagnoses and treatment and also at the beginning of my diagnoses and treatment.  It took a long time for the Plaquinil to really kick in and Pilocarpine just didn?t cut it for me.

I switched to Evoxac which was better but still only lasted about 2 to three hours and at the maximum dose.  My terrible issue was sleep.  I was so miserable that I could not rest and everything just got worse from there.  My anxiety was off the wall! 

Luckily my doctor took pity on me and gave me a scrip for Ambien and also a temporary scrip for Ativan.  I found if I could just get a short nap in ( thank you Ativan), that I had a greater chance of getting a few hours of sleep with the Ambien.  I felt so much better just getting a few hours of sleep/ rest. 

It took months for me to feel improvement but I had a lot of  GI symptoms, and really had to build up to just being able to take my meds (Plaquinil, Evoxac, and antidepressant), at the rate and dosage I was supposed to.

I pray you feel better soon.  Be very kind to yourself.  You deserve it! 

Let us know how you are doing.

Kathy
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

Way2dry

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Re: Anyone else with debilitating dryness
« Reply #10 on: April 16, 2021, 02:16:59 PM »
Meirish -  Thank you for the suggestions.  I?ll give them a try.  My eye doctor wants to get this under control and has even mentioned a product 10x stronger tha Restasis.   I can?t imagine that!

Kathy57 - Thank you for your response and kind words.  Your experience sounds exactly like what I?m going through. Did you have dry eyes, too?  I can?t see a rheumatologist until Sept. and it?s hard to get in sooner because my tests are normal.  I?m so glad to hear you?re doing better now.  Sounds like you had a rough time, too.

Primary Sjogren's dx'd 2013 on symptoms. Blood tests neg. Breast cancer 2013. Dry everything. Tinnitus, GERD,Tamoxifen, vit d, Restasis & Evoxac stopped working, COQ10, fish oil

Kathy57

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Re: Anyone else with debilitating dryness
« Reply #11 on: April 16, 2021, 06:06:34 PM »
Way 2 dry,

I have dry eyes too, but my dry mouth, sinuses, and respiratory tract, have always been much worse for me than my eyes.  I can get by with Genteal or Systane eye gel.  I also use eye gel drops pretty frequently and warm moist compresses to my eyes.   I really rely on humidified air because it is so much more comfortable!  I use wraparound sunglasses in the car and outside even when it is cloudy and raining. 

I also use saline sinus rinse and I have a prescription steroid sinus rinse that I use daily and sometimes twice per day.  I feel lucky in that my eyes don?t seem to be as dry as others who post here. 

I know what it is like to count the days/ weeks before you can see a rheumatologist.  I was lucky to get in sooner because there was an unexpected cancellation and the office nurse called me and said I could come in early.  I did and my grown daughter went with me.  I was so lucky to get my Rheumatologist!  But now he is thinking of retiring and has had trouble trying to get someone to take over his practice.

Don?t give up because things will get better.  Please let us know how you are doing.  You are not alone.

Kathy
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

meirish

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Re: Anyone else with debilitating dryness
« Reply #12 on: April 18, 2021, 02:11:01 PM »
kathy57, That is a good idea you mentioned about getting in early to a doctor. I try to ask my doctors to put me on a list incase anyone cancels so they will call me if there is a chance of getting in early. I also remember times a few years ago when I had such dry eyes and lungs that I had to stay in much of the time and noticed that even going out to the lake with my sons family was miserable. I learned to sit with my back to the lake because even with sunglasses on I would seem to get almost a sunburn of my eyes from the glare off the lake. It pays to get a really good pair of sunglasses.

Also, I forgot to mention the night time gels that come in a tube for the eyes. They are so darn speedy but they do seem to give relief and can always apply more during the night as they don't have any ingredients that are drying. I always read everything I put anyplace on my body anymore as so most of you I am sure. WE get a little gun shy, so to speak when we have so many issues to deal with. Take care and hang in there cause it seems these issues do pass eventually. Of course, we have the dryness of the heat in the winter and then the dryness from the AC in the summer. Always something isn't it. meirish

morganjen

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Re: Anyone else with debilitating dryness
« Reply #13 on: May 08, 2021, 02:24:19 PM »
Meirish -  Thank you for the suggestions.  I?ll give them a try.  My eye doctor wants to get this under control and has even mentioned a product 10x stronger tha Restasis.   I can?t imagine that!

Kathy57 - Thank you for your response and kind words.  Your experience sounds exactly like what I?m going through. Did you have dry eyes, too?  I can?t see a rheumatologist until Sept. and it?s hard to get in sooner because my tests are normal.  I?m so glad to hear you?re doing better now.  Sounds like you had a rough time, too.
What is the name of the medication that your doctor said that was 10x stronger than Restasis?

meirish

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Re: Anyone else with debilitating dryness
« Reply #14 on: May 09, 2021, 12:15:08 AM »
I guess I would be very hesitant about getting any drug that was 10 times stronger as I would be concerned that they could burn the eyes and do irreparable harm. Have you considered getting a second opinion. I know from experience that there can be good and less experienced ophthalmologists...or ones with different experiences and exposure to dealing with autoimmune diseases and the eyes.

There is always the possibility that you could have another co-existing eye condition that is making things worse. Also I had mentioned asking your family physcian about getting a prescription for Plaquenil to help with some of the inflammatory issues associated with the Sjogrens and might help the eyes also. This drug does help and it is rare that people have issues with their eyes from this drug. Reason being that the dose that sjogrens are given is much smaller than the dosage that malaria patients are given. Plaquenil has been given for over 50 years for malaria and was discovered to help people who had lupus or rheumatoid arthritis  when they were on the drug. Our eye dryness is caused by the inflammation that occurs in the mucus glands that keep our eyes lubricated. These glands become so inflamed and swollen that they can't produce or produce less lubricant for our eyes. Some people find some relief from the plaquenil for their eyes.

Plaquenil has been given for sjogrens patients for many years and is now the gold standard for sjogrens and usually the first drug that is given for our inflammation. I have been on it for 12 years or more and get my eyes checked yearly by my optomologist and just had them checked again by an ophthalmologist as I had cataract surgery. A retinal scan is done and is not hard to do at all. It tells how my retinas are related to the plaquinel and also related to my diabetes and I am in luck to have healthy retinas and blood vessels in my eyes.

Restasis is an eye drop that is the same as an oral medication that is an immune suppressant. I know it starts with a C and I have gone blank and can't think of the drugs name right now. I wonder if you could be having an untoward reaction to the Restasis Some people can't tolerate these drops. I wonder what would happen if your eye doc would stop the restates and give you some steroid drops for a 2 weeks or so. Steroid eye drops can't be taken long term as it can cause thinning of the tissues of the eye. It is a wonderful relief though when eyes are terribly dry and irritated. Good luck and keep us abreast of your findings as it would surely help others who suffer like you.  Thanks meirish