I was diagnosed with Lupus and Sjogren's in 2009, but did not begin treatment until 2014 (long story). I sort of ignored the Sjogren's diagnosis because I didn't understand it. This spring, my friends mother did from Sjogren's and it really freaked me out. I had no idea that Sjogrens could be fatal! Also, the symptoms are so similar to Lupus that I have a hard time knowing which illness is flaring up.
Hi,
So sorry about your mom. I wanted to share that I had a close friend die from RA. I have RA and Sjogrens. However the reason she died were the treatments they gave many years ago. She had gold injections and very high doses of prednisone which destroyed her lungs.
Happy you are seeking treatment now for yourself. They don’t know exactly what the cause of our diseases but treatments are better and less harmful now.
This is a safe place to share your feelings.
Thank you for sharing I too sometimes fear new treatments myself.
My prayers are with you and all that deal with these autoimmune disorders
Sorry to hear about your friend's mom. The complications from any AI can be tough. I know that a number of people here have more than one so hopefully they may be able to chime in about distinguishing but the fact is, there may be times that you can't. I'm glad to hear you are on a treatment path yourself too. Hopefully will make your symptoms more manageable over all.
I have Sjogrens and Hashimoto Thyroiditis, Alopecia Areata, Peripheral neuropathy and Parkinson's. Yes the symptoms do overlap so it is hard to know what is causing it but it really doesn't matter because they just treat the symptom anyway. I take Plaquenil for the Sjogrens and I don't know what it is suppose to do but I don't think it is doing anything. I go to Reumatologist tomorrow and will ask. I started having floaters in my eyes and flashes of light so I had them checked and Opthmalogist said the fluid in my eye has dried up what I see are the dried up pieces of the fluid and it happens as you ageand I am 64. Also I am now allergic to the sun and when I go out in the sun I start itching really bad and it drive me crazy until I put clalmine lotion on it or take a cool shower. I was told Sjogrens is not fatal but can cause other diseases or problems worse etc which could make those cause death which to me is all the same. Sjogrens is causing me to lose my teeth so I only have front teeth now and cant wear dentures because of the dryness. Medicare does not cover inplants so if I lose my front teeth I will be stuck with just gums and eating pureed food. The Ins needs to change. Autoimmune diseases are no joke.
Dear Judy (hope it's your name),
I've had all of the above and then some. Stopped counting at 5. However, consider that some of the symptoms can be "side effects of the medications or the lack of a useful med."
I take Pilocarpine for my dry mouth--5/5 mg doses every day and it really helps also lots of sugarless gum.
Predisone has ruined my bones
My dental situation is moving towards total extraction (when you turn 65 you will be eligible for medicare). Dentures are not the end of the word you can eat with them. I joined and HMO and most of them offer quasi dental care at an extended price which also includes hearing and glasses.
I must be Vampira's cousin. I don't come out of the house until 3-4 p.m. and covered head to toe. If I'm exposed to the sun, I get red and purple spots all over that take days to heal. Some of the meds we take make us hypersensitive to the sun. I stay out of the sun.
You got to be strong. I say that now that I'm feeling strong today. And . . . tomorrow I may not feel so perky. We have a string of challenges that never cease.
Thank you for response USAgurl I am already on Medicare and Medicaid and I have partials but they won't stay in my mouth. I just try to care of the teeth I have left. I am just recently allergic to the sun. I just start itching real bad and it drives me crazy. I use to be able to be in the sun all day not anymore. I always feel strong because there is no cure for this so it is a waste of time feeling bad about it. But I am always looking for things that others use to make it easier. I appreciate everything everyone has to say.Thanks
USAgurl said:
Dear Judy (hope it's your name),
I've had all of the above and then some. Stopped counting at 5. However, consider that some of the symptoms can be "side effects of the medications or the lack of a useful med."
I take Pilocarpine for my dry mouth--5/5 mg doses every day and it really helps also lots of sugarless gum.
Predisone has ruined my bones
My dental situation is moving towards total extraction (when you turn 65 you will be eligible for medicare). Dentures are not the end of the word you can eat with them. I joined and HMO and most of them offer quasi dental care at an extended price which also includes hearing and glasses.
I must be Vampira's cousin. I don't come out of the house until 3-4 p.m. and covered head to toe. If I'm exposed to the sun, I get red and purple spots all over that take days to heal. Some of the meds we take make us hypersensitive to the sun. I stay out of the sun.
You got to be strong. I say that now that I'm feeling strong today. And . . . tomorrow I may not feel so perky. We have a string of challenges that never cease.
Do your spots look like bruises? I just wonder because I have bruise like spots on my arms that seem to never go away.
I also take Plaquenil (as well as Azathiroprine and Prednisone). Plaquenil can affect your eyes, so I'm glad you're keeping up with the Opthamalogist :-)
I live in Central California, which averages 271 sunny days annually. I am photo-sensitive and the medication makes it worse. I don't go outside much during the day in the summertime, and when I do, I use a parasol. I take cool showers every afternoon when the day is at it's hottest. When I do get caught out in the sun, it feels like molten lava dripping on my flesh!
In addition to my medication, I am making lifestyle changes. The most effective change I have made so far is dietary. I cut out soda and most processed food. I'm working on completely eliminating processed food, but it's hard when half the time I'm too tired to cook. I take a ton of multivitamins and supplements, and cook with anti-inflammatory spices. I drink lots and lots of water.
I have constant bad breath and almost always have cavities. I've been told that I will lose my teeth, and my insurance will not cover implants, so even though I have one that the dentist wants to pull I refused. I want to keep all of them as long as possible.
Living with Lupus and Sjogren's is a constant learning experience. It's also a teaching opportunity because we have to educate everyone around us.
itzmejudy said:
I have Sjogrens and Hashimoto Thyroiditis, Alopecia Areata, Peripheral neuropathy and Parkinson's. Yes the symptoms do overlap so it is hard to know what is causing it but it really doesn't matter because they just treat the symptom anyway. I take Plaquenil for the Sjogrens and I don't know what it is suppose to do but I don't think it is doing anything. I go to Reumatologist tomorrow and will ask. I started having floaters in my eyes and flashes of light so I had them checked and Opthmalogist said the fluid in my eye has dried up what I see are the dried up pieces of the fluid and it happens as you ageand I am 64. Also I am now allergic to the sun and when I go out in the sun I start itching really bad and it drive me crazy until I put clalmine lotion on it or take a cool shower. I was told Sjogrens is not fatal but can cause other diseases or problems worse etc which could make those cause death which to me is all the same. Sjogrens is causing me to lose my teeth so I only have front teeth now and cant wear dentures because of the dryness. Medicare does not cover inplants so if I lose my front teeth I will be stuck with just gums and eating pureed food. The Ins needs to change. Autoimmune diseases are no joke.
Kquixtar said:
Do your spots look like bruises? I just wonder because I have bruise like spots on my arms that seem to never go away.I get random bruises that take forever to fade. I also have a low platelet count, and I'm assuming that the two are related, but I don't have a doctor's confirmation on that.
Thank you for your response! I was actually referring to my friend's mom who died from Sjogren's. My own mom died from Colon Cancer.
I'm not sure how old my friend's mom was, but she must have been somewhere in her late sixties or early seventies. Most of my family is long-lived - my great grandmother lived to 92, my grandmother lived to 92, my grandfather lived to 99. I've always assumed that I would live to be almost 100, and I guess it just really hit me that I might not live that long after all.
I did not take care of my body during my youth, and it's coming back to haunt me. I just keep thinking "what if..." and as we all know, that is a particularly unhelpful train of thought. So now, at 48, I'm doing everything that I should have been doing for the last 30 years, and just crossing my fingers that I can still make a difference in my health.
Kquixtar said:
Hi,
So sorry about your mom. I wanted to share that I had a close friend die from RA. I have RA and Sjogrens. However the reason she died were the treatments they gave many years ago. She had gold injections and very high doses of prednisone which destroyed her lungs.
Happy you are seeking treatment now for yourself. They don't know exactly what the cause of our diseases but treatments are better and less harmful now.
This is a safe place to share your feelings.
Thank you for sharing I too sometimes fear new treatments myself.
My prayers are with you and all that deal with these autoimmune disorders
It's terrible, you don't know what to do next, I can't have treatment for it because of my other illnesses, What annoys me is when people say how well you look, I feel like telling them jump inside my body and see how I suffer, Cath
Wombat I so hear you on that. It may take several hours to get ready and I feel awful but I can manage to cover my arms and pain when I deal with doctors appointments and small things.Ive had a broken metatarsal for 4 months and no one notices it at all. Should have been healed by now but people are not that observant.
Then if you do express how you feel they don’t realły want to hear the reality of it anyway.
Kathy
I get the itching rash in the sunshine- can be maddening... I find any perfume, perfumed moisturisers or bath stuff make it 10x worse. Same with sun screens- I've found the only one which helps a bit is a nivea sensitive one- not sure if you have that in the US. I only use their moisturiser after a bath if it's likely to be sunny the next day- obviously it's not so sunny in the UK as in the US though, so it's not such a problem, only consolation of British summer I guess!!
I was diagnosed two years ago and I’m finally going to a rheumatologist next month. I didn’t think it was anything more than a nussance with dry eyes, mouth etc. I’m sorry to hear about your friends mom. I wish you well
I know how you feel. I have that same probl3m when I get flares.