Sjogrens

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

@jlh658, we are fortunate to get the recommendations above from @kanaazpereira. She’s directly on-point. in my view. I second her suggestions that you read entirely through the postings at http://mayocl.in/1BcAE3F (on Sjogren’s) and at http://mayocl.in/2kvZpbb on chronic kidney failure. These are important because of greater knowledge of about both diseases accumulated over the 15 years since your Sjogren’s diagnosis. I have some Sjogren’s symptoms, but doubt that I have that syndrome; other conditions probably are at work with me.

My most relevant problem is Stage 3 chronic kidney failure. My strongest recommendation here is not to obsesses about the word “failure.” I and many of my associates in this group are not severely compromised by our kidney problem — so long as we keep it in view and under constant supervision personally and by a medical team that includes a dedicated nephrologist. More on that in the discussion that @kanaazpereira put you onto where I sound off a lot more on my kidney problem. As you read these reports, I suspect you’ll gain more confidence in your ability to manage your situation in the years ahead.

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@jlh658

I have had Sjogrens for about 15 years. My kidney function is decreasing and now diagnosed with chronic kidney failure stage 3. Had a biopsy –directly due to the Sjogrens and now am on cellcept 1500 mg a day to keep my immune system from attacking my kidneys even more. Does anyone else have issues with this as well. Thanks

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Hi, @jlh658. Welcome to Connect. I do not have Sjogrens, nor do I have any experience with it. I do, however, take cellcept (mycophenolate mofetil). I take it with another immunosuppressant to keep my immune system from attacking my transplanted organs, liver and kidney. I have been taking it for almost 8 years. My labs are drawn routinely. And it is doing an exceptional job of protecting my transplanted organs. I have had no bothersome side effects from it. Your doctor should have advised you about directions for taking it, as well as any precautions that you need to be aware of. You may have a greater chance of getting infections, so wash your hands often and avoid being around people with infections, coughs, or flu.
Rosemary

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New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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Hello, @melperez1223. I would like to welcome to Mayo Connect. I am sorry that you are experiencing these issues. I believe that you will receive some responses from others here on this Sjrogren’s Syndrome discussion. Thru questions and sharing of our personal experiences, we are able to both offer/receive answers and support.
While you are waiting for a reply, I want to provide a couple of links.

Mayo Clinic Sjogren’s syndrome – http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Sjogren’s Syndrome Foundation – https://www.sjogrens.org/

I wish for you to find a resolution.
Rosemary

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I’d like to add my welcome too, @melperez1223,

While we wait for @blindeyepug @meemer @kyjeanne @uncbball @ccorrconro @graveltruck @marylou705, and others to join in, I want to let you know that we have a great, ongoing discussion in the Brain & Nervous system group, “Anyone here dealing with peripheral neuropathy?” http://mayocl.in/2ofBrlS. I would sincerely encourage you to go through it, post your message there, if you wish, and feel free to tag members.

Another discussion that might interest you is “Autonomic Neuropathy – Looking to talk with others,” http://mayocl.in/2nvag8a, where you’ll meet @bobsconnect @kathyzendner and @mojoearle.

@melperez1223, besides medication, how else are you coping with your symptoms?

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I have had Sjogrens for a number of years. Also PsA. I use Biotene gel, Restasis, and fluoride toothpaste per my Dentist. Also sugar free candy. My hearing has been affected. One ear is worse than the other, so I am going for a scan. I have cataracts in both eyes which are now up for surgery. Appt next week for a Consult. Can’t say I’ve noticed a change in smell – yet, anyway! I am taking Cimzia but it’s not helping very well. Have been on Enbrel and Remicade up to now. Enbrel is too expensive and Remicade wasn’t effective. Well, we do what we can!

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@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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@melperez1223, I was diagnosed with Primary Sjogren’s 5 years ago but the dry eyes, mouth, and skin existed for 10-15 years prior. The fatigue and pain are progressively worse. My sense of smell comes and goes. I had to get hearing aids 3 years ago. I have Hashimotos, Restless Leg, Osteoarthritis, Gerd, Diverticulitis, Osteoporosis, trouble sleeping, etc. I’ve had my Esophagus dilated twice, due to trouble swallowing. I also get chest pains, but other than an irregular heartbeat (which is under control by meds), my heart is fine. I take Pantaprozole for the Gerd, which seems to be the cause of heart pains. I’m on Plaquenil, Methotrexate, subscribed Xiidra eyedrops (waiting for insurance approval), and OTC meds for Sjogren’s, in addition to several other medications for other things. I had to quit work 1 1/2 years ago, so I filed for SSDI, which I just received! Hallelujah! I’m sure that’s more than you asked for, but I wasn’t sure what you were looking for. I’ll try to answer questions if I can. Also, on the foundation website, there is a new support network smart patients, and several on Facebook, which have really been a help to me.

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@rosemarya

Hello, @melperez1223. I would like to welcome to Mayo Connect. I am sorry that you are experiencing these issues. I believe that you will receive some responses from others here on this Sjrogren’s Syndrome discussion. Thru questions and sharing of our personal experiences, we are able to both offer/receive answers and support.
While you are waiting for a reply, I want to provide a couple of links.

Mayo Clinic Sjogren’s syndrome – http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Sjogren’s Syndrome Foundation – https://www.sjogrens.org/

I wish for you to find a resolution.
Rosemary

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Thank you, @rosemarya. I appreciate the support and follow up!

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@kanaazpereira

I’d like to add my welcome too, @melperez1223,

While we wait for @blindeyepug @meemer @kyjeanne @uncbball @ccorrconro @graveltruck @marylou705, and others to join in, I want to let you know that we have a great, ongoing discussion in the Brain & Nervous system group, “Anyone here dealing with peripheral neuropathy?” http://mayocl.in/2ofBrlS. I would sincerely encourage you to go through it, post your message there, if you wish, and feel free to tag members.

Another discussion that might interest you is “Autonomic Neuropathy – Looking to talk with others,” http://mayocl.in/2nvag8a, where you’ll meet @bobsconnect @kathyzendner and @mojoearle.

@melperez1223, besides medication, how else are you coping with your symptoms?

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@kanaazpereira, these are great suggestions, thank you! I’ll check them out now………

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@marylou705, I’m sorry to hear about the impact to your ears and eyes. I have never tried any of the biologics, but am open to them as a treatment option instead of the methotrexate. I’ll be curious to hear about the results from your consultation and wish you all the best. Dry eyes was not a concern of mine when seeking a diagnosis at all. Apparently, they are very, very dry, but I had gotten used to them and was more bothered by joint pain and dizziness. What were the issues with your ears? Did you have ringing and fullness in your ears as a symptom?

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@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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@kyjeanne, I’m using Xiidra and they work well, but I almost have too much moisture now. Better than the alternative I suppose. I’m sorry to hear that the fatigue and pain are getting worse for you. Where is the majority of your pain? It sounds like we have a great deal in common regarding symptoms. I am 48 years old and not working right now, but have not applied for disability or SSDI. I’m hopeful that I can find some sort of relief and go back to work, I really love staying active. At this point, I can’t function well and I simply can’t imagine that it’s all Sjogren’s related. Do you have any neuropathy?

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@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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@melperez, I haven’t been diagnosed with neuropathy yet, but I wouldn’t be surprised. My one foot is pins and needles at this moment. Also, I have carpal tunnel, so I’m not sure if some of the numbness may be neuropathy. As far as my pain, my knees, behind my knees (bakers cysts), my ankle, one leg, and lately my back have been the worst places for pain. I also have Fibromyalgia, Bursitis, and Osteoarthritis, so I think a lot of pain stems from those, rather than Sjogren’s.

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@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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I had severe wrist pain and initally my reg dr thought possible carpel tunnel and I said I didn’t think so as I’d been typing on a computer for my job for almost 18 yrs, why would it show up now? So went with my gut of arthritis and when RA dr said I did not have rheumatoid arthritis but had sjogren’s and it was a shock to me. Currently I do not have pain in my hands/wrist, but also on plaquinell and down to 15mg of predisone (to relieve interstitial lung disease caused by sjogren’s). I also have a lot of eczema type spots flaring up on my hands and arms and thighs right now that I put vanicream on and after a couple of days subsides. Sorry I got off topic. I need to go back and read this forum from the start as I have lots of questions about sjogren’s.

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@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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So interesting. I had wrist pain, joint pain in my hands and the Dr. said it was probably carpel tunnel. Blood tests showed Sjogren’s which was a total surprise to me as well. I have some sort of eczema type of spots forming on my hands, forearms and lower legs. They almost feel like plaques if that makes sense? I was allergic to Plaquenill, so tried Imuran for 2 years and towards the end of that 2 years, my symptoms really were out of control. I’m on Methotrexate, but so far it’s not helping.

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@melperez1223

New to the group and curious about issues secondary to Sjogren’s Syndrome. I was diagnosed through blood work a few years ago in my mid 40’s, but painful joints, strange rashes, dizziness and chest pain sent me to the Rheumatologist. Sjogren’s was not on my radar, but all that came back as absolutely positive. Tried Plaquenil for 4 months, but developed hives and had to move to Imuran for the next 2 years. However, my symptoms have come back with a vengeance-dry eyes, dry mouth, really painful joints, stomach issues and crushing chest pains. In Jan., I started methotrexate weekly as the Imuran was not helping at the maximum dosage. I’ve not seen any improvement with anything except for steroids at a high dose and oxycodone.

Meanwhile, I’ve been going to my Primary Care doctor, Neurologist and Gastroenterologist. The Neuro did a nerve conduction test that came back as normal, but decided to also order skin/punch biopsies. All 5 test sites came back positive for severe nerve damage/peripheral neuropathy. This week, I went back to visit and was told that I also have autonomic neuropathy. We think it’s secondary to the Sjogren’s. I do have 13 brain lesions, but am negative for MS and so far, do not have Diabetes.

Is anyone else experiencing such issues?

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@kyjeanne, thank you for sharing. Isn’t it frustrating to try and determine what is Sjogren’s and what is secondary? Are you checking into the possibility of neuropathy? My Neurologist did nerve tests and they came out normal, but the punch biopsies were all positive. You may need to have additional testing.

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