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Hi, anyone out there with SS who can help with symptoms. I look really well, but I'm really suffering with the many symptoms I've got. I have seronegative secondary Sjogrens on the back of ulcerative colitis. Dry eyes, dry moth, dry skin, itching and rashes, dry nose, aching ... the list goes on.
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Tumtum1963 pauline61273
Posted
Hi Pauline - sorry that you have so much to contend with. When you say seronegative do you mean that your Sjögren's has been confirmed by Schirmers or lip biopsy or that you've been diagnosed by a rheumatologist because of symptoms?
The reason I ask is because, if it's been confirmed as your first connective tissue disease it may be primary Sjögren's along with UC. Not that treatments would differ much anyway but it may mean you are able to access more treatments at least. Also there are other inflammatory diseases such as Behcets that can share many characteristics of Sjögren's.
I know someone with UC and a lung condition, who later developed symptoms of RA. She has really benefited from injectable Methotrexate for her swollen joints.
Apart from this there are all the obvious topical treatments and Pilocarpine and I'm on Mycophenolate/ Cellcept for my primary (seronegative) Sjögren's. Not sure whether or not it's helping much though. Sjögren's has no real systemic treatment I'm afraid.
rhoadsclan5 pauline61273
Posted
I was diagnosed with primary Shogren's Syndrome in 2012. Then my extremely dry eyes caused me the most issues, and I had to keep Sustane eye drops with me at all times. For some reason my dry eyes have greatly improved, but extreme fatigue and joint aches, among other symptoms have become my normal. What has helped me the most is my recent change in diet. Out of desperately wanting a better quality of life, I started following the Paleo autoimmune protocol plan and I'm actually starting to feel better. This diet plan, although strict, has helped my achiness, and has given me more energy. Because of my bothersome fatigue I have learned to stop pushing myself and take time to rest when I feel the fatigue coming on. I'm trying to manage my stress better, as stress brings on flare ups of Shogren's symptoms. I've even recently made a job change that diminished some of my stress and gave me more flexible hours. Shogren's can rock your world so being proactive with keeping the bothersome symptoms under control is key.
Ccfbarb pauline61273
Posted
Hi Pauline and Tumtum,
im sorry Pauline that you are suffering so many symptoms. My blood tests all came back negative but my positive lip biopsy, along with the symptoms of dry mouth and eyes gave my doctors the diagnoses of primary SS. I also developed weakness in my legs ( could barely walk), tremors and total loss of hearing in my right ear overnight. I was so scared, but I believe that God and good doctors returned about 85% of my hearing with steroids. It's a crazy path we go down as doctors try and treat your symptoms and after 20 years living with this disease, I'm taking 10-15 medications a day! I wonder sometimes if some of the things I'm going through are a result of them!
Anyway, Tum tum, I wanted to tell you that Cellcept has given me a whole and relatively healthy life for about 10 years! I was on a low dose. I forgot to mention that I have CNS involvement also, and now within the past 5-6 months have developed painful peripheral neuropathy that reaches to my knees. So, my Rheumy upped the dose of Cellcept quite considerably within the few weeks, so Jury is out on that. Maybe your not on a strong enough dose?
Pauline, I wanted to comment on your itching. All my doctors thought I was crazy when I told them 20 years ago that I would break out in these terrible itching spells! They were so bad I would scratch my skin raw! Then my rheumy sent me to a very smart Allergist, who prescribed two harmless medicines and the itching has been under control since then. They were ranitidine 150 mg twice daily along with pantoprazole 40 mg once daily. It was like a miracle, because that those terrible itching episodes stopped completely!
Hope everyone feels better!
Tumtum1963 Ccfbarb
Posted
Hi Ccfbarb. I too was diagnosed last year with Sjögren's from a 100% positive lip biopsy - although I was previously misdiagnosed with and treated aggressively for RA. My ANA is clear positive and I have high levels of inflammation and secondary Raynaud's. Just come off a drug for this though.
I'm already on quite a high dose of Cellcept and going up to the highest dose, 3000mg soon (my liver has to settle a bit) to see if this gets my neuropathy under better control. I'm not that bothered by dryness of eyes and mouth etc as I've had these flaring and remitting forever. But the neuro symptoms are hellish! I too take Ranitidine 150mg twice daily and blood pressure meds and thyroxine too.
I'm currrently 3 weeks into the AIP diet - a more extreme version of Paleo. Jury is still out on whether it's working but the previous flare up and series of ENT infections has settled down so I'm sticking with it for the time being.
Ccfbarb Tumtum1963
Posted
Hi Tum Tum ... I was just increased to 2250 mg a day, for this awful neuropathy. So far, I haven't seen much of a change. I by chance started taking my Vit B 12, 1000mcg sublingual and I've been having better days. Probably hopeful thinking but I have had very low Vit B12 in the past and no doctor has checked it lately. I figure it can't hurt!
Tumtum1963 Ccfbarb
Posted
No you can't overdose on B12. My levels were good whenever they are checked but I take it nevertheless!
lily65668 Tumtum1963
Posted
That's not strictly true Tumtum. You can overdose on any vitamin if you try hard enough! I take your point though. Excess B12, like excesses of most vitamins, is usually excreted harmlessly. The one exception we all need to look out for is vitamin A - that can literally be a killer in overdose.
Even so, it's best when taking any vitamin to stay within the recommended dose, unless advised otherwise by your doctor, on the basis of blood levels. As an example, my doctor advises me to take a higher dose of vitamin D3 than the maximum indicated on the pack, as I tend to have low levels in my blood, like most elderly people living in sun-starved northerly latitudes. However, I still stay well within the Vitamin D Council's guidelines, and my levels are monitored every 6 months to make sure I'm not OD-ing.
Tumtum1963 lily65668
Posted
You're lucky Lily - no one checks my vitamin D levels and I live in far north of Scotland! I had it checked myself a couple of times and was deficient. So gp agreed somewhat defensively to put me on AdCal D3 - which I've been prescribed enter since. I was adding extra D3 but my new rheumy asked me not to as she said this could become a problem. She checked my B12 levels and asked if I supplement and I said I did. She said this was fine to supplement but extra Vit D was not. This is where I got my information from about us naturally eliminating B12.
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