Sjogren's Syndrome :: No Treatment Options
Aug 3, 2015
i have had sjogrens since I was 41 years old, I'm now 74 . I've been told there's nothing can be done for it, it's just as I've got older I ache more and get extremely tired,I do go out walking with my dog to get some exercise, have a sit down , then do a few jobs , then sit down and so forth , sjogrens is not life threatening, but it changes your life completely .but it's nice to keep in touch with people who has this horrible condition.
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I suddenly was diagnosed with Sjogren's Syndrome 4 months ago. I had dry mouth for a year and my breath started to smelled so I thought it was a bad tooth. I started getting my teeth cleaned every 3 months.
Four months ago my eyes were constantly bloodshot. I am on resistais and I had plugs put in my bottom eyelids. I have tried numerous things. My eyes look horrible and my work keeps commenting on them. I want my eyes to look good so my boss will stop asking me if I got enough rest. I am the sole provider for my family and I don't know what to do to get my eyes to look normal again. Has anyone tried anything that works? This is my first posting about Sjogrens because I don't want to believe I have it but my eyes keep reminding me. My mouth has gotten better since my eyes and stomach have been attacked over the last four months. I am on nexium so my stomach is better but I was on nothing for years. I am only 43 years old so I am confused why this is attacking me now. My mom has MS and Rheumatoid Arthritis so I might have received it from her. She wasn't diagnosed until 55 and she had all of her systems in her 20's.
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I developed excruciating burning in my bladder within the last two weeks. After ruling out a bladder infection, and after doing much Internet research, my symptoms (burning 24/7) seem to match interstitial cystitis. Has anyone received this diagnosis? It appears that the condition is chronic and very very difficult to treat, and that there are no proven treatment. There are treatments but they are pretty extreme (you can Google them under treating Interstitial Cystitis.)
So what a low blow. Can anyone out there help me? I see a urologist for the first time tomorrow. Can anyone tell me what I am in for to cure this horrible burning?
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I was having some bleeding for about 3 weeks and it is being investigated now. I had ultrasound, biopsy (awaiting results) but I am just looking for my options. If they find something bad in the biopsy of course it looks like a hysterectomy. But if nothing shows I,m still stuck with the thick lining and bleeding. I have heard horror stories about the ablation, and I have heard its not a good idea with a previous C-section. My doctor thought I may be lacking progesterone or in fact estrogen dominant. I am currently taking progesterone to help with the bleeding for 10 days. It is working well and I feel great, and other symptoms I was having have stopped. Anyone have a D @ C with or without hormone therapy and did it help. I am 47.5 years old and if I can just coast for a few years until menopause I may be able to avoid a hysterectomy.
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Varicose veins are in some cases unavoidable. Many times, there are ways to naturally prevent and soothe them.
Get plenty of exercise to get your blood circulating, Elevate your legs on pillows daily for 10 minutes or more, Avoid excess weight gain, Dry-brush your legs daily to improve circulation. (This can prevent varicose veins from forming.) Use a natural-bristle brush with a long handle that allows you to reach all parts of your body. Gently brush your legs from the ankles up in a circular motion. Do this before you shower, so you can wash off any dead skin you brush off. Follow with moisturizer or body oil. Don't brush areas with existing varicose veins because you may irritate them.
Take sociable garlic and vitamin E capsules to improve circulation and vitamin C and B-complex vitamins to strengthen your blood vessels, Massage your legs with upward strokes, flushing your blood up to your heart. Use a massage oil made with 3 drops of lavender oil and 1 drop of peppermint oil in a coconut oil base (use unscented coconut oil), or put only the essential oils into a small spray bottle filled with water and spray directly on your legs.
St. John's wort oil helps with inflammation of veins. Avoid sitting for too long, especially with your legs crossed,
Wear loose clothing.
Try acupuncture or reflexology treatments to get your circulation moving and to move any stagnant energy.
After a bath, apply castor oil directly onto the veins. Massage using upward strokes from your feet straight up your legs. Avoid standing for prolonged periods of time.
Apply a cool compress soaked in witch hazel on your legs. Add a few drops of rosemary oil to stimulate circulation.
Flex your feet up and down and circle your ankles to the left and to the right twice a day.
To help varicose veins, make sure you're getting enough of the following:
Calcium-rich foods, since varicose veins are aggravated by a calcium deficiency
Pineapple, to reduce swelling and inflammation.
Berries such as raspberries, blackberries, blueberries, and cherries, as they contain a pigment that strengthens the walls of the veins
Foods high in fiber Plenty of water, to keep your bowels moving.
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How do you treat spider veins and varicose veins without vein clinics?
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Father suffers from parkinson's, My father has been suffering from parkinsons since 1992, he is 59 years old today and on tablet levodopa and pramipexole. Could anyone suggests other treatments to make him feel better?
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My body has been working on this big toe issue for years. I finally decided to see what it was and what I could do about it.
I have two choices: fusing or a lesser procedure called cheilectomy.
I am looking for feedback from anyone who has had either of these procedures done.
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For 11 years I have suffered with this condition. The 1st diagnosis was claudication, 2nd arthritis, 3rd peripheral artery disease, 4th nerve interference from protruding spinal disc , 5 6 7 8 9 10 etc. I have taken every known treatment . Where would you suggest I try next ?
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I want to start a thread that concentrates on anything that helps - or anything tried that doesn't help.
I've been prescribed Dapsone, Allegra and Advantan - no improvement after 14 days
I've read that Ultraviolet B was completely successful for 70% of patients after 10.9 weeks and I can email that study to anyone interested. Ultra Violet B is provided by the sun but one person on this forum reported getting worse after spending time in the sun.
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70 year old male in good shape been exercising 6 days a week cardio and weights for the past 5 years or so.Last couple of weeks or started to feel discomfort in my neck and jaw while exercising, it would go away when I stopped. Went to to non interventional cardiologist who ordered up an angiogram which I had 4 days ago. Results were Right artery 99% blocked, LAD 70 % and two other arteries on the left also 70% blocked. Interventional Cardiologist recommended CABG surgery because of multiple artery involvement and that the left arteries were not good candidates for stenting due to the position of the blockage.
My non interventional cardio after conferring with the interventional cardio said that I had options other than CABG. Both doctors agreed that my angina was most likely coming from the 99% right block.
Option is stenting the 99% blocked right and the OMT for the rest. A surgeon was also called in for consultation and neither he or the two other Cardios would predict outcomes or give an opinion as to which course of treatment I should follow. Regardless something had to be done sooner rather than later for the right artery. I sent the pics to another interventional Cardio who validated the position of my non interventional cardio that I do have choices other than CABG and that the which ever decision I would make I would probably have a good outcome. So next week I'm going to have the right artery stented and then medically treat the rest of my disease and see where it goes from there.
I also plan to make major changes in my diet to hopefully control the progression of the disease or even possible improve my condition
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I have Primary Sjogren's Syndrome but was born Hypermobile. It was only after my present Rheumatologist diagnosed that I have scoliosis that I started to research. I found the Beighton Scale and the Brighton criteria which I match completely. I explained my research to my consultant and she agrees. However while she and another consultant both agree I do have POTS so far I don't have an appointment to see anyone to help me. I have had ECGS and a bubble ECG but they have been taken while lying down. Now the POTS I really noticed post the birth of my last son 29 years ago is getting much worse, can anyone advise me as it has taken decades to get this far, I don't feel time is on my side
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Having been officially diagnosed with Sjogren's syndrome about a year ago, I think back on ALL the diagnoses I have had related to it: "nutcracker esophagus and severe GERD", "esophageal spasms", polyarthritis, fibrotic lymph nodes, fibromyalgia, Prinzmetal angina, benign parotid tumor excision (trabecular adenoma), dry skin, dry mucous membranes, etc. and now know they are all part of the same syndrome, which has been steadily worsening and becoming more malignant (and I am only sixty). There are many other more serious difficulties, but now I'm wondering if I, too, will get non-Hodgkin's lymphoma, since that is what some people progress into. It is NOT that this frightens me at all--but now there is something of which to be aware (and I'm not certain my M.D. knows of this). I also have glaucoma and cataracts--so I really have to protect my eyes (and I have had a vitreous bleed into one of them).
My ophthalmologist (a retinologist) placed upper and lower tear duct plugs in my eyes--which has helped, but I still have to use lubrication. Since I am a writer and use the computer extensively, I find it quite hard on the dry eyes. I am extremely careful to drink lots of water and often mix pure fruit juice with my water to avoid calories (sugar) and to make the water more interesting. This does, however, exacerbate my stress incontinence gained after fracturing my back--for which I stay close to a toilet (but my writing is done at home.)
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Anyway, I was at uni and going through a bad time in my life, whenever I get stressed my guts go into turmoil. As a result I was off uni for a week with severe rectal pain and feeling lower than a snake's belly. I booked an appointment with my GP as I had experienced similar symptoms before.
My GP recognised the symptoms immediately, I thought I had piles, she said I was too young so had a look. The digital examination wasn't fun, in fact she said she had never seen anyway change colour so quickly but it was worth it because I was referred to a colorectal surgeon.
I took my sick note back into my tutor and as I was doing a clinical degree, he said straight away that fissures were worsened and sometimes caused by stress. The penny dropped.
As I said I was going through a very very bad time in my life which necessitated me going on antidepressants (Cipralex) for my emotional state. When this was added to wall climbing agony due to fissures I was near breaking point. I remember after one bowel movement almost fainting with the pain, I was lying at the top of the stairs at my mum's house and clawing at the wallpaper with my fingernails - I have had a broken leg and in terms of pain that fissure was far worse, trust me.
I went to see the colo-rectal surgeon a few weeks later, I was terrified, but he was a lovely man, very very considerate. He told me that I had a large fissure that could be helped with an ointment. I told him my background so he talked a bit more openly and said that fissures are an incredibly debilitating condition. He once had a 16 stone rugby player openly weeping on his consulting couch with the pain - I can understand why.
I was prescribed GTN ointment and started using it as directed. I had a slight headache which I could live with, but this was far better than the agony of the fissure and this headache was pretty much gone after the first week. After a week of use the pain from the fissure had also subsided to nothing. After six weeks I went back to the surgeon and I was healed.
I wish that was the end of the story but it isn't, I have probably had four or five bad flare ups since and dozens of other twinges, spasms, bleeds and itches since but I am nowhere near as bad as the first time - I can live with this now. I have seen the surgeon twice since and he has offered surgery but my frame of mind precluded me from that, I was simply terrified.
My GP is very understanding and I can get GTN on prescription whenever I need it. I was prescribed Anoheal by the surgeon as well but this didn't work as well as GTN for me, but I have seen cases in work where this has been incredibly effective.
As I said earlier, I was doing a clinical degree, which I have now passed, so I feel that I am pretty well qualified to offer a bit of advice, so here it is.
1. Go and see your GP. Don't be embarrassed, your doctor has seen dozens of these - they are very very common. If you get fobbed off or feel that you haven't got anywhere, go back and tell him/her that you are not happy and you will go elsewhere i.e. change your GP. Changing your GP hits their bank balance, and as GPs are notoriously greedy, they will do something. Nobody should have to suffer with this.
2. Take something for the pain but NOT codeine. Ibuprofen worked best for me.
3. Drink plenty of fluids and lay off the alcohol while you are healing.
4. Eat lots of fibre and fresh fruit and veg, switch to brown bread and have something like Weetabix for breakfast. This softens stools and makes them easier to pass - less pain and less damage to existing fissures.
5. Use a stool softener, one Movicol sachet daily really really helped me. You can buy these over the counter from your local Pharmacist but tell them what it is for. Alternatively get them on prescription from your GP.
6. Lay off the red meat, there is some science to this as meat increases the residence time in the gut and predisposes to harder stools. This really helped me and I have seen a few accounts here where sufferers also say that.
7. Try to relax, easier said than done, but try simple things like having a hot bath instead of a shower. If anything helps you, no matter how crazy or off the wall it may sound, carry on doing it. Going out for a drive helped me. Staying active also helps constipation and makes you feel better. Don't stay in and stew - stay positive.
8. Stick to the doctor's directions of any drugs you are given. If you are told to apply a cream for 6 weeks into the anus, then make sure it goes into the anus for 6 weeks. And into the anus means into the hole - not nice, but a lot nicer than the agony from an untreated fissure.
Remember you are not alone, these things can be cured. You will feel terrible and you will feel like nobody else understands what you are going through but believe me, these things are very very common.
And if all the above doesn't help there is a simple operation that can be done on a day case basis that has a 95% chance of curing it for good.
If you are reading this you are no doubt feeling horrible but believe me, there is light at the end of the tunnel.
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My dentist told me today that I need upper dentures due to Sjogren's Syndrome. Has anyone else had to get dentures and how did you deal with it?
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Anybody tried it? I've just started. I'd been reading up on it on-line for some time. It's supposed to be the bee's knees for the whole sicca syndrome, and dry eyes in particular. As I was due to spend a few days in London last week, I debated getting some, but decided it was too expensive.
Then fate took a hand. As I haven't had dry eyes for months now, I didn't take my eye drops with me. That's the trouble with remissions - you forget you've got the wretched condition and get cocky! First night in the place where I stay it was a bit stuffy, so I turned on the air-conditioning for half an hour. One of those individual ones that blows air out fiercely however low you set it. I sat up in bed, facing it, watching the TV for just half an hour before going to sleep, but that was enough. I managed to get replacement eye drops the next morning, but now I'm in big trouble. Decided to invest in the sea buckthorn oil anyway, and have now been taking it for a week.
They say you're supposed to take four capsules a day for the first two weeks then cut down to two, but I'm being careful. Took one a day the first week, will start on two tomorrow and build up to four by the end of the month. I once had a terrifying experience on a low starter dose of Siberian ginseng. Just because something is "natural" doesn't mean it won't harm you!
Sea buckthorn is also said to be good for RA. The main ingredient is Omega 7, btw, but it also has Omega 3, 6 and 9 - though a different type of Omega 3 than fish oil. I'll be interested to see how that works out. I'm actually having an RA flare-up at the moment, but it seems to have peaked since I started my usual homeopathic treatment a few weeks ago. As I'm taking the oil alongside the homeopathic remedies, that will muddy the waters, of course. But I'll stay on the homeopathy for six months because it always works.
I hear you have to wait three months for Omega 7 to kick in, so I may be in for the long haul with the dry eyes. My right eye is already starting to bleed from a crack at the outer corner. We're having high winds here at the moment, which isn't helping things, particularly as my hips and knees have now improved enough to stand a 45-minute walk most days. I finally caved in today, and put on my wrap-around industrial goggles (provided by an optician in the UK). But I feel a right berk wearing them when walking around city streets - especially as it's not considered rude to stare in this country!
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My mother has been diagnosed with Sjogren's syndrome. Her main symptom is dry mouth and someone recommended us product called Biotene. Is Biotene really enough to contain this syndrome?
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I get bladder infections quite often. For the last year I've had 6. I get very sick with them. I run a high fever and am in alot of pain. They last for a couple of weeks. I have to take antibiotics for them and worry about having to take so many. Does anyone else experience this problem or have any suggestions?
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I have had dry eyes for about 2 year now (I also had lasik in 2005). Within the last 4 months my have have gotten really dry. I have all 4 tear ducts plugged and I am on Restasis. I also use sclera lenses (more for vision but also helps the dry eye). My eye dr said he thinks I may have Sjogren's even though I have never has a Schirmer's test (I am not sure how accurate that would be since i have had lasik anyway). tested positive for ANA 1:80 titer with homogeneous pattern but negative for RF and SSa and SSb. Should I pursue this further? Dry eyes are the only symptom I have.
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I was wondering whether depression is actually a symptom of this illness. I understand that it is natural to feel depressed when receiving a diagnosis of chronic illness, but my current mental state feels like something much more insidious and severe. I have never felt depressed in this way before, even when I got a diagnosis of another painful AI condition 8 years ago. I also know that mental stress can negatively impact symptoms so it is vital to 'feel better' quickly in order not aggravate the condition. I am not sure how to start to do this and wonder whether systemically something is going on that is affecting my brain chemistry to feel this bad.
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I have had chronic bronchitis/sinusitis for years.
Had sinus surgery due to level of sinus issues.
I don't get a cold, I get bronchitis - pneumonia/pleurisy, etc.
I have cold sores on my lips often.
In june I was diagnosed with an eye ulcer - I have never had any problems with my eyes. Ophthamalogist did test and said my tear ducts have stopped working.
I have blurred vision and my eye sight is deteriorating.
Exhausted
Joint paint
Tingling toes and fingers
Migraines for years
CT of chest shows enlarged lymph node in lower right pre tracheal region 2.5x1.4x0.8 and they want to do another ct in march
sore throat and coughing they just prescribed prilosec for acid reflux and although I've never had heart burn or anything like it, it's working....
I have testing borderline positive for lupus one time and negative the next. 1:80 Homogeneous Pattern
RA factor was -9.0
Igg subclass 3 LOW at 21 everything else normal
No lyme disease
White blood count tends to be a little high
Seg tends to be at about 80%
Lymph tends to be low
SED rate was elevated
CPK was normal
First appt with rheumatologist on the 24 of Feb. any thoughts on what this could be? Sjogren's seems close but I have no dry mouth Would really appreciate it.
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