Sjogren's Syndrome Progression To Hodgkins And Vasculitis
I was diagnosed with Sjogren's about 13 years ago and I am now 53. Initially the dry eyes/mouth was a real problems but have learned to control moisture pretty much by medication and self-help (I prefer the self-help but appreciate medical help occasionally). 5 years ago I had Non-Hodgkins lymphoma which presented as a lump in the roof of my mouth (successfully treated with radiotherapy which also slightly improved my saliva production). Now all-clear. Since November 07 I have had numbness in my feet and then March 08 very red swollen ankles/feet and red spotty rashes (various locations). I was referred to the rheumatologist who has now diagnosed Vasculitis so I am on a 6 week steroid dose. Fingers crossed!! I just wanted people to 'be aware' that other symptoms could possibly occur and to be aware that they are connected to Sjogren's (I have been given very little useful info in 13 years!). As someone said before it's one thing having this but totally another trying to explain it to people. It is one of those 'unseen' medical problems which the sufferers have to deal with pretty much on their own. Except that we have forums!! Let's talk and discuss ideas, self-help. Keeping positive has got to be better than letting the symptoms 'get to us'. My main concern at the moment is how this may affect my full time employment - is this recognised as a disability here as it is in the United States?
View 27 RepliesVasculitis :: Prednisolone - Side Effects
I was told to take 40 mg Prednisolone for a week to help with my vasculitis. I have not seen a rheumatologist and don't know when I will see him. My GP gave me Prednisolone. However, he only gave it to me for a week and then what? I read the leaflet enclosed in the pack and it says not to stop taking medication suddenly, so will it cause any problems to just stop taking it after a week? My GP is absolutely useless, he doesn't care and when I start asking questions, he says he's running late and I have to leave. I am worried to just take it for a week, not knowing if it will cause me any problems. Also I am worried about the moon face, can it happen after a week of taking the medication?
View 22 RepliesHenoch-Schonlein Purpura :: Treating Vasculitis-HSP With Medical Cannabis?
Has anyone ever used medical cannabis to help treat HSP in children? My 13 year old nephew was diagnosed with a severe case of HSP and was recently released from a week stay at two different Hospitals in Arizona. They have him on two different blood pressure medications (the Hsp caused him to have very high blood pressure) and told him he could take tylenol for the pain along with weekly urine tests and monitoring his blood pressure daily. However, since he's been home from the hospital (3 days now) he can't eat, the pain in his joints, muscles, and stomach has yet to diminish, and his rash has flared up again (ankles, thighs, back). He has zero appetite and a lot of pain and discomfort. I'm curious to seek out treatment that involves using medical marijuana with less THC and more CBD, which i've been told is safe to give children (less of a high but helps relieve pain and nausea) and help get his appetite back. I know medical marijuana is super controversial, especially with children, but it seems steroids and pain medication from doctors has a long list of side effects and other problems.
If anyone has ever tried medical marijuana to treat HSP, please let me know. No doctor will ever talk about or advise us when it comes to outside remedies.......but i'm thinking outside the box, we need to get his appetite back and help lessen his pain.
Lupus :: Lupus And Vasculitis Tests Clear-MRI To Rule Out IBC-explanations Needed
I've had odd symptoms for many stinging pains, muscle twitching rashes, pancreatitis that is chronic but clear via scans.
Well, almost 3 weeks ago, a large red mark appeared on left breast. I've been going back and forth to doctor as I've wanted to rule out inflammatory breast cancer-it presents with redness etc but no lesions, hard to diagnose. Today when I went back, the doctor felt nodes under my armpit, confirmed during ultrasound, but said they looked benign and small. He said actually it could pop up from autoimmune. He did admit it was odd. It was on the same side as affected breast and not the other. I'm going to get an MRI of my breast as IBC doesn't show on mammogram or ultrasound often.
I've had swollen nodes in the past. I noticed a few times on my jaw line.
I haven't been diagnosed with lupus, tests many years ago were totally clear as were vasculitits tests. But curious if anyone has had nodes on one part of the body pop up. Im praying its not IBC. I'd much rather it be something else. IBC is the most aggressive form of BC and spreads in a matter of weeks, so grasping for other explanations
SLE, Raynaud's And Sjogren's Together
I have the SLE-Raynaud's-Sjogren's package of auto-immune illness (listed in the order of diagnosis). The Sjogren's is the latest and most burdensome flavor of the decade for me. I was diagnosed with it about 3 years ago but was probably suffering from it for several years prior before the symptoms persisted enough to result in a diagnosis. I guess that's typical. It was with the SLE and the Raynaud's.
I can't imagine it could get any worse, but I get the impression that I might be "early" in the cycle and that scares me. No tears, corneal erosions, no spit, heroic (expensive and painful) dental treatments to save teeth that may already be doomed, pain, fatigue. Little annoyances that by themselves are "nothing" all together its a spirit crusher. Can it possibly get worse?
Sjogren's And ADD - Both Have Same Symptoms
Around the same time I was diagnosed with Sjogrens; I was also diagnosed with ADD. And I have been taking adderall for it. But, I have been wondering could the symptoms I have for ADD (restlessness, unable to focus, forgetfulness, and confusion) be from Sjogrens? My rheumatologist is thinking about changing things around. But, I wanted to see if anyone else has had similar experiences; before I start messing with different medications.
View 12 RepliesDentures Due To Sjogren's Syndrome?
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?
View 1 RepliesSjogren's Syndrome :: Sea Buckthorn Oil?
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!
Relation Between Accutane And Sjogren's?
Is anyone aware of a linkage between isotretinoin (Accutane), used for treating cystic acne, and Sjogren's, which is linked to the epithelial cells? At 21, when Accutane first appeared, doses were higher than current (I remember my skin bleeding when scratching lightly with a fingernail). I am now 51, and have had Raynaud's for a number of years, and was just diagnosed with Sjogren's. Just curious if anyone has seen this?
View 2 RepliesBiotene Really Enough To Contain Sjogren's Syndrome?
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?
View 1 RepliesSjogren's - Foot And Leg Cramps?
I have severe feet and leg cramps can this be caused from Sjogrens ? I have take muscle relaxers with no relief
View 1 RepliesLyme Disease Or Sjogren's?
I have had a number of symptoms starting 6 months ago and have progressively got worse ever since! I've had MRI - normal, thyroid test - normal, neurologist tools lots of blood test looking for inflammation and tested for Lupus - all normal! He's now sending me for a lip biopsy! Here are my symptoms -
- Persistent swollen glands in throat (lots) - all reactive according to ENT
- thyroid nodules
- neuropathy
- Eustachian tube dysfunction (& muffled hearing)
- visual snow with all the trimmings (photosensitivity, increasing floaters etc)
- itching skin
- dull toothache
- tinnitus
- thinning skin (veins very noticeable and bulge)
- tickly throat and dry cough
- thick phlegm at back of nose
- occasional dry eyes
- ear ache
- muscle aches and pains
- joint pain
- on / off mild fevers
- tiny pin prick like spots on torso, arms, thighs
- blotchy skin
- pigmentation in skin (dark around mouth and nose and blotches in other parts of body)
- skin dents very easily / shiny palms / stretchy skin
- constant clearing of throat
- spaced out feeling
-dizziness and vertigo
- headaches
- stiff and aching neck and back
- random skin rashes that come and go but chest is red and blanches
- cold hands and feet
- shivers (get goosebumps all over body for no reason)
- Fingertips sometimes turn blue
- brain fog
- fatigue
- wart like tiny blister looking spots on palms and palms look extra wrinkled and shiny
- joint cracking especially neck
- night sweats (at the beginning, occasional now)
- constant buzzing feeling all over body
- can see heartbeat through clothes / palpitations
These a few more things but I won't bore you all with more!!
Anyone else with lyme had these symptoms? The most concerning is the vision and hearing which really concerns me! Can I have Sjogrens when all my bloods are fine?
Many thanks in advance!
Sjogren's Syndrome :: Often Bladder Infections
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?
View 4 RepliesSjogren's Syndrome? Dry Eyes Are The Only Symptom I Have
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.
View 40 RepliesSjogren's Syndrome? Depression Is A Symptom?
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.
View 11 RepliesSjogren's And Systemic Sclerodermatitis - Exercises?
I have sjogren's and systemic sclerodermatitis. I have been told to do some exercises as these may help stretch connective tissues and alleviate some stiffness in scleroderma. With sjogren's, i just feel exhausted most of the time and I wonder if doing some exercises could help or aggravate my exhaustion. Is there anyone out there who could point out to me what exercises best suit me?
View 18 RepliesPossible Sjogren's Syndrome? List Of Symptoms ...
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.
Sjogren Syndrome - Living And Coping With It
My daughter was diagnosed with Sjogren's Disease I was just wondering if there is anyone that has this Disease, and to inform me how they are living and coping with pain and day to day living. She is only 20 years of age.
View 1 RepliesSjogren's Symptoms Vs. Multiple Sclerosis
I just want a little input from people who have a sjogren's diagnosis. I have a lot of symptoms that my Dr first thought were from MS. I've had all the tests and that's been ruled out. I've had a low positive RA factor for years so the neurologist sent me to a rheumatologist. He thought without swollen joints and no treatment for years after dx that it's not RA. He did more bloodwork and xrays of my hands, feet and chest. I go back to see him Aug 6, so no info yet. My question is do you have these same symptoms? Leg pain, tingling in legs feet and hands, can't tolerate heat, migraines, brain fog, itchy rash on my chest and arms, Epstein Barr virus, leg cramps, b12 and vit d deficiency that I'm taking shots and supplements for and extreme fatigue.
View 2 Replies