I feel like an old prune left out in an icy desert just now. I started Imuran a few weeks ago and hoping this all purpose immunesuppressant will make a difference. So far it's the first RA drug I've tried that hasn't made me feel sick, depressed or given me skin problems - but it's early days. Meawhile the neuropathic pain has retreated a lot and my joint pain and stiffness too. I'm wondering if it's working much faster than I was told it could or would because I'm so susceptible to the chemicals in drugs that this could be a positive as well as a negative? I have my second blood monitoring test this morning - on weekly bloods for a few more weeks then being moved to three monthly.
The only thing that has marginally worsened is the eye dryness and nose - which feels so dry and bleeds so often if I sneeze or blow it that I feel like it's going to drop off! Plus it's still cold here so I'm still feeling Raynauds type chill in my feet legs and hands. How often should we get retested for autoantibodies - my RO and LA were negative about a year ago. Should I expect any of these drugs for RA to help with secondary Sjogrens or do the SSJ symptoms carry on regardless?
And would eye and nose dryness be the cause of my longstanding issue with lack of smell and taste? Any way of improving these if so? I'm having an endoscopy next week and my gallbladder out in July so hoping that these might reveal a cause such as GERD or excess bile but it all feels like a ENT thing to me although I don't get sinus headaches - I do also have vestibular issues.
I don't know enough to be able to offer assistance but just wanted to say how sorry I am that you are feeling miserable and I hope things start to look up soon :)
Quote from: MAT51 on April 28, 2015, 01:25:50 AM
I have my second blood monitoring test this morning - on weekly bloods for a few more weeks then being moved to three monthly.
What are the blood draws measuring?
The only thing that has marginally worsened is the eye dryness and nose -
Are you using eye drops?? If so, OTC or Rx? I use Ayr nasal gel for my nose...most of the time, I tough it thru as the gel will drip from my nose..it's a bother.
my RO and LA were negative about a year ago. Should I expect any of these drugs for RA to help with secondary Sjogrens or do the SSJ symptoms carry on regardless?
How were you dxed with SjS? Lip biopsy? and...I haven't a clue as to the answer to your question. Doesn't seem so unless it's just relieving overall discomfort.
And would eye and nose dryness be the cause of my longstanding issue with lack of smell and taste?
I think so...don't know....doctors never told me...but I think so. It's the area of the dryness which supports my thoughts. Remember..I'm not a doctor. I will say this, no doctor ever understood this nor helped me with my burning tongue syndrome. And what did help? I am on low dose prednisone and it has helped a lot. Before the prednisone I used Orasoothe for my tongue..and also I still use Biotene Oral Gel (which only helps for 30 minutes to an hour. But oh, it feels so good for that short time.) I still don't smell..unless it's something acrid. My taste has improved but not even 50%. I do find
I find myself eating what I CAN taste over and over. What I can taste is usually something smooth. I think this is because of the years I suffered from the burning tongue.
I do also have vestibular issues.
I must have this too....a recent neurologist visit revealed I can't walk a straight line. I don't know who was more surprised..the doctor or me. I also have tinnitus which has improved since the prednisone...(again..low dose: 5 mg daily.)
Don't know if this helps...good luck...and have a good day.
Thanks very much Hero. I'm based in Scotland UK so some of the prescription meds will differ I think. I do use Lacrilube at night and eye drops in the day but I keep forgetting as it's a hassle - so they just feel very tight often nowadays. Thinking this may be why my nose gets so dried up and bloody too.
I'm not really asking for advice on treatment options but on whether it's worth pursuing things to get a diagnosis of SSJ when I already have one for RA, Sicca, Hypothyroidism, Raynauds and Small Fiber Sensory Neuropathy. I've already tried and failed to tolerate Plaquenil and Methotrexate plus another so now on Imuran. I don't know if this new drug will help yet but even if I got a positive diagnosis for Sjogrens I'm not sure it would help much where medicines are concerned?
I ask this here because most of my present symptoms are affecting my head - jaw and throat and nose plus the dizziness. I can walk in a straight line but can't stand upright if my eyes are closed - I keep falling over and lose balance in different lighting or if I'm tired. I've had lots of checks and it all comes back to the rheumatic side of things. Should I be asking to see an ENT surgeon perhaps or is it better to just assume it is all part of the multi system connective tissue profile and adapt accordingly?
I always find it amazing when it comes to complaints of loss of taste and smell there is a minimal response, so I guess this is a rare occurrence with Sjogrens.
Kimberly
My sense of smell seems to be on a hiatus at the moment. I agree with cccourt about eating the foods you can still taste. I keep coming back to spicy things like Mexican food and hot sauce. Before I noticed my smeller was gone I had some really sharp pains through my sinuses and headaches. So very dry and I can't remember when my sinus airways have been so open before, but at times it's so painful. When I first got the SS dx I began a nasal drip that has lasted nearly the whole time I have had SS (7 years). This is new for me to be so dry. I always attributed it to the Plaquenil, that it was helping the dryness, but now I am of the opinion that I am flaring because my eyes are in the same boat. So dry, so very dry. Not painful though.
Is the medicine no longer working as effectively, is the SS progressing more, is it something else? These questions are a plague! I wish I knew. So I just keep on doing what I'm doing and getting through the days one at a time (like all of the rest of you I'm pretty sure). Like you said Mat what is a dx of SS going to do for you besides cost you more money? The same treatments apply as far as I can see and you are already on a treatment. Unless something major happens like a kidney problem or lung problem, I would just not worry about the SS diagnosis for a while and try to improve the quality of your life with what you already have. The relatives come soon enough, I guess we don't need to rush them.
Take care and I hope you have a better day tomorrow.
Thanks nannysbaby. I'm up in the early hours with stomach pain that I'm almost certain is my gallbladder kicking off. I've had gallstones for 15 years and generally they don't bother me much anymore. But over the past 3 months I've had a traumatic lumbar puncture, a bad reaction in my guts to coming off Cymbalta, bruxism (jaw clenching), nose bleeds and flu that led to pneumonia and two lots of antibiotics. During this time I became malnourished and passed out several times although always kept drinking loads of water.
I also had a skin biopsy from each calf to test for small fiber neuropathy but they both came back normal.
But now my appetite has come back even though my sense of taste and smell have not. The neuropathic pain flared up after the pneumonia but, having flattened it with ten days worth of naproxen, codeine and paracetamol plus Zantac it has died down. However all this and a craving for strong tasting, spicy food has triggered a big gallstone flare up.
I'm having an endoscopy next week and gallbladder removed in July so not much point in seeing the doctor but it does feel pretty relentless and asking for a lip biopsy is really not at top of my priorities.
It never rains but pours as the saying goes. My big worry is that the Imuran may be agitating the gallbladder further as I still don't eat much, am gluten free and never touch caffeine, alcohol, sugars or refined foods but I think the spicy stuff has to go now too. Roll on gallbladder op and hopefully I will lose lots of weight in the meantime because I think I'm going to have to starve this flare up into submission!
At least I'm not the only one who suspects SSJ as culprit for lack of taste and smell. Thanks.
Mat
Dear MAT51,
I have loss of taste and sense of smell...but not complete.
In addition I have weird 'smells' that aren't there. Like something burning, or wet cardboard.
If your nosebleeds are from dryness, and you don't already have a humidifier next to your bed,that will help.
I have blood from my nasal passages and in my mucus from time to time, but not serious.
We have many things going on, and at some point I have to accept that this is how my life is going to be. It's always been this way in my life, except I had a 30 year period of remission, more or less. I wasn't 'strong' and always needed more sleep than the rest of the world...but I did manage to 'live in the world' and to have few serious 'issues with my health'.
That ended with the Sjogren's, of course. So now this is a new adventure.
Hugs, Elaine
Thanks Elaine. I haven't yet tried a humidifier. I can't accept that I won't feel better than I do at some point but my GP says that perhaps I will wheh my gallbladder has been removed in July so in setting my sights on this just now!
Quote from: MAT51 on April 28, 2015, 08:51:38 PM
I also had a skin biopsy from each calf to test for small fiber neuropathy but they both came back normal.
OUCH
all this and a craving for strong tasting, spicy food has triggered a big gallstone flare up.
this won't help the craving for what you WANT...but once I was dxed with the gallbladder and awaiting surgery I googled gallbladder diet...and lots come up. I followed the ideas/guidelines..and never had another attack. I lost weight..and it was easy to follow since before I knew, the attacks hurt pretty badly...I was still working and some bad times had ensued.
At least I'm not the only one who suspects SSJ as culprit for lack of taste and smell. Thanks.
And...I think the ones who have NOT connected these senses from SjS are not as uncomfortable as the rest of us. The disease itself is progressive. Many of us have not advanced that far. My tears (or lacrimal glands) have been affected for over a dozen years. Think about that a second. My lacrimal glands were hardened at least 12 years before my dx. As to my mouth..I was treated for chronic sialadenitis (parotids and sub mandibulars) for 5 years before dx. All but one are hardened...and were upon dx. So my "glands" were completely diseased before my dx. Over and over physicians point up my high pain tolerance threshold. I really do NOT have a HPTT. I'm really a cissy. What I am is OLD. As the discomfort progressed, the older I got. I accepted this as old age. As you ask: what good is the medicine? Do you really need ongoing tests for confirmation? I don't think so. But as you state, you live in the UK. In the USA more and more doctors will treat undiagnosed SjS who have been dxed with sicca, etc. So...if you are receiving the hydrochloroquine (or equivalent) and restasis and one of the drugs for dry mouth (pilocarpine, salagen, evoxac, etc) I don't believe the dx should be pursued. I AM NOT A DOCTOR. I'm just giving my opinion to your query.
Remember: You are mentioning taste and smell...so I am presuming you have not progressed to burning tongue. This was my LAST (and likely most painful) condition. (I discussed this earlier.) I guess I am saying your meds may keep you from advancing that far. This would be a good thing.
One last bit of info: After being on plaquenil and prednisone since the first of the year, my tongue has almost normalized. I still can't eat anything spicier than tortilla soup. This treatment leads me to believe I had inflammation of the tongue..which no one ever suggested. The other event since above meds, I am beginning to have pain in my parotids. This is thrilling. This means they are NOT hardened or the hardening has been reversed. I have some kind of movement of the compromised mucous in these glands. When I do have that pain, believe it or not I have so much saliva in my mouth it astonishes me. Then...the next day-no movement and no excess saliva. :(
Since you live in the UK, no Indian or Malay food for you...some Chinese...stay with local fare as it is bland. It will save you a bunch of discomfort! I would avoid fish and chips..and anything overly salty. If you haven't realized by now, drinking will dry your mouth faster than almost anything.
Aha MAT51,
I find we do what we need to do when we need to do it.
I have always had a humidifier, since I was 20 (I'm 73 now) just because my skin was so uncomfortable in the dryness. We have one huge one in our bedroom all winter, and there is also a humidifier on our furnace.
Hugs, Elaine
I would be willing to bet that most people with Sjogrens have taste and smell problems to a certain degree. I think that it is easier not to respond because of all the changes that go on with the smells and taste. My nose doesn't work worth a darn anymore and the smells I smell change from time to time.
I can smell some things and not others. I also can smell things that aren't there and drive my family crazy at times. Always smelling something burning, something rotten, something that is harmful is the usual smell. My hubby and kids have all lived through it after investigating several times so is obviously is my weird nose.
I have a lot of problems eating food because just the thought of the taste makes me ill. Meat quite often tastes rotten and I just can't stomach eating it. Since I am now alone I find that I would rather buy a Sub sandwich or eat cold cereal instead of making something that costs money and then loses its appeal when it is done.
I was going to skip answering but then thought maybe I should cause sort of figured people are so used to this problem and does change from time to time. Irish
I have some of these issues too. I think the dryness definitely affects the smell and taste because when I am feeling very dry I lose my appetite too. Something to try is Sesame Oil but make sure it's not Toasted. It must be raw oll, and it's sometimes called therapeutic grade. It's been used since ancient times in India and helps with dryness and nosebleeds. I find the nasal gels only help for a little while, but the oil is longer lasting and natural.
I've been using Sesame Oil from a bottle, but I just found this, which looks promising.
http://www.nozoilnasalspray.com/
My nose gets crusty, I get burning tongue sometimes and I feel my sense of taste is off. The taste of some meats just really turns me off if they don't taste just right these days. Lunch meats, forget it, but they aren't good for you anyway.
I am also experiencing a lot of dizziness right now. I noticed a while back that my balance was off. I also get car sick very easily. I don't know if this is the disease or the plaquenil or another med.
Thank you for this topic.
I use the Ayr nose gel but after reading this, I am getting a humidifier and trying some oils. I use oils on my skin now but never thought about using them in the nose~! Very good! Thanks for the tip grapei.
How problematic are the nosebleeds? I've a friend with chronic nosebleeds who got her nose tissue cauterized (they killed the tissue by burning it). She's much better now but I'm worried in SS that would increase the dryness too much.
I hope you can find some relief, Mat. Wishing you well on this unseasonably warm day.
Sorry to everyone who replied to this post of mine - I have only just got to it. The reason for this is because I spent a week in hospital with a an acute abdominal sepsis - got home late on Tuesday having had IV Gentamicin, amoxicillin and lots of other drugs by IV or oral and had to stop Imuran for the time being until I am clear of infection 100%. My CRP went from a raised 36 up to 160 over the first few days of admission. I do have gallstones of 15 years and plan for my gallbladder to be removed in July but the ultrasound scan didn't show any movement or anything that could confirm Cholecystitis. There was blood and protein in my urine initially do the surgeon thinks I had a severe UTI sepsis rather than a gallbladder problem. My GP (I live in north of Scotland) feels it is definitely Cholecystitis though.
I am feeling better but am horribly tired. The endoscopy was done under sedation at my insistence and showed a bit of GORD but nothing significant at all. A few days later I went to my choir practice and half way through I found a blood clot at the back of my mouth. I had several more the following day and phoned the doctor. He felt it was nothing serious - just some bleeding from the trauma of endoscopy. This didn't quite make sense to me and now I've decided it was definitely caused by the singing and the blood has in fact come from my sinuses.
Sinusitis makes much more sense of the nose bleeds and sores and also if the weird pain in and around my teeth and jaw. My remaining confusion is really whether I have a type of Vasculitis - rheumatoid or Wegeners (GBA) most likely - or whether all this could be caused by Sjogrens. If the abdominal infection had come out of a history or UTIs or a recent history of gallstone flares - if I ate fatty food or wasn't gluten free perhaps this would make more sense.
But following flu and pneumonia and intense flares of small fiber neuropathy in between with dizziness and nose sores/ bleeds I feel this must all be connected - too much going on across my body for coincidence. I can't blame Imuran because I had only been on it for just over 2 weeks and the stomach pain was in the evenings 8 hours after taking my low dose - and both my weekly blood tests came back normal.
I will be relocating to a new area soon and will have access to greater specialist input so will hopefully be able to get a name to put to the disease - and if Vasculitis then maybe s more effective drug regime. I see the neurologist again next month so an trying to work out what might be going on so I can discuss with him then.
I am new to these boards but have had Sjogrens for well over 20 years.
Amongst a lot of symptoms I am one who suffers dry nose /airways and loss of taste which can cause a fuzzy head and dizzyness. Over the years I have found this is caused by a fungal infection which does not show itself as it does in 'normal' folks according to the hospital in me its the above symptoms along with a coating on my teeth in a morning and maybe a roughness to the throat if I ignore the symptoms.
I carry at home Nystan (antifungal syrup) this works like a miracle and never fails within 24 hours of improving and clearing my symptoms. My problem was convincing the GP what my symptoms were as they dont show as they expect but the hospital helped me there so I no longer have issues getting the medication when I need it :)
Hello Mat51,
My eyes are O.K., I just use OTC eyedrops. But my poor mouth is like cardboard. Lot's of reasons to lose sense of smell and taste, but it is listed as a possible Sjogren's symptom. I had a number of sinus surgeries and thought maybe that was my problem. The why and wherefore isn't important but what has this done to my ice cream flavors! I've switched from vanilla to chocolate and that I can taste. Part of taste is the visual appearance of the meal; colorful helps. Ah, my favorite is the crunchy things (Doritos, Peanut Butter Pretzels, coleslaw.) I'm sure you will find some foods to stimulate your appetite. As to smell, I have nothing to add. Good Luck.
JojaAZ
Thanks but I can't eat ice cream anymore which is heart breaking really because there's a local brand of ice cream which is truly gorgeous! The reason is that my teeth have become terribly sensitive with this bizarre phantom pain so chewing and hot and cold things have all become uncomfortable for me. I do think this is unfair but I can and do taste horrible tastes my own body exudes if I've had a particular medication such as zopiclone. So really bitter, foul tasting chemicals stay around all day to play he me despite tooth brushing etc. The ice cream I miss is honeycomb and ginger but it's the coldness that stops me. There are some foods which don't disappoint but they are generally either very salty or very sweet.