Does anybody have Sjodrens?

[Jade]

Does anybody else have Sjodrens, I have just had it confirmed that I have it and i am very worried about the higher lymphoma risk. Have any of you had any advice regarding this from your consultants.

[DorothyItaly]

I was also diagnosed at the same time as APS which was many, many years ago. I read various books so I understood what it was and it all made sense to me in terms of my symptoms. At the time I read about the lymphoma risk. I don't think I have thought about the lymphoma issue again until your post. It is not something I worry about I have to say. All these things are a bit scarey when they are new, I agree educate yourself and then focus on other positive things and don't worry about what might happen.

[MaryF Administrator]

Yes I do, amongst other things. Mary F x

[Skyllark]

what kind of meds do you take to deal with this?

[ltespain]

Hi Jade - the risk is higher than average BUT still remains very low overall. I know this and have discussed it with the specialists as I have Rituximab treatment for my Sjogrens and that also increases the risk of lymphoma but in reality still it remains low compared to all the other things that can occur. i.e. it isn't something I bother worrying about as greater issues go with out of control INRs or daily issues with arthritis etc.

L

[Manofmendip]

Hi

Me too. Prof Hughes diagnosed me with it when I first saw him after being Dx with APS in Bath.

Best wishes.

Dave

[Carole-J]

Hi I was diagnosed in 2001 by Professor Hughes with Sjogrens. My eyes and my breathing are major problems and although I am aware of the risk of Lymphoma I have put it at the back of my mind. I believe in fate if you are meant to have something then you will but there is no point in worrying about what if. try and keep positive about things and don't worry about things you have no control over. Keep well best wishes Carole-J

[Jade in reply to Carole-J]

Hi Carole, you say breathing problems are an issue for you, can you tell me how that manifests itself? Lately I have become more breathless climbing stairs or hills or doing household jobs and am not sure which condition may be the cause.

[Carole-J in reply to Jade]

Hi Jade, my breathing has worsened over the years. I can't do hills, stairs are a big problem as is making beds and trying to do normal things, I just can't do them anymore. Even walking on the level I have to keep stopping to get my breath. I have several autoimmune problems, I have Lupus,Fybromyalgia,Raynauds,Under active thyroid(this can quite often be a problem with Sjogrens I have been told) but I am pretty sure that the Sjogrens is the problem. I also have trouble swallowing food and drinks.

I wish you well

Carole

[LucyLocket]

Hi there . . . I have Sjogrens alongside APS . . . my main issues at the moment are with voice, swallowing and the general gastrointestinal tract (IBS). I've had autoimmune issues since I was a teenager although was only diagnosed with the Sjogrens back in August this year. As far as lymphomas are concerned, I have to say that of course I've read about the higher risk but (surprisingly for a worrier!) I am not too bothered. It's something that is treatable when caught early and I think all of us are aware of any changes to glands etc that we'd get checked out pretty quickly. So all in all - we're probably better off knowing we have the condition as we're more likely to catch anything untoward. As the others have said, there are plenty of other things to be worrying about!

[Jade]

Thanks everyone I do feel a little calmer. I don't have any treatment as yet. I realise I have issues with dry food for decades, my family think I odd as I need gravy or sauces with most food a drink by the bed and always need a cup of tea. I never guessed my near constant aches and fatigue could be Sjogrens. I wonder if permanent constipation could be too.

[hutchchrid]

Hello from the Baltimore --- Washington part of the world,

Yes, I've added Sjogren's to the autoimmune menu, so to speak, APS&Fibro. Sjogren's is the most challenging for me. In addition to the dry eye and mouth (both exocrine glands the tear ducts and parotid glands), I have dry nasal passages, sinusitis, dry cough - have never smoked,BTW, interstitial cystitis, possible pulmonary damage, TBD, difficulty swallowing and often great pain in esophagus with painful retching up of food that just won't go down. There may be glossopharengyeal nerve disorder/damage.

Flares which can lead to sleeping 11 to 12 hours plus 3 hour nap. This fatigue is not only quantitatively different from plain old APS but qualitatively different. It is a complete, utter "zonk-out" to use a scientific term!!

Sjogren's affects every day, 'most every hour. In that way it's worse for me than APS.

Here are some excellent web sites: Sjogren's Foundation.org and the Johns Hopkins Hospital (and School of Medicine), Search under Johns Hopkins Sjogren's. They have a multidisciplinary clinic as you will see. They are ranked as the best US hospital and also the best US Rheum* service in the US. So, looking at the bright side, If I'm to be landed with these issues living in this metro area is a grace. I am to evaluated for a clinical trial of an immunosuppressor Hopkins is undertaking. Also, try using Google Scholar for medical articles as well as Medscape.com

As for lymphoma, I have lived through melanoma when i was a lot younger. CA is a scarey concept, but do try to focus on today. My refrigerator magnet states, "Yesterday is History,

Tomorrow is a Mystery, Today is a Gift".

All best wishes ... and hope you have time for a lovely bath soon. I like a pound of Epsom Salts and lavender and jasmine essential oils, some lighted candles, a great CD, my gorgeous Balinese kitty and some frivolous magazine to read. How about you? Better than an armload of pharmaceuticals. Oh, and a slinky, sexy nightgown and perfumed powder.

All this #%$ stuff can sure make it hard to feel feminine and glamourous. But we ARE!

Take care,

Christina