Sicca/Sjogrens

[ladylupin]

Hi all, just wanted to know what the difference is between Sicca/Sjogrens as I have been diagnosed with Sicca Syndrome. I have had SLE for 43 years including chronic kidney disease, mitral valve prolapse, raynauds, livido reticularis, Gord, Osteopeania, Osteoarthritis, Eating disorder, Hypothyroidism, Hypercholesterolaemia, Fibromyalgia-type chronic joint pains, inflammatory arthropathy, chronically low complement levels, etc - the list goes on! My understanding is that it is only classed as Sicca Syndrome if there is no underlying auto-immune disease, which I clearly do have. Can anyone put me right on this as I am very confused as to why it is only classed as Sicca? Your replies would be very much appreciated. Also my mum was diagnosed with Sjogrens after initially being diagnosed with Lupus and I have all the same symptoms as her, including dry eyes, very dry mouth, persistent cough and croaky voice and very dry down below making smears very painful. I would be very grateful for any replies. Thank you

[PMRpro]

info.sjogrens.org/conquerin...

I think the difference is that there are specific antibodies for Sjogrens - that makes it an autoimmune disorder in its own right. In Sicca you have the dryness symptoms but they haven't found the antibodies. You have OTHER autoimmune disorders yes, and the Sicca may be secondary to them, but not evidence that the symptoms are due to Sjogrens specifically.

[ladylupin in reply to PMRpro]

Hi, thank you so much for your reply - much less confusing now. I will ask my Rheumy whether she has looked for the antibodies as I have only just received her letter from the clinic I attended in November 2014 and the blood tests she refers to were in May 2014. I am not sure what has happened to the November results - perhaps the letter was dictated before she had looked at the most recent results. Not much help when test monitoring is so out of date. Thanks again for your helpful reply. x

[Barnclown]

Yes, this can be confusing. When starting lupus treatment in my late 50s, I was at first diagnosed with sicca symptoms. 5 years into the diagnosis & treatment process for what has turned out to be infant onset lupus, my various consultants now say I have seroneg sjogrens. My impression is that seroneg sjogrens is just as common as seroneg lupus, but only more experienced & confident rheumatologists frankly think this way...and they need to trust you to tell you so. Otherwise they feel safer just referring to sicca symptoms.

I'm like you: severe chronic multisystem dryness symptoms, being monitored annually by a bunch of specialist clinics which have each given me daily dryness treatment plan regimes inc prescription meds....all of which are helping, thank goodness: urology, gyn, gastro, eye clinic, periodontist, ENT etc. All my consultants agree that my dryness is due to sjogrens secondary to SLE. My impression is that the early onset & long term persistence & multisystem character of my drynesses mean they are sjogrens, rather than just sicca. And also, I have early onset lymphopenia & hypogammaglobulinaemia which apparently fit either the secondary sjogrens and infant onset SLE.

Some consultants & specialist nurses have reminded me of the following: It may be worth bearing in mind that it's reasonable to believe that those of us who have lived with lupus & secondary sjogrens for decades are likely to have had phases of sero-pos blood whether or not our blood was actually tested at the right moments! Clinical observation by experienced consultants + medical history are as important as blood results.

🍀🍀 coco

[ladylupin in reply to Barnclown]

Hi Coco, thank you so much for your informative and knowledgeable reply, it is very much appreciated and a big help. I was originally diagnosed with SLE at the age of 14 and am now 57. I was rushed to Churchill Hospital, Oxford by ambulance with a police escort due to being too ill to have the siren on. The organs being involved were kidneys (after a biopsy) and heart and was then put on huge doses of prednisolone and azathioprine (total combination of 17 tabs per day). I was luckily enough to be able to take them which my fantastic consultant put down to my good constitution. I also had the butterfly rash and swollen body. After several years as an outpatient at Oxford I was transferred back to my home town hospital and have been an outpatient ever since under various clinics like yourself. Very dry skin, hair and brittle nails and nail dystrophy have been a problem for many years, the very dry mouth and eyes for about 2 years and on and off at gynae as far back as I can remember. My persistent cough and croaky breaking voice for about 4 months and Rheumy said my chest was clear. I visited my G.P. who sent me for an XRay which I have just had the results and it shows a shadow over my lung so have been put on strong antibiotics and to repeat the Xray in 6 weeks, so maybe that is not connected. Sorry I have strayed off the subject a bit but you always seem so informative and I would love to study my blood and test results but do not have access to them and was wondering how I go about getting them. I get the feeling that most things are played down probably due to all the cutbacks. The reason I say this is because my Chronic Kidney disease has been omitted from my letters due to no blood or protein found in the last several dipstick tests but my research tells me that CKD is lifelong as nephron damage and scarring cannot be reversed although can improve a little or fluctuate. I do not believe my local hospital have notes from Oxford as they rely entirely on what I tell them. Hospital letters previously referred to my CKD as stage 3 but GP notes state stage 4. Very confusing. Any input would be greatly received. So sorry for the long blog. I wish you all the best with your very many conditions. x

[Barnclown in reply to ladylupin]

Thanks so much for telling me more about yourself ladylupin, (lovely name). It's dreadful to think of you going through so much so early in life. But you have survived with gusto, which I admire greatly. I'm especially glad to meet you because there aren't many of us who have actually been diagnosed with very early onset lupus.

You ask about getting printouts of your blood results. My clinics give me printouts on request. My rheumatology lupus clinic & immunology clinic actually include blood results in their report letters after appts. I know each hospital is different, but the NHS must give you your blood results if you want them. Each hospital has a NHS protocol for supplying patients' test results on demand. Usually you complete a form and make a payment. I've done this in order to get duplicate copies of MRIs & MRI reports. The hospital then posts you your results. Each hospital website should provide info about this protocol...but you could ask at your clinic & or at your GP surgery. This is my understanding of the official situation...others may be able to explain the process & protocol to you better than me, though (this would be a great question to post on this forum, no?)

I'm so glad you're here & am wishing you all the very best

Take care

🍀🍀🍀🍀🍀

[ladylupin in reply to Barnclown]

Great informative reply as usual - thank you so much. I will ask at my GP surgery first as I am not due to see my Rheumy until May and see if I get any joy from that! I agree, this would be a good question to post on this forum to see how many people do monitor their own health issues through test results and what the processes and protocols are of getting them. Likewise it is a pleasure to meet you also and I am very happy to have met someone with long-term conditions that can give such in-depth information. I admire your calmness and ability to deal with your various illnesses particularly having gone through most of your life without a diagnosis - must have been very tough on you and I hope that you are now getting the very best treatment and care that you deserve. Wishing you health and happiness. x

[Barnclown in reply to ladylupin]

🤗👍👏🍀😘

[LUPUSadmin]

Hi ladylupin,

You've already got some great responses. I just want to confirm, sicca syndrome is limited in it's scope and usually refers to dryness of the eyes and sometimes mouth. On the other hand, sjogren's syndrome is a systemic condition that can affect any part of the body.

As has been reflected in the comments already, the symptoms may sometimes be similar but the conditions are not. The importance of establishing an autoimmune cause is down to this: Dry eyes and mouth may only be the first of many symptoms which can be treated if sjogren's is diagnosed.

Hope you're clearer in your understanding now.

George

[ladylupin]

Thank you so much for your helpful reply George - much clearer now and fingers crossed that it remains as just Sicca!

[notoverthehill]

Ladylupin

I was wondering if you are like myself over that certain age . I get a treatment for several weeks before I have certain examination so i would have a word with your doctor before it certainly helps with examinations

Jean ,not yet over the hill