Now I really am confused!

So Long story short the rheumatologist finally called me back after 3 weeks and among other things told me that my lip biopsy was non diagnostic and I didn't have sjogerns. I go back to the maxillofacial surgeon today who did it and he says well there were very low levels so you may have it this is not the only test and all your symptoms point to it and prescribed eye stuff. I really wish they would get their stories straight and now I still have 2 1/2 months to wait to find out what the bleep is going on. Oh and the rheumatologist also told me they are 'scared' to put me on any treatment what so ever because of my adverse reactions. well gee thanks guys I really enjoy being in so much pain I just want to give up and being so fatigued I can't cope any more! sorry rant over

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  • Hello,

    I am so sorry you are in so much pain and that you may also have Sjogrens.

    I, like everyone here, will be able to understand the struggle with pain and fatigue, and, although it doesn't help in a practical way, I know I find it easier to cope when I know there are others I can share with who really do understand.

    It must be very frightening for you to have to wait, again, to know what's happening and worrying that they don't know what to do for the best re treatment and your adverse reactions. I really do feel for you.

    Re the Sjogrens - I have a couple of thoughts which might make that easier to manage at least. I have secondary Sjogrens and struggle a lot with dry eyes and dry mouth. Mine has never been formally tested and diagnosed, but just "assumed" based on my symptoms.

    Dry mouth is difficult to manage but I have some mouthwash and toothpaste on prescription which really do help and I carry a cheap and cheerful dry mouth spray with me everywhere. If you would like to know what they are, please let me know and I will give you the details. The toothpaste and mouthwash are available over the counter but they are expensive. But you might think it's worth giving them a try and then talking to your GP about a prescription if you find they help you.

    I am pleased you have some eye "stuff" and hopefully that will help you. But if not, don't despair because there are lots of different eye drops available. I think that, ultimately, a referral to an eye specialist would give you the help you need and, if that isn't forthcoming, it might be something you need to ask for. I don't know what you have for your eyes and whether you have been given drops AND cream. If not, you might find that Lacrilube eye cream (available over the counter) helps you at night. Because it is a cream, it's thicker and helps lubricate your eyes whilst you are asleep.

    I know none of these will help with your pain and worry, but maybe by easing some of the Sjogrens discomfort, that just gives you one less thing to have to deal with whilst everything is so difficult.

    Thinking of you.

    Tillyx

  • Thanks Tilly I sort of feel like I am being told so much conflicting stuff that now i don't know what think. i just am so over it and frustrated

  • I am the same and just manage the symptoms , my doc gives me Biotene oral gel on prescription which seems to last longer than others and tastes ok, and I buy pastilles from the chemist. He also gives me eye drops, Better than nothing. There is a sjogrens society who have been at. Lot of RA meetings I have attended, maybe they r online too for more help.

  • Hi - I'm in the same boat too i.e undiagnosed with Sjogrens formally but like many others on here I have been told that it's secondary Sjogrens. I take the same things as Allanah (since she very kindly told me what worked for her!) and they have helped although putting eye drops in is a bit of a pallava so I only do so infrequently when they are particularly dry. I was given Hypromellose Eye Drops on prescription from my GP because I asked for preservative free ones at the advice of my optician. My cousin has primary Sjogrens and has never had the lip biopsy but has been diagnosed with it and suffers quite a lot with other symptoms including shoulder and back pain. I don't think secondary Sjogrens always shows up in biopsies but I may be wrong. as Allanah suggests you could join the Sjogrens Society and find out quite easily. I would trust Tilly and Allanah - their advice is always second to none in my experience.

    Forgive me for not remembering but what were your adverse reactions to the medications?

    Tilda x

  • Hi Someonesmother

    I'm so sorry to hear about the problems you are having with treatment and with the possible diagnosis of Sjogren's. Have you ever been in touch with the British Sjogren's Syndrome Association? If not, it might be worth contacting them for some help with managing the symptoms of this?

    Here's a link to their website:

    bssa.uk.net/

    Kind regards

    Victoria

    (NRAS Helpline)

  • I think the difficulty with sjogrens is that there is a primary disease form of it, and it can be really serious causing lots of systemic problems. For that diagnosis you do have to have strong evidence, and a lip biopsy is one of the ways. For lots of the rest of us sjogrens is more of a nuisance problem that is secondary to other autoimmune disorder, and it may not show up the strong evidence of either blood tests (particular ANA patterns and other ENA subtests) or lip biopsy, but it still causes a lot of grief with mouth and eyes in particular. A rheumatologist who diagnosed me (on the basis of a bone dry schirmers test, which is the one they use to check tear production) preferred to use the term Sicca syndrome for it. Sicca just means dry, but having it down in my notes means that if I complain of dry mouth or eyes it does get taken seriously, and I do get prescribed things like the eye drops for it - two types - basic hypromellose solution for day time and lacrilube for night time.

    I don't think it helps that there is such different diagnosis of sjogrens between rheumatologists with some adding it into your list of diagnoses really easily, and others only accepting it if it is accompanied by surgical biopsy evidence. Dry eyes are dry eyes and need treating if you want to avoid ulcers on the cornea and other nasties.

    Maybe you could just forget about the diagnosis, but just keep talking about it as "dry eyes" or "dry mouth" - whichever way, if its causing you problems whether it has a label of sjogrens or not, your GP should be able to prescribe eye drops for symptomatic relief.

    One thing to remember though is that if you are paying prescription fees in england, it will certainly be cheaper to just buy basic hypromellose eye drops from the chemist than pay a prescription fee.

  • I can't help feeling sorry for you. I too have had similar experiences, where I am told I have X and then given medication to reduce help with the symptoms. Then you are sent for more tests, which come back normal or insignificant, (which correct me if I am wrong) is only to be expected as the medication is obviously working. However the consultant says well its normal. Makes me want to scream

  • I live in Australia and we pay for everything. I have a diagnosis of inflammatory arthritis and am not on any meds yet as they are scared to give me anything so that is even more frustrating. But one specialist is saying yes the other no so I am stuck between the two of them behaving like bulls in the top paddock to be right. I will let my GP know and he can keep prescribing me the eye gel stuff. I don't care either way if I have it or not makes no difference I just wish they would talk to each other and just give me a consistent response. It is utter XX how I have been treated.

  • Hi Someonesmother

    Have done a quick search to see if there is an Australian equivalent to the link I gave you and there is an organisation who deal with Sjogren's in Australia:

    sjogrens.org.au/

    Kind regards

    Victoria

    (NRAS Helpline)

  • Thanks Victoria

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