sjogrens

[PURPLECROCUS3]

Finally after 14years+ of symptoms and me being fobbed off by doctors.I have had a positive blood test for Sjogrens and in combination with Lupus.My GP will discuss things with me on Thursday in a face to face appointment.I read there is no cure for this condition only treatment.Can anyone give me any advice on Sjogrens and what to expect?.Does anyone have asssociated Lupus and/or Raynauds ?

[Pippydo]

At least you now have a diagnosis and can start treating your Sjorgrens, I’ve had it for 25 years mainly very dry mouth and eyes but 4 years ago a CT scan discovered it is now affecting my lungs in the form of L.I.P. I’m on treatment for that alongside Hydroxy. Please just make sure that they keep checking your lungs, unfortunately mine weren’t checked at all so things got quite bad but are now stable after treatment and I’m having lung tests every 6 months. Best wishes to you!

[LindyK in reply to Pippydo]

What is L.I.P.?

[Pippydo in reply to LindyK]

Lymphocytic Interstitial Pneumonitis, quite rare but a direct result of Sjorgrens. I also suffer from Reynauds, chilblains on toes and white painful fingers not had any treatment just have to manage it but has been especially difficult in this recent cold snap as I still have to walk my dog! Sheepskin gloves and hand warmers help only so much!

[PURPLECROCUS3 in reply to Pippydo]

I have had Raynauds since 1995.My toes on my left foot are cold and tingling .Raynauds ?My joints have become more painful in the last few weeks=mostly shoulders.hand,back and sternum.

[Chris21 in reply to LindyK]

think its lymphoctic interstitial pneumonia.

[PURPLECROCUS3 in reply to Pippydo]

Hello Pippydo

I was feeling apprehensive about my appt today.and I was right to be.My GP treated my hand pain (ligament damage)with a steroid injection and whilst he was getting things ready ,he showed me the positive blood test on his computer and then said"you don't have Sjogrens or Vasculitis" Thought this due to blood spurting from my hand .through "holes in my skin(look like little craters).I have had the dry mouth for several years and prescribed a gel and as usual Gp does nor consider my symptoms as a whole.I asked him for a CTscan which he declined and did say "do you want me to refer you to Rheumatology." who have refused to see me in the last 4 years.`The last CT scan I had was he said In August,I don't recall having one then.This Gp became my GP 4 years ago and when he took over my care he never went through my medical history with me as I expected him to ,In the beginning assumptions were made and referrals to gastroenterology,rheumatology and bone clinic were all declined(I guess because of what my Gp told them).I have breathlessness since February which he treated as Angina which was ruled out by cardiology and nothing else considered.I struggled all the way home not to cry.I really thought after all the time ,I was going to get a definite diagnosis,.

[Pippydo in reply to PURPLECROCUS3]

Gosh sounds like you’ve been through the mill! I often find doctors etc quite dismissive, I’ve paid out for a private referral in the past just to get some answers so maybe that would be a good investment if possible. Wishing you well.

[FlowerWoman]

hello, I’m so glad you have finally made some progress with this. I can really relate to the long and frustrating wait for answers. Unfortunately, in my experience primary care practitioners don’t understand Sjögrens, and even many rheumatologists aren’t great either. It’s a good idea to get armed with information, but there is a lot out there and it’s also easy to get overwhelmed by it. A place with lots of information is sjogrensadvocate.com written by a knowledgeable American medic who has the disease. It’s worth having a look at Sjögrens UK website as there are links on there (and joining if you are able). Expert patients also has a Sjögrens group who are knowledgeable and supportive. Good luck with it all.

[LindyK]

I have all the clinical signs and symptoms of Sjogren’s and have had negative bloodwork. I believe I have it. Rheumatologists are not knowledgeable about it I have found. I suggest looking into low dose naltrexone (LDN).

[PURPLECROCUS3 in reply to LindyK]

Lupus,Acromegaly and Pagets Disease of the Bone can all be sero-negative.The Endocrinologist I saw confirmed that Acromegaly can be sero negative and she and another Endocrinologist both confirmed the changes to my facial features(bone pain and deformities)by comparing "before and after"photos .I have all the symptoms of the above three conditions ,I told my GP he can say what he likes,as far as I am concerned I have Lupus.Pagets Disease and Acromegaly because other GPs made diagnoses and I have all the symptoms..He recorded in my records " I agree she has symptoms of Lupus,Pagets and Acromegaly and that they are sero negative.that was over a year ago and now he is saying "YOu dont have Lupus.Pagets or Acromegaly,"If it was not for my dogs I dont think I would be here.

[Chris21]

Hi, by the time you have read my post you may have already seen doctor.

I started with lupus sle with overlap of sjogrens, this has gone on with other conditions added, raynauds, sticky blood and PBC. over the years Ive found in the medical profession sjogrens is the one that draws blank looks.

in my opinion all my problems are more down to sjogrens rather than lupus, if you compare the symptoms of both disease, they are very similar in many ways and treatment tend to be same tablets. The only ‘add’ on for sjogrens is eye, mouth and possibly vagina for dryness.

whilst I have this diagnosis, my daughter is diagnosed with sjogrens and when she says ‘this/that hurts or has something wrong., i usually can associate with what shes says.

I guess what Im trying to say is, if you already have a diagnosis of lupus, dont worry if the doctor doesnt come up with anything remarkable. 😊

[PURPLECROCUS3 in reply to Chris21]

The GP I had up to 1998-(I moved home) mentioned Lupus back then .he had diagnosed Raynauds 3 years before .I have a dry mouth and two weeks ago my left eye was quite red and I thought it a burst blood vessel as I have burst blood vessels in my nose.

The "butterfly rash" typical of Lupus happened on exposure to the sun and I cannot tolerate heat of the sun or my hairdryer on the top of my head.

w e know our bodies and what we feel yet doctors and consultants persist in saying "she feels she has...." when I know what I have wrong, and refer to my symptoms as "her concerns".

[Chris21 in reply to PURPLECROCUS3]

did you get the results you needed today?

[Chris21 in reply to Chris21]

ive just seen what you wrote earlier. so frustrating with doctors! dont give up, just keep going back and make a nusance of yourself until they do listen! x

[LindyK in reply to Chris21]

I stopped going to doctors because what good does it do to pay someone who doesn’t listen, who is arrogant and condescending, and who doesn’t care about trying to help you? I’d rather spend my money helping myself.

[Chris21 in reply to LindyK]

I agree, I dont go to the doctors unless i need medication thats not obtainable over the counter. But if you want a diagnosis of whats wrong what can you do, if youve no money to go private? cause even then its not a guarantee you dont get an arrogant person.

[PURPLECROCUS3 in reply to Chris21]

i have been battling with them since 2011.I blame in part the NHS for implementing a scheme where when a gp makes a referral ,the department the referral is made to decide whether or not they see the patient often dismissing the patients symptoms.My GP should be accepting what I tell him not what some consultant who does not know me and has not been told the correct info ,claims.

[FlowerWoman]

I’m so sorry you’ve had this set back. I’ve lost count of the number of times I left a GP surgery/rheumatology department in tears having been told I was just anxious and the “worried well”. Incredibly frustrating. Once I had the name Sjögrens I found Dr Elizabeth Price who saw me privately over zoom. Now I have her word for it others do at least accept the diagnosis (I had a positive lip biopsy, this wasn’t pleasant and took a long time to heal, plus has caused more damage to already struggling glands, and I think they can now scan instead which would be preferable). Now, many years on from symptoms starting I am showing “weakly positive” blood results. Unfortunately even with a diagnosis knowledge is poor with medics thinking it’s a nuisance dryness disease and denying my bronchiectasis is anything to do with it (I’m a non smoker). So it remains an uphill struggle but I’m now commuting to Great Western hospital in Swindon to see Dr Price annually on the NHS (it’s a long round trip but at least I don’t come out crying!). Oh and yes I have Reynauds and gastritis. There is also a specialist clinic in London under Dr Nurhan Sutcliffe but I got rejected by them, not sure why. There are also support groups under the Sjögrens UK banner which can help reduce isolation with the disease. I really hope you get a breakthrough soon x

[PURPLECROCUS3 in reply to FlowerWoman]

thank you for your reply,I dont think my GP will ever budge,.he is fixated with dismissing my symptoms and on not telling in referral requests the true reason for referral,

[FlowerWoman]

Incredibly frustrating, I’m afraid my local rheumatologist is the same. There are useful tools on the sjogrens advocate website which can make it difficult for even diehard naysayers to argue against. Another trick is getting in to see a locum when your GP isn’t available, or just ask for someone else for a second opinion. I feel your pain.

[PURPLECROCUS3 in reply to FlowerWoman]

i had a rheumatologist in 2021 dismiss my symptoms that i was referred for and treated two of my other problems ,then claimed he was not dismissing my symptoms just saying they are not Lupus or Pagets but he did not consider any other conditions so was dismissing my symptoms.I found out today that my GP had misled me re a referral to the Bone Team,I received a letter from the Bone team physician which said "your GP has never made a referral to our hospital."Time to "have words"