Morning everyone, just looking for advice and to vent a little.
I have posted a few times about my journey but finally thought I had got some answers. Quick recap- after years of being fobbed off by my GP, I eventually went private to see a rheumatologist who actually listened.
Initially he diagnosed UCTD with secondary Fybromyalgia and Raynaurds, fast forward 18 months to a visit, I mentioned that I had been plagued with post nasal drip, dry eyes, sore/dry mouth and sinus type headaches which periodically affected my vocal cords that much I would lose my voice for weeks.
On hearing this, he diagnosed sjogren's and prescribed Pilocarpine along with my other meds. This seems to have helped, especially with my sore mouth. Since then he has directed me to a Sjogrens clinic.
Two months ago I start with a flare, pain all over my body. headaches, post nasal drip and worsened, I lost my voice, but during this flare I started with a cough as well. It was very frightening. The cough was very aggressive, I would lose control of my bladder and bowel, it would make me sick, but worst of all it left me gasping for breath. It felt like my airways were completely blocked. I eventually got a telephone appointment with my GP who gave me antibiotics, they didn't work. I managed to get another telephone appointment acweek later and this time he asked me to come to the surgery, as he had read my notes, saw the Sjogrens diagnosis and wanted to check my lungs. At this point he gave me steroids which, within days, started to clear things up.
Fast forward two weeks - I went to meet my new consultant at the Sjogrens clinic who told me he didn't believe it actually was Sjogrens, as I didn't meet the full criteria. He still think it's UCTD, he has referred me to ENT and requested and Endoscopy. I left feel totally deflated, questioning whether it was all in my head once again.
Yesterday the headaches started again. The post nasal drip is as bad as ever and I'm terrified it's all starting again. It makes me feel so ill, plus I'm a GCSE teacher so talking all day in class, exams are looming and I've just gone back to work after 3 weeks sick leave.
Any advice would be welcome, has anyone else experienced this? Do I go back to the doctor now before it gets worse again, do I just hope it will go away - I just want to cry it's affecting ever part of my life, personally and professionally.
Sorry for the essay but I just feel so desperate.
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There is a parallel condition called sicca syndrome - Sjoegrens in all except the antibodies in the blood which are required for a diagnosis of Sjoegrens. It isn't uncommon alongside many autoimmune disorders and really it is immaterial as there is no cure as such, it is all about symptom management.
You might do better when you have such severe chest symptoms and breathing is that difficult to call 999 - the paramedics will see you at the time and that is preferable to waiting for a telephone assessment, there are other causes of DIB and cough besides an infection and the GP would have needed to see you and examine you to be sure.
And when you DO see a doctor face to face - don't gloss over the effect it is having on you. It is the squeaking wheel that gets the oil.
Thank you for replying, I think I have spoken to you in the past. I have never heard of Sicca Syndrome so will do some research on it.
Like many people on here it seems like we have a never ending journey. To be honest, I thought that I'd got to the end of mine nearly, so was totally floored on Thursday at the Sjogrens clinic.
I think what is hard is people look at you and think you're well. When I went back to work this week the comments I got were alluding to that, ' you look well, but you always do'. It kills me, it makes you feel like no one believes you doesn't it?
At the moment I feel like taking to my bed, I feel too tired to fight, but I won't and I will. The mental health aspect of it is soul destroying, I feel so sorry for my partner, but he is great and I really do make an effort for his sake.
I'm going to contact my GP this again week, I had to laugh when I contacted them at the start of this last flare. I called reception to explain my symptoms and the receptionist asked me to call back as she couldn't hear me! I felt like screaming at her, as that was my point!
Thanks again, it's great to ge heard and understood c
This isn’t quite so. Sjogren’s can often be seronegative but it’s still a full blown systemic autoimmune disease. This affects about 30-50% of sufferers and often has to be diagnosed by lip biopsy instead. Sicca syndrome is just dryness and is coded differently to Sjogren’s. Mine is classed as “associated” now because I also have Systemic Sclerosis but was previously diagnosed as primary and confirmed with a lip biopsy
Keep going back to the doctor.And explain you need face to face appointment because of your your voice. If they give you something that don’t work, need to let them know. Otherwise THEY assume it helped.
I have been diagnosed with UCTD. I have sinus issues with sore scalp, post nasal drip, sore eyes, raw feeling in nose.Three times have been checked for giant cell arteritis as the headache is mimicking GCA causing tender temple (although the area goes upwards above my ear towards where there is a ridge).
I'm at a loss also.
Rheumatologist suggested ENT referral which my GP made. Three months later it got rejected by ENT, who said I should go to Neurology.
GP then made the Neurology referral, which ended up being a headache clinic telephone call by a GP with special interest in headaches. Outcome GPwSI said it was migraine because it was one side only (guess uses NICE headache criteria grid). Hopeless.
Meanwhile eye hospital requested orbital MRI for choroidal lesion which I hoped would include temples the area of my headache, following their GCA referral..but of course it did not - pathway for outsourced quickly done MRI not flexible enough, (outsourced profit making / NHS cost saving not patient-centred medicine).
The only outcome of that was a bad reaction to Gadolinium. I think it ended up in my hand, and also my kidneys did not get rid of the gadolinium fast enough even though I drank many litres of water in the hours and days that followed. Orbital MRI showed nothing. Waste of time..and just got really incredibly whacky side effects to Gadolinium which again local NHS did not help me with.
Most recent eGFR was only thing they used to exclude patients, so it is the people who regulate the pathway that I would really need to fed info back to but found this impossible using feedback systems that exist though I filled in yellow card..
I have lost my faith in local NHS. Ridiculous pathways, silly criteria that miss things.
I learn far more from this HU forum, because many of us have the same issues, and listening to YouTube videos intended for medical students.
I have been harmed more than helped by local hospital trust. Being told my CTD symptoms were all in my head by local rheumatology was only the start of it. I only got a diagnosis by going private, and avoiding NHS second time around. I know there are others in the same boat.
Possibly it is the ludicrous cost saving pathways, criteria that only look at average patients who don't get adverse reactions, and ill thought through top managerial directives.
I feel safer staying away at the moment, particularly as scanning and operation stats they are trying hard to improve - crucially are they getting things right? Time will tell.
If I go to local NHS hospital appointments things just get worse, and I get really annoyed. Their letters are littered with really bad mistakes too, though I guess my GP is used to this.
I'm really worried about my tender scalp. It is probably vasculitis, but not the GCA type, following covid, afffecting my sinus and inside my nose even causing pain near my kidneys.
.. nobody in the many hours I have now spent trying to get this sorted has discussed it properly.
Just do ESR blood test and the one little spot, 'temple ultrasound'. End of day Results, negative, therefore they say it is migraine.
In my 60s and I think young doctors think all is age related too.
Praying for change. It is important for us to stand up and speak truthfully of our experiences to try to improve things. There are some great doctors too, but they need cloning - and many try hard in a system that is not working and is broken. 🙏🕊🤞🙂
I hear you... I'm 63, for several years the doctor told me it was anxiety or menopause, it made me laugh as I had my menopause when I was 33!
I've seen a neurologist, he was my first port of call, as the surgery nurse, not the doctor, as they were too busy see me, thought it was MS. The neurologist found nothing and said, "you know, your mind can play tricks on you"...
I also have problems with my scalp which spreads onto my face, along with ear pain. It's got to be something!
To add insult to injury, also have issues with my stomach, recurring bouts of HP and Diverticulitis. This last year I've had 2 colonoscopys due to bleeding and ongoing issues there.
I feel horrible moaning and keep reminding myself it could be worse. Tomorrow is another day x
My right side scalp issue I think relates to where I banged my head nine years ago, going over speed bump passenger on back seat hit head on roof / side of car as three of us on back seat.
BUT only got these issues last three years, maybe due to autoimmunity issues worsening after covid infection four years ago.
Should of have MRI nine years ago, after the accident, but GCS was fine, although my vision was split in half.
Now, the last three years, I get tenderness in a triangle area with the temple at the front and then going backwards upwards to the ridge, and downwards behind my ear.
Taking specs on and off, hurts and holding phone to that ear gives me a headache. My face feels numb over that cheek and sometimes it is difficult chewing because right side does chew, TM jont, gets affected. I do jaw exercise to try to relax the muscles. My right nostril can feel very sore and glassy inside.
Turning my head to left eases pain, and the more my scalp hurts the more I get post-nasal drip and runny nose.
Once I got three increasing then decreasing intensity waves of pain, that were intense and scary and matched my pulse..nobody is interested as it 'ain't their field', and GP knows referral system is hopeless.
Thinking cranial manipulation massage might help, but if it is an anerysm probably not.
I’m not surprised you’re frothing about this when your symptoms are so Sjogrens-like. Your cough sounds very like the one I had prior to starting mycophenolate 4+ years ago. I was diagnosed by lip biopsy requested by a rheumatologist - who saw that I had polyneuropathy, sicca and an ANA pointing more to scleroderma - with very high inflammation markers and elevated immunologlobunlins. I now also have systemic sclerosis which seems to have been evolving over many years.
Despite a diagnosis of Sjogren’s my cough and chronic sinusitis were largely misdiagnosed as asthma or sicca or ignored until my scleroderma antibody showed up. Then a GP sent me to an ENT again and this one identified silent reflux when his scope showed milky regurgitation and redness in my throat. So I switched from Lansoprazole to Esomeprazole and the cough eased up a lot.
This was shortly prior to my additional diagnosis of systemic sclerosis and I was told by ENT that Sjogrens too can cause silent reflux as well as GERD. I did have a sinus infection recently with terrible headaches but antibiotics have sorted out. I still haven’t resolved the lingering sinusitis although I try netti-pot every few days but nothing shows up to make me feel it’s infected again. I have a humidifier in my bedroom and this helps but I think mycophenolate, esomeprazole and famotidine have been great at preventing lung involvement for me so far.
I would say you need to see a rheumatologist with a special interest in Sjogren’s. I believe Dr Price in Swindon does lip biopsies to diagnose seronegative Sjogrens if you have any way of seeing her.
Thanks for your reply. Unfortunately I live in Yorkshire so Swindon is out of the question. Just a bit of background. After being ignored I wrnt private to see a rheumatologist. I did my research and chose one who is a specialist in auto immune conditions, is the head of a local teaching hospital and has an excellent reputation.
When I met him the first time he totally validated my symptoms and assured me that I was not imaging it, (by this time I thought I was going mad). He diagnosed UCTD. secondary Fybromyalgia and Raynaurds- I was so relieved. He set me of on meds which helped my symptoms greatly and put me into his NHS clinic.
Fast forward two years to a recent visit in February, I mentioned these other symptoms which had progressively worsened. That is when Sjogrens was diagnosed. On my last visit he told me he was going to send me to the Sjogrens clinic so the consultant there could keep an eye on my condition to check that I don't develop Lupus.
I went to see this new consultant on Thursday and he said I don't meet all the criteria for Sjogrens but would see me again, once I had been to ENT to which he would refer me... He said that my condition was UCTD.
I have managed to see the same GP over the last 2 months and he has been great. He has prescribed me Femotidine which I have just started taking and referred me for an Endoscopy.
I know it sounds pathetic, I got my appointment through within 9 days for this, but have decided to go private. They have attempted this before and I couldn't tolerate the procedure and they hadvto syop. if I go private they will give me a general anesthetic, but laughably to go private takes longer; at least I will get it done.
I have to be honest, I'm totally at a loss and don't really know who to believe out of any of them. I put so much faith in my initial rheumatologist, but was he wrong - is the Sjogrens consultant wrong? Someone actually suggested that because I went private and was paying, they had to diagnose me with something. I'm guessing that 'friend' doesn't believe I have a condition. I feel like screaming 😱.
Sorry for the essay and the rant and again, thanks for your reply x
Not at all. I’m in rant mode too but for me it’s about scleroderma gut and gastro here relying on 3 year old data and a 5 year old gastroscope biopsy to tell me that I don’t need another even with symptom progression and stoma surgery imminent. I felt like bawling at her that scleroderma gut can be as progressive as cancer and they wouldn’t rely on 3-5 year old year results prior to GI cancer surgery would they?! I looked into private scope here in Scotland and spoke to a lead colorectal surgeon last weekend about this when he phoned in reply to my online enquiry. But cost was prohibitive and he felt that a D2 biopsy probably wouldn’t be enough to diagnose pseudo obstruction.
I think sometimes specialists are overrated but I have seen the one in Swindon privately several times - once in person and once face to face and she really does think outside the box so in a different league to others. I think it’s odd when any rheumatologist focusses only on excluding one systemic autoimmune disease when there are others, inc Sjogrens, that are just as bad if not worse. Dr Price might at least give you a lip biopsy to clarify so worth the travel and might be worth thinking about because no one can dispute a biopsy diagnosis at least. Ironically she was the one who diagnosed my SSc but this was rejected locally until I traveled to Royal Free privately last year and saw world expert who diagnosed it “unequivocally”. She didn’t do my lip biopsy as I already had this with v positive result despite being told until lip biopsy that it was just secondary sicca
I have just looked at Scleroderma Gut, I had never heard of it... Sometimes do you not think that relying on old data is a way of not having to deal with a situation. Save the NHS money...
I started with stomach issues 20 years ago and it has been suggested that, that this was the start of my situation now.
I'm fortunate that I have private medical cover with Bupa, so cost is not so much of an issue for me at the moment. It will be in a couple of years when I retire though.
Thank you for your advice. I've not yet had a lip biopsy, the Sjogrens won't do it until I've been to ENT. It maybe worth a trip to Bristol if my insurance will cover it especially. At least its worth a conversion!
I'll keep you posted if that's OK, though it might be next year lol. In the meantime, take care and hopefully, you'll have better treatment that's currently being offered. It's such a mine field. Xx
In theory yes re the costs but not in my case - it’s far more expensive and risky for NHS operating on me for either planned or unplanned bowel surgery without up to date biopsy results than to operate to create stoma with wrong or outdated information.
In your shoes I honestly would recommend Dr E Price in Swindon as your Bupa would cover and no one UK will refute or disagree with her - she’s the BSR UK expert on Sjogrens and set me on track with my scleroderma too.
With UCTD everyone seems to worry most about it developing into Lupus but honestly it’s as likely to be RA or Sjogrens seronegative which are just as serious. Systemic sclerosis is “the heartsink one@ for rheumatologists I was told so I guess it’s not surprising that many of us take a very long time to get diagnosed with it even with antibody and severe GI confirmed. It took a world leading prof to recheck my nailfold capillaries last year for a 100% diagnosis.
I would just like to add one thing here with all the other good advice you’ve had regarding your chest pains and voice. I first became ill in my 40’s (I’m 70 now) with late onset awful Raynaud’s, lost my voice, occasional incontinance, nausea, cough/ choking and fatigue, weight loss amongst other symptoms. After visiting my gp who told me to wear gloves I stuck my head in the ground and carried on as some symptoms (the Raynaud’s for one) got slightly better but I was plagued with dreadful ‘migraines, fatigue, and dreadful problems talking and choking etc. I did visit the Royal Free a few years later (a friend badgered me, I do think I was frightened of being medicalised and because of loosing my Father to illness as a child). After a worried Dame Professor Black sent me for tests, I was diagnosed with RNP positive UCTD and have been seen yearly ever since.
The coughing and choking was helped somewhat by a PPI and I had scleroderma like damage to my oesophagus and evidence of reflux. But after a couple of years I had really bad attacks of chest pain always in the early hours and was diagnosed with Raynaud’s spasm of my heart. They gave me amlodipine which coincidentally helped my headaches. In recent years I’ve had these frightening attacks of chest pain on and off but anytime of day. This was diagnosed as oesophageal spasms and helped by a stronger ppi. Oesophageal spasms are known as being hardly different to the pain of heart attack and lead to visits to a&e. I don’t I believe have sjrogens (please excuse spelling!) and of course yours maybe for different reasons but thought this may help. Incidentally, when I was first ill I developed a horrible taste in my mouth. I could not stand tea. Also I find it astonishing they don’t give you sedation for an endoscopy on the NHS where you are. I always have it.
I now have worsening gut and bladder problems, Erythromelalgia, some autonomic nervous system dysfunction, blurred peripheral vision and bad hearing. I was told it looked like systemic sclerosis but they have decided it’s still UCTD.
I do hope you have answers soon, especially to the chest pain.
When I read some of the things other people are suffering with, I feel awful for moaning. I think I have multiple things going on, but they cross over so many conditions that I think medics, especially GPs, don't have the time or the inclination to help.
I have been thinking of contacting my rheumatologist and explaining what has happened. The doctor I saw last week is part of his team, so maybe they need to have a discussion...
Yes I’ve been comparatively lucky compared to some. You have some genuine issues you need answers too though. I know you’ve had some good suggestions here about people to see but I wonder if it’s worth you asking to be referred to the Royal Free Scleroderma clinic? They have lots of patients with UCTD etc. It’s the best clinic in the uk for coordinating all the specialties and you would get good sedation for your endoscopy! I’m sure you need shjrogens tests but I think you also need endoscopy, lung function and heart ecg too. I seem to remember it’s very quick from Swindon to London by train. It might be when you contact your rheumatologist she is planning these tests anyway so perhaps that might be best first though. It’s so annoying when they don’t work together.
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