I have been having investigations for ANCA Vasculitis for the past 7 months, but been having ongoing health problems for the past 10 + years. (Untreated)
I was referred by my GP to a Vasculitis Specialist in Birmingham Queen Elizabeth hospital but yesterday's diagnosis of SLE was quite a shock.
My symptom list is exhaustive, & most of it tied in with Vasculitis, but what confuses me the most is I was tested for lupus to begin with. & all of my results were overlooked.
I paid for my extensive blood tests privately as my GP was neglectful, I was denied the lupus screening tests & decided to go ahead by myself. As I was sick & tired of feeling so poorly
I've had a positive ANA for 10 years & my doctor said it was nothing to worry about. My WBC has always been extremely low
Recent bloods from Feb 2017 were ANA Positive with speckled pattern titre 1.80
Positive Anti Ds DNA
Moderate/positive Anticardiolipin
I will share my first post that I put on on Vasculitis UK as I think some of you will understand my results more than I do.
So now I have SLE I'm due to see my GP on Monday the 5th August.
the Vasculitis specialist yesterday suggested that I should start treatment of Hydroxychloroquine.
Through out my whole ordeal with procedures & tests I've had no treatment. Just got by with paracetamol & GORD PPI's.
it's been an exhausting journey but I feel lucky to have a diagnosis its been a very long journey for me.. despite the 10 years of constant battles with my GP demanding for blood tests, being ignored & screaming to be heard, being denied of any help what so ever I spent the best years of my life suffering. No medication, no referrals to a rheumatologist, no scans, x rays. Just antibiotics.. that had no effect apart from hurting my tummy more
I had a gastroscopy on the 2nd August for GORD & excessive Gastric reflux, Stomach & intestinal issues also issues with my large bowel & unable to eat solid food without vomiting. Even drinking water hurt, So I am on a liquid diet as I am struggling with eating. I became full after a few bites & couldn't stomach anymore, I have lost so much weight & in a lot of pain when it comes to eating. It radiates from under my left rib cage and around to my back & had a dull ache in my left shoulder, I also get spasms in my stomach, really loud gurgling sounds & my stools have been different, orange with stringy mucus.
(Sorry it's disgusting)
I'm waking up at night chocking & unable to swallow, I've had GORD for 14 years was left untreated for many years & for the last 2 years I've been taking lansoprazol 30mg. Now 60mg due to the amount of acid. Feels like I have a lump in my throat, it's very distressing & painful I've had Dental issues with entire tooth erosion, restoration work to build up my teeth, TMD, multiple tooth abscesses. Erupted Wisdom teeth, throat lesions & now recently I have a large brown pigmentation patch on the surface of my mouth just where the main vein is under my tongue.
I'm waiting to hear from the oral facial surgeon for skin Biopsy.
I couldn't go through with the gastroscopy in the end, I had a terrible panic attack I was standardly sedated & had throat spray but I didn't react well & I just kept gagging, I was held down but I kept pulling the tube out, it took 6 goes before the endoscopist abandoned the procedure due to the safety of myself & the staff.. it was a terrible experience.
I was due to have Biopsies taken, but now my GP has to book it in at my hospital in Cheltenham & I need to be put under General anaesthetic as it will not go ahead again with just sedation & throat spray.
Other symptoms
Weight loss
Extreme fatigue
Skin rashes, multiple lesions on limbs
Lesion Ulceration on arms & legs
Joint AGONY knees hips shoulders & now elbows
I also have hyper-mobility in all of my joints.
Feel sick all the time
Asthma
Headaches /migraine
Chronic sinusitis
Tiny Multiple lung granulomas
Protein in urine
Night sweats very bad
Swollen legs & pain when walking eases with rest
DVT Doppler test result 860! Couldn't find the clot, but ended up having a suspected TIA.
Cardiac first degree heart block, episodes of AF resting heart rate is always above 120.. rapid heart palpations
Numbness in hands & feet big toe completely numb now
hair Loss & thinning doesn't grow
Metallic taste in my mouth like I've been sucking on a 2pence piece.
Weak tired & just not feeling human anymore.
Kidney stones
Reoccurring infections in my left kidney bronchitis & respiratory breathing problems
High blood pressure but always used to be low
The list in endless guys, but I hope when I start my treatment I can have a better quality of life.. because I've just been existing,
& hopefully I can have a better understanding now I know the name of my disease & I can educate myself & adapt to living with it.
Thank you for taking the time to read my post. Im sorry if I've rambled on to much, but it would be amazing to hear back from some of you who can relate to what I'm going through, it's a very scary place to be.. I'm in the unknown.. eeek ☹️❤️
Here is my first post from V.UK
The bloods I had done & results prior to Vasculitis investigation proceeded.
Oh Laura what an awful journey you have had, these past 10 years.
Getting a diagnosis is a blessing- hopefully. There are many here who suffer with gastro issues, I do to only the extent of gastritis. ' Nexium' helps with that unless I am in a full flare then I up the dose of prednisone from 5mg to usually 7.5-10mg if needed.
You will get replies and will feel comforted I hope, that many here empathise, as I do.
When you start the prescribed medications specifically for SLE, you should feel much better. Whatever you are given, it can take 6 weeks for effect.
It's been a tough journey but I do feel lucky to get a diagnose. & it is a blessing in its self, because now after all these years I get to start treatment. It's been diabolical getting by with just the standard painkillers. Now they've found the root cause to one specific disease I can find relief knowing that the medication will be suited around me.
Jeez I can empathise with you all who suffer with gastro It's barbaric! I've heard of Nexium my mum takes them now. There too big for me as I struggle with taking tablets. I've recently been given some anti nausea medication in a liquid form called Metoclopramide which helps as I feel sick most of the time !
I have only had steroids once for my asthma enough for 3 days. But I've been told they are little miracle tablets. I hope to be put on them as I felt a little more human for those 3 days.
I appreciate everything in life, so any replies I get will be like gold dust.
Ohhh I can't wait to feel better I've waited so many years to start treatment & I will be extremely patient whilst waiting for it kick in.
Welcome to the forum and I'm so sorry you have been thru the mill one way or another to achieve this long awaited lupus diagnosis. Sadly for so many on here it can take a similar amount of time for diagnosis and years of suffering that you can't get back!. Your in good company so have come to right place and I'm sure you will enjoy being here knowing your not alone!.
I do hope the Hydroxy helps and you start to feel better. You must be relieved to finally get a name and validation for all your suffering.!. Keep us posted how you get on. X
I wasn't quite sure what to write as I've been on the other forum for a while, & all my information was on there so I felt like i bulldozed everyone with my lonnnng story. Haha.
It's always so comforting knowing your not alone. ⭐️
A few of the friends I made in v.uk said Hydroxy is the first line of treatment for lupus ? And some have been on it for other conditions for years which was uplifting. I hope my stomach/body can tolerate it.
I think I have to try extremely hard to push my Emetophobia aside because I just want to get better.
YES ! I sat back in my chair & thought after all these years I'm not mad, & all those that doubted me can watch me take the biggest bite of the cake we all know when something is wrong with us & I'm glad I persisted in finding out what.
What an awful predicament to be in, and I'm shocked your GP ignored the tests you had done. I'm sure you've had a thorough look around the site now but given your symptoms I thought I'd summarise the bits I remember that might be relevant.
- If you've got stomach issues, the Zentiva brand of hydroxy is felt by many of us here to be better. You might have a bit of a fight to get prescribed it but worth it.
- I had awful Gerd and managed to control it by diet. It sounds like you've got some horrible issues with your gut that need to be looked at. A nutritionist might be able to help you. I've personally found that medications for GERD don't help, and in fact made me quite ill, though some may have a different experience here.
- For those of us with delayed referrals, the London Bridge Lupus Clinic, if you are anywhere near, is a great resource. You can get a consult for a 1 hour £230 with some incredibly knowledgeable docs and prescriptions if you need them.
- Has you doc discussed with you a short course of Prednisone (for gut problems, coated only)? Hydroxy takes a while to pick in. Lots of discussion on the forum about the pros and cons. I was in a pretty bad way and decided to take them, and in a few days it had dealt with about 60% of the symptoms (while giving me other ones at high dose, but it was a bit of an emergency).
If you search the forum, on all the things I've raised, there are really informative discussions. It might help you to navigate some of the poor information you are getting from your doc. I'm sure the forum administrators will be able to point you to some useful info too.
You are right, Zentiva brand Hydroxychloroquine is the better one. I take mine with a small glass of milk. The first few weeks I had a very gurgley noisey tummy but it does settle down.
Hey Wendy I'll make sure I ask about that brand. You ladies know what your talking about so I salute you. Did it make you vomit? This is the only thing I'm weary about x
Hello Laura. You've had a terrible journey to get to a diagnosis, and I feel for you very much. I hope the hydroxy will help, as it has done for me. The gastric issues I share. I managed the endoscopies and rather envy you getting a general anaesthetic for one, which needs to be done soon - very soon - I had to have oesophagul biopsies taken, and now have an oesophagus which is scarred and narrowed making the problems with eating worse. I'm still underweight.
I suggest you put in writing to your GP the blood results and other issues which have been overlooked or dismissed.
At least my new GPs are insistent that their generalised training does not give them the expertise to deal with many issues, and refer me.
Welcome to the forum. I'm so sorry you have had such a rough journey in getting a diagnosis but at least you now have a name for the condition that you have been suffering from. That in itself can be a relief.
You couldnt have found a better group to offer support. Please post away as much as you need about anything, you will always find help and support here.
One thing that I was wondering is, will you be changing your GP? I know you have a lot to think about with your new diagnosis but it sounds like they have been pretty negligent for a decade. You've been diagnosed with a chronic illness that needs proper attention. I think everyone on this forum would agree that a good GP is worth their weight in gold, so if you aren't getting the care that you need then maybe consider switching practice? You need to have confidence in your GP now more than ever.
Switching my GP was the best thing I ever did.
Good luck. Be kind to yourself in the next few days, you've had a tough time.
Yes, My GP is also my Families GP too. I saw a few others in my surgery over the years & I have experienced a lot of issues with them. I guess it felt personal as I always walked out with nothing & no direction from A2B.
I have sent off for a booklet I would like to understand about lupus. As my head has been filled with "Vasculitis" data. 😊
I think my main concern now is after being referred to a Birmingham specialist my doctor was quite relieved to see me go. It is like getting blood out of a stone. & the reason it's taken so long is because of them. I don't want to put my life in there hands again.. but maybe just maybe this time they might have a tiny piece of empathy in there heart to help me.
So yes will request about Zentiva. & I'll fight for it, i guess I've been fighting for my life for years I'll google that so I know what it is 🙈 do you know I'm so glad to hear Hydroxy is good.
My GORD has only become worse due to one specific thing. I posted this a few months ago, & it's caused me MASSIVE problems ever since.
My partner of 2 years knows how bad my GORD is on a daily basis. We both had started a new healthy unprocessed diet so I could eat fresh. See if that made me feel better. He cooked one eve, eating a way I noticed something didn't agree, cut a long story short, he put a whole scotch bonnet chilli in the sauce.
Now I can barely eat a mild curry without suffering horrible back flow.
Had to stand up
Throat felt like it was closing over couldn't breath swallow
I had immense acid coming up, my stomach felt like it literally exploded.
You can imagine how it must of felt being a sufferer of gerd, 5 pillows & a wedge, & PPI's didn't help,
2 days later I couldn't eat or drink. So became dehydrated
Everything I tried to eat came back up & even water hurt.
It took a month to subside & I just had sips of shakes & soup to tie me over.
Now I have chronic stomach problems & that gastroscopy is paramount.
I would never eat a Scotch bonnet knowing how badly I suffer with GORD. It's dangerous for suffers. I found out on the Scoville unit that the heat is 350,000.
I was thinking of seeing a nutritionist. I think I will benefit greatly as I'm unsure what to eat and what will sit on my tummy. Great idea
My doctor has given me a generic type of my PPI & it doesn't work the same. Mine dissolves on my tongue. But these are horrible & make me gag.
I doubt my GP would refer me to London Bridge but I can ask. I'm from Gloucestershire so it will be quite a way to travel. But Birmingham by train was expensive. But I'll do what I have to do
No not yet, I would like to start on some prednisone as I've heard it works wonders. I'm glad to hear the Hydroxy had dealt with a percentage of your problems, I hope it works the same for me too.
Thank you that's wonderful, I'd be lost in the dark if it wasn't for forums like these. It's been such a great help already & I appreciate you taking the time to message me.
Hello. I've replied to your other post, in detail. Just wanted to say, there is a Lupus Centre of Excellence in Bath. Is that closer to you than Birmingham? Also, London Bridge is amazing. I travel there from Pembrokeshire. But it is solely private. You won't get an NHS referral. Your GP will still have to write the referral. But they have NO reason to refuse. You will have to pay for the appt. I went in April. I just had the appt and no tests. My GP has implemented most of my new treatment plan that was set out in the private doctors follow up letter. Only one point outstanding and I hope my local Rheumy will do it. A few of us here, use private when necessary and seem to run private & NHS alongside each other fairly successfully. Ask for the referral to Bath first, that's NHS.
I appreciate your kindness it's nice when someone understands your journey🌼
Me too, im very open minded and as I've spent the last 10 years on no treatment I hope it works. The only thing I have left is faith. I'm glad to hear it has worked for you. 💜
I feel for you- gastric is by far one the most agonising things, frustrating too. I simply take my hat off to you miss.. for managing the endoscopies. That's my 2nd time & I'm not going ahead with the 3rd time lucky under just sedation & throat spray. Awww i don't think any endoscopist/gastroenterologist would want to come near me with a tube unless I was asleep. The test is vital so they have no choice.
Gosh! I can relate to the struggle to eat. & sorry to hear that your still underweight. How can they treat a scarred & narrow oesophagus?
I did write to my GP prior to being referred to QEBH. I asked for my entire medical file. No abbreviated. Simply every page. & im
Still waiting that was just over 4 months ago.
Glad to hear your new GP's are good, it's nice knowing overs out there are being treated & respected. My hope in my GP only breeds misery.
Thank you so much for taking time out to message me, it really is comforting x
Thank you, aww yes I do, it's nice to know I'm not crazy & I hopefully now after all this time, results & evidence I'll be taken seriously. Most definitely a big relief !
That's really nice, it's so so amazing to been excepted where I've always felt like I don't belong anywhere.
It's very uplifting.
I have considered moving GPs since the beginning. I've been with the same GP surgery since the day I was born. They know me so well but treat me inhumanly. I always said once I have a diagnosis I would start medical proceedings. I was told if I leave my surgery I will loose all my records. Which I'm still waiting for..
But I know it's the best thing, my gps referral letter to the specialists was so crappy, & insulting. I received a copy & it hurt because I thought I was finally understood. So I think leaving is definitely in the pipe line.
I know that's what I thought, I do need a good gp more than ever now. Trust is a big thing for me after everything I've been through, I'm sure I'll find the diamond in the rough.
Aww that's so lovely thank you, I will be kind to myself, & please stay in touch your words have gave me that hug I so needed.
Just a quick reply, thank you for the compliment regarding my name. I love to see the tulips come out in the spring.
Let me assure you that if you move/change GP surgery your notes WILL follow you. They stay with you for life. Trust me on this. Not only have I worked in the medical profession for years I have also had to change GP surgeries about 8 times because of my work. It can take a little time to get the notes sent to the new practice but you can move with ease. Like you said, trust is a major issue and with a new diagnosis you may need a new start with someone who hasn't labelled you. I say this because there are similarities in our story where I was wrongly diagnosed and labelled until I took steps to seek a second opinion and got my diagnosis. Although I must say, my delay in diagnosis wasn't down to my GP.
On another note, and I dont usually lean towards stuff like this but it sounds as if there has possibly been a level of negligence on your GPs part. I feel a bit nervous writing this and its down to you but if you have suffered as a result of negligence, ie your GP not acting appropriately on your symptoms and bloods, you have 3 years to put in a claim of harm caused by negligence. And thats 3 years from when it was confirmed that there was something wrong. So that 3 years starts now. I'm not normally an advocate for this sort if stuff but you really have been through the mill and just wanted to put it out there.
It's a very beautiful name & the little story behind it bought a smile to my face.
Please there is No need for you to shush.. it's really really wonderful that you agree on there negligence. & for you to recognise my suffering, you have a good heart & I appreciate your wise words.
I've somehow survived in a what I feel a silent world, & on top of that all I received was there silent- treatment. I know this may sound a bit ott but I felt/feel as if my gps were/are just waiting for me to die.
I can't shift that feeling, & each time I go there nothing ever changes. They don't even look at me now, they just tap away on the computer & tut & nod in response.
It makes me feel like I'm not worthy to sit opposite them, or worthy of help. & I think when you've been mistreated for so long, you assume it's all your fault. Sometimes I wouldn't make an appointment as i knew it would be pointless. It's sad that I feel like that.
At my last appointment 2 weeks ago, i had been seeing the nurse every Friday to dress my infected Biopsy wound, that had begun to rot away, I walked in & she said so what do you want this time? " umm hi would be nice I thought!
I asked if I needed some stronger antibiotics as it didn't seem to be touching the infection, she said you do need a stronger antibiotic but were very sorry it's too expensive too be handed out for free" so your just be patient & finish the course. I couldn't walk or put pressure on it. My partner had to clean it everyday, as the smell just made me sick, & I felt so poorly with it. It's just about healing & that was about 2 in half months ago. So you can see the sort of attitude I get.
I think a new start sounds like a good idea. & it's horrible being labeled, ☹️
3 years from now... if I don't do it I will regret it for the rest of my life. It's a huge chunk of my life gone it's time I will never get back.
It's upsetting because i never ask for anything, & in regards to my health I'm sure a GP wouldn't let there children go through it, but because they don't care about me, I'm just a number. & they can dish out antibiotics when they religiously say in that surgery not everyone needs antibiotics don't ask your doctor for them it doesn't work on all bacteria. I became resistant due to the amounts that were given, it's just a shame that they couldn't of used that same amount of effort to refer me to someone who knows about Auto immune diseases & how it effectively help me.
Thank you for putting it out there. I feel guilty sometimes to think like this, but I have been neglected, & it's cruel isn't it ?! I'm only human at the end of the day and as I've been going there for 14 years & more & I'm still very poorly & much worse nowadays it shows they haven't done there best, they haven't tried. They've just left me to suffer & somehow thought I'd get over it & get better on my own.
I will win this battle & one day victory will be mine.
This forum has tons of helpful info about Lupus and (most important) good caring people.
Question: have they told you if it is possible to have both diseases? I mean Vasculitis and Lupus.
The reason I'm asking is because of your ANCA positive and granulomas.
I'm not sure how to explain myself as I'm not medically trained, but ANCA is not a test used to give a lupus diagnosis ... but it is part of Vasculitis criteria.
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