Dismissed by Rheumatology department yet again, Erythromelalgia - lupus? hydroxchloroquine

[Skulls570]

After being referred to Rheumatology in August 2023 by Orthopaedic department because of my hand symptoms.

Was seen by Rheumatology in January 2024 where I was misdiagnosed with Fibromyalgia a condition I don’t have as I have never had widespread pain or tender points, told to take amitriptyline and get a good night sleep and was shown the door!!

Was referred to Rheumatology again and was seen by Other Consultant in March 2024.

Clinically suspect arthralgia was the diagnosis at this point as my mother has rheumatoid arthritis and my father has spondylitis therefore a watch and wait to see if my symptoms would develop.

My symptoms did develop-

Joint swelling and pain. Stiffness especially in the morning. Especially in PIP + DIP joints. Swollen fingertips since January 2024 and loss of sensation in them. Joint swelling in hands, toes, knees and elbows.

Hands are deforming especially my right fingers and happening in left hand.

muscle pain and swelling.

bruises on my body especially the legs and have no idea where they have come from.

Skin issues- including thickening, change in colour, skin tightening especially around joints in fingers and toes. erythema patches and changes to my nails.

Blood vessels- development of a rare condition of Erythromelalgia in my feet but especially my right hand but now has started in left hand and both hands are getting worse.

Other symptoms include-

Dry eyes, dry mouth, fatigue, mouth ulcers + dry lips, night sweats, weight loss+ no appetite. Depression, lack of energy + for life, I don’t feel like me anymore it get irritated easily, angry and I’m not a happy person anymore.

Clinical diagnosis at the time I have-

Clinically suspect arthralgia, Positive ANA speckled pattern 1:80, equivocal cn-1a antibodies which the consultant will not re test. As of March 2024 and have never been repeated. persistently low c4 complement with borderline low c3 complement. Neutropenia with 3 time this year. Gilbert’s syndrome with affects my CRP.

After seeing a private rheumatologist his advice was that it was EM and Palindromic Rheumatism. His suggestion was to start a trial of hydroxchloroquine. Where my GP agreed with this but as it was a private recommendation he was need the approval of NHS Fife rheumatology department to write the prescription for this. Where my GP wrote to The consultant in nhs fife personally to do this as part of a shared care arrangement but he never replied.

Private rheumatologist also wrote to the consultant at NHS fife with he’s recommendation and advice but that was dismissed too.

Been under Rheumatology care since March 2024 with referrals to dermatology department where they have completely dismissed me and a MRI on my hands in September 2024 when my hands weren’t flaring.

I have yet again been dismissed by Rheumatology Department and put back to my GP care to manage a rare condition of Erythromelalgia - where no investigation into seeing the cause of this condition where it has been linked to autoimmune condition.

Was supposed to have a 4 month follow up appointment at start of December 2024 where I was hoping to discuss my symptoms getting worse and now affecting me at work but don’t have that opportunity to do this as I was dismissed and discharged without knowing only to find this out when I phone the rheumatology department appointments line to make my appointment that I am no longer a patient in the rheumatology service.

So yet again no one is listening And What I am supposed to do now?

I’m physically and mentally done

[MrsMarigold]

Hi Skulls. I’m so sorry. I had to read your post several times to take it all in. Most of us have horrible experiences until we finally get diagnosed. Although getting a likely diagnosis and then the ping pong of trying to get hydroxy? I’m in US so I can’t guide you about what to do next. Hang in there. Did you ever fill that amitript. script? Sleep is always a good thing after so much stress. I’m sure others will step in to guide you. 😍MM

[Skulls570 in reply to MrsMarigold]

Thank you so much for your support 😍 I really appreciate you taken the time to read my story and hearing others stories who have had the same struggles helps with knowing I’m not alone

[MrsMarigold in reply to Skulls570]

You absolutely are not alone. The struggles you are facing, mentally and physically are very real in our world of trying to get properly diagnosed. We can listen and help guide you. Can you go back to the private Dr. that you saw?

[Skulls570 in reply to MrsMarigold]

Thank you 😊 having the support for everyone is amazing. It’s such a lonely place but knowing that so many of us have gone through similar experiences puts things into perspective that it does happen which it shouldn’t.

Yeah can go back to private rheumatologist, the funny thing is private Rheumatologist trained the NHS consultant that dismissed me but also the advice he recommended.

Private rheumatologist has over 20 years experience as a consultant but the NHS consultant only qualified in 2023 but was quick to dismiss his old boss advice.

Thanks so much for your support 😊

[StriatedCaracara]

I needed to go private.

Private rheumatologist prescribed hydroxychloroquine. When we found hydroxychloroquine worked, then in clinic letter they asked GP to prescribe. GP then used share care agreement with private rheumatologist.

Never had faith to go back to local NHS hospital.

My diagnosis UCTD, I have lupus symptoms, possible a bit mixed, a lot happening after covid infection March 2020.

Local NHS totally dismissive even though had 1:320 speckled ANA and very low VitD levels. Guess did not meet *2019 SLE Classification criteria intended for research only but seemingly now used by some to diagnose.

(*Another specific blood giving 4 points needed as unless have lupus nephritis highest scoring symptom is only 6. Only one symptom and one specific blood result can be scored. No cumulative score as with' more than 4 of 11 symptoms' system used in the past.

10 points needed for SLE.)

[Skulls570 in reply to StriatedCaracara]

Hearing everyone stories just makes me feel terrible that yous have been treated this way and has been going on like this for years, it’s an eye opener. Can see why it takes 6 years to be diagnosed especially when a person needs to tick all the boxes for them to be diagnosed even when everyone’s symptoms are different.

Will try to get another private appointment booked and see what he thinks.

Thanks for your help 😊

[StriatedCaracara in reply to StriatedCaracara]

Just including a link to a table that is part of the 2019 SLE Classification criteria intended for research only but used by some to diagnose.

If you zoom out you will also see a symptom column to the left.

Positive AntiNuclear Antibody (ANA) is a gateway criterion at the top.

Only one item can be scored from left and right columns.

A total score of ten being required.

ncbi.nlm.nih.gov/core/lw/2....

[PURPLECROCUS3]

I cna associate with you.have most of the same symptoms as you and a lot more besides.I have been battling for diagnoses since 2012 when m y then GP referred me because he thought my symptoms were something else besides my Fibromyalgia.Diagnosed with Lupus by two GPs and based on ,me having more than 4 of the symptoms of Lupus and the facial rash typical of Lupus and acromegaly -changes to joints and bones and Pagets Disease with it's many symptoms- including sleep apnoea,fatigue ,skin rashes,carpal tunnel syndrome ,hearing ,loss and more.Rheumatology refused to see me as did Gastroenterology and the Bone Team-dont know where else to go from here.

[Skulls570 in reply to PURPLECROCUS3]

Just can’t understand why Doctors as so quick to dismiss people. I would have thought that the reason they became doctors was to help not to make the situation worse because we don’t all fit into the same box when everyone’s disease is different. We are the only ones suffering when they play god with our lives.

Thank you for sharing your story 😊

[PURPLECROCUS3]

Hi Skulls570.Totally agree-He persists in non conclusive scans and blood tests and does not consider my symptoms as a whole

I called the surgery this morning to ask for a repeat prescription and got the last available phone slot with m y GP.When he called I also told him that I thought my vomiting the other day was actually a result of blood from a nose bleed -due to a burst blood vessel as when I was coughing up what i thought was cos of acid reflux ,my nose was spurting blood from burst vessel.He said don't remove the clots .I use a nasal rinse which he suggested I use to clear the blood clots.I noticed my eye was red again and wondered if that was blood seeping into my eye from my nose?I have another slot booked on the 25th -as this was the first available one .I will ask him for a face to face appt and tell him he has to consider my symptoms as a whole and for the cause of my abdominal distension/pressure,feeling full and all preventing eating.Lymphoma,Acromegaly and Lupus all can cause these problems but he says I dont have Lynphoma or Acromegaly and he has not definitely said I don't have Lupus.I am awaiting the results of an oesophegeal manometry I had a month ago ,before I can go any further with the gastroenterologist.

[PURPLECROCUS3]

Dry eyes, dry mouth, fatigue, mouth ulcers + dry lips, night sweats, weight loss+ no appetite.

I have these symptoms -not the night sweats though-.Have absolutely no appetite and eat because I need to not because I want to.Symptoms of Lupus.?I have had 5-6 episodes of sudden unexplained weight loss in the same number of years and no suggestion to cause

[Skulls570 in reply to PURPLECROCUS3]

Wow 😮 just sounds awful, can’t believe your going through all this it’s just terrible how your are being treated! Clearly something is not right, anyone with half a brain could tell you that but your made to suffer!!

Had a call back from the clinical manager of rheumatology today but the rheumatologist in question is not backing down and stands by his decision to discharge me. Their is another rheumatologist the clinical Lead and she’s going to ask if he will see me but he’s on annual leave till start of December so will have to wait but I’m not holding out much luck as he probably not see me.

But in the mean time she told me to get my GP to re refer me yet again, stating my worsening symptoms, then have to wait to be seen.

What a system, this is what the nhs does to patients, leaves them suffering.

[PURPLECROCUS3 in reply to Skulls570]

I made a complaint in 2022 about the rheumatologist that diagnosed my Fibromyalgia in 2005 and as a result saw another who was just as useless.Did not ask or address my symptoms but treated two other conditions with steroid injections.I lodged a complaint abotu him too because of the ludicrous comments he made.I met with the lead rheumatologist back then who was supportive but he has now changed job roles.so am going to write to the rheumatologist who responded to my GP and if I can find the name of a lead rheumatologist -them too,.I blame the NHS who introduced an "advice and guidance scheme" where the consultants decide if they see the patient.so for the last 3 years all i ahve had is rejection by the Rheumatologists and even more so-gastroenterologists

[Skulls570]

just a wee update -

Had a call back from the clinical manager of rheumatology today but the rheumatologist in question is not backing down and stands by his decision to discharge me. Their is another rheumatologist the clinical Lead and she’s going to ask if he will see me but he’s on annual leave till start of December so will have to wait but I’m not holding out much luck as he probably not see me.

But in the mean time she told me to get my GP to re refer me yet again, stating my worsening symptoms, then have to wait to be seen.

What a system, this is what the nhs does to patients, leaves them suffering 😡

[PURPLECROCUS3 in reply to Skulls570]

absolutely.There is no care anymore and the NHS think the consultants know the patients better than their GP does or GP should do.MIne acknowledged breathlessness and fatigue and assumed Angina .when that was ruled out he did not consider any other cause.My GP referred me 3 times to the bone team and three times they refused to see me.GP accepts their excuses and in one instance I know he did not tell them my actual symptoms/problems.I hope you get to see the rheumatologist and get the help/treatment you need/.

[Skulls570 in reply to PURPLECROCUS3]

Yeah your right a hospital shouldn’t be able to refuse to see you when a GP refers you. A GP is referring you for a reason so that should be enough. Don’t think it’s right that departments in the hospital can pick and choose who they see, if there’s a referral for a patient they should be seen.

hopefully he will agree to see me but not holding my breath but If he doesn’t I will be putting in a formal complaint.

[PURPLECROCUS3 in reply to Skulls570]

i have lodged a complaint .re those who report scan results and say "...... appears normal" or "no evidence of eg Pagets Disease" or consultants saying "she feels she has.....".not " she does have ........".Its not all about blood tests either but symptoms.

when a rheumatologist said "Pagets Disease can take years to develop in bones and that an Xray taken two years ago is not likely to show diseased bone".they are putting people s health at risk.I was looking through some old GPand rheumatology letters and "Lupus" was mentioned ,.At that time-1998 -I was only diagnosed with Raynauds and Sero-negative polyarthritis.