2017 and difficulty when my rheumatologist retired 🤦‍♀️

[Mimi1900]

My rheumatologist of 8 years retired and I was assigned to a new rheumatologist who I saw last May. My lupus primarily expresses itself as joint pain which had become very severe starting in January after a fall down the stairs following the flu which resulted in a bad sprain. The new rheumatologist ordered hand and feet X-rays for first time and there was evidence of an inflammatory arthritis. She wanted me to stop taking the hydroxychloroquinine and begin taking prednisone and make an appointment to start taking methotrexate. She did all blood tests for rheumatoid arthritis and they were negative, so she decided I had psoriatic arthritis because although my blood work was suggestive of lupus I could not have it bkz you can’t have lupus with an erosive arthritis. Needless to say after a lot of emotional turmoil I sought a second opinion and was told yes I did have lupus with rheumatoid features sometimes called “rhupus”. If inflammation was active she would recommend methotrexate. I refused an MRI due to the dye they inject (gadolinium) and waited until a rheumatologist could do a special Doppler ultrasound. It did show the erosion in my wrist but no active synovitis or other inflammation. So I remained on hydroxychloroquinine and saw her in Jan for more blood work. My antiDSDNA became positive for first time (I have been ANA and SSB- Ro positive for years but was ANA negative for two years following my diagnosis) and my C3 complement was a little low. Apparently this can be a sign perhaps of pending kidney problems. I go in early for another rheumatological checkup. My joint pain has been much better while taking cymbals a 40 milligrams. I would love to get off this roller coaster because due to the disagreement of my lupus diagnosis last year I think I don’t really have lupus. I have thought about just skipping the doctors appointment, stopping hydroxychloroquinine and continuing with cymbalta and acupuncture which has also helped. Any comments would be helpful regarding misdiagnosis of rheumatic diseases.

[Hidden]

It’s a tough one because you are clearly very well informed and to my mind it does sound as if you have Rhupus.

I was diagnosed 7 years ago with RA and put on various drugs including Methotrexate and Hydroxichloraquine as a double therapy - and I’ve taken 3 others besides. My synovial joint pain has all but gone now and I have no erosive damage or inflammation on ultrasound to date.

I was rediagnosed with primary Sjögren’s in 2016 under new rheumatology in a new hospital after relocation. The pattern of my ANA and some symptoms point more to Scleroderma but my lip biopsy was very positive and my ENA panel has always been completely negative. I’m Hypothyroid as well.

In a sense I do focus a lot on which rheumatic disease is the primary one for me. But as I’m seronegative (ie no ANA) in another sense I think the main thing is that I have I have very frank autoimmunity with high inflammation markers always. I find it easier simply to accept that I’m definitely on the autoimmune and rheumatic spectrum. After this I try to use my judgement about treatments by listening to my doctors and reading up, asking for people’s experience here and bearing in mind that I have extreme chemical sensitivities.

It’s a bit of a juggling act on a tightrope most of the time for me but I have learned the hard way to trust my own instincts first and foremost and not let fear of disease or of medications cloud my judgement unduly.

The name we give it is less important than how we approach autoimmunity I believe. So yes I’ve been diagnosed and yes this has

[Mimi1900 in reply to Hidden]

Thank you very much for your measured reply. My ENA panel has variously come up with autoantibodies indicating scleroderma, and myositis among other things. The antiphospholipid antibodies have come and gone as well as lupus anticoagulant. These doctor visits and blood tests have always generated a lot of anxiety and upset for me with the constant warnings to make sure my eyes are checked (due to hydroxychloroquinine therapy) without any resolution to my joint pain. I had never heard of fibromyalgia or that Lyme disease is often misdiagnosed as a rheumatic illness. I wonder now could I have that instead. I have lost a lot of faith in a doctors diagnosis of lupus because one doctor easily overturned a retiring doctors diagnosis at a good hospital which diagnosis (lupus) was then reaffirmed by a doctor at another good hospital in the Boston area which is highly respected for its rheumatology clinic. Yet if I had stayed with the rheumatologist who said I had psoriatic arthritis I would have been variously taking prednisone, a proton pump inhibitor, and methotrexate. I Have an upcoming appointment in April which I really don’t want to go to as now “my kidneys “will need to be watched closely” due to the antiDSDNA level. Of course I realize that this will just be more blood tests and pee in a cup and probably nothing will be wrong. But if there is something off, I understand that a kidney biopsy would then be in order. The thought of that freaks me out to be frank. When I’ve looked at lupus forums people seem glad and relieved when these tests are ordered, I unhappily have the opposite reaction.

[Hidden in reply to Mimi1900]

I do understand but I’m definitely in the relieved brigade when it comes to proper investigations. Here in the UK, specifically Scotland for me, the NHS is so beleaguered now that doctors are quite prepared to rely on guesswork to make diagnostic decisions I have found. So really, from my perspective, you are fortunate to get things checked out thoroughly - although I can quite see it’s daunting for you as well.

Rheumatology is a very inexact science at the best of times so if the tests that should be available, but often aren’t here, are put to use to clarify things - then that can only be good from my perspective. I guess, this being predominantly a UK site, this might explain to you why people here are often relieved to get proper testing eg kidney biopsies.

I’ve been misdiagnosed with RA, UTI Sepsis, Cholecystitis, Rosacea, Scurvy (?!) and dismissed in the past due to lack of proper tests. I’ve also had presumed diagnosis of autonomic dysfunction and small fibre neuropathy, Raynaud’s and essential hypertension made without any clarification through testing. Consequently I approve of testing!

[misty14]

Hi mini

I do feel for you trying to navigate this tricky time as your trusted Rheumy has retired. It is hard having to see a new one and build up a new relationship which takes time!. I had the opposite problem to you when my trusted consultant retired. A new Rheumy didn't agree with diagnosis or treatment and I had to come off my medication to prove I needed it !. This can happen a lot!.

Ultimately , no doctor can make you do anything you don't want to or are unhappy with. I would caution against just going down the alternative medicine route because your test results are highly indicative of an auto- immune illness with inflammation showing up which needs to be controlled!. Whatever name they put on it doesn't really matter as the treatment is the same!. The important thing is to stop this inflammation doing further damage!.

Also I would advise, try not to think too far ahead as you may not need a kidney biopsy and you've given yourself added worry for nothing. Your kidney function does need monitoring though!. I also wonder if it would help you to explain How you feel about testing to your new Consultant!. It might help you begin a new relationship with her?.

Anyway just some thoughts that I hope are helpful. Good luck for your April appt if you go. Keep us postedX

[Mimi1900 in reply to misty14]

Thank you Misty for the good advice about not borrowing the worry before I know if anything is wrong it just serves to make the weeks before the appointment hard for me. I am sorry that you don’t always have access to the tests you need and hope that the NHS system can work out it’s problems. While I know that I am fortunate to have access to some of the supposedly best rheumatologists and their tests it is a double-edged sword. Tests can often show things that will never become a health problem for an individual during their life but they will be treated for it bkz the test showed they had it and they don’t have enough data to know who it will kill and who it won’t, e.g., early detection of certain breast cancers and prostate cancers as well as thyroid cancer. These treatments often cause damage to the patients bodies, let alone the psychosocial impact on the individual. Also given the way health care is having so many troubles in the US visits here are about 15-20 minutes long with the doctor staring into the computer trying to enter everything into the electronic health record (EHR) which is supposed to make treatment better. When I started seeing my rheumatologist in 2009 he would actually look at me and I guess enter notes later. I have never undressed for a rheumatologist in the 9 years I have been seeing one. I guess they rely on the tests only, and whatever I remember to tell them. I guess undressing would take too long. I actually was relieved after my first appointment bkz the only doctor it doesn’t bother me to undress for is my gynecologist LOL. Although I did wonder how they could examine my knees (which always hurt and I always tell them about) through my pants.

[misty14]

Hi mini

I do so agree with you that tests are a double edged sword because you can be told things that you have that you don't really need to know specially if there's no treatment needed you can still worry!. I do have access to tests if there needed and I trust my medical team that they will only suggest them if there very needed!. I had a tough outcome from an angiogram ( heart clear) but it lead to a complication that I'm still suffering from 7 years later!. It's made me think so differently about tests!. I will also just say that I've been with my new Rheumy 8 years now and he has changed his initial attitude towards me and my illness greatly in that time thru me being very consistent with symptoms and being prepared to reduce steroids and try!. My blood results have not been as positive as yours despite symptoms. This kind of relationship change takes time to achieve and it's an added extra we can do without when coping with these difficult illnesses!. Hope you have a good weekendX