Lupus re-diagnosis UCTD

[KeepingUpBeat]

Hello All, so when I last posted I had been to the rheumatologist Prof X and told my bloods were not suggestive of lupus but he did not suggest want condition could be the underlying cause of my symptoms. This morning he chose not to see me, instead I saw a very nice female doctor in clinical research. Prof X was in clinic, I suppose no longer a lupus patient I could be seen by a more junior doctor. Actually this turn out to be to my advantage because she actually listened and explained I have Undifferentiated Connective Tissue Disorder/Diseave with active features though lupus remains in my list of conditions on the letter she sent to my GP? She ordered a full bloods (which Prof X did not in January) and the results back so far show deficiencies; C-Reactive Protein 13.8 (H) (range 0-5mg/L), MCHC (g/L) 319(L) (range 320-260 g/L) and Haemoglobin A1c 45 (H) (range 20-41 mmol/mol). Once she has all the blood results she will ring me probably early next week. I would love to say I understand all of these results but alas do not. My GP has been asked to prescribe high dose Vitamin D which after 5 weeks will reduce but I have to remain on this supplement indefinitely. similarly folate is needed for 3 years then to be re-assessed. I am also told I am pre-diabetic and my GP should follow take the appropriate measures.

I have been referred for ultrasound guided injection into left shoulder, apparently I have to do a self referral for ortho for my knees OA because she could but she provided the contact details. I have joint pain in my fingers, wrists, groin, spine and feet. There are degenerative changes in the bones in my feet. I have not had recent scans of my spine and hands.

My GP referred me for urgent gastro in August 2023 at my local hospital which is a different one to the one attended for lupus/UCTD. Since then I have referral sent to other hospitals for the same thing but they have returned the referrals, one because I live to far away and the other said they are only seeing local patients even though this is the hospital I attend for lupus/UCTD and respiratory. Gone are the days you can choose which hospital you attend. My local hospital say regardless of the urgency they are dealing with their Covid backlog and have no date to give me when I will be seen. With her hands tied my GP has sent me for an ultrasound of my stomach which I am having on Monday and I am waiting for an endoscopy at another hospital I have no connection with but at this point I too am desperate to know what is cause abdominal pain immediately after food, nausea, heartburn and diarrhea for nearly a year.

It's hard to know if all of what is going on in my body is connected but until investigations are complete I think about addressing them separately but it is all very confusing. Has anyone else gone from a diagnosis of lupus to UCTD and perhaps back to lupus again? Osteoarthritis is wear and tear I'm told so does that mean the autoimmune conditions do not affect joints?

[IsleofWight1]

Hi Keeping Up Beat,

sorry to hear you’re having such a tough time, Unfortunately I can’t answer your questions but my consultant didn’t diagnose me for about 3 years. I eventually got a diagnosis of UCTD / lupus too.

I’ve found that besides the usual list of symptoms there are a myriad of others lurking around. I’ve been asking questions on here to see if my symptoms are UCTD related and lots of people reply that they are. I’m taken aback by the suffering many people have to put up with or fight for the right treatment for.

BTW Rheumatoid Arthritis is an autoimmune disease that affects the joints.

I hope you get some answers or at least recognition on here . Use the search button at the top of the page too.

Good luck x

[Bbmuso]

Hi, I'm CTD/(SLE) with inflammatory arthritis (RA) , to be honest I think it's all part of the same beastie of Lupus, (which since House), no one likes to say in the diagnosis word. Being diagnosed so uncertainly, used to really stress me out, but now I just accept that it seems to change regularly. I take HCQ, which for the most part seems to help, but I still never drop below 14 on CRP and still have ANA. If someone asks me now, I just say it's Lupus 'esque'.....

[KayHimm in reply to Bbmuso]

Love your description - lupusesque ! In fact, if symptoms and labs are more in the lupus category. doctors often say « lupus-like » autoimmune disease. Mine do.

[CecilyParsley]

Hi Keeping Up Beat, I am so sorry I know how confusing, frustrating and demoralising this journey is. I think a large number of this lovely group will totally identify with your experiences. Certainly I do. I had a definitive diagnosis of Lupus in 2009, it changed to Bechets, then query Low Grade Lymphona, back to Lupus, then Bechets , Fibromyalgia and probable Lupus, to Fibromyalgia and hysteria, to No Fibromyalgia but UCTD and now Bechets with Lupus not ruled out. Each change of Rheumatologist has brought about a change of diagnosis.

Like you too lots of different hospitals for tests, treatment etc.

Your GP seems to be trying hard to help you find a diagnosis and reason for your symptoms which is a real help. I truly hope that you get answers and better still treatment to ease your symptoms.

Please keep us updated how you get on xx

[KeepingUpBeat]

Hi All, Thank you so much for your replies, it always helps to know you are not alone. More bloods back and the ENA and Ro are 'positive/abnormal', with this result I received a letter from the hospital stating 'Given the positivity of anti Ro antibodies and the clinical symptoms of dryness in eyes and mouth. I have ordered an ultrasound of the salivary glands to assess the possibility of a Sjogren's syndrome.' She is still waiting for ANA results, though I don't know what that will add to findings. Hopefully, I will be speaking to the hospital doctor next week once she has all the results. I don't find hydroxychloroquine any help with pain but I was probably less fatigued when taking it. Prednisolone greatly reduced joint pains and this allowed me to do much more. The doctors don't want me to take this long term because of the side effects 😔. I have an ultrasound of my stomach on Monday, Cortisone ultrasound guided injection into my left shoulder in May. Now I know more about Sjogren all my stomach issues present for well over a year make sense. I will be asking my GP and hospital doctor what can be done about me being seen with some urgency since I have been waiting for so long while my symptoms get more severe. I waiting for my endoscopy appointment and referral to orthos for knees and feet. Lupus 'esque' I would say is a very fitting description, Bbmuso, I think I will run that by my hospital doctor at my next appointment in August 🙂. I am meeting with friends this weekend and will make a concerted effort not to let my health be the topic of conversation even though it will be visibly obvious I am in pain. Some lightheartedness if only for a short while will be the order of the day. I will indeed keep you posted Cecily. XX

[Bbmuso in reply to KeepingUpBeat]

Good luck Cecily x

[Betty909090]

Yes! Lots going on but with reference to this:

“…I am also told I am pre-diabetic and my GP should follow take the appropriate measures.…”

Note that pre-diabetic also means borderline diabetic!

Hence you have to watch your dietary carbohydrate intake and do CHO portion counting! You’re still producing insulin but it’s not working properly? Insulin resistance is the usual reason. Many have totally reversed their diabetes by following low CHO diets and attending to personal aerobic exercise levels.

[KeepingUpBeat]

Hi Betty909090 Thank you for your advice. I am working on changing my diet and reducing carbs. Smaller portion sizes is something I am already doing because of my gastro problems which I now suspect are link to Sjogren's syndrome. I've always exercised although currently any form of exercise is extremely painful, especially in my feet, hands, knees and hips. I now it is better to stay as active as possible for most health conditions.