Can you get Scleroderma with a normal blood report?

[dacharya]

I have symptoms of Scleroderma like skin tightening, lungs damage,Raynaud's, and difficulty swallowing. However, my blood tests for ANA, ACA, and Scl70 are all normal.

So, is it possible to have mild Scleroderma with a normal blood report?

[George369]

Hi Dacharya, My Scl70 tests always come out negative, also the other antibodies negative and my blood tests are always in the near normal range (following chemothetapy), yet i am diagnosed with Aggressive Scleroderma with Renal Crisis.

I have all the symptoms, Raynauds, skin scarring all over my body, tight face & mouth, secondary myositis, accute gastrointestinal problems, high blood pressure, etc. I actually did ask my Rheumatologists about this at the hospital, and the answer was they do consider all factors and overall symptoms, not just the blood reports.

Actually looking back, i then understood that in my case the Scleroderma had pre-existed two years back before being properly diagnosed. Despite many blood tests and many visits to Rheumatologists i was misdiagnosed, nobody realized the real problem, since blood tests were normal and antibodies negative.

Then one sad day my Scleroderma flared up suddenly and within a few hours I had a real crisis, my kidneys stopped working and with 220 blood pressure, my heart thumping like a locomotive, i was admitted to hospital for emergency care, and that's when they did the actual diagnosis.

So i guess the answer is yes, i'm sorry to say, you may have Scleroderma even with a normal blood report.

It"s a very tricky disease, so best to make sure and start dealing with it as soon as possible...

...i hope this was useful.

[dacharya in reply to George369]

Hello George, thank you for explaining everything. I guess I also have it but I am not finding a good rheumatologist. Scleroderma is rare in my location and that's why the rheumatologists are not good at diagnosing it.

I would like to know what are the drugs you were put on by the rheumatologist for Scleroderma and are you getting any improvement?

Is your Scleroderma a local/CREST or diffused one?

In which hospital you were diagnosed?

[George369 in reply to dacharya]

Dear dacharya, well to reply to your querries, I have aggressive diffuse scleroderma with renal crisis, it has affected all my organs, especially heavy on kidneys, stomach & intestine, to a lesser degree heart and lungs, also myositis and ulcers that cause internal bleeding.

I live in Athens Greece and was treated here in a central public hospital. Initially they gave me Mycophenalate pills which did not help much, then they put on Cyclophosphamide for 6 months intravenously, fortunately this halted the disease and put it into remission, now i am receiving monthly doses of IMG, and am very much better, living almost a normal life again. Next month will start with Rituximab intravenously once a month, they told me this will be for preservation, to avoid a relapse.

Scleroderma is a very rare disease here in Greece, so its not easily diagnosed, only the big central hospitals know how to treat it. I was fortunate to have a whole team of Rheumatologists looking after me, taking me under their care, supervised by the Clinic's director, and am immensly grateful for the excellent level of medical services provided to me even though just a public hospital. Honestly they really supported me during the very difficult months all last year when i was continously in pain and fatigued. As i said now i am very much improved, almost back to normal and no pain at all. Take care, wishing you all the best in your journey!!!

[dacharya in reply to George369]

Good to know that you are improving. But I didn't get one thing. You said that your blood tests for Scleroderma were normal. So, how the doctor confirmed that you have Scleroderma? Only by seeing the symptoms?

[George369]

Yes, from all the symptoms combined.

[dacharya in reply to George369]

Your doctor must be an expert because most doctors cant do that only with the symptoms.

If you don't get any issue with your kidneys then it's a local/CREST other wise it's diffused.

BTW, do you have any problem with your eyes? I get double vision and burning sensation in my eyes.

[Cassepied]

Sci-70 on a blood test will usually show diffuse scleroderma.

[dacharya in reply to Cassepied]

That might be true because my report for Scl-70 is normal and I don't have any issue with the kidneys. But my anticentromere antibody (ACA) is normal too but still I have Raynaud's. Do I need to have all the symptoms of CREST for ACA to be high or the local Scleroderma can't be detected on a blood test at all?

[Cassepied in reply to dacharya]

I believe you can have reynauds and that's it. To have CREST rheumatology told me you need to have 3 of the letters. My girlfriend has Reynauds only. Just sounds like you have reynauds. My doctor tested me for ANA because my hands blew up and it came back centromere

[dacharya in reply to Cassepied]

But then why am I having hardening of skin on my legs and hands?

I'm not only having Raynaud's but other symptoms of CREST including hardening of the skin (Calcinosis), difficulty swallowing (Esophageal dysmotility of E), thickening of the skin of finger tips could be from Sclerodactyly. Only thing I am not sure whether I have Telangiectasias because I haven't noticed anything like that on my skin.

Apart from that, I also have lungs disease and x-ray of my lungs shows inflammation and damage, which happens with Scleroderma too.

So, how can you say that I can't have Scleroderma?

I haven't heard any other disease that causes skin hardening, raynaud's, and lungs disease at the same time.

[Cassepied in reply to dacharya]

I'm sorry. I thought you asked can you only have reynauds. Please read your question specifically to me again. Now you are giving me other symptoms. Yes sounds like Crest. The problem with these diseases the medical communities don't even understand them.

[dacharya in reply to Cassepied]

No, I never asked whether I can have only raynaud's with Scleroderma. I asked, "Do I need to have all the symptoms of CREST for ACA to be high or the local Scleroderma can't be detected on a blood test at all?". As my blood tests are normal, there can't be CREST but I am still having some of it's symptoms.

In which hospital are are getting the treatment?

[OldTed60]

The reason you are receiving confusing replies is because you have asked so many questions here that none of us can really answer. Also you state as fact that everyone with diffuse will have renal involvement but this just isn’t true. Sohe get preventative treatments in time while others have different organ involvement. There are no rules with this disease and no one person presents the same. The course it might take largely depends which antibody we carry and there are a total of 13 - not just the two most common ones you’ve mentioned. We aren’t doctors but I do know that some things you present as fact are entering incorrect.

It’s possible to have any of these rheumatic autoimmune diseases with normal antibodies but just extremely unlikely. If you have skin hardening, Raynauds and gastric symptoms then it’s likely that you either have a rare antibody they don’t test for in your hospital or else you are a very rare case of seronegative systemic scleros. If you have access to more extensive testing and the funds to order this then it might be worth paying for a full Scleroderna antibody panel with all 13 known antibodies.

Here is a good abs reliable peer reviewed paper with the full list of known scleroderma antibodies and rushes associated. Please read this rather than relying on Google or Wikipedia. dermnetnz.org/topics/system...

[dacharya in reply to OldTed60]

Thanks for the details. I read somewhere that there are two types of Scleroderma, one is local that comes with only CREST symptoms and is not fatal. On the other hand, diffused one will show kidney problems with the CREST symptoms too. However, other organs may also be involved in diffused type.

Which are the 13 antibodies are you talking about? Please list them.

As per as I know, only blood test can't diagnose Scleroderma and even the rheumatologist also said the same thing to me. You need to have a bunch of symptoms and physical conditions to confirm it's Scleroderma, even though the blood tests are either positive or negative .

[OldTed60 in reply to dacharya]

“I read somewhere that..” - I’m sorry but I don’t know where you live or get your information from but it’s very outdated and factually incorrect. I have already provided you with a link to the correct information - please read and educate yourself. No one person with systemic sclerosis presents the same because it’s a multi systemic disease so can affect any part of us. Diffuse is only relevant to skin involvement although diffuse antibodies such as mine point to a worse overall prognosis but thus isn’t always born out in reality. Kidney involvement tends to be sudden renal crisis and is quite rare - especially with the medications many of us are put on early in the disease. Lung and cardiac involvement can equally affect limited and diffuse subtypes.

The link I’ve attached previously gives all the antibodies. The two you mention are the most common and ACA antibody tends to present more slowly and mildly whereas the Th/To limited antibody carries a more severe prognosis. With SSc-70 it tends to be linked with diffuse but isn’t always. It is far too complicated for me to go into in more depth on a patient forum when I too am just a patient - albeit fully diagnosed and treated now. I suggest you only read proper peer reviewed papers, as up to date as possible, like the one I gave you on my previous comment. There’s plenty of good academic research to be found online nowadays for example the charity hosting this forum SRUK has very reliable information. Yes bloodwork is only part of the overall diagnostic picture - but it’s quite an important part nonetheless

[dacharya in reply to OldTed60]

Thanks for all the information. So, which medicine worked best for you?

[OldTed60 in reply to dacharya]

Mycophenolate, Iloprost, Losartan and Rituximab with Domperidone, Esomeprazole and Famotidine

[dacharya in reply to OldTed60]

Thanks for sharing the meds. It seems that both Mycophenolate and Rituximab are same thing because they are both immunosuppressant. Why do you need both? Losartan is for blood pressure. Why do you need that?

[OldTed60 in reply to dacharya]

Mycophenolate suppresses the T-cells and gives me issues with absorption due to scleroderma gut with my stoma so I’m no longer on full dose. Rituximab is a biologic which suppresses the B-cells and as an infusion it bypasses the gut and helps with inflammatory arthritis and myositis. Losartan helps with both my hypertension and my Raynaud’s - both conditions related to systemic sclerosis.

[dacharya in reply to OldTed60]

So, what side-effects you get from Rituximab? Is Losartan is for raynaud's then why are you taking iloprost because both are used for raynaud's.

[OldTed60 in reply to dacharya]

Sorry I can’t keep replying to all of your questions as it’s tiring and hard on my fingers. Many of us here are on multiple treatments for autoimmune diseases such as scleroderma and also for Raynauds. You really need to ask your doctors these questions once you are fully diagnosed

[dacharya in reply to OldTed60]

The reason that I am asking all that is because I am not getting answers from my doctors. My doctor said he can't tell if I have Scleroderma and in my country this disease is very rare, and I don't know any doctor who is treating patients with Scleroderma here in India.

Thanks for all your support though. You don't need to take the pain in your fingers for me.

[OldTed60]

No worries. Even in UK it can be hard to find a knowledgeable specialist. It took me 12 years to get correctly diagnosed. But a lot of your questions are too complex for most of us to answer and none of here are medically trained. However I follow this organisation online and find their Instagram and Facebook posts useful - maybe worth contacting them for help in getting a diagnosis in your state or learning where best to travel for one? sclerodermaindia.co.in/

Or email: [e-mail]

[dacharya in reply to OldTed60]

It's a scam and because I already contacted that organization. They have a list of doctors on their website who are even having a DM (specialization) in rheumatology. In India, most of the doctors are practicing as a rheumatologists without the DM but only with MD (specialized only as a general physician).

I even asked the hospitals about this but no one has given an explanation about that. I guess these doctors are trying to gain experience by practicing on patients (with immune problems) without earning a degree in this field. And that organization must be in favor of these doctors.

[OldTed60 in reply to OldTed60]

Just because the doctors they list aren’t registered rheumatologists it doesn’t mean the charity is a scam. The charity, SRUK, hosting this forum has lists that are also very out of date and include speciality GPs. They are a shall charity and can only keep their information up to date if patients feedback to let them know. Perhaps you need to contact this charity, Scleroderma India and discuss. I used to live on a remote island where the rheumatologist was a specialist GP but he still diagnosed and helped many local patients. A lot of us here living in devolved parts of UK find it very hard to get specialist care and have to travel, sometimes at our own expense, to Leeds or London. My friend who lives on a Scottish island has an Indian NHS rheumatologist who travels between their home and family in India and the island under the auspices of the nearest Scottish mainland hospital. This is due to a desperate shortage of rheumatologists here in UK. So they exist in India too and it’s up to you to contact the charity and speak to someone one who might be able to advise I’m afraid. Sadly this is the case for many of us with rare diseases.

[dacharya in reply to OldTed60]

I didn't understand what you meant by specialist GP?

In India, there is no such doctor like specialist GP. In India, a doctor earns MBBS degree first to treat patients as a GP but one who earns MD after MBBS, can treat patients better using meds but only for common medical problem.

So, a doctor who has MBBS + MD + DM, can treat patients having a problem related to a specific medical department. For instance, if a patient is having issues related to the heart needs a doctor with DM in cardio. In case, if any patient gets a heart attack then he could be treated at the emergency ward by any doctor with MD but later he would need a DM in cardio for proper treatment.

Similarly, any patient with immune problems needs a doctor with DM in rheumatology. Otherwise, any other MD doctor won't be the best person to help. In US, most doctors with only MD can become a specialist but in India things are different. Here, one must have DM to become a specialist.

[OldTed60]

I guess you have to remember that the majority of members of this community are from UK so maybe you need to talk to others from India on a SclerodermaIndia forum or find others here and on US group, Inspire, and support each other as we UK people do here. By coincidence someone else from India has just posted asking more straightforwardly if there’s anyone here from India so I suggest you private message them and either find or set up a Facebook or other type forum for Indian patients needing support. For example there’s a HealthUnlocked for Australian people with Sjogren’s so you can host and admin your own group or link up with SclerodermaIndia - a support charity much like SRUK is to people in UK?

Here’s the new post of you haven’t yet seen it. You just click on their profile and find the chat bar below to speak to them directly. healthunlocked.com/sruk/pos...