What Lab Work Do You Run?

[redrock]

What type of lab work do you get done to see if your scleroderma is in check?

I have a kind, reasonable AP doctor but I find I have to guide him as to labwork and medication.

Normally I just get the ANA by IFA test run to see what is happening with my antibodies (along with my thyroid panel, CBC, and menopausal-related tests) Are there other blood tests I should get to monitor my progress, i.e. SED rate or something else? I am generally asymptomatic, so I rely on labwork and echocardiograms to see if I am in good shape.

[Lynne G.SD]

Hi Redrock;
Since there really is no blood test to diagnose SD I would think the same applies for remission.SD is usually confirmed by symptoms and the ANA test only shows what kind you have.Even at my sickest all my tests were negative except for a slightly off RBC and WBC

[Spiffy1]

I thought there was bloodwork for SD. Something like SCL-70 or something like that?

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[redrock]

The ANA by IFA is the one I ask for. Wondering if I should check anything else.

[Lynne G.SD]

This only tells you what kind of SD you have and can give a good idea of problems to come,such as Poly 3 where taking prednisone can lead to kidney failure
Way back when I was diagnosed I was told I had SLC 70 and despite remission for 18 years it is still the same.Never bothered to have any other ANA test done as I am just fine and it would be a total waste of money

[redrock]

So before I started AP my ANA Anti-Centromere was 1:1280 and my pulmonary pressure was 45. After treatment began my ANA went down to 1:80 and my pulmonary pressure was 19. So I do see a correlation between my ANA and effectiveness of treatment although I know it’s not the same for everyone. Since I’m mostly asymptomatic I do rely on these indicators, as you can be quite sick and not know it. I never knew I had high pulmonary pressure until tested.

[kater]

I get the haematology panel, liver enzymes, cardiac and muscle enzymes, kidney function, inflammatory markers and sometimes RF. They don’t like to bother about ANA much when I am asymptomatic. My doctor says it isn’t significant in an ongoing way.
Kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Spiffy1]

Redrock, your pulmonary pressures are amazing! You are fortunate that you found a cause/effect relationship. My dad had primary PH. No one was ever able to tell him why beyond sleep apnea that he would have this problem. However, as far as I know they only tested him for autoimmune one time in the beginning and never tested him again. I did not know enough about it at that time to ask to recheck. But 19 is great! Good for you!

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Cheryl F]

Redrock:

I don’t visit the forum often but just happened to today. Quite coincidentaly, just this morning I had a conversation via text with my daughter who has been in remission from limited SD for about 12 years. She has not had much medical follow-up since 2011, but she did have all labs, a PFT and an Echo done in 2013. I was asking her if she would please go have some labs done and she agreed.

First, I hope the doctor providing AP is doing the standard tests to monitor liver and kidney function, depending on which antibiotic(s) you are on this is important. When my daughter saw Dr. T in Boston (retired) he wanted these labs run monthly. Also, as SD can affect the kidneys I would think the kidney function labs would be rountinely watched, such as creatinine and BUN. I know that Dr. T was ordering those for my daughter.

One thing to be aware of, the SD ANA labs are not necessarily indicative of disease activity. In my daughter’s case, they dipped from a high of 1:1280 to a lower amount (about 1/2 I think- can’t remember). Then they went all the way back up. Last time she had labs (in 2016) the ANA for Anti-Centromere was 1:1280.

Hope this helps, I am planning to have my daughter get a very comprehensive set of labs soon, but none of the labs would really tell anything specific about disease activity of SD. She is signing up to run the California International Marathon next year, I told her that I thought that training for a marathon would be the best “test” to tell how she is doing.

All the Best~

Cheryl

[redrock]

Hi Cheryl,

I’ve had occasional escalated liver enzymes but never for two labs in a row. Interesting you mentioned BUN and creatinine. Mine are always normal BUT my Bun/Creatine RATIO is often high. Last time it was 33 where the norm is 9-23. Every doctor I’ve asked about this ratio has said that’s not important and one said it would be often high if taken while fasting.

Regarding your daughter’s ANA, I’m curious that last time she had it tested in 2016 it had gone back up to 1:1280, and that she has been off meds since 2013. Did either of you have concerns the higher ANA might mean the disease had come back? Or were you convinced she is okay because of lack of symptoms?

[Cheryl F]

Actually, her Ana went down at one point when she was about 1 year into doing AP. The very next time, so like 10-11 years ago, it went back up and has remained up ever since. So, other than that one time about 1 year into AP therapy, it’s alwsys been high. So, no we were not concerned. After about 4 years on AP and in full remission, she did not have labs regularly, maybe every other year or so. Also, she has only been off meds since 2015, if I wrote that, it was a typo.

When I talked to her this morning, she didn’t think she needed any follow-up labs now and she hasn’t had any for 2.5 years. She did concede to do the labs I want though. Obviously, this is not ideal, and I don’t think any SD patient should follow this course of action, but she is very attuned to her body and symptoms, and as a physician herself, she can have immediate access to any labs or diagnostic test if she thinks something is returning.

Cheryl

[Author]

Posts