Sarcoidosis anyone?

[Cfarrar]

Has anyone been diagnosed with this? Ive had a bad swollen lymph node in my neck, itchy lesions all over my body and dry eyes and my doctor thinks sarcoidosis might be the reason why. He wants to biopsy my lymph node and do a chest X-ray. Not sure if the Vaccine caused it but the timing is suspicious.

[Shedman]

Sorry to hear this.. In case it is, my limited understanding suggests that you should cut vitamin D supplements — or, as always, wisely take advice on supplement regime.

[cllady01 Former Volunteer in reply to Shedman]

Shedman, do you have a reference for your limited understanding suggestion?

[cllady01 Former Volunteer in reply to cllady01]

ncbi.nlm.nih.gov/pmc/articl...

This 2020 Faculty Review is not so conclusive as to be able to state cutting Vitamin D, however, the involvement in Vitamin D and Calcium regulation is something being investigated in regard to Sarcoidosis.

The last sentence below suggests (my emphasis) a connection, but warns of the potential risk-benefit balance of Vitamin D supplementation.

"Vitamin D and calcium disturbances clearly play a principal role in the pathophysiology of sarcoidosis, yet the practical management remains controversial. Because of the concerns of worsening abnormal calcium metabolism following vitamin D supplementation, the clinical community has been ambivalent on supplementation in vitamin D-deficient or -insufficient patients with sarcoidosis. This concern also limited the conduct of prospective clinical trials to address a novel but neglected aspect of vitamin D action in this population. A study in two distinct ethnic groups of patients with sarcoidosis has opened the door towards further unraveling the role of vitamin D12. The result of the study showing that repletion of 25-(OH)D may reverse some underlying pathophysiological abnormalities was compelling; the associated lowering of serum angiotensin-converting enzyme (ACE) and serum γ-globulin, both surrogate markers of active sarcoidosis, supports the suppression of granulomatous immune activity. These intervention studies were small in size and did not allow comprehensive investigation of the potential risk–benefit balance of vitamin D supplementation on different organ systems. Further prospective interventional investigation involving larger cohorts of patients is warranted to clarify the relationship between vitamin D repletion and inflammatory activity and outcome in sarcoidosis."

[Cfarrar in reply to cllady01]

Thank you for this!

[Shedman in reply to cllady01]

This paper seems to be looking at patients whose vitamin D levels are very low.. Guess what?! They need more vitamin D.

Patients who are supplementing and have ‘normal’ (adequate / sufficient) blood levels, might suddenly have their vitamin D go up due to sarcoidosis disregulation..

This is the concern for those supplementing without knowledge, via blood test, of their actual vitD levels.

Hence: go gently, maybe pause vit D; talk to your Dr/consultant; get a vitD blood test.. review.. Your vitamin D status and supplement requirements may have changed.

—

In general, supplement advice here tends to ask:

- why are you taking that supplement?

- do you need it?

If blood test shows low Vit D, then likely you need it, but sarcoidosis might be reason for more regular vitD testing / reviews.

[Shedman in reply to cllady01]

Sarcoidosis : vitamin D — there’s commonly an issue.This is reason to pause.. go get advice from Dr / Consultant.

—

Try this UK FAQ site:

sarcoidosisuk.org/informati...

A science paper is well and good, but sometimes wisest to get expert advice directly.. in relation to your presentation, your blood results, your stage / disease status.

There is always a balance: we need vitamin D .. see that FAQ for reasons why it gets complicated.

[Cfarrar in reply to Shedman]

Thank you Sherman!

[Ker19]

I have to admit I thought these were normal CLL symptoms. I have all three but not severe. Hope you have an answer soon and feel well.

[Cfarrar in reply to Ker19]

Yes, I guess the only way to know for sure is a biopsy and chest X-ray. I guess sarcoidosis shows up in the lungs 90% of the time.

[Shepherd777]

Johns Hopkins in Baltimore has a specialist for this disease and he treats it with a steroid.

[Cfarrar in reply to Shepherd777]

Thank you! Can I get his name?

[LeoPa]

The presentation of sarcoidosis in the skin is very rare from what I understand. I've been trying to look up information about this as my wife seems to have it. She has no cll. Skin biopsy lab result confirmed that's it is sarcoidosis. Dermatologists are at a loss. They say it usually shows up in the lungs and most of them never saw a patient having it it is so rare. CT of the lungs came up clear, no sarcoidosis there. Since it is an inflammation in the skin it is my understanding that the low inflammatory diet might be beneficial. I tried to put Madam on a very low carb to ketogenic diet and it seemed to improve. She lasted only a week though 😁. Who knows what the result would have been if she took it as far as a couple of months. In case you have the willpower to last that long on keto then do try it please and let me know the results! By the way cut out any and all dairy from your diet as well.

[Cfarrar in reply to LeoPa]

Thank you for this! I wonder if wasn’t a reaction to the covid vaccine. But yes, I will try the diet and let you know. Right now, I don’t have any sores 🙏🏻 But not sure how long that will last. Did your wife have any lymph nod involvement? They do say 90% of the time sarcoidosis shows up in the lungs.

[LeoPa in reply to Cfarrar]

It started before vaccination,no node involvement,nothing in the lungs. I think it is chronic inflammation and dairy consumption. Dairy proteins are known to cause skin issues in some at a certain stage in their lives.

[Floxxy]

I have sarcoidosis in the lungs. It was discovered when I was having tests to determine my CLL diagnosis and had a VATs biopsy to determine whether the lung changes were due to CLL. It doesn't cause me any problems at all and my spirometry were fine. My consultant said that vitamin D was essential in my situation. I was meant to have 6 monthly scans to check my lungs but for obvious reasons they have not happened. The specialist fully expects it to resolve itself without needing treatment. X

[Cfarrar in reply to Floxxy]

Wow thank you! Did you have any other issues like dry eyes, enlarged lymph nodes? What is a VAT biopsy? Did you notice shortness of breath or any other breathing issues? Thanks so much!

[Floxxy in reply to Cfarrar]

I've had dry eyes for a while, prior to diagnosis. The enlarged lymph nodes were related to the CLL. VATs is Video Assisted Thorascopic surgery. It's keyhole surgery to explore the lungs under GA. I had no breathing problems and wouldn't know I had a problem. I hope that you get on ok. X

[Cfarrar in reply to Floxxy]

Do you take any medication for it?

[Floxxy in reply to Cfarrar]

No, Ive never needed to. x

[Cfarrar in reply to Floxxy]

Did you see a rheumatologist for diagnosis?

[Flute117]

A biopsy really is the only way to know what’s going on, although it may not be conclusive evidence of sarcoidosis.Please let us know how things go with you.

Regarding Vitamin D, I should have my levels checked again. I have been on D3 supplements for a while after having low levels.

I have suspected but unconfirmed Sarcoidosis along with CLL/SLL. I have granulomas in my lungs and elsewhere. It is extremely difficult to differentiate lymphoma nodules from granulomas without biopsies. I have so many, it would be impossible to biopsy them all. The biopsy of a lymph node in my neck two years ago confirmed CLL/SLL and also showed granulomas present. My ACE levels were normal, but they are not always elevated with Sarcoidosis.

[Cfarrar in reply to Flute117]

Please tell me have you had other issues with this like dry eyes, skin lesions, breathing issues? Do they check your other organs to see if they are causing damage there?

[Flute117 in reply to Cfarrar]

I occasionally feel like I can't get a deep breath, but doctors have never heard any wheezing, or anything audible. Breathing tests showed only a slight deficit. At this point I think it may be related to anxiety as different asthma meds over the years never helped.

I have very watery eyes, and no skin issues.

To be honest, I don't know how to get a definitive Sarcoidosis diagnosis. I know there are teams of Sarcoidosis specialists from different disciplines who work together.

I just had my PET/CT scan as it's just about a year after starting V + O treatment for CLL/SLL. The radiology report states that there are still a lot of areas that could be lymphoma or could be inflammation (possibly Sarcoidosis) - some previous areas are gone, some shrank, but there are also some new ones. Will see my specialist on Wednesday - will be interesting to see his take on these results.

[Cfarrar in reply to Flute117]

Would you mind keeping me posted on what he/she says?

[Cfarrar in reply to Flute117]

Is it necessary to see a rheumatologist in order to get properly diagnosed ?

[Rando21]

I had a CT and CT PET that showed granulomata, described as granulomatous disease by the physician. I was taking quite of D3 for a period of time prior but have no idea what caused it and was told it’s fine.

[Cfarrar in reply to Rando21]

Is a CT necessary can a chest X-ray work?

[Rando21 in reply to Cfarrar]

I am not sure but I think the CT allowed them to be relatively sure it was granuloma. The mentioned calcification and fairly precise measurements. 2mm and 7 mm.Maybe an X-Ray can do that too I am not sure.

The PET CT might be more useful to rule out certain cancers.

[CCgroup]

Sorry to hear that, but I will be following your updates with interest. I also have itchy lesions all over my back and side that don't let me get much sleep. They come in different areas, and in some areas go away. Two dermatologists so far have not come to any conclusion as to the cause. I've been taking 3 140mg ibrutinib for 3 1/2 years.

[Cfarrar in reply to CCgroup]

Yes, I’ll let you know what I find out there is a oncodermatologist who is familiar with CLL since her dad has CLL. She is in The US, not sure where you are located.

[CCgroup in reply to Cfarrar]

Hi Cfarrar.

I live in Costa Rica. I have another dermatologist appointment on Tuesday, but she seems to be baffled so far. We'll see.Cheers - Dan

[tesoro5858]

Not saying it's due to the vaccine, but I agree that it's suspicious. My father was diagnosed with sarcoidosis at the end of his life when docs were baffled. Understandably, I am hyper-sensitive to your concerns. Regarding the COVID vaccine, I developed AIHA after the 1st dose, CLL untreated since 2014, good prognostic markers, out of the blue autoimmune hemolytic anemia. Suspicious. I filed a report with CDC.

[Cfarrar in reply to tesoro5858]

Do you mind me asking how your AIHA was diagnosed, and what your symptoms were?

[tesoro5858 in reply to Cfarrar]

AIHA found at 6-mo CLL checkup, which happened to be 2 weeks after 1st COVID vaccine dose. Symptoms were breathlessness on mild exertion and blood pulsing sound in my ears. All coincidentally.

[Cfarrar in reply to tesoro5858]

Oh goodness are you doing better?