Is there a link between hemangiomas and Hughes Syndrome.

[Jillymo]

Hi,

I have many autoimmune diseases as well as triple positive APs.

Spinal scans have shown five hemangiomas on my spine.

Another appeared on my trunk when I were in my teens and was surgically removed.

Many smaller one's over the years have appeared on my scalp, face, chest and trunk.

Does anyone else have them or told they are linked to APs ?

[lupus-support1 Administrator]

Hi Jillymo,

Haemangiomas can appear at birth; we are talking about adult onset.

They are benign "tumours" of blood vessels. They can be external or internal. They are only a problem when the internal haemangiomas bleed; I had multiple and were zapped by laser surgery.

Haemangiomas are unrelated to Hughes Syndrome, as far as I know. I will stand corrected if someone can refer to a clinical paper.

dermnetnz.org/topics/cherry...

drfinbarsskinclinic.com/ha?... (video)

With good wishes,

Ros

[Raw57 in reply to lupus-support1]

I have them internally and small ones all over my chest and abdomen and upper legs. I have several in my liver and kidneys. Also, a benign tumor in the left kidney. My previous PCP checked annually but the new PCP since 5 years ago is not interested in them.

I hope you have no trouble with yours.

[Jillymo in reply to Raw57]

Hi Raw57,

My internal one's were only discovered whilst having scans on my spine. I have quite a few on my scalp some of which are a little tender if scratched. The one's on my chest are quite noticable because they are surrounded by spider veins. Something unidentified has been seen on a MRI and iv'e now got to have a capsule swallow ! Thank goodness your tumour is benign.

Thanks for sharing your story with me. 😘

[lupus-support1 Administrator in reply to Raw57]

Obviously, those on your internal organs should be monitored, in case they start to bleed. Can you not speak to your PCP?

[Jillymo in reply to lupus-support1]

I could, but if honest they haven't a clue and no body has monitored them since they were discovered during an MRI at Guys Hospital !

[lupus-support1 Administrator in reply to Jillymo]

Shocking! I’m really sorry you’re not receiving the care you need!

With good wishes,

Ros

[StriatedCaracara]

I have a suspected choroidal hemangioma. It was found recently during routine OCT.If it grows it can affect vision so then is removed in same way diabetic eye condition treated. So I'm guessing there might be other instances haemangioma can affect functioning, but eye being most obvious.

I have been diagnosed with UCTD. This was found the same year and I had just had covid pre pandemic in March 2020. I have been searching for connections too with systemic autoimmune conditions and covid infection, maybe affecting availability of oxygen and causing increase in vascular mass.

Thanks for posting

[Jillymo in reply to StriatedCaracara]

Hi,

Sorry to hear of your recent diagnosis of UCTD I have also been wondering if I have connective tissue problems. I have the dry eyes ect and diagnosed with Sjogrens. My Rheumy has just increased my Hydroxycloroquine which I have had to make opthalmology aware of so that they can keep a check on my eyes.

My internal hemangioma's are at the base of my spine but something has been seen on an MRI of my intestines which as yet has not been identified ! I am now waiting for a capsule swallow in the hope they will be able to diagnose what has been seen on the scan.

It is all sent to try us and it does. 😘

P.s I caught Covid 19 in Jan when I had my MRI !

[myarabella]

I am APS positive and have a brain meningioma (benign). Not.sure if these are related.

[Jillymo in reply to myarabella]

Thank goodness it is benign,

I have searched the net and as yet not found a connection that links it to APs. 🤔

[myarabella]

Hi Jillymo- I think I now know why I have tumors all over. I was test positive for a rare genetic disorder called Von Hippel Lindau syndrome. Last year I had to have surgery to remove a large tumor in my kidney. This time the tumor was malignant and those with Von Hippel Lindau, 70% get Clear Cell Renal Cell Carcinoma. It has been a year and I am doing well. Most with VHL die due to complications with ccRCC so I feel incredibly lucky.

[Jillymo]

Hi Myarabella,

I am waiting for a capsule swallow to try and diagnose somthing seen in my colon on an MRI scan.

Your condition is not one I have not heard of but will look it up out of interest. Thank goodness they have removed the tumor and you are doing well and I pray you carry on doing so.

Thank you for taking the time to explain this illness to me, it's an interesting one that's for sure. I have a cyst on one of my kidneys and another on one of my fallopian tubes. I also have a small mass in one of my lungs which was seen on a scan when they were investigating my heart. I am going to ENT for an inner ear issue today. It might be worth my while getting VHL ruled out I have a long list of autoimmune conditions.

God bless and you take care. 💐

[Frodo]

I was told I had one on the spine by the rheumatologist after a scan. But they didn't explain anything about it other than to say it wasn't anything to worry about. Maybe there is a link with APS??

*Just looked them up and they can cause symptoms. In fact a few years ago I developed some unusual (for me) leg weakness and stiffness. I think I'll ask at my next appointment if that could be the cause. Although waiting lists for repeat appts are extremely long so not sure when that will be...