Mesenteic arteries

[Alexwwww]

Hi ... anyone has mesentric problems of vasculitis and how is serious ???

[Hidden]

I've not come across anyone with mesenteric arterial problems specifically but there are 18 types of vasculitis, all of which can affect blood vessels of differing size, depending on the specific variant. Which type do you have?

[RiviS7]

Hi Alex

I have been told that I have a burned out vasculitis but my doctors don't know what type. I had a biopsy of mesenteric arteries after having a double bypass of my celiac and superior mesenteric artery. The section they biopsied was so damaged they couldn't make out what kind it was.

My hepatic artery is severely damaged and have disease in carotid arteries too also an aneurysm in gastroduodenal artery. At one point my esr was 68 but doctors at the time didnt try to figure out why. It's very frustrating. Now my bypass is failed on celiac artery and there is still narrowing in sma.

I am not on prednisone or anything because doctors at the Cleveland Clinic think my vasculitis burned out.

I sure hope so.

I hope you get some valid answers to your symptoms. It's really hard to not have a definite diagnosis

[Alexwwww in reply to RiviS7]

Thanks alot f

[Alexwwww in reply to RiviS7]

Are you good at this time ??dont have any problems??

[Suzym2u Moderator Vasculitis UK in reply to RiviS7]

Interesting you have been told you have burned out vasculitis , what type of vasculitis were you diagnosed with?

[RiviS7 in reply to Suzym2u]

Hi Suzym2u

They think it is Takayasu's Arteritis, but do not know for sure.

[RiviS7]

I'm doing o.k. at this time, but I have to go every 3 months and have an ultrasound and C.T. Angiogram to check whether there is more narrowing of sma. Next time I will have my carotids checked too. I still experience a lot of fatigue, headaches and sometimes faint feeling. On the intestinal end, I experience some pain under my ribcage, but my liver has been affected by disease, so that pain is on and off on a regular basis. For me the hardest thing to deal with is that I had all these symptoms and many doctors were just acting like i was a hypochondriac. It took years for all these symptoms to connect and make sense. I just thank God that I survived this, but I suffered a lot of damage and will be dealing with that the rest of my life. Right now, it seems like this bypass is not going to hold indefinitely. It was a hard surgery.

I hope you are doing o.k.

[Alexwwww in reply to RiviS7]

Ooh ...i wish you have a better mood for future ... and also good bless all of us!

[BronteM in reply to RiviS7]

Your story sounds a lot like mine! Years of going to the doctor with one thing after another....finally I was diagnosed with Large Vessel Vasculitis in January 2012. I've had some of the symptoms in a low grade way since my forties so there is a problem with the name. Some doctors refer to me as having Takayasus and others call it Giant Cell Arteritis as I'm well over 50. There others on this site with the same problem!

I've not had your problem with the mesenteric arteries, but have persistent problems with my carotid arteries and the subclavian ones. Definitely not burnt out either...I'm on rituximab, prednisone and three different blood pressure tablets, plus all the usual stomach protectors etc.

But I'm also really interested in the pain under your rib cage. Do you also get pain across your back, roughly in line with your bra strap? I keep mentioning both, but so far haven't had a satisfactory explanation. I did have a gall bladder scan three years ago, but that was fine apparently. Since then the pain has come and gone, but has recently settled down to being there most of the time, and I'm wondering whether to go back and ask about it again.

Good luck with your search for answers...this is often a disease that just keeps asking questions.

[Juneelizabeth in reply to BronteM]

Hi There

Interesting you comment on having pain in ribs ,and across back roughly where bra strap fits

I was diagnosed with GCA on the basis of a temporal biopsy and presenting with headache in temples

Tender scalp and pain in right chest quadrant

Sept 2016

Since then I've been on Prednisolone reducing the dose gradually

at moment to 8 mg/day plus stomach and bone protecting med

I am also diabetic on basal bolts insulin regime

Like you I've had these upper body rib pains and apart from a CT scan to check for cancer ( I am one year clear after surgery and Chemo for Bowel cancer) there has been no ultrasound or any other investigations for vessel weakness or damage

My blood pressure has been high and I need to monitor it daily

Best Wishes

June

[RiviS7 in reply to BronteM]

Hello Bronte,

I'm sorry I'm responding late, but the pain in my ribcage area is most probably from the liver on the rt side and I'm not sure about the left side, but may be my spleen. I had a partial lung collapse from surgery and I don't know if that is contributing to it at all too. I get pain in my back by the bra strap area from my liver ( fatty liver) and also that the hepatic artery is extremely stenosed and I am only getting blood from collaterals now.

I did want to ask you how high has your ESR ever been and your CRP?

My ESR is always elevated but the doctors think it more my age than anything. I'm 46. I don't know what I think about that. It is 10 to 15 points higher than the high normal range. But other times it is at 12 or 0.

Thank you for sharing your experience with me. You may want to have your liver or pancreas checked just to make sure that they are doing o.k.

Rivi

[BronteM in reply to RiviS7]

Thank you, Ravi. That's fascinating and I'm most impressed that you have been told all this! My aches and pains have always been attributed to claudication, and I'd decided for myself that the back pain comes from my damaged aorta.....it is only working at about 60-70% efficiency. No one has mentioned liver or spleen, so I'll follow that up.

My blood tests are apparently 'idiosyncratic' and any changes have been in trend rather than anything dramatic. So one of the reasons that it took so long to get a diagnosis was that my ESR and CRP were never dramatic enough. On the other hand, scans of my arteries always have an extra audience has few of the medical staff have ever seen anything like them!

[ianla]

Not trying to scare. But does this help with your question?

I was found to be suffering with Mesenteric Ischemia of the small intestine by pure luck, towards the end of 2014.

I was suffering from leg and abdominal pains which began to get more severe. I was given a full spectrum blood test. The majority of the results came back positive. My GP said the test results were no use, but they did prove something was not right with me. I was tested for Leukaemia and numerous other similar ailments, (Lymphoma's, etc.)

I had got to the stage that I was no longer able to hold down food or liquids. I was given a laparoscopy. What was going to be a 40 minute procedure turned into over five hours.

I had acute Mesenteric Ischemia of the small intestine. About 18 inches of dead semi-liquified intestine was removed.

The cause was found to be Polyarteritis Nodosa (PAN) with a side order of Antiphospolipid Syndrome (APS), the main cause of the clots.

I also had big clots on my kidneys. Two and and a half months in hospital and high dosages of Anti-coagulants dealt with the clotting problem.

My consultants seem happy that the APS is in remission, and that the PAN is under control. I do get abdominal pain regularly but this could be due to the Polyarteritis Nodosa. I am on quite a high daily dosage of Warfarin though.

My consultant told me I was lucky, a couple of more weeks putting it off and things could have got really complicated.

[Alexwwww in reply to ianla]

Oohh ...youre a poweful person .. .. thanks

[Alexwwww in reply to ianla]

How many years do you have pan??

[ianla in reply to Alexwwww]

My Doctor reckons I've probably had it 5+ years. On all accounts it is not an obvious diagnosis and tests can give false positives. Hence the tests for what were considered the more likely candidates.

[RiviS7]

Hi ianla,

It is so nice to meet someone who has had mesenteric ischemia, not that that is a nice diagnosis, but I find its rare even in vasculitis sufferers. Mine was found incidentally on a C.T. and then I had an angiogram. My vascular dr. tried to put a stint in but said he absolutely couldn't do that and since they suspected vascultis I was sent to the Cleveland Clinic. My celiac is completely occluded and sma was almost occluded. Even after double bypass surgery my celiac bypass failed. My liver and spleen is fed through collaterols. Did they tell you what arteries were affected? How are you doing now? I was wondering if you wouldn't mind telling me around what age you are?

Does the antipholosphid affect your liver?

Sorry so many questions

[ianla]

Sorry for taking so long to reply. Had to come off my 'meds' for surgery, so been feeling extremely 'grotty' the past couple of weeks.

From the point of the effect APS had on me l was told a number of times whilst in hospital that I had been "very lucky". Although I was found to have a number of clots in the kidneys, digestive tract, etc, fitness had counted for a lot and my heart had been strong enough to force the thickened blood and clots round my system until they ended up in the smaller blood vessels of my small intestine. The really serious damage was pretty localised. I still suffer pain in the stomach area, some days quite excruciating but this is mainly down to the Polyarteritis Nodosa.

From what I've learnt APS can affect any blood vessels within your system

There is a very good explanation of APS at the arthritis research uk website.