[SLEMAYBE]

Hello all,

It's been awhile. I'm still suffering with pancreatitis/liver symptoms and haven't been well in a long time. Recently they found deficiencies in some of my immunoglobulin subsets and an elevation in another. Deficient in IgG 1 and 3 and elevated in IgG 4. Also my parathyroid (PtH) was at the high normal. Any of this ring a bell for anyone?

Thanks for any help...

 

[tbunny1]

You might want to try looking up the different tests on
http://www.labtestsonline.org/

I'm so sorry to hear you are still struggling with the pancreatitis - I understand that is a pretty miserable thing to go through. Hang tough, and remember this community is here to support you and answer your questions.

Be well - Tracy

 

[Lily]

Hi and welcome back,

I'm sorry you are still unwell and I hope they get to the bottom of all this for you very soon.

Each case will have a different cause and effect as to why these test results may show up in an individual. Having the liver problems would probably be of some significance as to why you have some of this abnormal testing.

The only one I have had experience with is the deficiency in IgG3 subset early on in the course of my disease. My Immunologist discovered it on initial testing. It's related to chronic respiratory problems such as sinusitis and pneumonitis quite often. That had not been the case for me but I did have a lot of other infections after a surgery some 2 years previously. The result led to further testing which found I had a very very low Vitamin D level. Once that was corrected with supplementation the IgG3 and the Vitamin D level came back up and has stayed that way. So in a way it was a red herring throwing him off the track but something that did need to be fixed.

Have you had your vitamin D levels checked? It's connected to parathyroid and whilst a normal level of PTH is a normal level whether it be close to the bottom end of the scale or the higher end there could be a connection with Vitamin D.

I know little about the low level of IgG1 but as far as the raised level of IgG4 a few references on the net mentioned it is found in Autoimmune Pancreatitis and also in Primary Biliary Cirrhosis (autoimmune liver). Of course there may be other reasons for it too, I did not look extensively and these sorts of tests need expert interpretation in light of symptoms and clinical history.

Which doctor is looking after all this for you and if it's several are they communicating with each other? Have you seen an Immunologist?

The Pancreatitis is a horrid problem from what I have read and I do hope that you have good doctors who are trying to work with you on this :hug:

love
Lily

 

[SLEMAYBE]

Vit D

First, thanks for the responses. Much appreciated. I accidentally said IgG 4 was elevated when I meant IgG 2. IgG 4 was low normal. My Vit D was also extremely low (on supplements). The PTH was high normal. A liver specialist is now looking at my case because my ALT shot way up (>3X normal) after having some invasive procedures. I think whatever is going on it is autoimmune (in family) because it seems that any time anything is done to me everything just goes to ****. My biggest problems are: fatigue, abdominal pain, steatorrhea, scleritis, weight loss (55 lbs now), chest pain, nausea (going over a year now with these issues), fluctuating elevations in LFT's and lipase. I have had two EUS's, MRCP, biopsies in the top and bottom of my small bowel, focussed CT scan of pancreas...apparently all normal. I was expecting a liver biopsy, but they are afraid of risk, feeling that the ANA (while on prednisone) at 1:160 (speckled) and positive ds-DNA at 1:10 may possibly indicate autoimmune, but it's not bad enough yet or something (I wish they could be on my end...getting a bit tired of feeling sick as you can imagine).

Sometimes I just think this is so obviously SLE: Raynauds, that weird fishnet like stuff (livedo reticulitis?), pleurisy, GERD and motility problems, hypercoaguability (on warfarin), little blisters in sun, etc.....but, they just don't want to make that call.

Does the Vit D deficiency (I've had that a long time) and high normal PTH and immunoglobulin abnormalities fit with SLE? I know this pancreatitis thing is rare for SLE, but can happen as initial event. I don't know about liver involvement.

Thanks again for responses and well wishes....

 

[cmfinnis]

Hi

I'm sorry to hear you're so unwell at the moment and I really hope the docs can get to the bottom of it- and quickly - so that you can start feeling a bit better.

I know whether it's related to your problem or not but I thought I might as well mention it . . . . ...

I've got low IgG and low IgA and have just been diagnosed with CVID - you can find it on the internet. My Immunologist told me that there are well recognised cases of SLE (which I also have) which 'progress' to CVID. He explained it to me in terms of my SLE being so aggressive and working my immune system overtime that now it has decided to go into 'early retirement'. There is no cure as such (like SLE) but the management is long term immunoglobulin replacement therapy which are 3-weekly transfusions. This is because a low level of immunoglobulins can make you susceptible to infections . ....

I hope you get a diagnosis and treatment very soon

best wishes to you

Cathy x

 

[cispence98]

You know my IGM is always HIGH it was 2x over the high last time I had it checked in April my doctor doesn't seem to concerned but I of course am, beleive me I will be talking to her about it on the 2oth my next visit, I would look for IGA on the internet thats where I get alot of my info!!!

 

[tbunny1]

Wow, you are going through alot right now. Pluerisy is just the pits, let alone to combine it with all the other things you are having to contend with. Be sure to take good care of yourself.

You didn't say, but are you consulting with a rheumatologist? All signals certainly point to an autoimmune/rheumatoid type disease. You stated "they" didn't want to make a firm diagnosis yet. Is this a specialist, or just your primary physician you are refering to?

Further, have you been tested for antiphospholipid syndrome (Hughes syndrome or APS)? With livedo and hypercoagulability, as well as the IgG problems, it certainly would be worth looking into if you have not already. You can finds links with that information on the home page of this site.

Let us know how you are getting along, and good luck!

 

[Lily]

Hi,

You do have a lot going on and it sounds confusing to say the least. Are they just treating with Pred because of the Pancreatitis? Have they offered any other treatment options at this stage?

Does the Vit D deficiency (I've had that a long time) and high normal PTH and immunoglobulin abnormalities fit with SLE? I know this pancreatitis thing is rare for SLE, but can happen as initial event. I don't know about liver involvement.

Some of us are deficient in Vitamin D but that could be for various reasons not directly related to having SLE. They are not sure why I was although I had extremely dry skin and am allergic to eggs and fish, so maybe that contributed. Are your levels coming back up with treatment?

High normal PTH levels are not associated with Lupus. Yours are probably on the high end of normal in an effort to raise your Vitamin D level, that's how it works.

Liver involvement with Lupus can happen but it's not that common as a direct result of the disease. However certain meds can certainly contribute to raised liver enzymes.

http://www.lupusuk.org.uk/lupusandtheliver.asp

Being on Pred (if you were at the time of these tests) would skew a lot of the results so I would not pay too much attention to them as far as working out what is going on. Especially the IgG results.

love
Lily

 

[SLEMAYBE]

Some answers to questions...

I am not on prednisone now, but was last August (for scleritis...which has become a constant problem) when a rheumatologist in Boston (at MGH) drew the blood that revealed the postive ANA and ds-DNA. At the time I still had elevated lipase and liver enzymes.

Thank you Lily for letting me know there is no connection between the Vit D (and high normal PTH) or immunoglobulin abnormalities and SLE. That is helpful.

I haven't been on prednisone for practically a year. This is a very confusing/complicated situation. I have seen the rheumatologist in Boston once last summer. I have recently seen GI in Boston as well and am now hoping that the liver specialist here can help me. I don't really have the money or desire to travel all over the place to find an answer (feel like giving up and trying something alternative). This is very frustrating and I know that everyone on here knows that frustration.

Thanks for the support and answers...

 

[SLEMAYBE]

Immunodeficiency

I think there actually is a link between immunodeficiency and SLE.

 

[cmfinnis]

Yep - you're quite right -

I have CVID - on that page near to the top of the list as 'common variable immunodeficiency syndrome' and sle. With me my SLE was diagnosed first but I actually had low immunoglobulins before my SLE was diagnosed as well, so who knows which came first.

My immunologist told me that SLE can CAUSE an immunodeficiency - albeit quite rare but it is very possible.

Can you get referrred to a specialist in immunodeficiency? That's what I did . .. . and they do lots of specialist tests and vaccinate you to see how well your immune systems' actually working

Thank you for the link and

Good Luck
Cathy x

 

[SLEMAYBE]

Thanks again

Thanks for the responses again and Lily, sorry I reread what you said and you didn't say anything about a disconnect between immunodeficiency and SLE.

When this all started for me it was right after I had a surgery that required four vaccinations...makes me wonder if that's what kicked this off. In that surgery they also put an artificial mesh on my diagphram. I asked the surgeon if that could have triggered it and he said "No" quite definitively.

I'm waiting on more blood tests to see if they are going to do a liver biopsy, but I am going to ask about a referral to an immunologist.

Thanks again!!!!!