Steroids and pancreatitis

Last week I experienced abdominal pain and nausea and kept waiting for it to go away. I kept thinking I had some kind of virus. I gave in and went to my primary on Monday and he sent me straight to the ER. I was admitted for testing and they discovered I had pancreatitis.

I can’t tell you how many people asked me about drinking since this disease is found frequently in alcoholics. They had a GI md see me and he was an as… When I told him about my pain he said it was just a muscle spasm and to put a heating pad on it. He must have never looked at my labs which showed my 16000 WBC and my elevated amylase. The next day the nurse practitioner from that office stopped by and we had a detailed conversation about causes and she thinks it is because of all my steroids the past year.

When I see my rheum in a few weeks I want to ask her about whether this affects my use of Plaquenil. My primary told me to hold off on taking it. My Sjogren’s has not been stable and that is the reason for the frequent prolonged use of prednisone. Does anyone else here have a history of pancreatitis? Has it become chronic? How do you handle meds?

Funny…my rheumy put me on Plaquenil and not steroids specifically because they cause so many serious side effects. He'd rather take the time to let Plaquenil build up and only use steroids if absolutely necessary. That sounds like scary stuff…..and I cannot believe a doc actually told you to a heating pad on it. Did his diploma smell like Bubble Gum? LOL

I love the description about the bubble gum diploma,

I was on Plaquenil to start since last March but I kept getting new symptoms. The myositis was the worst where I could barely walk. I have had many flares that wouldn’t quit. Just as I was weaning off last month I had the asthma attack from hell. I couldn’t control the heavy wheezing and my primary said I wasn’t getting enough air into my lungs. I did a short high burst then tapered. Just as I finished that my train wreck body suffered a foot sprain of the ligament so the podiatrist ordered ibuprophen three times a day and days after that the symptoms started.

There has got to be a better way but my rheum said she is not going to change treatment.

I’ve had some nasty SE’s from steriods, but not that particular one. That doctor with the heating pad suggestion is a jerk. Frustrating and frightening as doctors like this are dangerous. Stay strong.

Hi Cassi,

We cannot forget the effects Sjogren's can have on our organs. DLT and I had a discussion going about this a few months ago, but I cannot get the search engines to bring it up, so I'll look for some links on the net for you.

I was admitted to the hospital through the ER in the 1980's with an inflamed pancreas and heard the same thing, was accused of being an alcoholic! After being there for 5 days got into a shouting match with the surgeon about this, on the 6th day he apologized and told me he thought it was from my gall bladder, although he could not prove it from the tests. 20 years later was admitted again, this time they discovered my GB was totally dead.

The gall bladder was normal size, no stones, just dead, and stuck to my liver.

Looking back, I think it was from Sjogren's, as I cannot tolerate prednisone, and have only taken it a few times in my life. I still have pain there, never sure if it's the pancreas or hiatal hernia. I think the haital hernia is from all of the vomiting I did before they finally discovered my gall bladder was no good!

http://www.ncbi.nlm.nih.gov/pubmed/8995954

http://www.joplink.net/prev/200105/1.html

As you know, I'm not a Doctor, but sometimes the Doctors know less about Sjogren's than we do! Don't listen to their bull about it always being alcohol related! That infuriates me!

Here it is, here is the entire discussion we had on pancreatic involvement

http://www.sjogrenssyndromesupport.org/forum/topics/pancreatic-involvement

Happy Independence Day everyone.

Thanks for the link SK. I think the nurse practitioner from the PA’s office was smarter than the GI doc. She was more interested in listening to me although I think Sjogren’s was not something she was overly familiar with. I specifically asked if this could be related to Sjogren’s but she didn’t know.



I decided to do some research and discovered there is a small percentage of patients who develop pancreatitis from Plaquenil. I am going to hold off on my meds as my primary md suggested until I see the rheum.



Trying to be cautious so this doesn’t happen again. I was really ill and it scared me. I have to say I am proud of my teenage son who stepped in and took charge and was so protective of me during my stay in the hospital. This crisis strengthened our relationship.

I’m not happy to hear that about Plaquinil as I have not started it as yet. Last thing I want is to be at the mercy of the ER again. They may be great for trauma, but don’t seem to be well versed in autoimmune. Something else to talk to my GP about.

Glad to hear that your son was there for you! Cherish that!

Of course mentioning this will only send me either to the digestive disorders MD again, or in for another battery of tests on the pancreas. I tell you, it just never ends! I cannot begin to express how sick and tired I am about Dr visits, tests, bills, and all that goes along with chronic illness!

Dear tymmesome!

Hope you had a happy Independence Day too! So sorry I did not respond yesterday, I meant to and got involved with the pancreas discussion, and had too many things going on here as well! Goes to show you where/how the mind goes!

tymmesone said:

Happy Independence Day everyone.

Home less than 2 days and back to nausea and not being able to eat. So worried this is going to send me back in the hospital. Yesterday I was hungry but stuck to the jello and applesauce but I cheated and ate the equivalent of 2 oz from the ribs that I made for my son. Now I am paying.

Not a recommended weight loss method.

Hi Cassi,

This is not good. I’m surprised they did not give you something for the nausea. Perhaps there is something in your cupboards to help with this. I was told to eat mild vegetables and non acidic fruits. I’m on my phone. Don’t yet know how to send a link but perhaps you could google it. Something like ’ doctor recommended diet for pancreatitis’.
Hope you soon get some relief. There are foods that just do me in like peppers, hot dogs, they are the worst. I used to love spicy hot foods, still do, but just cannot.

BTW
, did the Dr tell you that you could use Malox? I used to drink that by the gallon. Also would like to know if you still have your gall bladder, if so did they do all of the available tests to make sure it is still healthy? You know I’m not a Dr, but I am concerned, been through it, know how bad you feel.

I have a list for but the problem is I just can’t eat. I have no appetitemy hand on the test in there is nothing wrong with my gallbladder. My pancreas was affected by the medications I was taking.I am going to wait until Monday and then call the doctor if it doesn’t improve. Thank you so much for your suggestionsand thank you for caring.

Darn Android the way it interprets things. It was supposed to say I had all my tests. I am also sending this from my phone so I know it can be challenging

Hi, I have been reading all the posts concerning the pancreas and have also had/have similar stories. I am at the er at least every two to four months with uncontrolable vomiting that can keep me from even keeping down a sip of water. I usually get the same treatment everytime i go I.V. fluids and nausea meds. and if i have to lay there for more than 3-4 hours i'll then need some sort of pain meds.. Each and every time i go i have the same argument with the docs. They say your red blood cells are enlarged and miss shapened what ever other tests they run suggest something going on with the pancreas therefore i must drink lots of alchohol. I drink NO alchohol have never been able to. I would love to sit back in the evening with a glass of wine but cannot. In a matter of 2 yrs. I lost over 30 lbs. Now comming full circle ALL of these weird and scary symptoms are due to the sjogrens and other autoimmune dieases that I have. I would have told that doc. to put that heating pad where the sun don't shine. I have lost faith in all doc. they are not educated about these diseases and don;t seem to want to be. It sucks that we pay them and then have to turn around and explain to them what we have isn't that what they get the big bucks for? It's a LONG frustrating road and so many people are on it, I wonder if the medical profession will ever get it.

Cassi…the whole thing is making me a little nervous too. I have been dealing with stomach pain & nausea this past week. Its been out of the blue but I have lost a few pounds because of it too. I had thought maybe it was the calcium/D3 supplement as it is the only new addition lately but maybe I should pay more attention. Its not pleasant, to say the least. I am very careful about knowing what the side effects may be, etc but we can't catch them all. Please keep me posted. I have a rheumy appt in a couple weeks…sounds like something to mention.

Cassi…the whole thing is making me a little nervous too. I have been dealing with stomach pain & nausea this past week. Its been out of the blue but I have lost a few pounds because of it too. I had thought maybe it was the calcium/D3 supplement as it is the only new addition lately but maybe I should pay more attention. Its not pleasant, to say the least. I am very careful about knowing what the side effects may be, etc but we can't catch them all. Please keep me posted. I have a rheumy appt in a couple weeks…sounds like something to mention.

Wonderful about your son!!! Feels great to have your kid step up for you.