So over the last few months I had dropped roughly forty pounds even while on 15-20mg of prednisone. My first course of prednisone which I took concurrently with taking pancreatin, felt fantastic and had a great deal of energy with very few symptoms. I weaned off both the pancreatic supplements and prednisone for a few months, and then resumed the prednisone, but not the supplements, after a two month hiatus. Over the last few months, my health really took a nose dive. I was sleeping for 12-16 hours a day, waking up with little to no energy, felt weak, and my muscles were disappearing really quickly.
I've always been physically strong, able to lift weights, and was fairly athletic considering everything that has happened to me. Over the last couple of years, I've noticed subtle physical changes, but they really intensified over the last four months. I literally could not keep on weight. My muscles had all but disappeared, my arms and shoulders were thin. You could see the ribs on my upper chest; I had lost my chest muscles. Something was causing the dramatic loss of muscle and weight. I brought it up with doctor after doctor and they all seemed unconcerned, "hey weight loss is a good thing!" But I knew something was wrong.
I even started having difficulty breathing which "seemed" to be a byproduct of the extreme fatigue and weakness I was experiencing. Now I've been on digestive enzymes before and gained a large amount of weight during my first course of prednisone with them, but I assumed it was just the prednisone and not the enzymes. I made a post a few weeks ago and I said I'd go back and try them again... and I got around to starting them again last week.
Oh my God. I don't know what else to say. I've already gained eight lbs back in five days. My energy levels have skyrocketed and I'm sleeping for my usual six to eight hours a night. I've gone from feeling like I was dying to feeling like I want to start playing basketball and working out again. I cannot explain how much of a difference it has made. I knew something was wrong and while I'm not going to say definitely that this is what it was until I get testing done, this is something I'll be bringing up at my Mayo appt. on Wednesday.
Now there's not a lot of information on pancreatic insufficiency except a few very recent studies linking mild exocrine insufficiency to Sjogren's syndrome. The condition is much more common in dogs than humans. This is something they're starting to research more recently. In some patients there can be pancreatic damage in certain ducts that doesn't necessarily cause full-blown pancreatitis, diabetes, or chronic pain associated with pancreatitis. There's exocrine function (pancreatic enzymes) and endocrine function (related to diabetes).
I'll be updating later with what the tests reveal but man... I just wanted to let you guys know how much better I feel. I was REALLY worried about cancer, and it's amazing how dismissive doctors were when I lost 40lbs over six months while taking prednisone. If I was a physician then that would've been a big red flag in my book. Anyway, it could all be a coincidence and maybe I'm just randomly feeling better... but :D we'll see. :) Even the shortness of breath seems to have improved dramatically; I "think" it was being caused by me being so weak that I was struggling to breath. I was really feeling THAT bad.
Anyway, wish me luck with my appt - hopefully all goes well and thank you for all the support while I was going through all this crap. I'll hear from you guys again soon.
If any of you guys are experiencing weird weight loss, fatigue, weakness, despite maintaining a good appetite then this may be something you want to look into.
QuoteIn previous studies we reported evidence of subclinical exocrine pancreatic insufficiency in primary or secondary Sj?gren's syndrome (SSI, SSII) and rheumatoid arthritis (RA). In present study we evaluated the occurrence of pancreatic duct antibodies (PDA), and their relationship to exocrine pancreatic function in 36 women. Of these patients, 12 were classified as SSI, 12 as SSII, and 12 as RA. Exocrine pancreatic function was evaluated using the Secretin-Caerulein test (S.Cae test). The indirect immunofluorescent technique was used to evaluate patient sera for PDA. S.Cae test results, compared to controls, showed a statistically significant decrease in duodenal juice volumes, bicarbonates and enzymes in 58.3% of SSI, in 58.3% of SSI and in 30% of RA
60% of Sjogren's Syndrome patients had reduced pancreatic function according to this one study. That's pretty significant if you ask me!
QuoteAfzelius et al,24 2010 Secretin test by magnetic n=12 pSS 25% morphological alteration. 2 patients with changes
resonance cholangiography of chronic pancreatitis
20% slight decrease in exocrine function.
One patient presented diarrhoea and 4,
infrequent slight abdominal pain
This is a really good read for anyone interested in learning more.
http://www.google.com/url?sa=t&rct=j&q=mild%20exocrine%20pancreatic%20insufficiency%20sjogrens&source=web&cd=13&ved=0CC8QFjACOAo&url=http%3A%2F%2Fwww.reumatologiaclinica.org%2Fwatermark%2Fctl_servlet%3F_f%3D10%26pident_articulo%3D90002143%26pident_usuario%3D0%26pident_revista%3D373%26fichero%3D373v07n02a90002143pdf001.pdf%26ty%3D55%26accion%3DS%26origen%3Dreuma%26web%3Dwww.reumatologiaclinica.org%26lan%3Des&ei=2XhLT7u4CbSEsgL7tOnqCA&usg=AFQjCNHYqDU9v3vsnwgLJwVRLvsJnCyuag&cad=rja
It sums up all of the studies involving exocrine dysfunction and Sjogren's syndrome. I think there were a total of about a dozen studies. This is really something I've never traditionally seen associated with SJS and I don't think it was even mentioned in the handbook, and it's certainly never been brought to my attention by a rheumatologist. Between 20-50% of patients have some form of pancreatic involvement.
Supplements are cheap but you have to take a lot of them with each meal. I'm not sure what testing involves but I'll fill you in once I have it done, hopefully. I don't really want to name any name brands because I'm don't want to appear to be a shill, but you can find pancreatin from any health food store and it's basically the same stuff you get with a prescription. It just isn't as potent. You have to take quite a few of the pills per meal. Just make sure you get a solid brand and there's really no harm in "trying" them to see if you notice any difference. They aren't terribly expensive.
i find this interesting. I am sorry you lost so much weight. I have dropped a number of pounds myself and have a few to go. 375 was my highest I am at 255 and hope to reduce to 180. The loss of muscle mass before fat was an interesting twist.
Thanks for sharing - I've lost weight too and can't put it back on, so I'm still looking for reasons. What tests are you having done to determine pancreatic insufficiency? I'm going to ask to be tested for CD but if there's a simple blood test to check for digestive enzymes, then I'll talk to my rheumy about that too.
Glad you're feeling better.
you are on to something!!
I also feel that at the root of a lot of my issues is my gut . I believe many of my symptoms are due to vitamin and mineral deficiencies ( I take in lots- just can't break them down and retain them). Insufficient enzymes to digest food makes sense.My naturopath is also inclined to this way of thinking and put me on both digestive enzymes and hydrochloric acid supplementation.I'm not "healed" but I am managing without standard meds thus far.
I also feel I am unable to process proteins adequately( I am no longer able to digest casein, gluten etc.) of course this leads to other problems related to inadequate protein.
So glad to hear you are feeling better! Thanks for all the great clinical studies as well- very excited about trying to get to the root of these issues instead of merely treating each symptom!
Quote from: Joe S. on February 27, 2012, 06:39:38 AM
i find this interesting. I am sorry you lost so much weight. I have dropped a number of pounds myself and have a few to go. 375 was my highest I am at 255 and hope to reduce to 180. The loss of muscle mass before fat was an interesting twist.
Joe, I've always been been the person who eats, eats, and eats but could never gain weight so I didn't have much fat to lose to begin with, but I did start losing the little that I had. A lot of people think people like that just have a high metabolism but... that's not really a scientific explanation. There has to be something wrong when someone can eat 4,000 calories a day and not gain weight, but this may have been an issue for quite a long time because putting on weight has never been something I've been able to do. It just seems that it got worse in the past two years. 145 seems to be the lowest I've weighed in over 12 years.
You've made quite a lot of progress though, dropping 150 lbs is no easy feat...that's for sure. You only have a little to go, good luck!
Thank you. I am sorry that you can not gain. I have run into a few people that could not gain. I hope you can get this resolved to your benefit.
I do not find it at all strange that pancreatic enzymes would help a sjogrens patient.
After all, we sort of resemble a cystic fibrosis patient with our thick mucus that is hard to move.
The cystic fibrosis patient takes the enzymes(our son has a friend with CF) at meal time and this helps them a lot with their mucus issues.
If our bodies are not able to make the right amount or right chemically appropriate secretions in the pancreas it is not far fetched that a supplement of enzyme may help. There is so much we don't know about this darn disease and we all have to keep our eyes and ears open. IRish
I searched for digestive enzymes and there is a boatload of the things! Anybody have any recommendations? What do you take? Brand, strength, times of day?
Your story shows that it is important to keep searching for answers beyond what the doctors tell us. It is great that you identified a solution to enable you to gain weight. 8lbs in 5 days is terrific progress. You are on an upward trend.
Would be interested to learn what Mayo has to say about your condition and why they think the enzyme supplementation works.
Please keep us posted on the Mayo visit and good luck.