On Lupron, Abi, Prednisone for 7 months. After month 2, I started getting getting jowls, puffy cheeks & biting the inside of my cheeks on occasion while eating normally.
Read that prednisone can cause “moon face” as a SE. A real swelling of the face in extreme cases. The only thing one can do is reduce salt & drink plenty of water. I cut out all added salt & use a salt substitute. The swelling went down and the cheek biting stopped after a couple months.
Last week we traveled to visit family for celebrations. Lots of home cooked meals cooked with lots of salt. About day 4, I noticed my face swelled again and I started biting my inner cheeks again due to the swelling. I didn’t think that it would reappear so fast. Lesson learned.
It’s much easier to manage my diet at home, very difficult while traveling and sitting down to special family meals.
Anyone else having this reaction to salt while on prednisone?
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I was told that my 5 mg prednisone daily was simply a replacement for what was damaged or made ineffective by the ADT. So I'm a little surprised that there would be any side effects, including a reaction. After 9 months I haven't noticed anything.
it is not really a replacement. It is thought the true replacement dose is 3.75 to 4.25. There are plenty of studies demonstrating the 5 mg has side effects over years. I have treated 100s of patients with 5 mg of prednisone for autoimmune disease and can’t remember moon facies being an issue in them. At higher dose it is very common.
Grandpa4. I believe my system is very sensitive to some things. I used to use salt liberally on all my food prior to taking prednisone. Eliminating most all salt from my diet definitely reduced the swelling of my cheeks.
It’s interesting that you used it to treat autoimmune disease. I developed sensitivity to gluten 5 years ago (dermatitis herpetiformis), but once I was on prednisone this condition and sensitivity went away.
Was you gluten sensitivity associated with a positive blood test for celiac? If so then prednisone may decrease the symptoms of a gluten sensitivity but it does not block in the inflammation in the colon which can lead to bowel cancer and other autoimmune diseases. If the blood tests were negative then no big deal. The facial swelling could be from salt retention. If so you will usually see it in your feet and ankles at the end of the day. Push on your ankle bone and see if you leave an imprint.
Grandpa4 when my skin condition appeared (many itchy red bumps & a mouth ulcer) my GP thought the skin condition was psoriasis. Medications for that did not help. Went to a dermatologist and she thought it was sensitivity to soaps and detergents. Prescribed special soaps. That did not help. Finally figured out on my own that it was dermatitis herpetiformis (the associated mouth ulcer was the clue). Stopped eating gluten and the condition went away completely. I never had the full celiac symptoms involving stomach/intestinal issues, so I never had a blood test for celiac.
I agree that this current swelling is caused by salt retention. There is some minor swelling of feet and ankles but cheek swelling is moderate not extreme. This swelling only started after beginning ADT. Higher doses of prednisone can cause “moon face” in some as you know. I find that this smaller dose of .5 mg I’m taking is causing the salt retention.
Now that I know this I will keep avoiding added salt, cured meats and salty products to reduce the swelling. This really limits me to fresh, unprepared foods so I can ensure there is no added salt. Some sodium is necessary, so I will keep monitoring my lab results.
if you had a biopsy that said dermatitis herpetiformis you have celiac spruce. Would be nice to confirm with blood test. If you have it you may want to be careful as it causes more problem the rash. My son has the same issue.
Thanks for you post. Same treatment and I had cheek biting, but didn't recognize why. Been on a Keto diet for weeks, which is generally low salt and it's stopped.
Glad to hear someone else had the same SE and not just me. I’m not on Keto but a low carb diet. I think there are some of use who are very sensitive to some of these drugs whereas others have no SE’s. Also glad you took care of the issue!
My husband has low blood sodium so he needs to eat a lot of salt just to keep his levels just below normal. He has noticeable 'moon face' which really others him. We didn't realize this was from the salt and not a normal reaction to the prednisone. Any suggestions if cutting out salt isn't an option?
Bspouse I use a salt substitute “NuSalt” which is made of potassium chloride. But this would not work for your husband if he needs the sodium from the salt (sodium chloride). I saw photos of “moon face” and that would really bother me too. Have you talked to the MO about this SE?
Sorry to hear that you have other SE’s from prednisone. The cheek biting is very annoying. Once you bite your cheek it swells and scars, then you keep biting the same spot over and over.
I use a salt substitute. They are mostly all made from potassium chloride. Use sparingly on food. If you taste it directly on your tongue it tastes bitter. But it does give food a little salty taste when mixed in.
I read all labels if I have to use something that’s not fresh food. There is salt and added sugar in nearly all products.
“Sodium attracts water. If you eat a lot of salty foods, you'll experience fluid retention (when sodium holds water in your body)”
For me, taking prednisone altered my body chemistry and now salt (sodium chloride) is causing noticeable fluid retention (swollen cheeks).
Using a salt substitute (potassium chloride) helps to greatly reduce the sodium in my system which results in less fluid retention. This eliminated the cheek biting for me. Taking a salt substitute is not the link, eliminating all added salt is the link. The salt substitute gives food a slightly salty taste without the sodium.
You also have to know if salt is added to processed foods you eat. Avoid all added salt as much as possible.
Bonus: the potassium chloride also helps reduce blood pressure!
I’ve been on Zytiga + Prednisone for almost 24 months. I have y on diet and increased my salt consumption this year (travel, family events) and I too have noticed weight gain and moon face. TOL that puffy cheeks and biting them was related to swelling from prednisone. Why PCa treatment is the gift they keeps giving!
Time to cut out the salt. Ugh. Still, Thank you for posting.
I don’t think the cheek swelling is a common side effect for those of us on low dose prednisone. So it’s not listed as a side effect.
I think it is very hard to stick to one’s diet and exercise routine while traveling. I was able to sign up for a one week pass at a nearby gym while out of town. I used the gym every morning. This kept the weight gain away (a SE from the Lupron).
It’s been two days since I arrived back home and I’m on my strict salt-free, sugar-free, low carb diet, the cheek biting is gone now but my cheeks are still puffy. I expect it to take about 2 months for them to reduce down to almost normal size.
I’m resolved now to stick to my diet when traveling. I will bring my own food to family functions. Sorry to disappoint those who prepared the meals. They do not understand these SE’s.
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