. 1. It begins with a question: How does PRP impact weight?
2. Then comes a blank webpage in the PRP Survival Guide . 3. Next is the TRANSLATE botton. Every webpage offers over 100 languages courtesy of Google Translate. . 4. Then we find posts on the subject of weight with feedback from PRP Facebookers. In this case, five posts spawned 160 comments and a poll.
❏ Sharon O’s post: 06/2015 — 18 comments ❏ Murray R’s post/poll: 08/2017 — 138 votes; 83 comments ❏ Kathy P’s post: 01/2019 – 31 comments ❏ Mike M’s post: 09/2020 — 43 comments ❏ Penelope P’s post: 01/2021 — 13 comments
5. Next we build a spreadsheet with unduplicated comments. In this case 160 comments were pared down to 85 (See list below)
The real challenge is to decide what the weight related issues are. What conclusions can be reached? Are there any unresolved issues or new questions to be pondered?
| Alan B | Maintained weight |
| Amanda H | I would answer but it wouldn’t be accurate as I have an eating disorder. So I would say have dropped weight but not bc of meds or prp. But yea, I yo yo between anorexia relapse and recovery. Lol |
| Aziz T — Laurens, SC | I lost about 15 lbs (7 kg) during the acute phase. My appetite is back and I have already gained a third of it back. Guess you can say I lost it, now I am finding it. |
| Azucena R | I wouldn’t be surprised. I have suffered from over weight for quite some time now and now that you mention it, looking back to when I first gained a lot of weight is around the time my multiple illness began to manifest including PRP. We should bring that up to our doctors. |
| Bert S | Overweight |
| Beth R | I lose weight. I’m fairly small anyway and weight loss was nothing dramatic. Just enough to make me look a bit skinny and sicker. |
| Bill M | I initially gained weight prior not my diagnosis while being prescribed prednisone. Overall, however, I lost 20 pounds during my PRP journey. While in remission I have gained back the 20 and then some. It will go back down in the Spring when I can get back to swimming with my 7-year-old granddaughter daily. |
| Brenda M — Kent, England, UK | Yes, I lost 33 lbs (15 kg) and began to wonder when it would stop… It has stopped and has now been stable for at least a year. (currently two years, nine months in) |
| Bronagh S | I lost a stone |
| Bronwen S — Auckland, New Zealand | I lost weight and didn’t have it to lose, just my body using so much energy replacing skin and trying to keep warm as I was so cold all the time. It was great as I ate whatever I wanted including all the high fat foods good for skin like avocado, oils and smoked salmon yum! |
| Bruce A | Was 108kg now 99.5kg in seven months. |
| Burt U — Kenedy, TX | PRP (especially when erythodermic) will start to consume muscle mass at an alarming rate — high protein foods (salmon, meat, etc.) will help some. Keep trying to exercise, weight training helps. Do you have a good dermatologist? Many prescription meds will help. I would be happy to talk by phone if you think you need someone to talk too. Many good people on this site will do the same. Let us know how we can help. |
| Cami C | Lost 18 pounds — gained it all back though |
| Carol T | Stress is thought to be a trigger for PRP together with a traumatic event…….redundancy, major surgery, death, etc. When my Dermatologist and I trawled through my recent history, major surgery plus my mother being diagnosed with Altzeimers plus a clash of a recently prescribed statin all flagged up. |
| Charmaine K | Lost 22 pounds |
| Correen P | Lost 22 then put 10 back now I am holding loads of water weight again as my leg is swollen only my right , I’ve had some weird stuff the last couple months , abscess formed n drained, and now this pyroderma again on my inside thigh which is so so painful all secondary to my prp |
| Curtis S | Went from 215 to 185, now at 195 but still battling PRP.. I add that my doctor told me that my body was so busy producing skin that my metabolism was going a thousand miles an hour therefore the weight loss. He said I was burning calories like I was running a marathon while just sitting. I also add that I hav… |
| David K | 15lbs first month of diagnosis. Sadly slowly returning |
| Debbie R | Lost approx 60 lbs and now maintaining that loss |
| Deborah B | Lost 57, but gained 25 back (thanks to prednisone in part) |
| Deborah C | I gained about 12 pounds in the beginnng. Lost most snd seem to regain when flaring. |
| Deidre H | Lost 45 lbs. have gained back 15 |
| Eileen S | At first I was put on prednisone n blew up! Then tapered off! Then last year )3) year I developed cellulitis n during my recovery from that lost 20 lbs However I found them again! |
| Erin J | My husband lost 20+ pounds in 4 months- just while he was on the acetriten. He gained it back! |
| Gail C | 33 lbs |
| Gail S | I lost 30 pounds from Sept ~November |
| Gary R | 180 prior to PRP. As high as 205 on prednisone and massive swelling. Currently at 171 and on Methotrexate which leaves me feeling pretty crappy for 3 or4 days after my 25mg dose. Don’t really have much of an appetite right now. I asked my doctor last week if he was at all concerned about the recent weight loss. I’m down to 168 at 5’11”. He said not unless I was having night sweats or other issues. |
| Glen M — Glenview, IL | The intense phase with erythroderma has this effect. I too lost substantial mass very quickly and fought to preserve and regain strength in the first few months and subsequent time. Increased skin turnover, increased metabolism as monitored by BP, heart rate and loss of body temp has a deleterious affect causing exacerbating fatigue that we associate with this disease. Protein is harvested from muscle which again leads to more fatigue. So remember, to take protein supplements along with biotin and vitamin D, and general increases in electrolytes to help mitigate these effects.There is a big need to exercise as much as possible throughout the intense phase to speed recovery by keeping as much muscle function as possible. The alternative can be a lengthy return to normal functioning after the skin symptoms are gone. |
| Gwen A | I think it is the drugs. |
| Ineke B | Yes. I’ve lost 40 lbs. I never thought I’d be trying to gain, but I’m feeling weak and puny. |
| Jan T | When I talked to my dermatology nurse about being unhappy that I gained 10 pounds, she was vehement that I not try to lose weight right now. She was very happy I did not lose weight with PRP. I was 118 lb when PRP started and I really am glad I didn’t lose 25 pounds! I’m trying to stay about 125 (I am 5-feet tall). I thought I’d try to go out for a bite to eat with a friend without my 24/7 nitrile gloves. Not only were my hands too yellow in sunlight (my house has comfortingly dim light LOL) but I could NOT turn the front door knob. I can’t wait for the day when I don’t have the dryness, slickness, and need for gloves. I also gained water weight in the beginning which I’m not counting. I gained 10 pounds, and now trying to lose it. I had been very, very active before PRP. Now less so, and I snack for comfort and distraction. |
| Jandina G | When I was first experiencing the symptoms of PRP I gained about 10 lbs in water weight. My legs, ankles and feet were crazy swollen. I’ve had PRP for 10 months now and I have lost the water weight but I have also lost muscle mass. I was in pretty good shape when the disease started. Due to lack of energy, cracked feet and the fact that I don’t sweat I haven’t been consistent in any workout routine. My old clothes still fit, sorta, but in a completely different way . I just started Humara. I am optimistic that I will experience some healing in the next 4 weeks or so and enjoy being active again. Thank you |
| Jane H | My partner lost Somewhere around 20lbs |
| Janell P | Yes, I lost 10 pounds. Drink a lot of water and eat lots of protein. The body is working hard. |
| Jean N | Before being diagnosed I lost around 20 pounds but then gained some back. |
| Jeannine E — Clearwater, FL | 35 lbs (16 kg) |
| Jerry S | 218 when it hit – up to 223 at month four – now at 212 at month six. Didn’t affect my appetite at all, or taste buds, so i attribute the weight loss to excelerated metabolism. |
| John M | Lost 20 lbs in 3 years, have gotten 5 back in last 6 months |
| Judy Z | My husband was/is on a high protein, high carb diet to fuel all the other systems because of the loss of skin and the toll it takes on all the other organs. We are tapering down the food intake now as he seems to be in a kind of remission so no more blimping out! |
| Karen A | Yes especially in the beginning.. Initially lost for almost a year then with meds water retention and inactivity gained + weight. I honestly have to say at this point nothing wrong with my appetite even tho extremely prp’ed. Lost in a year: about 10 or 15 lbs |
| Karen B | Lost 30lbs. Then put 15 back on due to lack of energy and stamina to exercise! Now, in remission I am beginning to get fit again. |
| Karen B | I wish the opposite ugh |
| Karen G | No, because it takes months for your diet to clean out the toxins and repair your gut. However, my doctor said she’s never seen a patient’s kidneys do so well on cyclosporin, and my toxins test came out lower than any patient she’s ever seen. I think that’s a result of the diet. (My acute stage of PRP was only a few months. It might’ve been longer if I wasn’t on the diet). My integrative medicine physician is certain that my diet will rid me of PRP faster. All the literature on inflammatory disease insists on stopping dairy/gluten/alcohol/caffeine/nightshades |
| Karlis L — Lewiston, MI | Losing weight is the only good thing about PRP. I can eat anything I want and stay thin. When I am on prednisone I do have to use the treadmill. |
| Kathy D | I lost originally but now meds have caused a weight gain. |
| Kathy P | January 31, 2019 Was weight loss a part of your journey? |
| Kim R | At first the meds made me so sick I couldn’t eat and plus unable to get up OFTEN to feed my face I lost weight. Now that I am off those meds I’ve gained several pounds back. |
| Laura W — West Grove, PA | I have lost 5 lbs ( 2.3 kg) since March and can’t afford it-I have Cystic Fibrosis. I am doing well on the Isotretinoin, but really hope I can gain my weight back! |
| Leanne C — Sydney, NSW Australia | Yes I lost 18 lbs (8 kg) within about three months. I agree with Bronwen, trying to keep warm and my body using up all my energy to replace my skin. |
| Leslie L | Yes. It came back as I got better. Dr. told me my heart rate would increase and so did my metabolism! |
| Linda B | Yes, during the acute stage, and followed by weight gain! |
| Linda B — Oswestry, Shropshire, England, UK | I lost weight during the acute phase. My appetite was poor, but I tried to stick to a healthy diet and increased my water intake! As Brenda says see your doctor if the weight loss continues. |
| Linda U — West Newton, PA | I lost 14 lbs (6.4 kg) so far. I’ve had PRP 6 months. I’m eating healthy and a lot. Dr told me it’s like you run 12 miles everyday. That’s how much energy we are burning to make new skin. That’s partly why we are so tired. |
| Lorna R | I gained 22 pounds at the onset, all of it water. I actually lost some weight over the 4 year duration. Not an unhealthy amount. I gained all of it back as I recovered. |
| Louneille M | I lost about 15 lbs., but went on an anti-inflammatory diet for a few months. So, didn’t eat much but fruits and veggies and a little pork. No dairy either. Am now getting back to a normal diet and my appetite is also increasing and am snacking, too. I have some lower back pain on one side, but it’s tolerable. Started a little walking and weights since I was quite sedentary when my PRP was at its worst. Perhaps not moving around much creates body aches? |
| Marianne B — San Diego, CA | I put on weight because of steroids Some positive news — my pre-PRP clothes fit me! I gained over 40 lbs (18 kg) from being mis-diagnosed in the beginning and put on massive amounts of prednisone. It has taken me close to 2 years. Have faith.— March 4, 2015 |
| Mary-Alice F | Yes! |
| Max W | I’ve lost a lot of weight. the combo of my depressed immune system plus Taltz, makes me sick very often. |
| Meagan W — San Luis Obispo, CA | Yes! I have lost 20 lbs (9 kg) since onset 8 months ago. I am 5’11” and for the last 15 years my weight has been consistent at 135-140 lbs (61-64 kg) (…with the exception of pregnancies … but now I’m down around 120 lbs (54 kg). Not dieting but feel depressed and often nauseous…especially around food. I feel weak which is making packing and moving this week very difficult |
| Michael D | from 155 to 138 |
| Murray R | There can be many reasons for weight gain or loss, some having nothing to do with PRP specifically. People might have another disease or medical problem for example. |
| Nana B | I’ve lost 40 lbs since the beginning of February. |
| Nancy J | Lost 20 to 25 pounds. Gained it back after I got better. |
| Nerysa G | Same, I was under stress the year I had this disease. Can’t think of any cause, I am not sensitive or allergic to anything, I was never diagnosed of any disease and not taking any medications. Just suddenly experienced severe itching few months after my father died ..then my prp story began… |
| Nicola G — Central Otago, New Zealand | If you feel fine and you’re not worried by your weight loss, no prob. I lost weight when I tried a stupid diet trying to help my skin, made the rest of me sick and did nothing for my skin! You being happy with your body weight is what counts. Up and down, lost weight trying a stupid diet from a naturopathic #%^+. Gained weight because I couldn’t do my usual stuff. Lost weight when I was suicidal. I don’t actually weigh myself though I get weighed once a year when I visit my derm. I guess it’s written in his records. My GP doesn’t bother with my weight. |
| Penelope P | January 298, 2020 Hi prp family, I have a question when I was diagnosed few years back I was under stress , and had also put on a lot of weight 80 kg then up to 90 kg plus I am nearly there again!. Anyone else with weight problem that could have brought on prp? As they are now saying weight issues bring immune systems down? |
| Phil W | 10kg in early days. |
| Randy R | Lost 50 lbs . But it went back after remission |
| Richard L | In the acute stage, my weight went from 155 lbs to 140 lbs. as I left that phase, it slowly climbed back to 150 lbs. I am essentially done with PRP now and it is going to 157 lbs. Need to to bring it back down a bit. |
| Robin M | The steroids I took made me gain 60 pounds, which I haven’t been able to shake in the decade since I had active PRP. |
| Sam R — Cairns, Queensland, Austrailia | Gosh I put on about 42 lbs (19kg) when I had it, maybe due to all the medicines though |
| Sharon O — Toronto, Ontario Canada | June 10, 2015 Has anyone dealt with weight loss during PRP, some of my friends have made comments about how thin I am, I feel good and I certainly eat healthy and lots (love food). I have lost 60 lbs (27 kg) since having PRP. Any comments? |
| Stacey L | I have had PRP since I was 4 years old. It has slowly worsened in adulthood. I have gained weight over the years and wondered if there was a connection between the weight gain and worsening PRP. |
| Steven C | Gained 27 lbs |
| Suzanne M | Sorry I lost 30 pounds. I also follow, well not to a tee a macrobiotic diet which I think has contributed to my weight loss even though I am still on steroids. |
| Tami C | Lost 18 lbs. But gained it back : ( |
| Tami C — Minnesota | I have lost 21 lbs (9.5 kg) |
| Tara F | Did you find that there was a great improvement after quitting dairy and wheat?? |
| Teri Ro | 15lbs. |
| Terry Jean A | I’ve gained about 25lbs. In the three years I have had PRP. Still fighting to not gain anymore!!!!! Still have PRP!!!!!!! |
| Tierney R — Virginia Beach, VA | I can’t lose weight even if I try, let alone have it just drop off. |
| Trine T — Aarhus, Denmark | I have gained 9-11 lbs (4-5 kg) |
| Verner H | I put a lot of weight on, all down to me retaining fluid and mostly due to me comfort eating. I have had several periods when my PRP hasn’t been as critical and I have managed to lose the weight I gained. My legs swelled up hugely at one stage all due to fluid retention. But my weight gains have all be down to comfort eating which helped me through the very bad times. |
| Vibeke K | Gained approx 15 kg. |
| Victoria C | I’ve gained almost 15 pounds. |
| Vivienne Perry | My weight has gone up and down but has now leveled off to nearly where I started. |
| Wayne M | Yes |