Posted , 10 users are following.
Has anyone dealt with this problem? I have steadily been losing weight, even on the prednisone. I would like to start putting on weight, but cannot seem to find foods that "stick to the bones". Any ideas. Seems like when I eat too much sugar, dairy or wheat it flares up the PMR. I am very frustrated and just want to get on a few pounds and eat normal again.
0 likes, 31 replies
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Anhaga sierrapamela
Posted
Wish I knew the answer to that question myself. I've recently read that when older people lose weight they often find it very difficult to regain it. Which must be why we are supposed to have a "middle aged spread" as that is insurance against future weight loss. I eat nuts and seeds; they are high in fat but I think all they do is help me maintain the weight I have, hard to eat enough to start packing on the pounds again.
There are food supplements but I'm wary of them as they seem to be chemical soups. There is one brand, Huel, which looks promising but I can't buy it in Canada where I live so can't attest to its flavour, etc.
alebeau sierrapamela
Posted
I also lost weight in the first year and I have to think it was a combination of pain which was not managed well by doctors, as well as taking way too many pain killers (Tylenol 3) which I am now free of. Once I managed the pain (by splitting my dose to 1/2 morning and 1/2 night my appetite returned and I put some weight back on. Not sure if that applies to your situation. I have also always been slim (145 to 155 lbs) my whole life. I was down to 135 until I got the pain under control. As a result I am reducing the prednisone very slowly as I want to avoid having too much pain. Presently at 10 mg and was diagnosed with PMR in November 2018.
Good luck.
sierrapamela alebeau
Posted
This is so good for me to hear. i am at 10mg of prednisone and think I need to stay at this amount. It is the pain that makes the weight come off. I was at 138, but now I am down to 108 lbs. Do not like this at all.
EileenH sierrapamela
Posted
Eat full fat products - won't upset the PMR as much. Carbs often do, especially wheat and sugar.
Something in the inflammatory process causes weight loss - never did for me mind! And some people lose weight on pred - but I don't know why!
My husband has a weight problem - he is officially malnourished. Not my fault, he just eats nothing - 2 fish fingers and 6 fries is a normal meal for him! The hospital provides meal supplements from Meritene - so can't be that bad!
sierrapamela EileenH
Posted
Yes, I think that the prednisone did make me lose weight as well. I know for most it makes people gain weight. Maybe the stress of taking care of my husband for 8 years left me with no cortisol and when he died and the PMR hit me - the prednisone was just what I needed.
AllyCD sierrapamela
Edited
hi, I have been skinny all my life but lost a stone in weight when first diagnosed with pmr 3 years ago at age 68. Life style was too hectic, 97 year mother lives with me and 42 year autistic son and I run self catering business and small farm. Pmr was my wake up call. I began to indulge myself and without following any diet ate just what I felt like. This turned out to be mainly homemade sourdough bread, spelt bread and rye with proper butter, fresh eggs, salad and bucket loads of olives. Occasional red meat. I drink filtered water and the odd glass of wine (chocolate also snuck it's way in) but after three years the weight came back plus a bit extra. It has also been a learning curve on stress management. Hope you find the food right for you. I am now on 3.5 preds and feeling more like me. stay safe and well.
sierrapamela AllyCD
Posted
How long did it take you to get down to 3.5 mg prednisone. PMR was also my wake up call. thank you for sharing.
AllyCD sierrapamela
Posted
I dropped from 15 to 12.5 and then to 10 in year one and all went swimmingly. Then came the struggle and it took a further year to get to 7. Year three took me down to 4.5 but then Covid 19 arrived and gp advised quicker taper! Tried for 3.5 but flared so went back to 4.5. have been alternating between 4 and 3.5 for several months but settled mainly on 3.5 with the odd leap back up if something happens. Can still feel the ache but no stiffness so supplement with paracetamol. This is a longer journey than I was learning to believe
EileenH AllyCD
Edited
I do wish doctors would think: it is the HISTORY of pred that applies at below 5mg and how your adrenal function is returning. Reducing faster doesn't alter that - but it does put you at a very high risk of a flare of the PMR which carries its own risks.
AllyCD EileenH
Posted
Eileen thank you! Before I found contact with you it all seemed rather hit and miss (mostly miss). Now trying to stabilise on present regime, 3.5/4. Wondering if ache is due to pmr or adrenals. Rather not go into gp for blood tests. Ache is an early morning happening, generally all over not just neck and shoulders as previously and almost disappears as day goes on. Well enough now to clean filthy kitchen cupboards - a mixed blessing!
EileenH AllyCD
Posted
Has it come on since leaving all 4? Sounds more like PMR on the edge of the right dose?
AllyCD EileenH
Posted
Think you are right! Will stop faffing around and put dose back to 4.5 where I was quite happy until suggestion to speed up taper. Possibly not enough preds to carry me through night. Are adrenals likely to wake up slowly or do they wait until pred course finished?
sierrapamela AllyCD
Posted
It is a long slog, but I really think that our intuition is very important. The doctor recently wanted me to go up from 3mg to 15 mg of pred on this latest flare, but I kept it to 5mg twice a day. It did resolve most things and I think over time being on 10mg is wise. Even if it is for a while (maybe 3 months) and then slowly work with my body and see if it can come down. When I reduce to quickly and then get a flare, I think this may be worse. Then the hands do not work and it is hard to just get those daily dishes done. This latest flare has made it hard to even write sometimes.
EileenH AllyCD
Posted
No answer to that - depends on the person. But it can take up to a year after stopping pred altogether for it to be really reliable.
Michdonn AllyCD
Posted
AllyCD, we are all different, my adrenals came back on slowly, normally an active guy, I was dragging myself around for months. Slowly I started to feel like my old self. I taper slowly using DSNS and have been for over 3 years, since having a disastrous flare and ending up in a wheelchair. Small flares are handled by quickly doubling or if necessary tripling my dosage; up and down quickly. Never reducing if there is any PMR pain. My 4 year PMR journey has had numerous bumps, but through it all, I have not missed a season instructing students how to ski. Currently taking 0.5 tapering to zero. Believe me there have been times when I wanted to give up, but with the help from the forum especially my PMR ANGEL, the end of the journey is in sight. Good luck on the rest of your PMR journey, stay active, positive and try to smile it helps. Here's smiling at you! 🙂
AllyCD EileenH
Edited
Patience never was one of my virtues - but am now learning. Agree with sierrapam that intuition is important hence deciding to return to where it felt right for me. Appreciate all the encouragement. Got somewhat spooked by Covid 19, who hasn't, but feel comforted by all information and help.
AllyCD Michdonn
Posted
lovely encouraging response - thank you
EileenH AllyCD
Edited
I have said so many times - if you learn nothing else with PMR it will be patience 😃
AllyCD EileenH
Posted
Thanks Eileen, love you, you're a star😁!
AllyCD Michdonn
Posted
Thanks Michdonn, am so impressed with the ski instruction. If I could slide down a hill on a tea tray I would impress myself. This has been something of a roller coaster ride and no one prepared me for it. That has been the hard bit. If I know what I am in for I can usually adjust - but this! As you so rightly say, this forum is amazing, all questions answered and then some. Whilst I appreciate gp's are busy an 18 month prediction that it burn itself out and simple tapering with no mention of flares or adrenal glands just hasn't cut the mustard but you guys are fantastic. Thank you and keep well with those planks on your feet 😁
sierrapamela AllyCD
Posted
All of you have given me more confidence to be patient. I felt so alone before and now I have all of you and this makes me so happy to know that I am not alone and that there are others who now see light at the end of the tunnel. Patience will be my mantra. Thank you to everyone
Michdonn AllyCD
Posted
AllyCD, I added that bit of information so you would understand that I was truly active. My Rheumey walked me right into a horrible flare and wheelchair. The forum got me through and back on my feet. There really is a wealth of information here.
Once again good luck on the rest of your PMR journey. 🙂
EileenH sierrapamela
Posted
One of the UK charities, the founders of which met here on the patient.info forum more than 12 years ago, produced a DVD for patients to explain to family and friends (and GPs) how PMR affects us overall - it was called "You are not alone". I attended the launch in Newcastle - and that was how I got involved in all this 😃
EileenH sierrapamela
Edited
Often a flare will respond to adding 5mg to the dose where the flare happened - especially when it coincided with a step down in dose. Doctors all too often send patients back to the beginning when it isn't required, And equally, often just a week at the plus 5mg dose is enough and you can drop back to just above the dose where the flare happened without long-winded tapering. But allow a bit of margin for error.
Michdonn EileenH
Posted
Sierrpam, for me, doubling my dosage for 3 or 4 days, still not stabilized, tripling for 3 or 4 days, normally does get me stable, no PMR pain, then reducing on the same schedule. Never reducing if you have any PMR pain. Unfortunately I have had numerous flares.
Good luck on rest of your PMR journey. I believe you have increase your dosage dramatically, getting the inflammation under control. 🙂