I was diagnosed PMR last Fall. I was so bad I had to fall out of bed and roll just to get up. Up untill then, I was a dancer, outdoors person. Hiker, camper, kayak etcc... I was on prednisone. My weight ballooned. I moved on to Celebrex. My weight continued to go up. I chose to go off the meds. I want to lose weight. However all I want to do is lay on the couch all day because I am in to much pain to do anything. Walking is the only relief I have. Does anybody have any recommendations of Natural remedies I can take? I have been taking Jameson Body Guard but I still need Alieve to go with it. Now I am not only in pain, but fat and depressed too.
Hello busymom, I have never been one to simply take medication. I've always questioned the necessity of any drug prescribed and often in my life I've looked up what I was diagnosed with and what medication I have prescribed for it. Often I threw the prescription away if I read that the diagnosis would clear up of its own accord or that the medication was dubious.
again, when I was diagnosed with pmr way back in December 2013 I immediately got online and looked up my diagnosis and the medication prescribed. I was horrified so I looked up as many alternative remedies to this condition possible and it wasn't long before I concluded that I had to bite the bullet and take prednisolone as prescribed for as long as it was prescribed.
it is fact that there is no other medication that reduces inflammation like steroids do. If there was we'd all be taking the alternative.
i have no idea what these other medications etc are that you have mentioned so I can not comment on them. But I will say this, untreated inflamation is very dangerous. It damages cells whether they are muscle or vein or arteriel and many of these cells once damaged can never be revived or replaced hence the excruciating pain we are in when not taking steroids.
sorry if I sound harsh or closed to the question of alternative medicine but honestly I am not. But one thing I am us a realist and presently steroids are the only medication that works.
of course you are depressed, you are mourning the person you were and it is very hard looking in the mirror and seeing a new fat you that finds dancing and keeping fit difficult. I've been there, cried all the tears over the old me and still wear the t shirt. But 2 years down the line I am now on 7mgs of preds daily and I am on a low carb diet and although the weight isn't falling off me I am losing weight and you know what when I look in the mirror I see sparks of my old self coming back so I look forward to my future although I know it may be another 2 years or even longer before the old me really will be here to stay.
please reconsider preds. Regards, tina
Prednisone will sort out the inflammation and allow you to live a reasonably normal life. Why did you stop? Wasn't it sorting out the pain? I know homeopaths with PMR who take steroids for the pain. If there was a good alternative I am sure we would all be taking it. There are a lot of snake oil salesmen out there offering cures, but pred is the wonder drug and works.
Do give Pred another chance. It really IS the only thing that helps PMR. None of us like it, but we like the pain even less! Why put yourself through it??
OK, you have put on weight, that's not pleasant, but it's better than being in perpetual pain, surely?
There is always someone on this site to help/advise you. Keep your pecker up. We feel with you.
All the best and good wishes fr Constance
I agree with replies given. I also, was extremely active! I have weight gain, hair loss, fat face, UGH, depression, fatigue, BUT, like you, all I could do was roll in and out of bed, couldn't dress myself, on and on....I am still struggling with controlling pain. It still limits my walking. I cannot get back to my schedule of walking 4-5 miles a day, and dancing 2 days. No walking since May, when I got initial dx. I have went from 20mg daily to 12.5, and will be taking the dead slow reduction plan to my Rheumy on Tues next week. I have found a lot of comfort from the forums. I am in USA, and just got on the Yahoo group there. Please, bite the bullet, so to say, and take the pred!
No - there are no natural rememdies that work in PMR.
For the first 5 years I had PMR I was not on pred - not out of choice, no-one managed to diagnose it: I was too young, I had normal blood markers. Like you I never had a day without pain and I put on quite a bit of weight because I could no longer exercise as I had before.
When I eventually was given pred for 6 weeks, a taper of 2 weeks each of 15/10/5mg, it was like a miracle within 6 hours. Thirty hours after taking the last 5mg tablet, 6 hours after not having one to take, I was back in bed in tears with the pain, it was worse than before. My GP believed me and the PMR diagnosis, the rheumy didn't. No prizes for guessing who I stuck with!
I was on prednisolone for a few years (in the UK) and never managed to get under 10mg, not knowing what I know now about slow reductions in small steps. I didn't put on much more weight, it just redistributed to the usual places. Then I moved to Italy where I was switched to Medrol - that was hell on earth: massive weight gain, hair and skin a mess, a lovely black beard (thank goodness for my Braun epilator). Then my GP suggested I switch again, to Lodotra, marketed as Rayos in the US, which is a form of prednisone. You take it at 10pm, it releases in the gut about 2am and the pred is there ready and waiting for the inflammatory substances being shed in the body at about 4.30am. Since I have been on that I am able to move and do some exercise - and, with the help of a very low carb diet, have lost about 36lbs of that weight. There's still bit to go but I have my figure back and am mobile. I feel well. I managed a 3 week trip to China which included a 2 week tour. I kept up with everyone else just about.
I'm not saying that Rayos is fantastic, better than anything else, what i'm saying is that different forms of corticosteroid work differently for different people so it might be worth discussing that approach with your rheumy. Maybe they can get Rayos approved for you - it is a lot more expensive than ordinary prednsone, prednisolone or Medrol - or you can try another corticosteroid which may cause you less weight gain.
Many people on the forums have found that by being VERY disciplined about carbs they have either managed to lose weight as I have or have managed to avoid weight gain. Sugar and refined carbs are also inflammatory so leaving them out is a good approach for reducing the inflammation in your body. You can add in other antiinflammatory foods such as oily fish, turmeric, garlic.
But the bottom line is that pred is the only way of managing PMR successfully. If there were another way we'd all be on it! If you don't take it you are immobile - a risk factor for most of the things that pred is accused of: weight gain, developing osteoporosis, raised cholesterol, developing diabetes. The constant pain makes you a prospective candidate for depression. And unmanaged inflammation increases the risk of cardiovascular disease in general and even some forms of cancer.
Pred is only part of the management though - you have to get to grips with the whole thing too. You haven't become a different person because of being fat - but you will become a different person if you give in and refuse to meet the challenge half way. You can't fight PMR, it wastes energy and ends in tears. You can accept the challenge though.
I have never ever come across anyone with PMR which I could describe as a couch potato. PMR seems to love all these busy multi-tasking multi sporting people.
I think the shock when the symptoms become full-blown is the stunner. All of a sudden you are not the person you thought you were and it's difficult to cope with what you seem to be in the present. Everything is flung at you, diagnosis (what's PMR? Steroids? aren't they nasty things? Weight gain which ever way you look at it, strange lumps and bumps in strange places? What? No, I can't have that, I've got 7 things to do before 8 and then a deadline to meet).
Unfortunately at this time there is no other effective way of treating the symptoms of PMR - Corticosteroids are the only means. They do not cure the condition but they relieve the pain of the inflammation caused in the muscles usually to the extent where you are able to have some quality of life (which a lot of other patients with other autoimmune conditions don't get).
Of course there are side effects, many are listed, but no one gets them all. Read the side effects on any drug you can get over the counter (e.g paracetamol (Tylenol?) and you would not want to take many of them!
You can help yourself by sorting out your diet - avoid carbs and processed food and try to incorporate as many anti-inflammatory foods that you can, but that is as far as it goes.
I put on lots of weight in the early days, but I was so relieved to be rid of the pain and able to move again, that kept me going for another 8 years in work and I was grateful for it.
The side effects mostly disappear as the dose of Pred reduces - it was when I got down to 10mg that I realised that things were changing in my favour at last! Everyone is an individual though, and other people will find other points to celebrate.
But the choice is yours. However, without Pred you will be having to cope with the inflammation, immobility and pain as best you can.
There is nothing I can add to the replies already given, except one item.
PMR left untreated, leads to a higher risk of GCA. That is not something you would want anyone to have to deal with and you have no option but prednisolone in that senario and at a much higher level.
Note what Eileen says about different forms of prednisone having different effects. Another form may not cause you to gain weight as easily. I had lost a lot of weight in my 14 or so undiagnosed months, and I have not gained any of the lost weight back in the past 5 treated months. I walk, I walk a lot. I also do gentle physio and yoga exercises, and am a beginning tai chi student. Gaining weight is not something you should give up prednisone to combat. Cut yourself some slack. Allow yourself to be ill and recognise what it is going to take to get well again. Take your pred. In a few months you will be tapering, you will be feeling better and able to do more, and the great healthy diet you will have been following will be helping you to shed the unwanted pounds at the same time as it helps to restore your energy. In the immortal words of Piet Hein : "Things Take Time." And you can always come here and vent. We understand!
You wrote "I had lost a lot of weight in my 14 or so undiagnosed months, and I have not gained any of the lost weight back in the past 5 treated months.".
This can and does happen with PMR and if you were still losing weight the medics would be very worried and doing something about it.
Partly through strength of will - I was so happy to be thin! Although in retrospect it has not turned out to be a good thing (bones getting thin too, apparently). The weight loss started with my broken leg when I got out of the habit of idle snacking, because it was too difficult to get to the food! I do NOT recommend this as a weight loss strategy! But I've always known I would be a thin old lady as with every major life crisis I would lose a lot of weight, and never regain all the way back to the previous level. I haven't lost any more. That critical slide into vanishing was halted by prednisone. But having to cut way back on simple carbs has certainly not helped me put back any weight.
Why do you have to cut back on simple carbs. I am interested not being critical.
That other pred "effect" of diabetes - having one major effect (osteoporosis) is enough, don't want to risk another. But I did just eat the most delicious gigantic peanut butter ball in dark chocolate.
I totally agree with the other postings. We are all taking our Pred because most of us have reduced our Pred too quickly and felt so bad. Yet felt so much better when we increased it.
I too have put on a huge amount of weight, mostly due to a newly sedentary life with very little energy. We all know what you are going through but it is very important for you and your family that you continue to do what ever it takes to get rid of the pain and come back to life! 😍
Thank you. You are right. I see my staff pictures at work and I cringe.. But I at the same time I can't tie shoes and go up and down the stairs . So I guess I need to decide my priorities and stop being vain. 😕
That's scary..... I didn't know this. Thanks for the insight.
I have learned so much from you Thanks.
re couch potato! Wouldn't you, just sometimes, love to be one? I get up some mornings, especially as it is now getting cold and miserable, and think "I'll stay on this couch and not move for four or five days"!! Lovely!
It's the simple carbs that are the cause of blood sugar spikes because they are absorbed very quickly - the same as drinking "smoothies" or fruit juices rather than eating whole fruit and veg where the sugar enters the blood stream much more slowly. The spike stimulates the production of a lot of insulin which makes the blood sugar fall very quickly and it tends to overshoot. Low blood sugar makes you crave more sweet stuff to replenish the sugar - and so the vicious circle goes on. Too much insulin free in the body makes cells resistant to its effect so eventually you develop Type 2 diabetes. And the excess sugar that triggered the insulin production was, in the meantime, stored as fat. Corticosteroids make that all worse - and you get those lovely fat stores around your middle ...
When I put on so much weight I looked around me and thought "There must be a LOT of people on steroids!". I'm not supporting being overweight and, even less, obese and feeling it is fine. But there is a good reason for us gaining weight - some healthcare staff will say it's still from eating more than we should in response to the appetite pred creates. I believe though that by not eating the carbs in the first place you can do a bit to improve that craving for food that makes us eat so much and gain weight.