I never seen a post regarding this. I have had PMR for five years. I have reduced down to 1mg/day but I have never been without some pain in shoulders, wrists, hips and buttocks.
Have gained an additional 50lbs from steriods - Previously I still needed to lose 50 lbs. I am considering the gastric sleeve to assist with the weight loss as I am 5'2, 64 years old. High BMI (Body Mass Index) to classify me as Morbidly obese.
I was scheduled for surgery in four days, cleared with blood work and EKG. I cancelled and am so fearful of PMR returning with full force. I cannot get a direct answer from rhumy or primary doctors.
Can anyone had this surgery with a diagnosis of PMR? Could really use some direction.
Sharon
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sweiss72
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Oh Sharon, I do sympathise. I can also see why you cancelled the op. You can’t get a straight answer because nobody really knows how your body will react and whether you are going to be in a worse state afterwards. As you say you have symptoms that may indicate that PMR is subdued but alive. People do have major operations without a massive flare of PMR - often having the advice of the anaesthetist on steroid support.
The best case scenario would be a successful relatively straightforward op. The weight dropping off fairly rapidly aided by a sensible diet and helped by a hugely reduced appetite. Then feeling better all round with the stress being removed from your whole body and worried mind. In your shoes I would be searching the Internet, maybe even HealthUnlocked for real people who have gone through this procedure. Then you will get the real pros and cons. I might consider counselling too. Gaining a lot of weight is complex psychologically, weight loss fails because it was serving a purpose. I read the odd article that begins to explain multiple reasons for some of us being prone to obesity, some of them definitely pathological. Above all love yourself. You do have willpower, you’ve got off the dreaded Pred “ well done. Keep in touch, 🌸
As a counsellor and an obese person myself,I know that the psychological aspect of weight issues is most important.
I had a consultation with a bariatric surgeon last year, having already lost over 24 kgs. myself. He would only do a gastric balloon he said, because I was on steroids, so he wouldn’t operate. If the balloon had worked, it would have been very effective and not permanent. Unfortunately, I was one of the 5% for whom it can’t be accepted by the stomach. I was doing this so that I could have a hip replacement. I really couldn’t lose any more weight this whole year, so I have found a surgeon who did my hip yesterday! I still need to lose weight but it may be easier once I am more mobile and in less pain.
Weight issues are really complex and the more we can develop our self awareness about our very individual story, the more control we can take. Unfortunately, the steroids muddy the waters too.
Get as much information as you can about all the possibilities. Did you know that there are counsellors specially trained in eating disorders who may be able to help too?
Hope you are feeling optimistic after your hip replacement. I am OP plus 6weeks and starting to walk a few paces without crutches. Today I delivered tea in bed to my husband ........wonderful!
Follow docs / physios advice closely. All the best. Valerie
That sounds great! I am just beginning to realise that if I go home on 2 crutches, which is likely, I can’t carry anything like a drink or food on my own! How did you manage?
I have been waited on for all my needs by my husband. The days he left me my daughter took over. This is delivering all drinks, snacks of fruit etc to my chair. Found I needed a cushion to raise seat height a little to aid getting up. Main meals I sat at a table as my husband " learnt " how to cook ( still doing this tho I have chopped some veg sitting at a table). The first times he went to golf, I had water beside my chair, if I wanted a hot drink I made it and drank it beside the kettle. Hope you have a raised toilet seat, if not these can be borrowed from Red Cross. I wore a cloth shoulder bag to carry light pieces around, but mostly asked someone to carry for me.
Today we have socialised with friends in our car club at a group BBQ...our first outing other than medical appointments in 6 months.
Keep positive, I'm sure the pain from your hip is gone...... Just your recovery now. Smile......a lot!
Thanks for the hints- hubby not going to be available for more than a couple of days- will have to think creatively! Pain still there but just now improving🙂
You know, I read your post literally - pictured you hobbling home from the hospital on crutches! I did wonder what was wrong with that picture.... When I was on crutches with a broken leg I got very good at moving my glass of water or my cup of tea from surface to surface, from kitchen through hallway to living room. Fortunately we have a small house! My husband was no use whatsoever. Just swanned off to work without asking if I needed anything so I got quite self sufficient very quickly.
I have no recollection about meals during that time, other than my requisite cups of tea. In retrospect I think this is when my unexplained weight loss began - so there was a reason after all!
Oh! A couple of days is a very short time for you to settle back at home. Everything takes so long, and you need help with the hospital stockings. Are there friends and neighbours to help?
On the positive front, the enforced rest has meant that since I became immobile in February I have reduced my Pred intake from 9mg per day to 4 mg per day without noticeable change in symptoms. I am on low carb diet and now 30lb overweight, prior to Feb had lost 20lbs, but only managed to hold steady with no exercise. Hoping that will change as I get moving again if allowed after a Physio assessment this week.
When I was on crutches for 3 months I made sure there were places a cup or plate could be transferred to or a small trolley that I could push as far as possible (crutches helped that action ) and then follow it. I had a very large kitchen with a sofa and dining table in the conservatory half and a downstairs loo so it was fairly easy.
I know of a couple of people who had had bariatric surgery before developing PMR and were worried about regaining the weight but I don't think I know anyone who has had it done while on pred.
Many of us have lost a lot of weight by cutting carbs in our diet drastically - it is particularly appropriate with using pred as steroids change the way our bodies process carbs. I lost 35lbs by doing that and I know of others with similar stories. Others avoided weight gain by using a low carb approach.
I do appreciate the difficult of losing weight at all, I have fought the battle all my adult life, on pred it is even more complex.
which is not encouraging with regard to surgery while on long term steroids - and let's face it, discontinuation is not really a viable option for PMR patients.
However, 1mg is a very low dose. If you are able to remain at 1mg for a few months without relapse - and it has to be said that if you have symptoms that is a possibility if the inflammation builds up - then that must improve the outlook for surgery. It is also possible the symptoms you have are not due to PMR but something like myofascial pain syndrome, piriformis syndrome or other muscle problems where targeted treatment may resolve the issues.
Thank you to all that replied to my bariatric and pmr post. Over a year ago, the rhumy after 2 years of 10-25mg pred. dosage suggested I may not have pmr. No suggestions were offered from him or the outside private doctor. I know the 1mg - 2 mg works. I have pain just laying down from my hips and especially in the shoulders- I know that it is also triggered by stress. Occasionally, I have the fatigue that makes me have to sleep 2 hours in the afternoon - I can set a clock to it. I know all of us have similar pain, mobility & fatigue issues - it is exhausting.
I've got a lot to consider. The weight has to come off but as you know, no one wants to trigger more autoimmune issues.
Thank you. I will keep you posted. I plan on attending some support bariatric groups too.
I would have a good long look at Jason Fung' writings (The Obesity Code, The Diabetes Code and his fasting book) before you go ahead with bariatric surgery. They are brilliant,... and will get you sorted out if you like what you read. Good luck.
I too lost weight over 35 pounds from a low carb & low sodium diet. Some people who didn't know me before don't see the round face as a moon face. People who know me see the difference.
When I was in my 20s & gained 20 pounds I joined a type of Over Eaters Anonymous (OA) called Westminster. They believed that we have a sugar addiction. They had a meal plan that I would definitely lose weight on. And now that I'm off the carbs, I believe I did/do have a sugar addiction. And like smoking, which years ago I did, staying abstinent stops the cravings. And to stop both I used the One Day at a Time Alcoholics Anonymous books. And we didn't know that smoking was an addiction back then.
I stay off sodium as well. This limits the swelling that Prednisone gives. When we went to Disney World in January, there was a day when I didn't bring my own food. I could feel the swelling around my eyes the next day from the food at their "restaurants".
Remember that 2 pounds a week weight loss is safest.
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) and then follow it. I had a very large kitchen with a sofa and dining table in the conservatory half and a downstairs loo so it was fairly easy.
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