I am in great discomfort because I have developed severe osteoporosis in the spine. I have compression fractures in three areas of the thoracic spine (T10, T11 and T12) and one area of the lumbar spine ( L1). I was diagnosed with GCA in September 2022 and have been on high doses of steroids until very recently. My rheumatologist has recommended that I taper by 2.5 mg every two weeks and I am currently on 25 mg as of today. Unfortunately I decided not to tale Alendronic acid because I was worried about the side effects of the drug, so I only started taking it in June this year.
This more or less coincided with a rapid collapse of the spine and a very severe curvature or kyphoscoliosis which I have been told is irreversible. Unfortunately I have gained extra weight around my middle probably as a result of the steroids. I am trying to be very careful and avoid most carbs but my mobility is limited and I can only walk short distances with the help of two walking sticks. Now I almost form a tight ball of curved upper back and enlarged pot belly. Not only is this hideous-looking but it is also very uncomfortable and seems to get worse as the day progresses. Should I try to reduce what I eat more drastically or is it unlikely that I will lose the weight until I can reduce the prednisolone still further?
I would be very grateful for any advice or to hear if anyone has had a similar experience and how they coped if so.
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Raga72
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I'm sorry to hear that. Did you have a dexascan at the start to get a baseline? Or was AA thrown at you "just in case"? Sarah Mackie is concerned about the rejection of AA which is so common - but some patients do need something. AA will only maintain the level you are at - since you already have fractures, why have they not considered denosumab/Prolia which does increase bone density very efficiently and then you can either continue it or switch to a bisphosphonate to maintain the improvement.
You may have to cut the carbs drastically - SnazzyD on GCA doses and I on PMR doses needed to be down to what usually called keto amounts of carbs, under 20g per day - in order to lose weight at 25mg but it is doable, and the exercise bit is grossly overrated it has been decided. In fact, some people studied GAINED weight because the body automatically adjusts the appetite to compensate for the calories used in exercise!
Many people misjudge the amount of carbs they are eating, especially if they eat a "healthy diet" with fruit and wholemeal bread, I find this site good for assessing where it may be going wrong
Thanks for your reply PMR Pro. Always good to hear from you. I did have a dexa scan and it did show that I had some degree of osteoporosis but I did so much walking almost daily and ate what I thought was a healthy diet with lots of yogurt etc so I was too complacent. I did not really understand the seriousness of the risk in not taking AA. I am going to have a denosumab injection soon but probably not for two or three weeks because visiting family in the midlands for a couple of weeks.
I will be drastic with carbs. Maybe I am still eating more than I realise.
Keep an honest diary and work it out - it can be very revealing.
That was the tenor of Sarah's comments - "we obviously don't explain it well enough". Like everything else, we pointed out ... And we have come across doctors trying to bulldoze patients who have direct contraindications to it into taking it.
The other thing I pointed out was that AA is rather daunting just looking at the instructions to take it, weekly you have a really messed up early morning. Offering an annual infusion would really improve acceptance and compliance no end.
Yes I am hoping the injections will be effective in preventing further damage. It seems that most fruit are fairly or very high carb. Do you regard any as safe to eat? I can only think of kiwi fruit as low carb. Perhaps most fruit is not acceptable.
Berries are considered the best - but you don't NEED fruit, I eat large amounts of above ground vegetables and salad - all the same nutrients with less of the sugar!
Just a few thoughts about diet...think of yourself as a diabetic and check online the glycemic index of what you eat.
Remember all fruit juices, smoothies are definite no nos for any fruit. One thing I found handy is the fact that potatoes can be eaten provided they have been left to go cold after they are cooked. The starch changes and doesn't get digested like regular potatoes.
But no flour (pasta bread), no rice...white or brown. Beans and lentils fine. And as PMR pro says salad and above ground vegetables (many root vegetables tend to be starchy..but check glycemic index)
You are not only trying to control weight but also prevent pred-induced diabetes.
By the way..I have prolia injections...with no side effects.
Just to say that I take Ibandronic acid monthly. You drink the pill with water and sit up for an hour afterwards. I much preferred this to weekly Alendronic acid and it serves the same purpose. I also take calcium and vit D3 +K2 daily. I am so sorry you are having such a rough time. Good luck for the future.
Totally similar experience ongoing. I have two compression fractures, L1, L2 and 2 bulging discs. Use a rollator to walk because the muscles are spasmed trying to stabilze the spine. Movement is extremely limited. Waiting for a zolendronate infusion. Rhemy is arranging so not much hope there. Did NOT take AA like a good girl as have acid reflux. Also taking 2 ppi per day, which I am told also weakens the bones....Rabeprazole. This I've been on for way too many years. Long before the PMR. Been on the bed for 9th week. Mostly. If I overdo just one thing, it's back to square 1. Currently waiting for a date on vertebral plasties.PMRpro: Went to ophthalmology clinic yesterday as my eyes have been so irritated and blurry. Turns out the cataracts are the issue so now waiting for eye surgeon to call. Ugh.
Your story is a big wake-up call to all us post menopausal wrinklies on steroids; osteoporosis risk is omnipresent. I do hope you become more comfortable over time and find out the best way to stabilise things.
What a bummer, yes, we start with one “ thing” :GCA and we end up with the side effects of trying to fix the initial problem. Yes, I too sympathise heaps.
I want to ask you have you considered organising yourself a walking frame, so much safer than two sticks.the chance that you can walk is greater.
Then you can weightbear, and with a bit of luck pick up some vit. D , and fill your lungs with some fresh air. And maybe get out of your house? All assisting your mobility , compressing your bones .
Also get yourself a set of exercises organised for all your joints.
Nothing fancy, just movements in all directions for all your joints. Grap some power back!
Thanks for your reply Kaaswinkel. Do you think the four-wheeled walking frames with a seat are a good idea? I think it would be useful to be able to rest when needed. The tri-walkers look neater but don’t offer this benefit.
I definitely think you need the walker with the flap down seat. My mother had very severe osteoporosis (retired consultant) and had got to the point she could hardly walk due to hip erosion. She always used that kind of walker with a bag attached at the front where she could put her phone etc. I think it will help you far more than your two sticks. You're having a very rough time. Virtual hug.....
Ask them if you can have a trial (various models but always 4 wheels) and make sure you know how to get them folded and in and out of the car. Also make sure it is the correct height for you.
Don t go for looks but for great use. solid but not too heavy . You must be able to get it in and out of the car. Enjoy the ride!!
I suffered a compression fracture in my spine and know how miserable and painful that can be. The Royal Osteoporosis Society are a wonderful source for advice and support. theros.org.uk Lots of info and a specialist nurse helpline.
Hi - i am so so sorry to hear your story and everything you have written makes me well up and recall the desperate situation caused by the steroids. I have GCA, PMR and fibromyalgia- osteoporosis, diabetes, arthritis, copd, angina and a good deal more. This is why i feel so badly for you. I fell on a stone floor soon after stomach surgery and broke L1, 2 and 3. That was in March. I am told the bones healed, gave back, and have regretted ever since, the back brace. I am in terrible back pain in my back, in addition to the rest, constantly. No pain killer really helps, slow or immediate release.
I hiked up to 500 steroid, 250 steroid and am now at 4. I refuse to take more unless it is for 3 days or something. They say side effects reduce significantly below 5 pred. I found this to be the case and worked constantly to get here. I had six months of chemo to zap the GCA into submission- and hair loss contributed to the awful appearance, swollen face and weight gain. Steroids make you hungry and only carbs satisfied me. Any reduction in carbs will help you. Drink lots of water - it helps. I think the weight gain in my body was a result of comfort eating. My face was different.
I am still a mess in my body but have hit size 14. I also have alendronic acid and now teeth problems. High risk to some jaw awful bone disease. Too much to compute.
Work on the tapering and it really will help you get a better body image and feel more comfortable too. I have mobility issues, and feel for you so much. You can only do what you can do - reduce carbs, drink a lot of water, ask for some bed or sitting exercises to strengthen some muscles.
Remember you are beautiful. Reduce the preds as suggested - there is an end in sight to get below 5. Have cabbage soup too. And keep your smile - it matters more than anything. People love you no matter what hazards get in your way. And it will get better. I am 4 years in - on immune suppressants etc etc. But i think i am more in control of my body.
My arms look like a war zone - thin skin and weird blotches that spread then reduce - a steroid gift. I have been told that 4 is it and i cant reduce below that.
I have prattled on. I wish i could visit you - you can only do what you can do. I feel for you with similar issues to me. Things will improve - seek help on the belly fat - if it gets you down - tell your rheumy.
I shall keep you in my thoughts - speak to a physio also.
my every good wish for your road to recovery- we are all in this together.
cyclophosphamide - monthly infusions for 6 months and now on immune suppressants and steroids for good. Did leave me with a bladder issue (urgent incontinence or something) but a tablet each morning is fantastic and has given me back my holding power. How are you doingx
Dear Raga, Just so that you don't feel too badly about the limited exercise: I have been able to do very little exercise the last few years, mainly because of sheer fatigue. I put on weight very quickly at high doses of pred, but then limited the carbs and didn't have to lower them too drastically in order to lose weight very slowly . I am now more than a stone lighter than I was before PMR.
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