I wrote a post a few weeks ago about going to the Renal Bone Clinic. My appointment was today. I have been told that i have Osteopenia at the spine and hip due to the steroids I have been taking since 1998. I had been getting a lot of pain in my right hip, so I had an x ray today. Since my Transplant in 2010 my legs have been getting worse. I have been prescribed Alendronate to take once a week. I was shown the scan results and there is a curve at the bottom of my spine. The doctor said osteopenia is one step away from osteoporosis, which i wasn't happy about. Having Lupus does not help either as it is also one of the causes. Has anyone been diagnosed with osteopenia due to transplant or steroids. i would love to hear from you.
osteopenia diagnosis: I wrote a post a few weeks... - LUPUS UK
Hi Sandwiches sorry to hear all of this I'm sure it was a shock for you! I too have osteopenia after 20 years of steroids for MCTD, I'm 49 now so still pretty young for this condition. I also take risedronate once a week it's very similar to Alendronate and to be honest I find it very unpleasant but needs most!! I'm afraid what will happen if I don't take it. My Consultant also recommended that I do as much weight bearing exercise as possible to build up bone density, not easy when utterly fatigued with painful muscles and joints. However the swimming pool has been my saviour, I do different exercises in the water after warming up in the jacuzzi first, and it has really benefited me physically and mentally. The one small consolation you can take from it is that it has been diagnosed before it's fully developed and treatment can hopefully prevent it becoming worse. I hope this is of some help to you.
Thanks for your reply. I am nearly 49 and this is something I could do without as I have a lot of pain in my hip. I don't exercise due to the lupus making me tired. I used to do some classes but I had to go to sleep when I got home. It was so tiring. But I do a lot of walking as I have no car. But I am Glad it has been found early. Now something can be done. Thanks
Sorry to read of your osteopenia diagnosis. It's good they've found it early because with treatment it can be halted. Are you also taking calcium and Vitd daily?. That's important!. The cause is steroids so the lower the dose you can be on without problems the better!. It's all a tough juggling act. X
Thanks for your reply. I don't take calcium but take Vitamin D everyday. I am on 5mg steroids every day since my Transplant. When I was first diagnosed with Lupus in 1999, I was on 60mg per day. It made me very ill and I put on a lot of weight. Hopefully all be well.
Why do you take Vit D only and not calcium?. Usually they are taken together as Vit D is needed for calcium absorption. Is it to do with your transplant?. Good luck for your hip X-ray result. X
Hi misty. I was only prescribed Vit D after my Transplant in 2010. I was never prescribed calcium. I had calci chew when I had dialysis but not anymore. I am not a big milk drinker and very rarely have dairy products.
If you can you need to up your calcium intake either by diet or tablets. You won't halt the osteopenia otherwise!. X
Thanks for your advice , I will try and do that. I have porridge with milk most mornings anyway! X
Have you had an MRI scan? If not, ask for one as your symptoms appear to be Avascular Necrosis.
I would add that I had 2 hip bone replacements due to Avascular Necrosis which was also caused by steroids which I was given for only a short while for an overactive thyroid bone problem some 30 years previously.
I hope that I don't have to have a hip replacement as I live on my own. there is no way I could manage. I just about managed after my Transplant in 2010. Steroids are good in one way but bad in another way.
I know exactly what you are saying as I too live on my own now. When I had my hip replacements in 1996 and 1998 it was quite horrendous as I was living with my mother who was in her 90s and she, unfortunately, had to go into a Care Home. I was just beginning to think about her coming home after my first hip replacement when I needed my second hip replacement.
Hi, I have been diagnosed with osteopenia after only about 4 years on steroids (about 40mg initially and then after a few months down to 5mg. I continued with 5mg for several years - about 6 years on steroids altogether. I was taking aleandronic acid for about 5 years and then I was told to stop because it apparently does not make any difference anymore after a certain number of years. I am taking VitDCalcium every day. My consultant was very worried that it could get worse with the menopause but it did not - he was really relieved, so now I take just calcium and VitC and so far I don't notice any problems. I have an additional risk factor because I am very slim but I am trying to be active as much as I can. It does affect my confidence mainly because I am quite cautious when doing some sports like skiing and cycling, as I am afraid of falling and breaking something...I am 57 now.
Hello Petrof . Thanks for your reply. I was on Alendronate tablets for the first time in 1998, but i was only on it for a few weeks because the doctor said that it wasn't working. I take vitamin D everyday ever since my Transplant in 2010. I don't know if it makes any difference to me. I feel no change. I am nearly 49 and I am going through my menopause. So I think that makes it worse for me. I just need to see what else the hospital can do for me.
I was diagnosed with osteopenia many years ago (also got SLE) hence taking steroids and now ostepenia.I have been taking Alendronic Acid (once a week) for many years to, and have found that this has halted the damage to my bones.I also take Adal 2 which is a calcium/vitamin d tablet from the doctor. I am sorry that are getting pain in your legs, but please do persevere with your tablets as the damage to my bones shown in the scan was going downwards, but levelled out after taking the Alendronic Acid. Also have you tried the hydrotherapy pool at the hospital? as this really helped me strengthen my muscles.(on the NHS) and should help with your pain.I now use the pool at my local leisure centre where I can practice my exercises that the physio taught me, even if I have to usually go straight to bed afterwards I have found in the long term I am feeling stronger and made a few friends at the same time.
Early diagnosis is the key and hopefully as time progresses there is a light at the end of the tunnel for you and things will begin to improve.
I love sayings and here are two I keep on my fridge that I read everyday.
What defines a person is "not who we are but how we rise after falling" and
" I flatly refuse to let life get me down"
Stay positive and I really hope you feel better very soon!
Hi 014-39, Thanks for your reply. I hope the medication works for me as i get terrible pains in my leg, especially at rest. My walking is very slow now not as good as it used to be. My hospital does not have a hydrotherapy pool so I won't be able to do exercise for my legs. But I try not to let it get me down, if I thought of all of the illnesses that I had I wouldn't get out of bed. I will stay strong. Thanks again. I am glad i got an early diagnosis. It helps a lot. X
Did you check out your local leisure centre so you could exercise there in the pool, they often have a physio dept to but you would need a docs referral for this .
Exercising in water is my lifesaver you simply have to find a way ? otherwise you will will stiffen up and create more pain? Good luck! keep trying Stay positive keep smiling I know it's hard I have terrible pain today and could scream and shout. Pace yourself take short rests throughout the day , watch a funny TV programme , sit in the garden ,invite a friend round.Distraction is the best remedy for pain I'm lying on an ice pack now as my back is killing me and will listen to a relaxation app in in a minute........
Truly I implore yu have courage! keep smiling ! it will get better just think of it as a slight hiccup along the way it will go.... Take care
I have lupus with controlled renal disease. Yes I have hypocalcemia and my bone scans have had a steady drop over ten years. I have just been diagnosed with osteoporosis. I have not taken steroids for 8 years. I think it is just a part of lupus.