Hi guys not been on.much due to the dreaded flu lurgy but its easing off after 2 weeks lol.
Just an update on the dexa scan I had in January. The result is osteoporosis...I am not happy at all about this result.
I walk everywhere, I carry when I can, I work in my allotment including digging with fork and spade. My work for the past 3 years has been weight bearing..if you consider lifting a person over a 4 foot barrier, pulling crowd surfers down and escorting them out. Wrestling on the floor with some, running as on response in most jobs and protecting artists physically if necessary..
I have no other cause but the steroids..well as of tomorrow, I am dropping budesonide from 6 mg to 3mg, I will take this for a week, then I will take 3mg every other day for one week, then I will take once per week for a week, possibly mid week and drop them all together.
I have no choice unfortunately. My consultant will have to give me another form of immune suppressant, because I cannot take steroids long term any more.
My diet consists of organic chicken, fish and beef. I have lots of green veg and coloured veg and fruit every day. I drink 1.5 to 2 litre of water plus tea during the day and I take calci d from gp.. I also have hrt, but that irritates my gut, so need another form like patches.
I am just so fed up...osteoporosis on top of hyper mobility syndrome, on top of AIH PBC and hashimoto's...I am well blessed...
Any suggestions with regards to supplements please as I will not be taking any biphosphates as they are not really good for the system.
Thanks everyone xx
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Alley27
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You don't mention any really calcium rich foods in your diet there - do you drink milk? Porridge is a very calcium rich food too (since my hubby found out he had osteopenia due to cirrhosis and steroids he's had porridge every day for breakfast).
Have you been on Adcal D3 or similar whilst taking your steroids? Steroids are known from their calcium stripping so normally you take a supplement like that to support the bones.
Hi ayreshire, I do drink organic semi skimmed milk and have this in my morning porridge with fruit, nuts and seeds. I am taking calci d, I used to take adcal but they changed me to calci d cheaper generic. I may ask them to switch me back to adcal.
After a Dexa scan a year ago I was diagnosed with osteoporosis and osteoarthritis .since then I have been taking Calceos tablets twice a day. I also take one Alendronic acid tablet once a week that is hopefully to help strengthen my bones. I was told to include low fat yogurt and milk drinks and cheese (in moderation) into my daily diet.
I too have had a job that includes activity and weightbearing for most of my adult life.
I think that my illness that covered 5-6 years and chemotherapy for 3 have had their affect on my bones .
I think that any time now I should be getting an appointment for another Dexa scan and I will know from the results if there has been any improvement.
I hope at that at the very least that it has halted deterioration.
Hi Alf, I have osteoarthritis in some of my joints as well. I had a dexa scan in 2015 which the result was osteopenia...I have taken the adcal, and now calci d for the duration of my illness, plus I am on HRT. The HRT is in tablet form currently and irritates my stomach, I will ask to be changed to patches.
For 7.5 years from diagnosis of AIH and PBC overlap, they had me on mercaptopurin, which is a chemo medication. They took me off this in June last year and tried me with mycophenolate. This did not agree with me. I am now just on budesonide and urso.
I have a telephone consultation with my gp on Monday about these results and the possibility of treatment however, I don't want to take any more pills so they have to sort something out. They also need to find an immune suppressant or combination of two, to control the AIH.
I am sure they will help sort me out...as for weight bearing I couldn't possibly do much more, I don't have the energy most days nor the strength...
I will get on with it as usual but at 55 this is not great...steroids have a lot to answer for.
Hi Alley. I hope that you get sorted out tablet wise. It can be a worry that tablets for one thing can cause problems for another.
After transplant I was very weak and muscle wasted because I had been ill for so long
. I fell and caused 2 breaks in my spine. I was healing nicely and I fell again and opened up the 2 initial breaks and caused a much bigger 3rd one.
This is when I was given a Dexa scan. My diagnosis was Osteopenia but through Xrays since I was diagnosed with the Osteoporosis and Osteoarthritis.
I have a consultation on Tues to see if anything can be done for my spine as I'm now in constant pain.
Whatever you do stay as strong as you possibly can and don't go taking any risks that could involve in you falling over and don't forget to eat calcium rich foods.
Good luck Alf. You've always got great advice. I'm being worked up to perhaps having to go back on "the list" 🥺. You and lovely Anne ok...apart from the obvious? Steph 🤗
They will keeping a good eye on you on workup and I expect that your appointments will be monthly, which I found reassuring when I was in that position.
We are doing ok thanks Steph (as you say apart from the obvious) other than we have had two pretty miserable cold viruses since Christmas after managing to avoid them for at least 5 years (Anne still suffering )
Will let you know how I get on tomorrow, that is, so long as I manage to get to the appointments.
It's been snowing a storm here for the last hour. It's not forecast at all. Our forecast says blustery winds and light rain today and same for the next couple of days. It's totally white over and still coming down heavily.
I know that they've got snow up north but they said that it wasn't going to reach down as far as here.
Fingers crossed that it's all cleared off by tomorrow
Meanwhile, I'll throw another chair leg on the fire (you are probably to young to remember Pam Ayres rhymes, LOL ).
Wishing you all the very best for workup. Anne's is sending you the thumbs up!
My fingers are crossed for you Alf for your forthcoming appointments! Keep me updated
❤
Hi Alley
Firstly I do hope your feeling a little better after your bout of flu as I do know it can knock you for six and can take a few months to fully recover.
Unfortunately I cannot comment on your request for supplements but would recommend possibly speaking with your GP again or maybe even a dietician with your health conditions.
I'm sorry I cannot give any more better advise and wish you well!'
Thanks hun, I have a phone consultation with my gp in the morning hopefully, I will be able to have an actual appointment. I need to look at my options. I have been increasing calcium but there are questions regarding the fact that if our liver is not working properly, and cannot utilize calcium, is it worth it. The same applies to calcium medication for the same. Not forgetting that I am nauseous a lot of the time.
In some cases wouldn't magnesium, boron, collagen and vitamin d be a m6 h better option.
I will keep you updated hun...take care and be well x
I am so sorry Alley. I will be watching this as I had a Dexa scan yesterday and had been dismissing it as just a formality and part of the endless tests that are liver disease. I will wake up a bit more now. Thank you. Wendy
Hi, please take the calci d or adcal which the doctor gives you. I have taken mine from the beginning. I had a dexa in 2015 which stated osteopenia, that is about 4.5 years ago so not really a long period of time to this point.
I will take treatment for this but I don't want any more pills. I have also lowered my budesonide from 6 mg to 3 mg...these have been the main cause of this for me. Prednisolone for 4 years in the beginning, then reduced and off completely, until July last year. Had to go back on them. Then they swapped me to budesonide in October.
I told the consultant then that I did not want to take any steroids because of the osteopenia and the other side effects, but he said that steroids were the only thing that can get rid of the inflammation. Considering I had been unwell for most of last year with a couple of flares, he insists that I take them, with a view to come off them in 3 months. It's now 9 months.
They even swapped my mercaptopurin over to mycophenolate, which did not suit me at all. Currently on budesonide and urso. I expect that the consultant will have to find something else, or a combination of something else to get me off steroids.
Just keep well hun, take the calcium the doc gives you...and look after your own interests or they will control everything.
Osteoporosis is a well-known side effect of PBC. It has little to do with what you eat or don’t eat or what weight-bearing exercise you do (although these things are always good). The liver is not processing the fat-soluable vitamins as it should. Don’t give yourself a hard time over it and don’t worry about it. You will get some treatment. I’m on Prolia, a six-monthly injection and I do my best to ignore it the rest of the time. Try to enjoy life the best you can and forget about this (as long as you get some treatment).
I was also diagnosed with ostopenenia after a scan but apparently they did say it's very common as your bones start to naturally get thinner as you age.. I'm 56 but was told just take vitamin D and eat plenty of calcium based foods and no big deal!
I think if you scanned a large population of people most over the age of 50yrs would have ostopenenia ..wear and tear as I put it!
Hi guys and thank you so much for your replies. I have a telephone consultation on Monday with my gp to discuss options about treatment. I dont want to take any more tablets on top of what I already take so we will have to look around that.
I am just going to get the right treatment and get on with things best I can. I did not know that osteoporosis could be linked to liver disease...
I don't take much by way of supplements, except the calci d, but been researching. I understand that for excellent bone health we need calcium, vitamin d3, vitamin k2, magnesium and boron as well as vitamin c and collagen , so I am looking for a supplement that combine all of these, plus increase calcium rich food like yogurt. I eat plenty of calcium rich greens and drink milk as well as almond milk or fortified soya.
I certainly wont be bungee jumping any time soon. I will continue as planned but be careful of falling or banging myself on anything.
I should have guessed really because I caught my toe on my bed frame and broke it about 12 weeks ago. Wouldn't mind but I only bent my toe a little bit while changing the duvet cover, nothing to hurt a normal toe lol.
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