just had a very mumbled phone call with doc receptionist, v bad line but from what i could make out my dexa scan result was -2.8
no more details than that. more info being emailed apparently
according to dr google ive got osteoporosis?
can i halt this any other way than taking medication
on 12.5 pred and 100 thyroxine
thanks
Have a look at this post -
healthunlocked.com/pmrgcauk...
And also at the ROS site for more info - theros.org.uk
And also HeronNS post -
healthunlocked.com/pmrgcauk...
thank you.
You should have multiple t-score values and they are important.
You do have osteoporosis - you could improve it some but I am doubtful whether a level like that could be transformed to osteopenia with diet and exercise.
However, do have a read of HeronNS's story:
healthunlocked.com/pmrgcauk...
thank you
I was very frightened when I got my DEXA scan results. There was a huge discrepancy between one score and another. My hip score was 2.7 and my spinal score was 0.3! I have never really found out why they were so different. One explanation that was given to me was that I may have osteoarthritis in my spine which makes the bone appear hard rather than porous! I was told by every health professional I have come across that I must take the bone medication. The rheumatologist said that I would be “mad not to”.I had gone from being a fit healthy 69 year old to feeling like a really sick old lady with PMR , with the possibility of developing all sorts of other illnesses because of Pred and having osteoporosis (and possibly osteoarthritis) within weeks! I felt my future was hopeless!
I then stopped and took stock. I knew I couldn’t take another drug because the ones I was already taking were not making me feel great, so I declined the bone medication. I asked for the doctor to use the FRAX tool to estimate my risk of fracture and it wasn’t as high as had been thought at first (25% in the hips and 8% in the spine in the next 10 years). Yes taking steroids may cause a further increase in risk, but reading people’s comment on here, not necessarily.
I made the decision to wait until I was in a better place drug wise, before making a decision about taking the bone pills. I took a step back and did a bit of research into how to increase my bone density without the drugs and I told myself not to panic. We are all faced with many health risks as we get older and we just have to take one day at a time, consider our options carefully and look after ourselves with good diet, exercise and rest.
With many best wishes.
you and I are the same ... with the scores and the decision not to take drugs. I do lots of exercise and balance exercises.. especially and hope to see an improvement. Heel drops (google them on you tube..although they are just as they sound) I think are KEY! (I've been taking adult tap !) I think a little pounding of our bones.. sends the message to build up. Onward!
I would want more info than that from a DR. I had to beg for a copy from my GP. But it was clearer for me when I received help from this forum. A mumbled call isn’t good enough. F2F would be more appropriate.
Well, dear, steroids cause Ostero, bone deterioration, diabetes, cataracts (that's just to name a few), as far as I know. There are injections of certain types of meds (for women specifically, I think) that help stop or slow it but you'd have to talk to your doctor. Just make sure you take a very good Calcium Supplement daily, try to exercise, eat calcium-rich foods when possible,
No, steroids MAY cause those side effects. None of them are inevitable and most can be mitigated or avoided when you know how. Some of the additional medications handed out are in cognisance of those things but I take none of them and have had NONE of the adverse effects after 12 years on pred. I am not alone - others on here can tell similar stories.
If you are meaning bisphosphonates and other bone protection drugs - they are none of them specifically for women, only HRT would come under that heading. Men are less likely to be given them because they are often assumed not to suffer from osteoporosis but that isn't correct.
Well, I've got you beat as I've been on steroids for over 15 years. Here's a question, if you can avoid side effects from STERIODS, WHY are you still taking them? I will tell you why, you can't stop as ONE of the side effects is your ADRENAL Gland no longer works. I am going to be on them for the rest of my life too. All I DO know as my own case and EVERYONE reacts differently to different drugs. There is NO such thing as NO SIDE EFFECTS from ANY DRUG. DRUGS of any kind are poison to your body. I was prescribed 80mgs of Prednisolone (age 38 healthy) and within less than 1 month I developed Cataracts, & Diabetes. Talk to any ANY physician, steroids are a miracle drug with HORRENDOUS unavoidable side effects (thus why modern physicians try to avoid giving these and now prescribed them for the least amount of time and least possible dose to wean you off them asap. You can't avoid side effects from medications. If you could, you would be given those alternative options most certainly by the physician or when you read your 5 page pharmaceutical receipt that tells you everything about the drug you are taking.
Not commenting on anything at this point, other than seemingly aggressive and shouty posts are neither necessary or acceptable on a forum such as this. I'm sure we, are all happy to hear your story and help or comment or discuss but in a pleasant and polite way please. Quick question were/are you on Prednisolone for PMR, GCA or another Autoimmune disease, which will help in replies, ? Whilst here I'll also wish you a "happy friendship day"
To give you a bit of background, I was studying to be a physician and developed what THEY called tendonitis. It kept coming back had to quit school. Finally found the right doctor and was diagnosed with Rheumatoid Arthritis (told worse case, highest numbers EVER seen by Dr). Given Pred which did nothing until bumped up to 80mgs. After a few very sleepless weeks on this dose, gained 60lbs, I was hallucinating, hearing things, seeing things, couldn't focus, had trouble breathing., BP 210/90 Went to ER for help. Dropped down to 40mgs. put on IV"S, so many poisons, nothing helped. TRIED every drug available for RA. Not sure what happened but FINALLY Actemra helps along with lifelong Methylpred (they call it a maintenance dose). I do not care what anyone says EVERY drug, injection, etc WILL cause side effects..it's a poison and something your body isn't supposed to get naturally. You may not notice the side-effect or think you don't have it but you do GET a side effect. You can ease them with supplements but they are there and after taking any drug for many years, you'll get them. Wishing you and your family health, peace, and tranquility during these very uncertain times.
No need to be rude - and this isn't a competition. I am still on pred because I still have PMR - it relapses/resurges every few years . There are several of us on the forum with a similar form of it. I've actually had PMR for over 16 years - it wasn't diagnosed because my markers were "within normal rang"e - though in fact raised for me.
I have no identifiable adverse effects - no cataracts, no loss of bone density, my cholesterol and BP were a bit raised before pred, my skin is fine, I bruise but that is more likely due to the anticoagulant therapy for atrial fibrillation - caused by the autoimmune part of PMR. I gained weight with PMR, it redistributed with pred but I lost it again.
My adrenal glands work - I'd be dead if they didn't. They produce a lot of things, not just cortisol. They are working properly in fact: because it is like your central heating boiler not producing heat when the thermostat knows it is warm enough - the adrenal glands know there is enouh corticosteroid around to do the job so doesn't make more. The body isn't fussy whether it is natural cortisol or synthetic pred, it just knows when it has enough. Maybe my adrenal glands won't start to produce cortisol again - that isn't the end of the world and acceptable for the many years of decent quality of life they have given me.
Most people I know who have had PMR or GCA for the more common times, about 4 to 6 years, have successfully got off pred by tapering slowly. I know some whose adrenal function hasn't returned but in 12 years on the forums and thousands of people that is under 20.
Do I gather you have RA and not PMR/GCA? I think it is fair to say that you don't really appreciate the difference between them. RA does at least have a choice of medications. We don't.
I apologize as I, 100% wasn't trying to give the tone of being "rude". Just direct and honest. Not sure what you mean by "under 20" is that the age? I've tried everything to get off steroids. EVERYTHING. Nearly died from "weaning" down too low. As I said...everyone is different, we are all individuals with different body chemistry. You asked a question about your issue and I honestly believe that steroid use comes into play. Prayers and hope for your future!
“Under 20” relates to number of people who’s adr3nal function hasn’t returned.
Well, I'm very glad for them! Do you know how long were they on them? I just know in my own case, I can not stop them. I've tried weaning so low, so slow and when I get to 2mgs, my hands swell and I feel as though I am going to die. I tried supplements for my Adrenal Gland etc. I'm stuck and I think most people do get that way after years of use, thus why Biologic Drugs have been invented...steroids are not a long-term effective nor safe drug due to side effects, sorry but that is just a fact.
Actually I have to disagree to a certain extent - yes steroids do have some rubbish side effects, but most can be managed.
From a personal point of view - taking steroids saved the sight in my left eye, right already lost due to misdiagnosis…had I not taken them when I did and the dose I did, I would be totally blind. No biological drug would have done that!
Many on here would also agree that steroids gave them their life back having been virtually bed-bound prior to diagnosis and treatment. As has already been said as you do not have GCA nor PMR so perhaps you don’t fully understand the illness.
I took a cumulative total of around 20,00mg of steroids over 4,5years….no long lasting negative affects and my adrenals are working fine.
Whilst I appreciate you have issues with steroids, please don’t undermine the confidence that many patients on this forum have in them…and as for suggesting alternatives please remember this is a multi national forum…what happens in the US doesn't necessarily occur worldwide - in medical matters as much as life!
I honestly never said steroids don't work! They are a miracle drug! Absolutely help with inflammation but are NOT recommended for the long term. Also, doctors ARE on top of how to prescribe them these days and I do think the medical professionals know more now than they did back when I started them over 15years ago. Steriods saved my life. I am so happy about your experience and the help they provided. They work miracles for my condition also, BUT when I get over 10mgs, the side effects are horrible for me. FOR ME! Everyone is different.
Dear booshysilky,
First of all, try and contact your Doctor again- explain about the Bad Line- and ask him/ her to repeat those Results!
Whilst you are Speaking, to your Doctor/ Consultant, ask 'What The Results Actually Mean' For YOU'.... Don't rely on Google, your friends or even us, ASK YOUR OWN DOCTOR. (I remember one of my 'Other Doctors'- a Registrar I believe- becoming Very Concerned about 'A Single Blood Result'. My own Consultant said, something like, "Oh you have 'Gone Up' again, haven't you? No doubt you will Go Back Down.", which I did.
I'm sending you my, indeed ALL 'our', Very Best wishes booshysilky Do make that Call, without delay.
AndrewT
yes ive contacted doc as a matter of urgency for the sake of my mental health but not heard yet. i guess it will be a matter of weeks before i get a call back.
thanks everyone.
I don't think that was rude - just direct.
Scared
Scared
Kind of scared
Feeling scared and low
feeling scared
