I just had my third DEXA Scan results and I am delighted, after 4 years of Prednisalone for PMR and a recent high dose for GCA.
The results are described as very encouraging and above average for my age!
I had thought that Alendronic Acid would be inevitable this time!
I urge everyone to seek a bone density scan before agreeing to treatment with these very heavy duty drugs, to see if there is any necessity.
First bit of good news in ages. I hope my luck has turned!
Good News Jane 💗
Excellent!! Well done!!
Fab news
Excellent news and you’re not even taking calcium supplements 🤗
Fantastic, well done.🥳😷
Hooray!
Good news for sure! Congratulations!
Yo deserve some good news! Brilliant x
Brilliant! Are you taking a calcium supplement and K2?
K2, Magnesium and high dose vit D. Calcium did not agree with me but I have a calcium rich diet. My DEXA Scan results have actually improved since my last scan in 2018.
What happened with the calcium? I'm trying to get on top of all these supplements and find the best ones and wondering if I'm taking too much calcium. What about potassium? Do we need to take that? Which make do you use?
I was on chewable Calcium - Adcal for 2 years maybe and was getting constant cystitis symptoms - no infection showed up. I imagine it was the chalky, granular, nature of it. My doctor took me off it, saying as long as I had plenty of calcium in my diet, I should be fine. All the symptoms cleared up. I eat a calcium rich diet, including the much demonised dairy.
There is a reason that Potassium, as a supplement, is not a good idea and I can’t remember it. Put a banana in your spinach and soft fruit smoothie. 😋
Wonderful
Well done, we all need good news.....👍
Really encouraging for the rest of us and delighted for you!
Brilliant news xx
So pleased for you. You deserve a little bit of luck. Have you achieved these results through diet?
See my answer to Blossom. We do have a good diet, it is not genetics, my mum had osteoporosis. The improvement in my scores is the most encouraging thing. I think we can all do this. Heron wrote a great post about how to do it.
Thank you. I will look for your answer to Blossom, and find the best posts from Heron. Take care.
I wonder if we can ask Heron to re-post it? It was so rich in detail and encouraging. I only told blossom about the supplements I take really - K2, Magnesium and high dose vit D. I also take Zinc, I can’t remember why, it will be something I read on here.
Hi there. What is a DEXA scan, please? Is it a bone density scan? I have not been offered one of these and feel I should have been. I’m two months into taking pred now.
Also, I have started on Adcal, on the recommendation of my GP. Where do you find K2 as a supplement? I think I read on here that that would be wise when taking calcium supplements.
Hi. These things seem to vary so much between doctors. I've been on pred for 2 and a 1/2 years and never been offered a bone scan. I asked to be referred for one about a month ago and I'm waiting.
I expect that I pestered my doctors, having been well trained by this forum. They are doing DEXA Scans but half the numbers, so it will take a bit longer to come through. Chase it though - if we don’t ask, we don’t get. Some doctors find it easier to prescribe unnecessary drugs.
Doctors often need prompting about tests like DEXA Scans. It is indeed a bone density scan, looking for signs of osteoporosis that can be worsened by steroid use. Medication like Alendronic Acid is often prescribed pointlessly without any evidence of damage to the bones - it does nothing then and has very significant side effects. Adcal is commonly prescribed and some people have no bother at all with it. I got my Vit K2 on-line, from Holland and Barret. It is crucial in the effective absorption of Calcium.
Thank you. I will see if I can track some down.
Thanks. Have seen your reply to Blossom.
healthunlocked.com/pmrgcauk...
Wonderful! 🌈
That IS good positive news Jane. Xx
So glad you have had some good news and well done
It will be all the hills you have walked over the years in Sheffield. x
Pushing prams. 😀
Great to hear.
Lovely to hear some good news x
That’s great news, they say the majority of people here are low in zinc, but I can’t remember what it does either!
So pleased for you!
So pleased to hear this Jane. xI will send you a message shortly. Things have been somewhat stressful. xxBrenda
So sorry to hear this Brenda. Please do get in touch. Xx
At last I can congratulate you on having some good news,well done you. Interesting timing as I am awaiting a scan right now,this will be my first one.
Good luck with it yorkieme!
Hi,
That is great news!! I had a Dexa scan in March just before lockdown and all good except for one vertebrae that shows osteopenia. My GP was very pragmatic and we both reasoned that this could equally be normal for my age as well as a side effect of the pred. She was happy for me to continue with the calcichew D3 as a precaution. Next visit with Rheumatologist and he insisted I take the alendronic acid, was concerned as I know 2 people who have osteoporosis who had bad reactions and no longer take it. I have decided not to take it, am on 8mg of pred now. Good to hear success stories!
One of the GPs in our practice said that I would end up in a wheelchair because I refused Alendronic Acid 4 years ago. We need to be knowledgeable, informed patients.
Must visit you - and you can take me to meet her!!
Fabulous news Jane!
So pleased for you. Thank you for sharing your encouraging news.
Wow, I am still waiting for my dexa scan my doctor ordered,but until virus has eased no chance !they have even cancelled my cardiologist appointment in 2 weeks. My hip is getting worse and waiting for injection, again waiting. I can’t get below 5mg preds as keep getting flare ups 😭😭
Chase it up! They did mine last week. She is doing half the usual numbers as she has to thoroughly clean the room and scanner between each patient. You sound like a priority to me.
Aw Jane that’s great news. You were due some , you’ve had a difficult time of late. Are the hospitals now doing checks etc? Thanks for the heads up on the Adcal. I seem to get times when I suffer with waterworks but no infection. Never thought it could be that . 😃😃
Me to...2 + years pred....recent Dexa scan ‘excellent result’...and no AA..after 2 months couldn’t swallow so stopped. Taking supplements from GP...reassuring as having difficulty getting below 10mg...within 2 weeks I have a relapse. As you say you have to take what your body needs to stay functional...will try reducing again in a couple of months.
That is excellent. I am asking for a second one when the two years is up to see how things are. Am not taking AA anymore.
The scans are available in Yorkshire. The technicians are back from the wards, the precautions are exemplary.. That symptom was awful, I was always getting up in the night. I did not experiment with other forms of Calcium - except cream on my porridge. 🤫
Yay Jane! Great news! 👏👏👏👏
Great! Not just for you but also encouraging for all of us.
Thats great news SheffieldJ.
I am awaiting my dexa scan results. I asked for the dexa in the hope of avoiding AAcid. I may ring for results today as your post reminded me!
That’s great news Jane and very encouraging. However, I have just received a letter from the chief medical officer of my local NHS trust telling me my DEXA scan which was due in May has been cancelled as “the radiology team deemed it not clinically necessary”! I was put on Pred for PMR in Nov 17. My DEXA in May 18 showed signs of osteopaenia in 2 places and mild osteoporosis in 1. I was given a course of very high strength Vit D and started on Accrete Vit D & Calcium supplement. I also take bone mineral supplements every day, increased my exercise and try to have a calcium rich diet. I have been fighting GP & Rheumatologist since scan to not put me on bisphosphonates. Everything, including whether I add in Methotrexate depended on the scan due this May. I was not surprised I hadn’t been sent an appointment yet because of pressure on the Trust due to C19, but to hear they have now cancelled it because the Radiology team deem it unnecessary has really upset me. I have an appointment with my Rheumatologist on 10th August and obviously I will take it up with them, but I worked as a nurse for this Trust for 15 years so I know it is highly unlikely the Rheumatologist will be able to do anything about it. I am trying to get a scan done privately but I need a referral from either the rheumie or GP, which I left a message for yesterday and am waiting for a call back.
I am spitting feathers!!! This is a short sighted false economy on the part of the Trust and government, who apparently have Tod the Trust to cancel all non-urgent clinical work. I will fight the decision, but I think PMRGCAUK needs to be aware of what is happening and fight for us all to ensure we don’t suffer as a result of decisions taken in No10, 11 and 18 by people who have no understanding of what we sufferers are going through. Sorry rant over, but thought you all should know.
I agree with all the points you make. Their decision is totally inexplicable to me. You are clearly a priority. Use your knowledge of the inside workings of the health service and fight this. It seems random and arbitrary and it probably was. It might help to note down bullet points of evidence as to why you are a priority - Steroid use, evidence of Osteopenia etc. Get your Rheumatologist into your corner - mine seems able to part the sea. Good luck!!
Thanks Jane. Good advice and my partner (a lawyer) is coming with me to my Rheumatology appointment this time for moral support. I will let you know how I get on. Writing back to Trust today to appeal their decision too.
Many of the decisions such as yours may well be made with the specific intent of testing to see how many people challenge them. There will be those who sit back and accept it,and those who decide to fight,so well done you and make sure that you employ every tool available.
This is just one more of the most cynical and disgusting actions being taken by those who put the £ before the patient.I wish you every bit of good luck and look forward to reading your post saying that they back tracked.
Someone has been told to halve the backlog.
And the assumption is made that all patients will be taking AA or an equivalent - so the DEXA result is immaterial.
Excellent news-I’m very pleased for you 😊
Inspirational and is evidence to support requests for scans
That’s just how I felt when the results were in the normal range 😊
Everything else is falling apart but I have a beautiful skeleton.
So glad you have some good news at last. Without your beautiful skeleton the rest would be useless anyway - got to start somewhere.....................
Spooky but positive 😂
A girl with ‘good bones’ was always a good ‘catch’. ......... 🤔🤔🤔
Good news indeed - and about time too!
We're all saying it - "about time you had some good news, Jane"! 🍒
So pleased for you! My first dexa scan showed my hips were not great but after hearing about the side effects of AA I said no way, so am keeping an eye on my calcium levels and doing yoga/ walking although I decided against the weight vest!
So glad to hear this good news. Will look for Heron's post. I had my first ever Dexa last week and my news was a shock: -3.6 T-score! Now I have to decide about AA 😩
I have got a feeling that DL took it without a problem, however, she is a Viking Princess.
Excellent!!!xx
So glad. It was time for something good. 🤗
Great news,
One less thing to worry about,
Sending a virtual hug erm can’t see one of those haha so 💐instead
Margaret.
Good news Jane. Mine was cancelled at start of lockdown. Goodness knows when I will get one, x
I'm very happy for you but let me tell you what happened to me. I'd been on prednisone for 3 years. And in April 2018 my Dexiscan reported only osteopenia. No different then the time before. In July 2018 I fractured 2 vertebra just by bending over. By 2019 I ended up with 6 fractured vertebrae, a fractured sacrum, and a fractured rib. The dexa scan couldn't have been more wrong and I have severe osteoporosis.
So sorry to hear your story Amkoffee. It must have been an awful shock. How are they treating you?
Good news...yay!
I also declined my rheumatologist’s prescription for Actonel (bone building) a year ago and went the way of eating calcium rich foods and walking once my GCA pain was under control.
Fingers crossed for both of us!
Jane, that's great news!.... Just the lift you needed... Hope the weekly injections are working for you...
I had my only Dexa scan just before lockdown... 2+ years since diagnosis.. The bones of a healthy 50 year old, (I was 72) was GP's comment, so I was chuffed to bits...
Take care, hang in, stay safe...
ATB. Lena 🌻
Thank you Lena! I wonder how young my bones are? The bones of a 30 year old was quoted after my first DEXA Scan about 4 years ago. It gives you a tremendous boost.
Great news Jane very pleased for you!
Wonderful news!
That is awesome~! Good for you, what wonderful news. Who knows? Maybe that butterfly has turned the corner and is going to land on your shoulder~! xo🦋🦋
There is one in my garden. I hope you are right! Xx
So pleased to hear this positive news. I think I will ask for a Dexa Scan as I take Alendronic Acid. Thank you for sharing such good news.
Good for you Sheffield Jane 😊Always encouraging to hear good news .
I started on Prednisolone in December 2019. GP was also about to prescribe Alendronic Acid (due to my gender and age: female 66, plus small frame) but, as I was awaiting a tooth extraction, he postponed and advised me to chase up the dental hospital. Then came lockdown! No tooth extraction. In May, I fell and broke my wrist, badly (right hand, too). Surgery to insert a plate 10 days later and prescribed Alendronic Acid because of my future fracture risk. I was reluctant to take the AA but a recent bone density scan indicated Osteopenia (T score -1.7). So I’ve resigned myself to taking the AA for at least a year (GP advised for the duration of the Pred med, which could 2to 3 years, if I’m lucky! So far no adverse side effects from AA but .....
So helpful to hear other people’s experiences of the drugs we’re prescribed.
No adverse effects is encouraging. Everything gives me side effects. Osteopenia can be reversed with diet and exercise.
Yay Jane! Good news at last! So pleased for you. 😘😘😘
Brilliant news Jane. I've just 'phoned hospital to re-book my private Dexa from March when it had to be cancelled due to virus. They're getting through all their private patients with their back-log. No good me asking my GP for one on the NHS as he just won't pay for it, so give up asking. £112 private so not too bad. Just about to pay £420 for an MRI on hubbys knee. Again GP won't pay for an MRI on NHS, so he has him on Tramadol. I want to find out what's going on with it and if that mean paying so be it.
Strange how I haven't been seeing anyone on the Forums posts. Just found yours in Promotions on my laptop.
I'm suffering side effects from Pred...terrible mood swings again and eyes not good either. Eyes are the worse I think. 11 Sept going for another pressure test.
Did they give you your number result for the dexa ?
Best wishes
Anne
No numbers Anne, just that the results were “ very encouraging”. Sorry that you are experiencing the mood swings. My worst depression occurred before diagnosis and improved with Prednisalone. Your GP sounds mean, anyone would think it was his money! I am going to my very well equipped Optician for a thorough eye examination. It’s much quicker to be seen and worth the cost. The equipment seems better than the Opthalmologist at the hospital has. I have just been told that I do not have Glaucoma, ( by the eye hospital) having been told that I have it a couple of months back. My eyes ache in the evenings ( horrible bursting sensation). I was told that I have cataracts the last time I saw my Optician and an issue with peripheral vision. With the steroid induced diabetes,I have background retinopathy . All dangers for my eyesight. My vision is blurred. I think we need to be proactive in seeking tests ourselves, if we can pay. The hospital was only testing eye pressures.
What do you mean about not seeing folk on the forum but you found me on promotions,? I note that this thread is nearly 3 weeks old.
* Your system is treating the forum posts like spam. Is it gmail? There must be a way to return them to your main in-box.
Hi Jane, That’s brilliant news. How long have you been on steroids overall?
Thank you for the tip. I was prescribed Alendronate today as it is suspected that I have GCA now. Just when I thought I was almost at the end of my PMR journey. ☹️
So steroids again whilst waiting for a biopsy that could take more than two weeks to happen - and then if negative am in a situation where I will need to wean off steroids again. A tad fed up here .....
I seem to be following in your footsteps!
... and congratulations again on your news.
Sally x
I have been on steroids since February 2016. Sorry that this has happened to you too Sally. I was started on 40 mgs of Prednisalone, for GCA, having got down to 3 mgs. My Rheumatologist suspects that Large Cell Vasculitis might have been present for quite some time ( non cranial) thankfully. A good Dexa Scan result has been my only good news for ages. I was gearing myself up for Alendronic Acid. I am now on Tocilizumab (5 once, weekly, self administered injections. I am already down to 9 mgs of Pred. I have however picked up steroid induced diabetes, cataracts, background retinopathy , and raised blood pressure. So a stitch in time I think. Please ensure that none of this has developed in you. It was quite sudden.
Hi. Yes it is a total blow - I know how you felt now. ☹️ Your comment has prompted me to make a note to ask for a Dexascan before agreeing to take Alendronic Acid.
I think I may have had GCA working in the background too. I had occasional soreness of the temples but my Rheumi didn’t think it was anything to worry about. It did seem to pretty much go away, and at the start of the lockdown, I felt amazing and had loads of energy. Typical timing!
All this seems to have happened from when my daughter was diagnosed with an aggressive breast cancer and my high dose steroid course for bilateral loss of hearing. My hearing is back to pretty much normal - and I thank God for that!
How long did it take you to reduce to 9mg out of interest?
Onwards and upwards I suppose!
Sally x
About 8-9 weeks. Following my much trusted Rheumatologist’s advice. I wouldn’t necessarily recommend such a fast, steep reduction but I had been accepted for Tocilizumab treatment and my body was really protesting against Pred. I feel utterly wiped out but the taper has not been hard like it used to be with my PMR diagnosis alone, pains, return of PMR symptoms etc
Crikey. That is amazing. I took LDN throughout my PMR - as I take it anyway for Crohns. I think it kept my inflammatory markers low - and maybe the reason they are still lower than expected for GCA - and possibly that my symptoms are not classic.
The fatigue is rubbish for you. I suppose with everyone being restricted on what they can do with Covid is psychologically good for us! I don’t feel I am missing out so much that way!
I lost so much hair with the PMR - and it had just started thickening up a bit whilst settling on 1mg. ☹️
Just all round a bit of a blow.
My hair is not thinning this time - I suppose it didn’t get the chance and some of these symptoms were probably PMR related anyway. I find Kevin Murphy’s range of products really good for making thin, fine hair look much better. It is all natural ingredients and biodegradable bottles. Expensive but you don’t need much. Available on-line.
I agree completely that the psychological effects are easier for us. When the whole world has stopped, how can we feel left behind?
I will probably miss being able to sleep so easily. It would be nice to see the end of a film though.
Having undiagnosed GCA could have had much more dire consequences. I am grateful not to have faced them. I am also relieved to be retired. I feel for the poor souls trying to hang on to their careers. I cannot imagine being capable of doing that.
Good luck going forward. Keep well informed. I am unusually blessed in my Rheumatologist. Keep in touch.
How is your daughter now? I cannot imagine anything more stressful.
Hi. Thank you for the hair product tip. My hair is already full of anything I can find to make it look half decent but I will try Kevin Murphy!
I work from home luckily but planning to retire at the end of October. It has been hard working with PMR - and a stressful job to boot!
Just hope someone sees me quickly so that I know what I am dealing with. All Such strange symptoms which only came on after I had a short 2 week high dose (starting 60mg) - for the bilateral loss of hearing - a couple of weeks afterwards - and boom - all these symptoms appeared. I wondered at first whether it was all down to withdrawal symptoms - but now - a month on, there is no change - and worsening. My daughter was diagnosed with an aggressive breast cancer just before my hearing loss - maybe stress and anxiety played a part in this.
So good you have a good rheumatologist - I haven’t got one at all currently - and when I did - during my PMR journey, it was a different one every time. I Certainly didn’t find THE one!!
Thanks for your help. Have a good day. 😊 x
Of course it is perfectly possible that the hearing loss was the equivalent of loss of vision in other people.
They concluded separately in ENT that it was a manifestation of crohns. The consultant told me to ignore all the weird pains and sensations I have in my head! The hearing loss has righted itself Thankfully - but the trouble is that no one seems to look at the whole person. I have no idea what is going on with me!
I have unintentionally lost a fair bit of weight, which I also thought could be an adrenal issue, slight loss of balance, dizzy spells, fullness feeling in my head, stabbing pains, Tingling sensations, soreness of temples but not constant, nausea, occasional frontal headache, pain in my jaw twice but could be to do with a slightly wonky jaw which I am aware of when visiting the dentist, breathlessness, dry cough and chronic fatigue again! None of this is constant but head fullness feeling is scary when it happens and then makes me panic!!
Does that sound like GCA? It does possibly to me, but inflammatory markers not bad - CRP was 8 on my last blood test.
Just hope I get a decent Rheumy to sort me out!
Thank you for being there for me. Not sure I could remain sane without this group!
Sally x
If it weren't for the Crohns I suspect it might put GCA on the list - enough stress around there to cause it. Trouble is, once there is one diagnosis in place some doctors are blind to others. Crohns is autoimmue disorder so there is an increased risk of you developing another.
I know very little about the fact that GCA can cause hearing loss in the same way as sudden sight loss. I first learned of it through a post that Jinasc and perhaps PMRPro shared.
I used to suffer with chronic ear infections linked to Psoriasis. They always seemed to coincide with something stressful that I didn’t want to hear. Prednisalone seems to have got rid of this.
Discuss with them what they will do if the biopsy is negative - a negative biopsy doesn't mean you don't have GCA, it means they didn't find what they were looking for and there are several reasons for that. including the temporal artery not being affected at present or they looked at a bit without the lesions. In addition, the longer you are on high dose pred before it being done the less likely they are to see the giant cells. If the biopsy is negative then they should treat on clinical symptoms and response to pred, not just stop the high dose pred. After only 2 weeks it is possible to reduce to a lower dose quickly.
Hi PMR Pro, Thank you. That is very good advice and is stopping me stressing so much about not being seen quickly. The NHS is SO slow here and provisional appointments are being made for August NEXT year! No hope then!
So disappointed about the probability another few years on Pred - and now the prospect of Alendronate which I escaped first time round.
Thank you again - and no doubt chat soon. Sally x
Great News 🍀
DEXA Scan Results
Dexa scan results / Osteopenia
