Hi to all and hope the new year (freezing January) isn't doing too much damage to you.
Last year I wrote about the horrors of my spontaneous vertebral fractures. Sorry about the original spelling mistake in that post. My tablet refused to put the r in vertebral!
Since then I was doing well. Slipped disc and the evil bilateral and sciatic nerve pain diminished and I was slowly getting on top of the stiffness and slower walk. I had an appointment with my new closer to home Rheumatologist and he seemed pleased. Two of the Lupus/arthritis drugs he asked me to drop doses. Hydroxychloroquine from 400 to 200mg and prenisolone from 5mg to 4mg a day. He also started me on Alendronic acid 70mg a week. Eight days after this change I woke with violent restless legs and constipation that caused anal bleeding. Arms, jaw and legs have been driving me mad with jerking. I haven't had these luckily for years so it was quite a shock. Six days after this started my stomach started dumping. Food passing through my stomach too quick and my usual habit of two to three visits to the loo helped by senokot a week suddenly changed to two to three times a day. Sciatica has returned in my left leg and so violent I've been unsure on my feet.
Three weeks on today, I had another appointment. My weight has dropped by six kilos in twenty-six days and the lack of sleep, one to two hours has knocked every ounce of energy from me.
His attitude to my problems was to blame anxiety. No interest in helping in either sleep, restless legs etc or the fact that my weight has dropped and my abdomen looks like I'm six months pregnant and very sore.
We all know some problems come and go occasionally but his attitude was awful.
Come home feeling like it's my fault. Partner who has battled cancer for years was shocked as well especially as he has seen all this happen.
Have any of you experienced similar problems with the meds?
With only one to two hours sleep a night now and so little support today it's left me shocked and very disappointed in the way he pooh pooped everything that had happened. I'm frustrated as well as frightened at the sudden change of attitude and lack of interest. Shocked if I'm honest. The last fourteen years of disease has many huge patches where lack of support was present but sometimes and sure most of you know what I mean it's been pure luck and stubbornness in myself that has been all I've survived on.
Look forward to any ideas you may have.
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catno1
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I wish I could offer more advice. I only have experience with low dose prednisone for PMR. What condition have you been taking your medication for? If it is a chronic condition it seems a bit sudden to change the dosage so much all at once. The drop in hydroxychloroquine from 400 to 200mg and prenisolone from 5mg to 4mg a day plus adding another heavy-duty medication with potential serious side effects at the same time was, completely understandably, too much for your system to handle. I am appalled at your doctor's cavalier attitude. You have symptoms caused by medications which are adversely affecting your quality of life - no wonder you are anxious now!
Is there any chance you can return to your previous rheumatologist even if it is inconvenient? I think the problems you are now experiencing need to be treated promptly and compassionately.
The prednisolone was prescribed for SLE originally but added problems like osteoarthritis in both feet, one that is now advanced due to lack of care and knee damage/swelling. My Rheumatology consultant blatantly ignored my call for help and failed to examine my feet. My GP was angry in the end and ask for his emergency care. By this time my right foot was far beyond surgery. That is when the first dexa scan found my t-score to be -4 for my lumber spine. He panicked and placed me on prolia. The rest sadly isn't history it's become horrible reality.
I hear you re returning to the devil I know, laugh with me! An appointment was made last September when I sort urgent advice due to jaw and bad lower back pain there. They booked an x-ray which I attended immediately but fractured before I made it to their 2nd dexa scan. They may have already cancelled the next appointment made for March. I am wondering! If I get a reminder for this I seriously may attend. Bit scared at being ignored with these problems when support was all I asked for. An awful change in attitude was and is still shocking me. Just 26 days ago I felt safe and now like I am being a nuisance and making a fuss. One thing believe of me, it takes a lot to make me scared. The attitude was arrogant and totally appalling. All I did was explain what had happened in the last three week and showed him the huge swelling in my tum. I am very tired but when we left my partner nearly erupted in rage at the rudeness we experienced. It takes a lot to make either of us angry believe me.
Thanks again for replying and being there. These words from others help me stay strong.
Perhaps you could drop the AA, temporarily at least, to see if any of your symptoms clear up. Digestive issues are a common side effect of AA. I haven't heard of it causing any of your other symptoms, but we're all different, so anything is possible. It won't hurt to stop the AA, as our bones only lose density relatively slowly. If you find any of the symptoms go away, you could then try the AA again and see if you get the same side effects, or go straight to your doctor and explain it isn't suiting you. There are alternatives.
Hi and thanks for your note. Yes I agree about dropping the AA. I've only taken three so far and now very worried. I have a small hernia in my upper abdomen and huge pain there and at the start of my colon. 64 to 58kilos in 26 days has now worried me.
The attitude of the doctor has obviously alarmed me and I'm feeling so weak as you know I had to ask on site for thoughts.
Yours are appreciated and make sense. The sudden increase in pain and very nasty symptoms have simply shocked me. I have already missed this week's dose so keep your fingers crossed for me.
I had a dexa scan on the 6th and asked during somehow during my confusion at his attitude what the results were. He blatantly told me he wasn't going to tell me. Please believe my weakness in needing support because there was no excuse for his very bad attitude. In fourteen years of SLE etc I have always followed medical advice.
Are you in the UK? If so, you have a right to a print-out of your results. They should have been sent to your GP so you could ask the receptionist to let you have a copy.
Indeed as you say. I will be asking for this. I attended an appointment yesterday with her and she was not happy how unwell I was. I hope she will help.
Initially he said no to my enquiry, shortly after he said he hadn't received the results. The childish and very bad attitude before me today was horrible.
Thanks for the reminder! I live in awful Essex - my home but awful because our hospitals are full of people that have made themselves unwell. Take no offence at my sharp comment, I mean no offence to anyone but the doctor has made me feel like a fool today with his poor support!
Just we careful - how long were you on Prolia? You might need the AA or something similar. I think a lot of patients are put on risedronate or zoledronic infusion (to avoid the gastric side effects after prolia) a bit longer to prevent the rebound osteoporosis prolia can cause.
Is there not a law which says that patients are entitled their test results?
I must say it sounds like the doctor was having a very bad day, for whatever reason, and taking it out on you, which is thoroughly unprofessional.
As you say his bad day was not welcome. I had four shots of Prolia before my spine fractured last November.
I hope to speak with my GP soon re the dexa. This evening after eating my stomach and abdomen are causing awful pain. My back that was mending so well has had three weeks of less than 2hrs sleep a night and the pain is extreme.
Sincerely both problems were dismissed today and my thoughts re side effects that I have had many years ago when lowering hydroxychloroquine and now the new alendronic acid concerns he made out to me suffering from anxiety! If I am then I think I am allowed to be. I am getting desperate now for sleep and fearful of falling and causing more fractures!
Were you ever tested for "secondary causes of osteoporosis" because one thing prolia is supposed to do is help the spine. But some conditions will prevent any treatment, whether natural supplements and exercise, or pharmaceuticals, from working effectively.
Indeed. Sadly I have had no opportunity. Local consultants at two hospitals have now proved they have no interest. Lupus is, in some reports, thought to be a cause and also for deforming osteoarthritis. This has only recently from what little I have read been admitted. We have sat at home this evening wondering if I should seek private help. It is a risk and cost I may have to consider. But I am sceptical. Many years ago after suffering Petit mal seizures and the NHS finding no sign of epilepsy I did this. It proved very helpful. Prednisolone has been part of fourteen years of my medication. That is always blamed. I have been left on this after the dose was gradually reduced from 12.5mg to 5mg. The lower dose I have been prescribed for 11yrs now. Do you believe this could be the root cause?
On the PMR/GCA site people occasionally ask for recommendations for rheumatologists in their area. Why not ask on this and any other forum you may be a member of? I do know that on the PMR site people often have good luck with a private consultation and they may also be added to the doctor's nhs list after that. I don't really know how things work in the UK (in Canada private practice is not allowed) but it seems like your situation calls for some urgent competent care. Good luck. And do keep in touch. We care about you and wish you well.
I didn't realise you'd been on prolia. Bisphosphonates are prescribed when stopping prolia to reduce the risk of rebound fractures, so I suggest you discuss all this urgently with your GP rather than just stopping the AA.
That's my concern. Thank you for caring it's much appreciated. After the five vertebral fractures last November I was keen when offered AA on 3rd of this month. These side effects today are now worrying. My GP is a good lady and cares but I have found she and every hospital doctor refuses to a have interest in prolia rebound effect even after my spontaneous fractures. There was no falling!
Thanks for writing. I've already called GP and have an appointment next Tuesday. I saw her on Wednesday and she was hoping the hospital would help especially after she saw the physical mess I looked after no sleep for weeks and pain across my middle. I'm hoping she can refer me to a better hospital if not I have no choice but to seek private help. My partner has just described how even today he cannot believe the arrogant man we encountered yesterday. He has admitted that like me he was totally confused by very bad attitude after I had described what my problems had been.
Defensive without need and mocking. Worst for me as it reminds how it took 16days and an MRI for the same hospital to believe I had a fractured spine and huge nerve pain last year.
Thanks for sharing! I'm sorry about your doctors attitude. You know your body better than anyone and maybe there is a different dr. you can see? I'm sure you will get some helpful advice from this forum and good luck.
Thanks you for your support. One of my excellent anticoagulant nurses once said to me that self diagnosis becomes the norm late in disease. I was diagnosed with SLE 14yrs ago. She was having a natter with me while she had a look at my coaguchek on it's usual yearly service. This woman is now one of the senior staff and has won awards. In some ways these comments can cause you to be hard on yourself and ignore minor issues. I'm have no sympathy with my own body at times with its ups and downs.
It's probably a severe fibromyalgia flare, legs, tummy, jaw etc. With my spine happily rested and on the mend the RLS and huge swelling in abdomen not come at a good time. Pain has increased in my back violently and sciatica. Sometimes even a simple decrease in medication can cause our bodies to react but when it's causing so many problems all we need is the doctor to listen. A simple 'keep going, rest when possible and if no improvement contact me in a weeks time?' would have made me feel safe.
Laugh with me please - this unhelpful and irate doctor accused me of having cognitive problems! Maybe he should have consulted the symptoms of Fibro. Happens to be one of the many horrors as you may already know. Idiot behaviour!
If he had stopped being so rude he may have heard me.
I've survived worse. All your support keeps my chin up. Thanks!x
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