Hi everyone. You have been so supportive. Yesterday I got taken back into hospital for very high calcium and inflammatory markers. In a lot of pain in back shoulder neck and everywheee else. They have moved me from 15 pred to 40. Prescribed inhalers for asthma. Still have breathless and pain from lung and clots. And also keeping me on the cyclo for six months. I am trying to seek second opinion but now in hospital. Hurting like mad everywhere and waiting for new butrans patch 10. It’s due today. Can barely cope with pain right now. Will probably lose hair - swell up and put in on weight. I guessed this was coming as I have been feeling worse. Just looking for support and to the experts - how can I get out of this cycle. One doctor told
Me TCZ was too expensive. They could better spend nhs money elsewhere. I couldn’t argue. But that is why I am seeking a second opinion. But I don’t want to upset this consultant - dr Beynon as he is a great close I Ian. I am trying g to see the southern man and a dr Giles in uch. All privately just for one apptmt.
Love and thanks. Beverley
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Oh dear. I can't help with advice much, but thought tcz was for difficult case which yours seems to be. But just wanted to say I hope you feel better soon. 🌻
It does not matter if you upset your current medics, you are much more important than them and TCZ is reserved for complicated cases, like yours.
'One doctor told me TCZ was too expensive. They could better spend NHS money elsewhere".
I am astounded and this is completely unacceptable and as you are in Hospital ask to see the Patient Liaison staff pronto. I only wish I could walk in and take that medic apart.
No-one deserves to be spoken to like that and that medic needs pulling up.
Have you anyone visiting you who can help you to argue, as I completely understand you are exhausted.
If I recall correctly, I think I advised you to contact Consultant Rheumatologist Rod Hughes at Ashford Hospital. The Surrey Support Group cannot praise him enough.
Professor Baskhar Dasgupta, which I think is the one you are talking about is located at Southend.
Keep you chin up although at present it is probably a good howl you need.
Thank you. I will do as you suggest. I am booked to the Southend chap if I can get there tues. I am also advised to see someone in uch. Next I will go to Surrey. I am in north London - but will act on guidance. I wish you could punch him on the nose and I will talk to patient services. Deeply appreciated. He is one of Beynon’s team. And another doctor was present. And heard him. I mentioned it to her and she didn’t correct me. And I didn’t see him again. He blamed the pharmaceutical company for uplifting the cost. I felt in the middle of a drug dispute and like a scapegoat. I told him I have paid my taxes. Pathetic response. But was gobsmacked to be honest. I felt judged as not being worth the money. Was pretty awful. I will follow through. I am fairly assertive when on form and can deliver hard messages. I just need the brain fog and the pain and emotions tombw a bit more stable. But o will pursue. Thank you so much. Xx
My hands are too old to punch him..............better than that I would insist he went on a course to learn to treat patients with respect, they are ill and do not need unsympathetic people around them. What the h**l is he doing in a caring position.
It makes it worse that he can do it to a vulnerable person. When you feel so ill it's almost impossible to get your mind and mouth to work in tandem. 😤
I'd report him. Not his decision whether it is too expensive - if it is appropriate it is used and biologics are widely used for years in RA, and some are equally expensive.
We aren't second class citizens and a stay in hospital that can be avoided by using a more expensive drug soon pays for it. A hospital bed costs an average of £400 per day. TCZ costs £12K per year.
i hope you find someone with more empathy to help you through this terrible time. There is often one clever ........ To make you feel guilty. When speaking to oh consultant about the cost of his tablets he said that was not for us to worry about. It felt much better when we collected two months supply at over£4,000 pounds. I think we have been very fortunate and have only had one AMU doc who was a ......... Take care. J
So sorry to hear that you have been having unrelieved pain. I hope you have your patch by now. Not to give you extra worry, but with the high calcium, make sure you are also being tested for hyperparathyroidism, not to be confused with hyperthyroidism; I have been down that road before, needing surgical removal of the offending parathyroid gland.
Since it was a reason you were hospitalized, I would hope they would be looking for it. Hopefully, your high level is transient. The symptoms are vague, and are symptoms we all experience at one time or another. I hope you will get off the hook easily. It is strictly a blood testing diagnoses, and parathyroid surgeons are not keen on scans to diagnose this endocrine disorder.
For more information , if you are up to it, visit the Norman Parathyroid Center's website. Dr. Norman holds the patent on the minimally invasive technique and an entire wing of Tampa General Hospital in Florida is devoted to that surgery only. They have an international practice .It's all about calcium and its extreme importance to be at a normal level for a properly functioning neuromuscular system. Calcium is not just about strong bones and teeth , and extra calcium should not be in the blood stream in adults over 35.
They did my surgery in in 2012 ,minimally invasive, no scar, no post-op pain. The surgery was easy, but it took me 15 months after surgery for my body chemistry to fall into line with a normal calcium level and for me to be well again. I imagine it was something like the adjustments we go through when we are completely off prednisone.
Now would not be the time for extra calcium supplementation. It's also a very rare condition and many physicians including endocrinologists never see a case in their lifetime. I figured it out the diagnosis myself from 2 clues and used their medical record review offer ; heard from one of their surgeons in 4 days after they got what records they required that I needed treatment. I had been feeling so unwell that I felt like I was being slowly poisoned. They have a foundation for patients who cannot afford their services or are not insured.
By no means am I suggesting this is your illness, but it does fit with a high calcium level.
I am sure you will get over this bump in the road; this too shall pass.
Take advantage of whatever rest you can get; all will get sorted out. Please let us know how you get on.
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