Still waiting…….

[creditcrunchie]

I posted a couple of weeks ago about an appointment with Liver Specialist. This appointment was very productive and whilst at the hospital I got bloods done and picked up a prescription for a mild diuretic and told not to use this diuretic until I received a letter giving me dosage. Hopefully the diuretic will resolve the problem of water in my stomach as a result of Primary biliary cholangitis but the GP has not received a letter either so I guess I will have to get on the case in the New Year. I hadn’t realised the connection between liver and osteoporosis and as the Dexa scan for my liver showed deterioration of my spine this has finally resulted in my having bloods taken and hopefully this will get me on track to receive the infusion for my osteoporosis treatment which was halted for NHS financial reasons (in September). But it all seems to take so long.! I need a knee replacement and finally have an appointment in January but I know that I would currently fail any pre op assessment with an anaesthetist given I’m 82 with my various underlying issues. Scleroderma reminds me of an Octopus 🐙 with tentacles that go everywhere. I wonder sometimes if I am totally nuts even considering this Knee operation and if anyone similar age, similar problems would give me an outsider’s viewpoint I would appreciate it. Thank you for reading my post.

[OldTed60]

Hello. Firstly I don’t have the issues you ask about and I’m 20 years your junior so not the person you requested support of advice from. But I was shocked to read that you’ve been denied your infusion for your osteoporosis on grounds of expense rather than any medical reason. And that this has led to damage of your liver now as part of PBC is really awful. In most people your age who don’t have SSc with PBC or advanced osteoporosis - I would think a total knee replacement/ TKR would be quite routine, given that osteoarthritis is mostly associated with ageing and is the most common cause of knee and hip replacements. But in you case I’m really not sure.

Can you ask your rheumatologist or specialist nurse for advice on the ifs and whens as soon as they are back at work in the new year. With systemic sclerosis being the Octopus in the room as you excellently describe - it’s very important that they lead on your overall care. I only have osteopenia and spinal and hand osteoarthritis so far so an on no treatments for either. But I’m on mycophenolate and Rituximab for my systemic sclerosis and I waited for needed stoma surgery in July with my rheumatologist advising on when to stop Mycophenolate prior to surgery and when to start Rituximab following the surgery. She isn’t a scleroderma expert so I also sought and received helpful email guidance from Prof Denton at Royal Free about suitability and timing of my surgery and treatments beforehand - which we both found very reassuring.

I hope this helps a little and I wish you a very happy Christmas with improved outcomes health wise for the New Year ‘25

[creditcrunchie in reply to OldTed60]

Thank for such a comprehensive reply with such good advice. Just to clarify the osteoporosis infusion was once x annually and amazingly it was done in home. Such luxury which I loved but realised going home to home must have cost a fortune as against doing multiples in a room at the same time so I guess it was an inevitable it would eventually be withdrawn it was handled by being referred back to my GP but all they could offer was the tablets I had struggled with over the years. My oesophagus has worsened and I struggle somewhat with swallowing. I was referred by my GP to hospital and was rejected so upto date today I’ve had bloods taken and await Care for the Older Person to decide if I can have the infusions but I guess infusions are more expensive but I will really push for them . And the advice you give about speaking to my Rheumatologist is really sound and I will definitely do that. I also have peripheral heart disease (PAD) plus need monitoring of heart and lungs. Yes Scleroderma is like an Octopus and it’s jolly hard work trying to keep ahead of it. Is the stoma related to damage caused by Scleroderma ? The knowledge you share in your posts I’m sure inspires others and is always well received so I take this opportunity to say thank you. Kind regards Credit Crunchie ( I gave myself this name in the 2008 economic crisis thinking it was witty and have hated it ever since!!).

[Montaza]

Dear Credit Crunchie, scleroderma is a real octopus alright! I'm sorry to hear about the delays you have experienced. It is a very complicated disease with so many manifestations. I'm 63 and have PBC of the liver too and painful knees. I'm taking Ursofalk for the liver and it seems to work. For my knees I am doing exercises to strengthen my legs and muscles and may probably need them done in future according to my Rheumatologist, not a Scleroderma specialist. I have also had a melanoma removed, another tentacle of the octopus! I hope you get the advice and care you need soon. Stay positive and best wishes. X