RA and Chronic Kidney Disease medication?

[barbieg]

This is a question for my neighbour, with his permission. He has CKD and has been without any medication for his RA for some time. He decided to ask his RA consultant if there was anything he could take as his quality of life is zero at the moment. He is in his mid eighties so feels the risk of any medication making his quality of life worse doesn’t matter. I’m sure I’ve seen some people on the forum have CKD and are taking some forms of medication but I can’t find anything even though I’ve tried using the search bar. He also has OA in his knees. His consultants secretary got back to him this morning to say there is absolutely nothing he can prescribe. He is so upset so I said I would ask on the forum . Thank you.

[medway-lady]

I have CKD a GFR of 27 he will know what that means and take Azathyoprine and Benapali and been doing so for 5 years. I’ve never been told there is a problem except for JAKS and CKD and RA has cross over meds like Aza.

[barbieg in reply to medway-lady]

Thank you for your prompt reply. Do you mean Azathyoprine is prescribed for CKD too? His consultant intimated he had spoken to his kidney consultant too and been told no suitable medication for him.

[medway-lady in reply to barbieg]

It was used in transplants years ago I don’t know about now though. It might be age related but I’m 70 and I’m sure there are no problem unless GFR is really low say under 10 but that’d be transplant status. My Nephrologist said sometimes doseages need adjusting for some meds like antibiotics but with CKD steroids could be used. I know no NSAIDs but DMARDs have not been an issue even when my function was at 8gfr. The RA was still treated. I wonder if he’s misunderstood or just talking about OA and I don't know about that. I’m prescribed b12, Ad cal, and know for certain it’s no to Alendronic Acid as it’s not licensed for CKD patients but we get an infusion for bone protection. I’ve also had Abatercept.

[barbieg in reply to medway-lady]

I’m in despair for him as he’s been told no to steroids too. I told him to ask about that months ago ! I’ll ask him if he knows what his GFR is. He’s also been told no to DMARDS. He was on Methotrexate but only on a minimal dose till they stopped that and never been offered any other. Thank you.

[medway-lady in reply to barbieg]

He might have gotten confused if he was really low he would look and feel dreadful. I took over 150 mcg of steriods every day for months as it’s been known to improve kidney function. I don’t know what to suggest obviously I can only say about the treatment I’ve had but it does sound odd. He should contact the Kidney Patients Association as they can really help him. The Renal Unit will know the number of his local group, he really should not suffer. Even his nephrologist can get onto RA team, as he/she actually have control and can recommend meds.

[cathie]

Has he considered seeking a second opinion? There must be some treatment they can offer?

[barbieg in reply to cathie]

I’ve just spoken to him. I’m not sure he would consider a second opinion as I’ve tried to get him to do that before. He’s been with his consultant for so long he really believed in him although he’s not done anything for him for years.He has no idea what his GFR is, he had never heard of it but I suspect it is probably very low. He was injecting B12 once a month but he’s just told me the hospital has stopped that! I’ve made him ring the hospital to sort that out. They just seem to have given up on him. I’m so sad for him.

[medway-lady in reply to barbieg]

Is he on a palative care pathway ? It does sound like it. GFR will be on his copy of the consultation letter can you see a copy.

[barbieg in reply to medway-lady]

He’s not on Palliative care as far as I know. He is such a proud man and I’m sure he doesn’t tell me everything. I’ve managed to sort out his monthly injections. That’s being delivered next week. The hospital hadn’t sent the prescription! That’s months he’s been without that. He is insisting on waiting for the letter being sent to him (supposedly) from his RA consultant) to see what he said. Knowing his consultant that could be weeks . He has promised me he will fight for some treatment so all I can do is keep my eye on him and try and fight for him. Thank you for the information which I passed on to him. At least we both know what is possible especially as he has nothing to lose. His quality of life is zero, his words, which he says he told his consultant some months ago . He still got no treatment. It’s so sad the way some of us have to fight for any sort of treatment.

[medway-lady in reply to barbieg]

Pass on my best wishes to him, CKD is hard but not hopeless. Xxx

[barbieg in reply to medway-lady]

Thank you , I will and thank you for all your information. It’s a big help.

[cathie]

Very sad indeed, I'm so sorry. It sounds as though you can make a difference if the hospital will give you information - they can be sticky with 'patient confidentiality'. Its lovely of you to try. C