From RA to Lupus. High dose pred questions.

[Chickenkeeper2015]

Hello everyone.

My partner was diagnosed with inflammatory arthritis in 2015 and has been receiving treatment of various sorts for it ever since. The most long lasting of those treatments being Benapali (Etanercept) which he has been taking for 6 years.

After a recent major flare and switching to a new hospital, it turns out that he actually has lupus (positive dsDNA and ANA and low complement levels). His rheumatologist is currently trying to work out whether it’s been lupus all along and was misdiagnosed, or whether this is drug induced as a result of the benapali.

But my questions are around prednisolone. My partner has taken it before in doses up to 40mg/day, but now is going to be taking 60mg/day as his rheumatologist is concerned about his kidneys. Should he be taking calcium and vit D supplements? And if so, which would people recommend? Also he has high blood pressure which is currently sort of controlled by amplopidine (5mg) - does anyone have experience of this? I’m wondering whether we should chat to his GP about increasing the amlopidine dose?

Pending the results of some further tests it’s been suggested that rituximab could be the next step.

Thanks for reading. We felt like we were getting a good understanding of rheumatoid arthritis but now there’s a whole lot more to learn ☹️

[PMRpro]

Have they not given him calcium and vit D? How long are they expecting him to be on the high dose pred? If it is just a short term thing to deal with acute inflammation then it isn't so important. The GP should be able to prescribe something like AdCal but I personally think a higher dose of vit D works better to protect the bones, maybe add another 1000 IU (I take 4000 IU and have no bone density problems even after about 12 years on pred, though at a lower dose), Good calcium in the diet will be OK short term

He should probably monitor his BP - do you have your own BP cuff? And then the GP can decide what to do if the pred sends his BP up.

[Chickenkeeper2015 in reply to PMRpro]

No, they’ve not even mentioned anything in terms of calcium or vit D, but thanks for your words.

Yes we have a cuff at home so can keep an eye and go back to GP.

Turns out they’re now very concerned about his kidneys so he’s now also under the care of the renal unit. That’s OK except his rheumatologist said ‘I’m referring you to the kidney people because I’m concerned’, and then today the kidney people phoned and said ‘We’re not going to do anything until we can be guided by rheumatology’ 🤷‍♀️🤦🏼‍♀️

[PMRpro in reply to Chickenkeeper2015]

If there are renal problems that COULD be the source of the rise in BP and that MAY be due to the lupus which can cause something called lupus nephritis, Renal will want to know if the kidney issue is linked to the lupus and that is the rheumy's department. They obviously need to get together and have a multidisciplinary discussion.

I'm no expert, but I imagine there are ways of managing the BP problem by managing the lupus associated renal problems and the GP may be way out of his depth there so you also need the rheumy's input over that too. For example, there are probably better medications than amlodipine for a start. And he is on the steroids to make a start on it.

This may feel a bit scary but I think it outlines the overall situation well

mayoclinic.org/diseases-con....

and they do list approaches to management. It sounds overwhelming but only because they have it all in one place and in fact they probably have a protocol they follow one step at a time which won't feel so bad.

Good luck - do tell me how you get on.

[SurferGuy]

In addition to all of the above, he should also be prescribed Alendronic Acid to protect his bones. I wasn't prescribed this until 2 years after starting prednisone and now have osteoporosis.

[Chickenkeeper2015]

Thankyou both for your comments. 3 months in and it hasn’t been an easy ride so far.

On the plus side, after a load of blood and urine tests suggested his kidney function was pretty poor, OH was pushed through as an emergency case and had his first two Rituximab infusions before the end of November. There were no obvious side effects.

He’s now tapering the prednisolone - dropped from 60mg to 50 on the 21st Dec, and to 40mg from Thursday this week. He remains on 10mg amlodipine and now 10mg lisinopril. And also takes vit D and calcium and esomeprasol.

On the downside, he’s had horrendous fluid retention in his feet and ankles for the last 6 weeks, he keeps getting weird sores on his hands, forearms, face and scalp which are awful for a few days and then go away completely for a few days, he’s ballooned in general and specifically around the face which he’s really self conscious about, his blood pressure is still sky high despite a second blood pressure drug having been added in, and for the last 3 or 4 weeks he’s been getting, apparently at random although seemingly brought on by bending over, horrendous stomach cramps that go from 0-60 in the blink of an eye and are often accompanied by needing the loo with the same urgency - just like food poisoning- but every day. And he’s nearly always freezing cold in the morning and often has to go back to bed just because he’s feeling so awful. And he’s barely sleeping. Oh, and he’s hardly weeing at all during the day, but then almost every hour over night.

All in all things are pretty tough, we’re feeling pretty bewildered and out of explanations for everything.

He’s seeing his rheumatologist again at the end of this month and speaking to his kidney guy shortly before.

I’m not expecting any answers, just needed to get it out really.