Side Effects Damaging Kidneys and Liver

[MaryinFL]

Hi All, I am in Florida, USA. I am a 70 year old female, diagnosed with RA in 2021.

I have been on Meloxicam, Methotrexate, Sulfasalazine, and most recently Leflunomide, as well as Prednisone. None of the meds put me into remission. At best I had a 70% reduction in symptoms. I was taken off Methotrexate and Sulfasalazine due to side effects. On the drugs I have elevated ALT scores, off the drugs they go back to normal. I also have a family history of kidney disease, which so far I have avoided and would like to continue avoiding. I have been on Leflunomide, which is supposed to be kinder to liver and kidneys, for six months. So far that drug has the most side effects and has been the least effective controlling symptoms.

My recent blood work came back showing liver and kidney damage, very low lymphocytes, and very high C-reactive protein. I am waiting on the results of a TPMT activity test, which I assume is needed before being prescribed Azathioprine. My concern is, side effects for that drug list liver and kidney damage. Seems like that would be throwing fuel on the fire.

I have an appointment with my rheumy in a few weeks (if she doesn't call sooner after seeing that blood work) and I want to be prepared. So lend me your experience and knowledge.

Are there effective RA drugs that do NOT damage liver and kidneys?

[medway-lady]

There is no answer to this as what hurt me probably won’t you. And I speak as someone who did get an AKI without warning, symptoms or indeed any risk factors. My AKI was a prescribed drug reaction that has happened to just a few people world wide. I’d just add I have CKD with a GFR of 27 and prescribed AZA which works well without side effects. It is also used in kidney transplant drug regimes. In fact it is your Nephrologist who will agree with the RA consultant a medication protocol. I hope that helps. And also remember even the most common medications can do harm, rarely of course but it does still happen.

[oldtimer2]

Approximately 0.3% of the population lack thiopurine s-methyltransferase (TPMT), an enzyme which helps remove thiopurine drugs such as azathioprine from the body. In addition approximately 11% of the population have measurable but reduced levels of TPMT (so called intermediate group). So if the TMPT test is OK, you're not at risk of that problem.

Unfortunately, having Rheumatoid Disease puts you at increased risk of kidney disease in itself, and, as far as I can see, all the medications do too. You may be advised to have lower doses of medications (and, of course avoid NSAIDs). Regular kidney function testing is a good idea to pick up damage at an early stage. If you aren't treated, your Rheuamtoid Disease gets you, if you are treated, the medications will! - We just can't win.

[MaryinFL in reply to oldtimer2]

If you aren't treated, your Rheuamtoid Disease gets you, if you are treated, the medications will! <-- Yes, I am beginning to see that.

[smilelines]

I hope they consider a biologic for you. They are not processed by the liver. Take care.

[wilbertjellyfish]

Surely the worst thing for you as a whole person is the damage the RA is doing to all of you. I understand you're concerns about your organs but you can't protect them at the cost of being in pain all the time. Perhaps I've picked you up wrong. Hope you're medical team find something to help you that isn't damaging.

[MaryinFL in reply to wilbertjellyfish]

I work full time, and I work at home so I can care for my 25 year old son, who has Down's Syndrome. I can't escape old age but I would like to be functional as long as possible. I don't want to burden my family with two disabled people.

It's not about pain. In the two months between onset and seeing a rheumatologist who prescribed meds, I was completely physically disabled, unable to stand, walk, or hold a fork to feed myself. Not from pain, although there was plenty of that, but because body parts failed me. I would pick up a pen and it would fall from my hand. My joints swelled, pinching nerves and fracturing bone, and I developed dozens of nodules in my lungs and liver. I need meds. I suspect my life would be very short without them.

So far those meds are not bringing my symptoms under control. Its been over two years of going from one med to another, with long stretches before each new one starts working. They all eventually slightly reduce inflammation then have do be stopped due to their effect on my organs. Now it is not just a matter of elevated bloodwork that can be reversed, I actually have damage. My rheumy is not happy. I am not happy.

At this point, all I am looking for is advice. Anecodtal or not, have you been through something similar, what worked for you. I know what worked for you may not work for me, but is worth investigating.

[wilbertjellyfish in reply to MaryinFL]

Well I'm self employed working a lot and have five children and a farmer husband so I do his paperwork and stuff too. So I understand that.Six and a half years ago I was diagnosed sero negative inflammatory arthritis. I was nearly always was in pain somewhere but my bloods bar the inflammatory markers were ok. I'd tried six biologics over the years. Mtx, still on it. Sulphazalizine for a couple of years but stopped because it wasn't doing much. Hydroxycholoquine again stopped I'm assuming they thought it wasn't doing much.

I've never been off prednisolone and now my adrenal gland is under functioning so probably won't get of it.

I was hospitalalized in September told I needed more steroids, again start December told infection because of steroids should take less and a week later readmitted.

This is when they decided I had adult onset stills. I'd always asked was it normal to have this amount of pain / lack of response to medication and was told some people are hard to treat.

For two years I've had a weird rash that comes and goes and a sore throat. Finally someone put all the bits together and said it might be AOSD.

Now I'm on even more steroids and a different biologic.

In your case I'd see if you can speak to the rheumatology person and ask could it be a rare thing or is there a chance it's something different. I'm no doctor, I am a veterinarian, I've been on this forum for quite a few years. Not heard of anyone having similar issues to you... especially as your young.

I understand how you just start thinking I'm never going to be better and I hope it doesn't take six years for you but I do know no one in your family thinks you're a burden, they love you and want to help you. (They might mess up the trying to help if they are like my family but still.).

Hope this helps sorry if my first reply offended. Fingers crossed and a few prayers.

Keep us updated.

[MaryinFL in reply to wilbertjellyfish]

I hope it is not AOSD. That's even worse than RA. Is there a test for that or do they just assume going by symptoms?

It seems we have a lot in common. I have five children, and six (soon to be seven) grandchildren. My children are all married and have careers and children of their own, and live 1000+ miles away from me. My youngest boy is the only one who lives at home with us. My in-laws are still alive and have a 7000 acre cattle ranch. My husband hates anything to do with farming. He's a database programmer. Nice guy but he was born without the nurturing gene, as well as the housework, cooking, and laundry genes. I could die on the floor surrounded by filth and he wouldn't notice until he got hungry and came looking for me.

I appreciate the fingers crossed and prayers. I send them back at you.

[smilelines in reply to MaryinFL]

I was reading that dmards don’t work on enthetis ( not sure of the spelling). Maybe this is true. It wasn’t until I went on biologics that my rings fit me and my hands felt better. For years they didn’t. Something has to change for you. I hope you can now qualify for biologics. I am on leflunimide and biologics but want off the leflunimide so my liver can heal. I know that once off leflunimide I will no longer need all the blood tests to monitor kidney and liver function. Good luck!

[Oztrax]

hi, I have been on leflunomide for over 10 years, interspersed with methotrexate and sulphasalyzin for PA,

My liver enzymes level doubled to 90 earlier this year, had a break from Leflunomide which I regretted as it took months for it to start working again.

How high are your ALT levels?

If they are elevated you have to avoid alcohol totally, and look atvdiet changes as well. I didn’t have alcohol for over 6 months, it’s like adding fuel to a fire.

My rheumatologist wasn’t worried about enzymes levels at twice normal levels, he said it would have to be 3 times normal before I should stop.

ATM 20 mg Leflunomide once daily and 1 sulfasalyzin seems to work.

If I take 2 sufasalyzins avday I start to get fatigued

Regards

Dale C

[MaryinFL in reply to Oztrax]

ALT is 85. My normal, baseline ALT level is 12.

I had a scan a few months ago to keep track of nodules. I had been on 5 MG Leflunomide for 2 months at that time. ALT was slightly elevated to 16 and liver looked good. I was put on 10 MG Leflunomide in November because I had very high inflammation markers. It did not do much for the inflammation but gave my ALT a big boost. Sulfasalazine raised my ALT to 57 so I definitely can't take that either.

I don't drink at all. My husband has NAFLD so we've been following a liver healthy diet for years, which only needs minor modification for kidney and heart health.

[Oztrax]

ALT levels will increase on any of these drugs, say from 30 to 50.this is normal but when mine doubled I started having problems. Read up on liver disease as it’s good to be educated. My kidneys were normal, I had ultrasound and scans of kidneys, liver and abdomen.

To check your liver properly u need a special ultrasound that measures how stiff it is. This is the same test they use for Cirrhosis .

Mine came back at 3 which is normal, 5 or more moving to cirrhotic liver which isn’t necessarily caused by alcohol, eg NAFLD.

I am also type 2 diabetes and nearly 60 years old, some some metabolic syndrome.

I lost nearly 10 kgs in weight, 92 kgs down to 82 kgs. THis makes a huge difference to your liver, and is what my liver specialist advised.

[MaryinFL in reply to Oztrax]

Very familiar. My husband was diagnosed with NAFLD over 10 years ago. We went on a liver healthy diet back then and his pain and swelling cleared up within 6 months and tests came back normal. He had his gallbladder removed last year as it was so full of sludge and gallstones it no longer functioned at all. During surgery the surgeon looked at his liver and said it looked normal. So he has completely recovered but if we aren't on top of our health issues - and that includes diet and exercise - then they can raise their ugly heads again.