Ibuprofen

[Vonnie10]

Hi I have 3b ckd & I have rhematoid I was told not to take anti inflammatory medicine by my clinic but in a terrible flair up had steriid shot not touching it spoke with cns from my rhematoid today she said I'm OK for a short time one week and no more any thoughts on this it's helping my pain loads ?

[Catpuss66]

definitely no on the NSAID that includes ibruprofen, I have sjogrens with ckd & swollen knees I take cocodamol, if it is really bad I apply volterol topical as you are allowed this with ckd I also use TENS. The other thing to ask for is hydrotherapy your rheumatologist can refer you. Really helped with lots of young women with rheumatoid there.

[Countymusic-JB]

Your not on your own Re anti inflammatories and CKD. Because of long term use of Naproxin I was diagnosed with CKD stage 3 in 2020. I’ve also gone through hell with flair ups having had to stop the anti inflammatories. I now wear a patch to give pain relief and in addition paracetamol and when really bad liquids morphine as oral painkillers were causing a great deal of nausea and sickness.. I lost 4 stone during this period. I have been told I can use Voltarol gel because it’s not being ingested. Other than that it’s hot and cold compresses. My rheumatologist is putting me through various tests to see we’re we can go without creating more problems with my kidneys and will be working with my Renal consultant.. I believe I need to have more blood tests to keep an eye on the reaction on my kidneys.

Hope you get the help you need and will be interesting to hear other people’s experiences.

[Vonnie10 in reply to Countymusic-JB]

Whst dmward or biological drugs are you in for your RD?

[Countymusic-JB in reply to Vonnie10]

At present I’m going through all sorts of tests to decide which way my rheumatologist is going to go as regards to meds from her. On saying that my rheumatoid consultant is working with my Renal consultant which is important as the kidney condition is more of a silent killer where the arthritis is pain related and is very debilitating. I’ve been diagnosed with osteo arthritis since the 90’s and managed with anti inflammatories and painkillers but as soon as I was diagnosed with CKD 3-4 the ant inflammatories were stopped as I was told it was due to long term use of the anti inflammatories but the flair ups have been crazy with swollen hands, knees and many other areas screaming at me so my gp referred me to the rheumatologist December last year. Sorry I can’t give you any further advice. I am amazed that you have not been referred to a renal consultant so they can work together.

[Vonnie10 in reply to Countymusic-JB]

I'm sure your bloods must have been negative for RD osteo is wear and tear RD is a different ...people often get it mixed up it's not just pain related it effect lung and heart if not slowed down rd isnt controlled by pain relief its either biological drug s or dmwqrd drugs nope neither my gp or consultant have referred me on im. n the UK so maybe its different too you.

[Countymusic-JB in reply to Vonnie10]

You are correct in that my bloods did not show RD. However I was told by GP that this does not mean to say I don’t have some form of RD. Hence he referred me to the rheumatologist who then forwarded me to the Consultant who explained there are over an hundred types of Arthritis which I did not realise. Yes the Osteo has been an issue since early 1990’s as it shows up on all the x rays I've had over the years. The rheumatologist has put on her report autoimmune inflammatory and she is keeping me under her. I’m also in the UK so am surprised you are not under a consultant for your kidneys so they can work together.

[Vonnie10 in reply to Countymusic-JB]

No I'm not under any one for kidney hope I never do..I hope you don't need biological drugs for what ever arthritis you have... RD is controlled by dmward and biological drugs not really pain relief .as we need to get this disease under control slow it down before permanent damage is done to our bodys and organs im.on nrsa site on here and everyone is on these drugs for rhematoid or they would all be in hell probably wouldn't be able to mobilise or live any sort of normal life I know if I didn't have these life saving drugs my life would be hell.

[Hidden in reply to Countymusic-JB]

Hi Countymusic-JB. Many years ago, after ruining my gut/health with voltaren tablets and stopping its use for some years, I tried the voltaren gel when it became available/came onto the market. Immediately felt nauseaus. Took that to mean that I'm totally intolerant when it comes to Voltaren.

[Countymusic-JB in reply to Hidden]

Hi, are you in the Uk. When I mentioned Voltarol I only use sparing. Thank goodness it hasn’t brought any nausea symtems. I had enough of that and was narrowed down to the oral painkillers. But going back to the gel my GP and consultants are all ok with me using it when needed. Infact before I used it I checked it out with my gp and Renal consultant.

I hope you find something that gives you some relief.

[Hidden in reply to Countymusic-JB]

Thanks, Countymusic-JB. I have to use a heated pool (32deg) to act as an anti-inflammatory/pain killer.

Of course, you have to follow your GP & consultants re using Voltaren gel.

But I mentioned my experience with the topical version and it causing me a nausea reaction.

And I only used the topical version once and simply put a tiny patch on my forearm to test.

[Blackknight1989]

Sometimes life requires choices and if your pain or other conditions demand a treatment that is counter to kidney health then you must make a choice. A nurse from your rheumatologist’s office isn’t the best resource to ask about anti-inflammatory medication effects on your kidneys. Instead, you need to discuss all your medical conditions and treatments with the doctor that manages your kidney disease. My guess is no one including the doctors in your rheumatologist’s office have a clue about the effects any of the meds they use have on the kidneys, much less how to change the dose, or the type of meds given to a patient that has kidney disease. Therefore, you need to have a discussion with the doctor who treats your kidneys about your other conditions so they can help you decide whether or not you can take what your rheumatologist has recommended or if you need to find a different med/treatment. Too many meds can cause immediate kidney damage especially to those of us who have kidney damage already and most doctors are clueless about the effects of medications on the kidneys. Be safe and find out from your kidney doc what’s the best option or go without. I don’t have a clue about rheumatoid arthritis but I have osteoarthritis with nearly 20 surgeries including 2 total knees, 2 total hips and 2 ankle fusions (and need both shoulders replaced, lower and cervical back surgery etc) in the last 10 years so I know about pain in multiple joints and the accompanying muscle pain that goes with it. Find a pain reliever and anti-inflammatory that is safe for your kidneys with the doc who treats your kidneys as my guess is no one in your arthritis docs office even knows you have kidney issues and wouldn’t know the affects of what they normally use medically to treat you, unfortunately. Most of the time it’s up to us as patients to know those things because the docs don’t 95% of the time. Just my observations and experiences but seem to be shared by many others.

[Vonnie10 in reply to Blackknight1989]

The nurse at clinic are are good the same nurse rang me last year after she seen my function told me no more I have not been referred to renal.

[Darlenia in reply to Blackknight1989]

It's likely the other way around - the doctors in the rheumatology office are probably exquisitely aware of what is happening to Vonnie10. RA is very different from osteoarthritis. RA, sadly, is an autoimmune disease which can shorten lifespan. It often targets and forms tissue around pressure points - bending and taking out perfectly good joints and bones in one's skeleton and its relentless method of operation can also target organs (eyes, skin, heart, etc.) affecting their function as well. Some other disorders in this field are PsA, Lupus, Sjogren's, etc. (Alopecia, too, is another, better known, autoimmune condition.) A rheumatologist, who can be exceptionally hard to find, is the specialist in charge of these disorders and will use meds, often biologics, to limit the disease's damaging and sometimes lethal attacks. When needed, a rheumatologist will also bring in or send a patient to other professionals. I have a son with psoriatic arthritis, a daughter with alopecia, and I also had a friend with lupus who passed away at a relatively young age. If science and technology could unlock the key to these autoimmune conditions, I sense a lot of other diseases would go away too. I pray that happens soon - very soon.

[Blackknight1989 in reply to Darlenia]

I agree. I am familiar with both though admittedly more with OA. Perhaps my familiarity led to my less than structured previous remarks. Nonetheless I appreciate the correction.

[Darlenia in reply to Blackknight1989]

Thank you... I was simply adding-on... It's just heartbreaking to see to all these things that can tear people down. Sending heartfelt prayers to all that science continue on until solutions are found.

[Bassetmommer]

HI Vonnie,

I know it is an easy fix to take ibuprofen and it works magic. But don't. Hard choice. The mechanism for ibuprofen destroys kidney function and there's no going back. And maybe a week is not much, but you do not know how much damage could be done in that week. At 3b, one week might be too much.

I have psoriatic arthritis. I spent 3 years trying to tell the doctors that something was wrong and they kept saying lose weight. But I was PRESCRIBED 1800mg daily of ibuprofen to manage my pain. By the time I was almost bed ridden and my hands were curled up, the damage to my kidneys was done. Then they put me on more drugs that further caused damage, but no one said anything until the lab came back with me at stage3b.

Get yourself to a good rheumatologist. There are safe ways to deal with RA that they can work it out for you. Unfortunately, autoimmune diseases such as RA and PsA and CKD are quite prevalent.

[Vonnie10 in reply to Bassetmommer]

Hi That is so shocking 3 years of that and more drugs on top im shocked your gp is bad and a disgrace for not getting your sorted as soon as my gp seen my hands and wrist I was sent for bloods and a urgent appointment at rheumatology my rheumatoid doctor is great and really saved mobility I wouldn't even be waking or doing anything if it wasn't for her for the most part as it controlled just un lucky I had a bad flair up. You need either dmward or biological drugs to get the disease under control.

[Bassetmommer in reply to Vonnie10]

oh Vonnie, If you have ever lived in the world of Fat people, you would truly know the absolute disgrimination of people of size. Clinicians and providers cannot see past the body and so everything medical is caused by obesity. I actually made my Nephrologist take out of her notes that obesity was a cause of my CKD.

[Vonnie10]

Thanks so much ..I don't have a consultant for my kidneys it regular blood watch wait & see type of thing. I have a good rhematologist im on toclizumab weekky injection for my RD i have regular fbc bloods done but getting conflicting info one cns at my rhematoid clinic one said no more anty inflammatory drugs at all. she rang me 18 months ago after a recent blood came.back showing my kidney.function had dropped a touch more. the one I spoke with recently this week says short term is OK. When I have a flair up it physically stops me doing anything with my daily activities every single thing is so hard nightmare.pain is bad. Im.hoping the kenlog steriod shot is kicking in.

[RickHow]

My doctors (oncologist, cardiologist, primary, kidney, neurologist) all tell me that occasional short term use of ibuprofen is not going to hurt. Key word short term. Just as you were told, that one week won't hurt. I too am 3b. This is not to say that ibuprofen regular or frequent use is okay. It is not. But lets say for 2 days you have terrible pain that is only better when you take IBU, then I would certainly do it and no expect any CKD changes. I have terrible back pain sometimes and perhaps once or twice a month take a couple of IBU for relief. All with my doctors okay and all with no change in my kidney function. But we are all different.

[Blackknight1989]

I’m not a doctor and don’t work in the medical field. HOWEVER, if you have bloodwork indicating that you suffer from, as you indicate yourself, “3b ckd” and only allow your Rheumatologist to monitor your kidneys while simultaneously injecting you with poison that is in your own words causing your kidney function to worsen. In your own words…“18 months ago after a recent blood came.back showing my kidney.function had dropped a touch more.” You minimize it by saying “a touch” and without lab values or further information it is impossible to know how bad the drop may be. However, I will note that you say, “regular fbc bloods done but getting conflicting info one cns at my rhematoid clinic one said no more anty inflammatory drugs at all. she rang me 18 months ago after a recent blood came.back showing my kidney.function had dropped a touch more. the one I spoke this week says short term is OK.

You yourself say “kidney function dropped a touch more,” AND you are getting conflicting info from your mutiple rhematologists and you are getting inconsistent advice about whether you should continue injections. YOU CANT REPLACE OR GAIN ADDITIONAL KIDNEY FUNCTION AS ONCE YOU KILL KIDNEY NEPHRONS THEY DO NOT REGENERATE. Every time you get an injection, you are damaging your kidneys.

Why do you think this happened:

“conflicting info one cns at my rhematoid clinic one said no more anty inflammatory drugs at all. she rang me 18 months ago after a recent blood came.back showing my kidney.function had dropped a touch more”

That is enough to be concerned about. IMHO you need a good doctor to truly monitor and treat (yes treat as there are effective treatments now for those of us with CKD) your kidneys now as your current doctors have reached their limited ceiling of being able to effectively monitor your multiple conditions. In my opinion if you do not add a doctor specific to you kidney issues, you are missing out on treatments you may want/need and advice that would preserve kidney function. With the advent of multiple treatment modalities and ongoing research managing kidney disease is more than just adjusting diet and reducing salt. You have a dangerous issue with one clinic saying NO MORE and another clinic saying your okay on the heels of a lab from another rhematoid clinic SAYING THEY WONT INJECT YOU BECAUSE YOUR LAB VALUES CONCERNED THEM. That in of itself should be enough to get you to a GP or specialist to have a complete analysis of your kidney damage and how much you continue to damage them with the injections. I can almost promise you a good doctor who understands the kidney damage you most likely have will tell you to stop the injections. I, of course, can’t make that observation but I can make an educated guess that with labs showing your kidney function is at a level once clinic wants to stop all injections yet you continue with another, that injection is poison to your kidneys. I’d post the links but the info is readily available via a google search how bad the anti-inflammatory drugs are for you. With the limited information you provide it is time you go see a doctor who can adequately assess and treat your issues WITHOUT the steroid injections otherwise you run the risk of significant kidney damage. Go get help for your kidney issues from a proper doctor or you will cost yourself some function.

[Vonnie10 in reply to Blackknight1989]

Wow your reply is too much...I never once said toclizumab (Poison) as you say caused my ckd or steroids .. My consultant rheumatologist & my general practitioner have not referred to renal and I hope they never do hopefully ckd stay were it is now I think my rheumatology doctor wouldn't be happy if I stopped my life time drug regime for RD im.sure it would save the nhs around £3700 per month because its just posion and I don't really need it ??? but yet here im am forcing my doctor to give me posion because really I don't need it ??? ..I wouldn't be able to walk or move. RD doesn't only effect joints it's effect other organs if left untreated and its not slowed down hence why she put me on tocilizumab so I could have a life I don't think you fully understand how bad it is.

[Bassetmommer in reply to Vonnie10]

To Blacknight and Vonnie,

Vonnie is correct.... without the poison to manage RA, you might as well go to bed for life and just die. I too am on poison. This poison has changed through the years, some of it very bad and I know damaged my body more. BUt without the poison, I would have been bed ridden. Without the poison, my kidneys and heart would have given out completely and sooner because what this poison stops the inflammation that is attacking my body, my whole body. They already discovered ischemia in the heart.

Yes, is it a trade off? Of course. But here is something I discovered that no doctor told me. There is a huge connection to what I have, psoriatic arthritis and psoriasis, with RENAL FAILURE. So spin the wheel and play the game. Injection or renal failure. I am going to have it no matter what.

Please don't judge and try to understand what others are going through.

[Vonnie10 in reply to Bassetmommer]

Im sorry about your ischemic heart disese . its a worry for us all with raging inflammation going on in our bodies.. i was so shocked at blacknights reply thankfully some understand and get it .. I just don't get why he said what he said and I'm forcing my consultant to give me toclizumab (Posion ) as he said plus a one off steriod too.settle this recent flair up down i.hate steriods I have horrible side effect bad anxiety from it for 3 weeks make me feel crap . But needs must when your in so much pain and can't even make a cup of coffee for yourself or do the basic day to day stuff due to a massive flair up . Im.sure the nhs would rather not give a drug regime costing £3600 per month if I didn't need it im.forcing them.too I highly doubt it.

[Bassetmommer in reply to Vonnie10]

You do what you have to do. I was put on prednisone and it made me very manic. I started painting my kitchen because I had so much energy, but then that changed. I try to stay away from steroids. I am now on an infusion which costs my insurance over $11,000.00 a month. I had one shot that was $21,000.00 a month. It was the best, Stelara, but when I went on Medicare, they wouldn't pay for my self-administered shot, but they'll pay for a team to do an infusion. I hate insurance companies.

[Vonnie10 in reply to Bassetmommer]

Isnt it disgusting how much ed drygs cost so thankful for our nhs I hate steriod awful drug but you have to out way it it's either bad pain not been able to manage basic day to day stuff upside is when this cold weather goes my garden will look fabulous can't do anything when I first have it them after a while I get massive energy surge in my body is off the scale literally feel super human doc gave me 10 lorazapam to get me over initial side effect I take half when required but hate steroids delay having it I only have it when rd is unmanageable.

[Blackknight1989 in reply to Vonnie10]

I believe you misunderstood or I mistyped (most likely), but my INTENTION was never to convey that it was somehow your fault or that your docs were wrong. Instead I was just highlighting what was important to my next comment (typical narcissist..lol).

Look I get the pain issue. While I DO NOT have RA I DO have OA so badly that in the last 15 years I’ve had 20 plus surgeries culminating with 2 TKA’s, 2 total hips and 2 ankle fusions. I’ve determined that I’ll have no more surgeries unless I am unable to push the wheelchair(though I need 2 total shoulders, and 2 total ankle REPLACEMENTS). I’ve given up on ever actually walking again but can’t seem to get to the point where I can give up mobility totally.

I have had my issues over 30 years with the CKD diagnosed in 96 then a couple weeks later AKI. Therefore, I know the benefits of NSAIDS and (like you) hate them and their side effects. I completely understand your comments of “spin the wheel and play the game” as I like you deal with that weekly (daily?)

Additionally I never meant to insinuate you were forcing your docs to do anything (can any of us really force a doctor to do anything more than once…lol!)

I believe you’d be surprised how well I “understand and get it” as I proceed into my 30 plus year of dealing with our issues. There is no doubt (at least for me) that the “treatment” we are discussing benefits me the most pain wise however, with an eGFR ranging from 9-13 I don’t (or can’t) have the luxury of the treatment that benefits my issues the most. So, I face 4 more surgeries over the next 2 years and quite frankly if I can push those off for a few more I will not have the surgeries. At 57 currently, I may have another 10 years but that’s most likely the limit. Thus, no need for two more surgeries to give me an even 25…lol

[Vonnie10 in reply to Blackknight1989]

Fair enough im sorry you've had it's so hard...a lot harder than me . Take care

[Darlenia]

Just a little personal comment here - it's the red hot inflammation caused by autoimmune disorders themselves that lead to organ damage. Of course, there are lots of "anti inflammatory meds" of all types and their side effects vary. There are some that are harder in kidneys, but gentler on the liver. Then, there are those that are easier on the liver, but can affect the kidneys. And so on. As one wise neighbor told me years ago, most all meds have a little poison to them, none are perfect. In our situation, my son has severe psoriatic arthritis. It nearly took out his hips and feet until he was put on "biologics" which instantly stopped the disease from ravaging his body further. His organs at the time were also being affected by the flareups - his labs were shaky. There is a lot of back-n-forth regarding "which doctor should you see". For any autoimmune situation, my personal advice is to definitely stick with your rheumatologist. S/he is actually looking at you from the top of your head to your toes. They're often hard to find so you're beyond fortunate to have one. Then, make sure that information is shared with your team so they can advise you regarding their unique specialties. Perhaps start with your primary if you want guidance in this area - who knows, maybe your heart needs looking after first. Above all, keep in mind that doing nothing with most autoimmune conditions can, in fact, shorten one's life span significantly. Please do not treat any condition that produces inflammation lightly. Blessings to all.

[Vonnie10 in reply to Darlenia]

Hi darl yes all drugs have effects in our body but we need to outway daily life its all a abalancing act ..my rheumatoid doctor is in the ball I have regular bloods & reviews scan and so on done at clinic & at my general practice is very good infact I had a eview at my GPS yday bloods done and & ecg no changes on my ecg from my last one .

[Darlenia in reply to Vonnie10]

Happy to hear you have confidence in your medical team. And you're so right about medications being a balancing act. I watched my very healthy son crumple away in front of me from his condition. I'm so sorry you're facing an autoimmune situation too. Thankfully, my son is much better today. I think you will too with your team surrounding you.

[Vonnie10 in reply to Darlenia]

Sad isn't it thankfull for our doctors who are amazing at what they do. Glad yous son is doing well.

[Bassetmommer in reply to Darlenia]

Darlenia,

So sorry about your son having PsA. Its a really awful disease which when I was diagnosed, some doctors did not have a clue as to what it was. Because of the delay in getting diagnosed, I have permanent damage that won't get fixed ever. I know exactly what you and your son are going through. Do make sure they monitor his kidneys. Because as I said before, on my own research, discovered the connection between PsA, and renal disease. When, I was first diagnosed, it was my rheumatologist who found the CKD and referred me immediately to the Nephrologist I see.

verywellhealth.com/psoriati....

[Darlenia in reply to Bassetmommer]

Yes...I have two people in my life with health conditions that keeps me up at night sometimes - my hubby and my son. I'm old and quite healthy (no meds at all) and the unfairness of life strikes me often. Because his dad's situation went upside down with kidney failure, my son and his doctors are exquisitely aware of keeping eyes on the labs. I see autoimmune conditions, in of of themselves, prompting other conditions - diabetes, kidney health, cardiac health, liver health, and more. Those horrible inflammatory attacks seem to affect many things - not just bones but organs too - particularly if not treated. It took a couple of years of seeing all the wrong doctors (and near surgery for hips) for my son, only in his 30s, to get his diagnosis. He's on biologics right now, but his current prescription is starting to fail. Looking back, he was my child with the horrible diaper rashes, the flushing face, the quick sunburns, the rashes on his feet (a lot there), knees, and elbows, etc. I should have caught this a lot earlier. So many regrets. But we can only move forward - knowing more and doing better. My heart truly goes out to you - may you always have the strength to stay on top of things and live life well. Hugs.

[Vonnie10]

Its so very sad at a young age to go through all that seem so unfair at least they have you to watch over them I hope my biological isn't failing and this flair is a blip and nothing more it took 3 plus years of trial and error with other biological drugs to find this one and its been doing a great job lots of other drugs to try and new ones are always popping thankfully drugs are much better than 30 years ago were nothing much could be done people had terible poor prognosis then. lucky its different now it's just the wait time for them to kick in can be drawn out I hope your son is sorted out soon.