Tyleonol is generally ok with PKD but ALWAYS chwck with your nephrologist

I sometimes wonder about this, as I have joint pain and have started having swelling, stiffness and pain in some of my finger joints. My father has huge, very stiff and painful finger and wrist joints but has no diagnosis. RH was raised as a possibility but for some reason (cost?) his GP decided against sending him for tests. His sister has RH.
He just takes paracetemol, though it doesn't help much. He didn't react well to codeine and has a history of stomach ulcers (no PKD) so can't take NSAIDs. You will have to consult carefully with your doctors regarding pain management. He has found compression gloves helpful in relieving some symptoms, so they might be worth a try.

Chewitt

Thanks for the replies, it is a real worry for me, paracetamol doesn't touch the pain, codine and tramadol make me sick, thankfully my kidney function is still pretty good, but I am only 44 so I would like to keep them ticking along as long as possible, my mum has had a transplant so I know how this can deteriorate without any help from toxic drugs. Oh well lots of consultation needed between. Rheumatologist and nephrologist needed by the looks of things

Have they also checked for gout, which can affect any joint and cause inflammation?

Hi Billylyne5,

I feel so badly for you and have a sense of what you are going through!

Last year for a stretch of about 3-4 months I started having severe joint pain in both hands (started at the base of my thumbs, and I couldn't open jars or turn doors without wincing). It then spread to become severe and debilitating pain in ankles, knees, elbows and in my neck, gradually making it impossible to turn my head. The pain was horrible and seemed to come from inside my bones. I tried to keep working through it but several days all I could do was just lay in bed and cry. I thought for sure it must be PKD related but my neph said no..he prescribed tramadol which barely touched it, and referred me to a rheumatologist. But it took me 6 months to be seen and by then my symptoms had quieted down -- although I still had (and still have) constant joint pain in my hands and ankles now that I never had before. I tested positive for an autoimmune disease but the rheumy wouldn't diagnose RA because of no swelling, I'm thin and stiil in good shape for my age, 48.. His words to me were "If you have RA, it will be very difficult to treat you because the most effective medications (like methotrexate) to prevent joint destruction and keep flares in remission) are toxic to the kidneys...you don't want to have it." He tried to convince me it was stress-related, but I think he just didn't want to deal with me. I never went back to him, and since then I have just tried to adjust to this constant joint pain as another thing to live with. I still wonder whether I had a severe bout of joint inflammation related to my kidneys -- or whether it was an RA flare. (?)
Anyway -- sorry to tell my long story, but I just really wonder about the possible connection between PKD and RA or other autoimmune diseases, or even if there is just a connection between PKD and problematic joint/bone pain. i see from the thread of replies here that we are not alone in suffering with this. I wish I had some answers for you about pain medication, vicodin or oxycodone was all that ever worked for me, but doctors are very slow to prescribe those... virtually everything can have some effect on the kidneys.
I feel your pain and worry and hope for the best for you, in your diagnosis, and also that your doctors are attentive and responsive to you, and work together to figure out what's going on. Hang in there, and I hope it helps to know there are others going through similar things. I think there is still much unknown about this disease and its effects on the whole body.

I am still trying to get a correct diagonosis for the joint problems, my nephrologist says not linked to PKD.
It is such a difficult thing to manage and the medication I was on for management of the small fibre neuropathy I have (also autoimmune related) has caused liver inflamation so now I can't take that.
The rheumatologist has said there is nothing she can do until I get a postive blood test and at the moment they are equivocal so I am I limbo which is not great.

OMGosh!!! Yes... I think this is part of this disease.. If so many of us are going through this joint pain, it must be... finger and toe joints, knees elbows... I say the closer it gets to the tips of my toes and fingers the worse it gets... !!! I was test for RA and nothing- Gout nothing... But.. I did find on the internet some remedies and they have worked for me... Fresh squeezed lemon juice with a large glass of water each and every morning before I eat and often if I am out for dinner lemon water... NO caffeine...None.. Even a small Cola brings it on. I miss my coffee and tea but I don't miss that burning pain!.. I have read that an Alkaline diet is very helpful for this disease and the same with joint pain.. It seems to work for me!!! Best of luck Billylyn5!!!

I use a low level laser for my arthritis and diet. Diet really makes a difference. I got mine from my Dr. who was instrumental in getting this treatment legalized. It's made by beurer.