Hi Larry, I have used a pain clinic and sadly, they couldn't help me anymore than a regular GP. I was given every drug in the book, but at a reduced dosage. It didn't touch me. I asked why I couldn't take a regular dose and was told because my kidney function is too low, I am currently stage 3 boardering stage 4 and they refused to up my doseages at all. I wasted all that time running to a pain clinic for months. They finally sent me to a back surgeon to have one of those stimulators put in my back and I didn't bother going as I know too many people that have had it done with no good results. So here I sit an old woman in pain every day of my life. It seems that age plays a factor and your kidney function.

Good luck to you,
Norma....

I had my pain clinic visit. The doctor put me on Neurontin and a cream that is being sent to me (can't be filled by pharmacies?). I'll post what the cream is when I get it.

I'll post any results.

Has anyone taken this drug? I am taking the generic which is Gabapentin.

The cream is a compound. I like it much, much more than Lidoderm patches.

Here are the ingredients:
Ketoprofen 20%
Baclofen 2%
Cyclobenzaprine 2%
Gabapentin 6%
Lidocaine 2.5%
In Lipoderm

Larry,
Sorry the oral meds are making you so sleepy. The cream they've given you are very heavy on the NSAIDs. Ketoprofen may work great, but it's a very heavy duty NSAID (in fact the strongest one available) and the generic name for Toradol! Granted it works great for pain, but is VERY hard on the kidneys, even when absorbed through the skin. Bacloprofen is also an NSAID as well. I'm flabbergasted that a doctor would even consider prescribing a cream with NSAIDs for a renal patient. You will absorb the medication even though it's a cream (you need a large amount to cover the affected area) and it will impact your kidneys (alas in an adverse manner).

Your doctor means well, but you may want to discuss the fact you have KIDNEY DISEASE with him and have him reconsider what he's prescribing...unless you're at the point where getting the pain under contol is more important than retaining your renal function.

Norma,
The argument that you need a reduced dose is bogus. You need whatever dose is effective. Just because a book recommends a reduced dose doesn't mean that's the right dose for you; it just means that's a dose to START with. While age does play a factor in kidney function (it's one of the variables in all of the equations) there is no reason you should have to suffer because someone won't deviate from the starting dose of a medication. I am on far more than the recommended "starting" dose of pain medication for someone with a GFR of 25, but that's what it takes to control my pain (to a reasonable extent; my average pain level is 5 and I have 2 different forms of oral breakthrough pain medication to take when the pain gets severe). None of them are dosed for kidney patients, but I deal with that by not driving (I'm overly cautious and have a wonderful husband who will fill that role and more, plus my brother is visiting (long-term) and despite his PKD, has no pain and is also a great chauffer and a cook!).

FYI, I think I'm close to qualifying for that liver/kidney transplant now that my GFR has dropped to 25 and stayed there for 6 months. Need to contact Mayo Jacksonville to talk with them (my fabulous nephrologist just left the area (trigger massive sobbing)so I need to find a new doctor or start making 4-hour trips to see him. So there's now some light at the end of the pain tunnel...at least I hope there is!

Hugs to all,
Ruth

PS Larry, I wish I could send you some of my no-sedation "reaction" so pain meds wouldn't interfere with your work. If only it were that easy.... :)

Ruth, so wonderful to hear from you and thank you for all the good information. I'am on my way to a dr's. apt. this morning and I will tell her what you have said. Also great news that your kidney function has finally dropped low enough for you to have a duel transplant. Keep us informed on your journey ok? I will drop you a line and get you up to speed.

love as always,
Norma...

good? news that you may now be eligible for a dual transplant. strange how life works, what would otherwise be terrible news may work for you.
so good to hear from you. don't know how many times I said, "where is Ruth when we need her".

Getting pain under control is FAR more important to me than kidney function. In my mind, the worst of this won't be behind me until post transplant. Being delicate with my kidneys is only postponing the inevitable. Best case, my kidneys maybe have 4 years.

The Neurontin only slightly helped and on top of my other meds made it so I didn't feel it was safe for me to drive. My pain doctor is taking me off Neurontin and putting me on Topamax.

Any PKD patients out there taking Topamax for pain? Any luck?

The doctor also had me try trigger point injections. That did nothing for me.

I also start accupuncture. My first 4 sessions did nothing for me. However, the fifth one did! I had relief for 3 hours until I sat in an office chair for a few hours to do an expense report. :( those three hours were heavenly.

I have been going to a pain clinic for a year now and have had success. My neph did not know the right dose of meds to give me because the pain is so bad. The pain clinic has put me on hydromorphone contin 15mg 3 x day and hydromorphone dilaudid 6mg 2 x day. The Dr has said he knows my pain will get worse as my kidneys get larger and my function decreases. I have 28% function and at U/S in April each kidney was 23 cm. The pain is horrible to deal with each day. I have been off work for just over a year now. The worst part is that I feel that my life has been put on hold while I wait for my kidneys to fail, so I can get a transplant. I have a brother and 3 sisters all willing and waiting to donate. I consider myself very lucky in that respect. It may take some time to find the right pain meds for you, but be patient. You may also need to see different DR at the pain clinic to find one that understands PKD. Best of luck to you!!