So I have an auto immune disease that is attacking my kidneys. The drug treatment is really kicking my ass, I hurt everywhere, every joint, every muscle. I can barely move, can't really bend enough to even put on socks.
My kidney dr told me to see the Primary care physician for help managing the pain, the kidney docs aren't permitted to prescribe much of anything that isn't directly related to the disease treatment. So yesterday I spent $60 on a round trip Uber to the clinic, my legs hurt too bad to work the clutch on that long a trip.

Saw the nurse, discussed options like maybe a muscle relaxer. Waited for 3 hours to see the doc, then the doc refused to see me, sent the nurse out to tell me that she would not prescribe anything because she was afraid of hurting my kidneys. She wouldn't even renew prescriptions that were previously issued by my kidney dr. I have no idea what I'm supposed to do now. I'm pretty much non-functional, can barely move.

I do have a call into my kidney dr, waiting for a call back.

In the meantime I'm going to see my private (non-VA) doc to see if she can help with something. I'm not necessarily looking for opiates or pain meds, the nurse at the VA suggested muscle relaxers. That might work just fine and I'm sure willing to give it a shot.

It thoroughly pissed me off that I spend $60 on Uber and 3 hours waiting and the doc wouldn't even talk to me.

I thought most VA's offered transportation?

See if they have a pain management specialist or get a referral to one.

My experience with the VA has been very good. The specialist I saw was in constant contact with my primary care doc and they worked in tandem.

I don't know what auto immune disease you have but I would go to the Life Extension Foundation and do a search for things that would help like what food or nutritional supplements to take.

http://www.lifeextension.com/

Supposedly they do offer transportation, I haven't checked into it. Don't mind spending the money on Uber, except when it's a completely wasted trip.

I'm trying to get into the pain managment at the VA, but nothing there moves fast.

I have membranous nephropathy. I've done all the research, there's no supplements or anything that will help me.

The pain is all coming from the "medicines" they have me taking. 6 month program, alternating months of super high dose steroids and super high dose chemo, with a shopping list of supporting drugs. It's the side effects that are killing me, I can barely move right now. Only half way through the treatment and it scares me that if I'm this tore up half way through, what the hell kind of shape I'll be in at 6 months.

Went and saw my private Gen. Practitioner today, she prescribed a muscle relaxer, hopefully that'll help.

Most of the people at the VA are great, but their policies and rules make everything difficult, and it takes soooo long to get an appt. It's impossible to get in to see anyone if you really need to see someone now.

Do you have health insurance so that you can get care outside of the VA system? It seems as if the physicians are not working together effectively to manage your care. There should be a physician quarterbacking your medical care for you, and coordinating the treatment.

I'd rather die by the side of the road than trust the VA to do anything for me, medical care-wise.

I can get free everything from the VA but do it all on civie insurance that I pay for.

You have to realize that some doctors do not keep up to date on new treatments, etc.

CoEnzyme Q10 is one supplement that is beneficial to your kidneys. Also tocotrienols are good for inflammation.

I do not have private insurance.

I did go see my private GP yesterday, she prescribed a muscle relaxer. Said they would normally refer me to someone that specializes in pain management. The muscle relaxers help a bit, but not enough.

I've done a shitload of research on this disease (membranous nephropathy) and there is no better treatment out there than what I'm on now. There's a group in Australia that is making promising strides in gene therapy for it, but they're a couple years away from having anything that's market ready.

I finally got through this morning to the nurse/admin for the head nephrologist at the VA hospital. He's really good and really cares about the patients, so just waiting on a call back. If nothing else, I'll do a walk-in to the pain management clinic next Tuesday when I have my next appt there.

Sorry to hear that Kadin.
I hope you turn the corner soon and start feeling normal again.

Thanks. Got 3 more months of this to go through. I'll get through it, there's really no other option except to sit at home until I die of kidney failure.

The "treatment" seems worse than the disease, but without the treatment I'll lose my kidneys.

The side effects just really suck. On my steroid months I take 120mg of prednisone daily, normal dose would be 10-15. On chemo months, I take 200mg of cyclophosphomide, typical dose for cancer patient would be 15-25 max. So the side effects are just that much worse.

I've lost over half my hair, will probably be completely bald at the end. No longer have any chest hair at all, no lower leg hair, and even my facial hair is falling out and what's left isn't growing. I haven't trimmed my beard in over 2 months. LOL But believe it or not, I'd rather take chemo than the steroids, that is some really evil stuff.

quote:

Originally posted by Kadin:
Thanks. Got 3 more months of this to go through. I'll get through it, there's really no other option except to sit at home until I die of kidney failure.

The "treatment" seems worse than the disease, but without the treatment I'll lose my kidneys.

The side effects just really suck. On my steroid months I take 120mg of prednisone daily, normal dose would be 10-15. On chemo months, I take 200mg of cyclophosphomide, typical dose for cancer patient would be 15-25 max. So the side effects are just that much worse.

I've lost over half my hair, will probably be completely bald at the end. No longer have any chest hair at all, no lower leg hair, and even my facial hair is falling out and what's left isn't growing. I haven't trimmed my beard in over 2 months. LOL But believe it or not, I'd rather take chemo than the steroids, that is some really evil stuff.

Come on Kadin, you how I like ya smooth.
Wait until I come over next.....

I finally got through this morning to the nurse/admin for the head nephrologist at the VA hospital. He's really good and really cares about the patients, so just waiting on a call back. QUOTE FROM KADIN
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That sounds like a good plan. You want to clear your meds through him with the autoimmune disease that you have. I suspect he will have something to offer as far as pain management is concerned. Be persistent and nice. You would be surprised how seldom Doctors hear a thank you for seeing me today. It makes a difference. Sounds like you have a good nephrologist.

This message has been edited. Last edited by: ZSMICHAEL,

quote:

Originally posted by ZSMICHAEL:
He's really good and really cares about the patients,

Doubtful.

If you are alive the VA has to pay for your care.

If you die they buy a $200 headstone and are done with you.

Think about it.

quote:

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That sounds like a good plan. You want to clear your meds through him with the autoimmune disease that you have. I suspect he will have something to offer as far as pain management is concerned. Be persistent and nice. You would be surprised how seldom Doctors hear a thank you for seeing me today. It makes a difference. Sounds like you have a good nephrologist.

There are actually 3-4 nephrologists I see, the one I'm trying to get in contact with is the head of the dept. I met him several times. In fact he returned a call to me at 9pm when this whole thing was started. He didn't know me, hadn't met me, but still called me back. I suspect the only reason I haven't heard from him is that he's not getting the messages. I've met and talked to him several times when I was an inpatient and was always really impressed with him. 99% of all the people at at the VA are good people and really seem to care, the only issues I have is the stupid policies and regulations they have to follow that make things more difficult than they should be.

I am always completely honest with them, I tell them everything, whether I think it has a bearing on the disease/treatment or not. They're the pros, they can decide whats relevant or not.

And I'm always as nice as can be to all the docs and nurses. They're the last ones I want to piss off! LOL

quote:

There are actually 3-4 nephrologists I see, the one I'm trying to get in contact with is the head of the dept. I met him several times. In fact he returned a call to me at 9pm when this whole thing was started. He didn't know me, hadn't met me, but still called me back. I suspect the only reason I haven't heard from him is that he's not getting the messages.

I suspect you are right about that. If you can find a good staff support person that should do the trick. I know that is hard at the VA because many of them failed the personality test to work at the DMV. They are really the key and have more pull and influence than the doctors. It sounds like the VA must be affiliated with a teaching hospital or have a huge kidney department to have that many nephrologists on staff.

I would also ask about trying something other than opiates as a first line treatment for pain. Hope things work out for you.

The VA hospital here is a teaching hospital.

The head nephrologist called me back last night. Suspects it's nerve pain and has prescribed me something for that.

I definitely prefer to avoid opiates if possible, most don't work for me except at super high doses. When I was in the hospital they told me I could have morphine whenever I needed it. I asked for it maybe 3-4 times and then stopped because it didn't help at all.

My new prescription should be here no later than Monday, hoping it'll help.

Your best bet is to get with a pain management office. I'm in no way discounting your pain but even with a legit medical issue a lot of physicians are starting to defer pain meds to pain management because we are under such high scrutiny for all the dependence on pain meds out there. Docs just don't want the liability. In reality your nephrologist should handle this. When a patient has cancer and is on chemo the oncologists prescribe pain and anti-nausea medications. Sorry you have to go through with this. You can blame every asshole drug seeker in an ER waiting room right now for making your life more difficult.

Have they tried Gabapentin or Lyrica?

quote:

The VA hospital here is a teaching hospital.

The head nephrologist called me back last night. Suspects it's nerve pain and has prescribed me something for that.

It is good that it is a teaching hospital. I suspect Lyrica, Neurontin or Cymbalta is the choice. It is much more effective than opiates for nerve pain. It takes a while to work and may dull your thinking a bit. Hope you get some relief soon.

As we, as a group, tend to be outdoors oriented folks, don't overlook tick borne diseases as the source of the problem. There are several versions of Lyme that have been cropping up recently, some are not ever testable. You won't be seeing a red rash or circle either. I'm talkin Texas. I'd research that, and make sure that they have tested for all of them.

I've got lifetime care from the VA if I wanted it, but I don't trust them and haven't been back after my initial stay, preferring Kaiser to fix me up when needed. It's important that you research everything you can so as to be your own advocate. Doctors can be either awesome resourses or total jackasses who will blow you off depending on the day or even the time of day.

https://bionews-tx.com/news/20...-around-study-finds/

And this one will really open your eyes: http://whale.to/m/mycoplasma5.html


Good luck!

I'm not sure what he prescribed, I can't remember what he told me, and I don't have it yet.

And who cares if it makes me dizzy or fuzzy, I'm already only about halfway coherent due to all the other meds I take. One more with those side effects can hardly make things any worse.

When I go in for my next appt I will definitely seek a referral to the pain clinic.