Shame

[Fay A.]

Elaine,

I am on Neurontin, too, but I have been put on a gradually increasing dose and was instructed by my PCP NOT to increase the meds unless he ordered it. I think that because I have kidney disease I have higher serum levels of this drug.

http://www.nlm.nih.gov/medlineplus/drug ... 02732.html

If nothing else please call a Pharmacist and ask his/her opinion about taking more than prescribed.

Glad you had a least a night of relief. I, too, live with the extensive burning pain you've described so well.

[Elaine]

Fay,

What is the cause of your burning pain? Just curious, since I am trying to figure out what is for sure causing mine.

I am pretty certain that my HPOA is causing mine--but interestingly enough, I have had to be the one who has told both of my PCPs, the nuerologist and the ex-onc that this is the case--even going so far as to print off articles from medical journals for them since they only think it causes arthritis like symptoms.

I don't think the nuerologist is convinced that I am right as I see he told her to order a B12 test, glucose test and heavy metal poisoning test--apparently to find out what is causing this nueropathy, when it is the HPOA that is causing it AND the buring pain.

I got so angry about this that I called the case manager and told her I don't understand how an hour researching on the Internet could give me the knowldege of what tests I need and can't seem to get from these Drs.

Maybe that sounds arrogant, but it's just mind boggling that I have a condition that between 8 and 12 per cent of lc patients have, and NO ONE seems to know diddly about it--or care enough to find out.

The first Onc put me on 100 mg Nuerontin twice a day for the pain--when that obviously would not be enough. When I told him it wasn't working, he didn't even bother to up the dose--for what reason, I don't know. Since I had that pain intermittantly anyway--then--I just didn't bother. Now the HPOA is effecting more and more bones, so the pain taking over more and more body areas including my skull and face bones-- I guess that is what is happening. But I do know there is no way I am going to get an answer from any Dr. that I have.

I emailed a Dr in Mexico who has written widely on it. Earlier I emailed him and he responded-- mailing me articles he wrote that I had no access to. So I am hoping he will respond this time.

There are MANY UNKOWNS about this condition, to be sure, but for them NOT to know the known things seems awful to me and indicative of the concern lc patients get from Drs.

Anyway, maybe I am wrong and this burning pain is not HPOA related if you are also having it Fay. Or maybe you have HPOA and your Drs havent figured that out.

Thank the lord for this board where we can find out what others are going through, which can help us find the answers that we need.

elaine

[kimblanchard]

Elaine, I'm not really familiar with your case but just a couple thoughts. Have you been receiving Zometa or Aredia? Those are the best treatments for HPOA pain, will often get the pain under control quite rapidly. I must admit that I've not seen neuropathic pain as part of that syndrome but that doesn't mean it can't happen. Also, why have they not given you any stronger pain medicine? Neurontin is usually used as an adjunctive pain medicine and can take a while to "kick in". Its usually given in combination with a narcotic pain med like oxycodone or hydrocodone. But again, I don't know the details of your case at all, is there some reason they are not giving you anything stronger?

[Elaine]

Dr Joe

Oddly enough, I just got an email from the Dr. in Mexico who also did not know about parathesias being connected to HPOA. I am going to send him the two small references I have found to it.

He is really interested in that because he wrote a paper on the overlap between POEMS syndrome and HPOA. One of the main features of POEMS syndrome is nueropathy--present in nearly 100 per cent of cases. He even asked me if I was sure I have HPOA and not POEMS.

To be frank, I am not sure of anything, anymore.

As for Zometa, I think that is what I need to do also. This higher dose of Nuerontin did seem to work, and I have no other pain except a minor chest thing going on and of course the arthralgias--so that may be why I was not offered anything else.

I am still wishing for debulking, but my recent xray (can't seem to get a darn cat scan) showed no progression of the lung mass. Almost unchanged from I think the April xray, which also showed little progression from the late Jan one. That seems to have puzzled my Dr. I am significantly more SOB, however. Something is amiss.

I was first put on 200 mg of celebrex which I tolerated. I recently started taking 400 mg and I have had lots of nausea and regurgitation from it. I wasnt certain the celebrex was causing it, but when I went off Celebrex, the nausea lessoned, and the regurgitation went away. There is no way I can see that I can tolerate 800 mg like I was trying to get to.

Thanks for replying.

elaine