Researching medical question

[lisalee]

I need some help in researching a medical question. I'm trying to find the latest research on the drug prednisone and adult kidney transplants. I want my doctor to reduce my dosage of prednisone because of the horrible side effects I am experiencing. He doesn't want to but isn't offering any concrete reasons why. He is correct when he points out that I have had my transplant for 17 years , with what is considered a low dosage and the kidney is having increasing difficulties, but I am tired of hearing the standard,"Because that is what we do for everyone." So does anyone have suggestions?

Thanks for your help.

Lisa

[paula]

Lisa,

If you are interested in reading the original reports of some of the most recent work, you can find titles, and sometimes the full articles at pubmed. If the entry is not directly linked to an pdf file, your library should be able to obtain the article for you. Many of these papers are very technical, and not very "lay-person" friendly; however, after all of these years, I'll bet that you are not an average "lay-person" with regard to transplant medicine. Maybe someone else can suggest a resource that is easier to read.

There are several ways to access pubmed, one of which is http://www.ncbi.nlm.nih.gov/. I searched with the terms prednisone and kidney transplant and these were my results:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=search&term=prednisone+and+kidney+transplant

Paula

[MinEaston]

Lisa;

I've used WebMd.com for some questions, and have found that their search engine pulls up not only consumer-friendly articles but also those that are a little more geared towards the medical community. Even so, those more technical documents aren't too bad. I work for a health care quality improvement agency so probably have more than the average person's understanding of medical terminology, however, as Paula said, you're not new to it either.

Good luck.

[clairea]

You might also try looking on medlineplus.gov. I have also found good information on websites from the Mayo Clinic and various teaching hospitals. If you know which universities/hospitals are doing a lot of this research, you might look on their websites as well.

I think someone on the boards either is/used to be a medical librarian, but I can't remember who. If you post a thread asking about that you would probably find them.

Claire

[sillybeans]

I've worked extensively with immunosuppressant agents and kidney transplant. Really, most individuals are not able to have prednisone withdrawn without risk of rejection. Most remain on 5 mg for the remainder of their lives, unless they are part of a specific clinical trial to undergo steroid withdrawal. A number of nephrologists take the position that maintaining the graft and avoiding rejection is the most important factor, and are unwilling to put the patient at potential risk for rejection or graft failure.

Every incidence of rejection makes the graft harder and harder to maintain. Organ loss makes subsequent transplant more and more difficult, as the immune system will remain in a heightened state.

Patients who are able to go off steroids are generally recipients of a well-matched, live donor kidney who take Prograf and Cellcept.

Your kidney may be experiencing the effects of long-time use of either Prograf or cyclosporine--the doses that were administered 17 years ago were somewhat higher, and they can affect the kidney over time at those levels. Steroid withdrawal may not improve kidney function, and if you need to reduce the amount of Prograf or cyclosporine, it can put the organ at risk.

Is your nephrologist at the transplant center? If he isn't (and at 17 years posttransplant it's likely he's not) you may want to refer back to your transplant center for a second opinion. Or get a second opinion for another nephrologist at another transplant center.

Many of the nephs I've worked with--some of whom were tops in the field--recognize that patients don't like steroids for the quality of life issues they raise. However, most of them still say that they feel more comfortable with their patients on 5 mg.

HTH,
Tracy

[DocAgocs]

Prednisone is synthetic cortisol and it is EXTREMELY nasty stuff in terms of side effects. I won't even begin to offer alternatives, but I will say that don't forget your medical doctor is your employee, not the other way around, so if you're asking questions that aren't being answered, you can always fire him and find a better replacement. There are 400,000 of them in this country, so I'm sure you can find one that will take the time to communicate with you and answer your questions in a way you can understand.

[sillybeans]

Well, Doc, I would argue that the side effects of dialysis and death are pretty freakin' nasty, too.

A good transplant nephrologist isn't as easy to find as a PCP, or a chiropracter.

[DocAgocs]

Well, Doc, I would argue that the side effects of dialysis and death are pretty freakin' nasty, too.
The side effects of dialysis are very nasty and I don't think death actually has any side effects, as the effect is pretty permanent in and of itself. :D

A good transplant nephrologist isn't as easy to find as a PCP, or a chiropracter.
You're probably right. A doctor who doesn't answer a patient's questions, however, doesn't really qualify as "good" in my book. I think you may have misunderstood my point as your tone seems rather aggressive (unless I'm misunderstanding you, in which case I apologize if I am).

If you'd like to discuss the side effects of Prednisone I'd be more than happy. Of all the drugs used today it is probably the one that is the worst for patients. In the case of a patient who has had a transplant, unfortunately those effects are a fact of life. Synthetic hormones in and of themselves can cause varying problems in the human body but the further along the conversion chain they are from cholesterol the effects are worse and worse because your body can't do much with the excess (like convert it to another hormone it can use). Synthetic cortisol, which is Prednisone, is far down the chain, hence its rather terrible side effects.

I would agree that dialysis is as bad, if not worse, and it's not something you can do for a long time.

That said, suggesting firing a doctor who isn't doing the job a patient would like them to, like answering basic questions and exploring possibilities in treatment that may be better for that patient (or at least explaining why there are no alternatives, if that's the case) is hardly grounds for having you go on the defensive, though. The attitude of "shut up, stupid patient, I'll TELL you what you'll do or you can take a hike" just doesn't cut it anymore. Is it that tough for a doctor to explain in 30 seconds what you were able to explain in a couple paragraphs for lisalee?

[lisalee]

Thanks for all the advice! Please don't get into an intense discussion over this though.
Sillybeans to answer your thoughts- Actually my kidney was damaged because of the use of cyclosporine and I am well acquainted with the side effects of the drug. That is why I switched to another anti-rejection drug Rapamune. And I know for a fact that many of the health issues I have now are caused by the prednisone and not the other drugs. I do take Cellecpt also. I guess my concern is that this doctor won't/can't explain the reasons behind his decisions, and to me that is not acceptable. Just because everyone else has this dosage doesn't work for me because I am not like everyone and my body reacts totally different to drugs. Also with all the new discoveries and improvements in the drugs used for transplant patients, who is to say that they aren't on the verge of finding something else besides prednisone to use? I am a very informed patient because I am the one who cares the most about my health.

Yes ,it might be easier to find another nephrologist but then again it isn't so easy. To be very honest I am tired of all the doctors I have seen this summer. While I will do nothing to further jeopardize my health, I won't stop looking for alternatives. Having much experience with doctors, their bedside manners and egos, I understand that they are only human who have gone through different training than I have.

Again thank you everyone for your advice. I promise to get off my soap box now and go make dinner.

Lisa