View Full Version : pain medication

Brittany Leigh
05-13-2009, 12:10 PM
quick question,

i started the drug cytoxan two weeks ago and for the past week have expeirenced horrible knee and ankle pain amoungst other side effects and just wondering how other wegeners patients pain is managed. ive recently fought with my doctors tooth and nail on the topic b/c both my family doctor and lung specialist have told me they do not want me on pain medication such as hydrocodone simply b/c im 19 and their only hesitation is fear of addiction. my joint pain in my legs is completely dibilitating at times and my feet are frequently purple, and on the bottom arch of my feet goes numb. ive been given 50mg tramadol which hardly takes the edge off of joint pain and today was prescribed 100mg neurontin which after talking to a close family friend, i was informed that its been known to make people turn completely manic and irrational and makes you flip out on your care giver.:eek: i have enough side effects as it is, and my disease has taken such a toll on the people closest to me that it makes me wonder if its really worth the risk.

so advice is greatly appreciated!
im so lost.
im 19 years old and on chemotherapy.
i have to lean on furniture to be able to get to the bathroom.
a little over four months ago i was preparing to enroll in the navy.
i was a assistant manager in a resturant
i wanted to evenually be a physical therapist.
i had everything going for me.
but no, this past feb. my world was completely flipped upsidedown.
now, my world consists of constant worry and frustration.
i have to remember so many medications and inhalers and vitamins and having to check my blood pressure constantly and give myself b12 shots.
i have to sit around and deal with doctors who have never dealt with someone whos had wegeners.
i have to deal with doctors who one minute claim they've never treated someone with wegeners and the next minute can tell me i dont need pain medicine....if you've never dealt with someone who's had it, how do you know how much pain im in?

so please, if anyone out there has any suggestions as to get though to my doctor, or can let me know how their pain is managed please reply!


05-13-2009, 12:24 PM
Hi Brittany,
My heart just breaks for you, being so young and having to deal with this. I'm glad you found our group, though, because we can all help you with a lot.

I had the kind of pain you're experiencing for almost a year before I got diagnosed with Wegs. It's nightmarish. I agree with your docs about not taking painkillers for it, but I think they don't know Wegs well enough to be treating you, either. The pain is a sign that your Wegs is very active, and that you need more and/or different drugs to control it. So as you get the Wegs under control, the pain will calm down, too.

Are you on prednisone?

You must find a Wegs specialist to treat you. Docs who don't know Wegs inside and out can seriously mess you up (happened to me).

You can have a good life. I don't know what you'll be able to do and when, but it won't be like this forever. First things first-- get a Wegs specialist. Need help?

Brittany Leigh
05-13-2009, 01:48 PM
wow, what a quick reply. :)

and yes i mean, my goal isent to be doped up to deal with my disease, but when its fully active, theres times i need SOMETHING to get relief. i realize i will expeirence a lot of pain through my journey with this disease but until the chemo can start benifiting me, i shouldnt have to hurt every step of the way until then.

is there any kind of home remedies i could try as far as proping my legs a certain way to be able to get some sleep? or really anything to help ease pain until i can find a doctor that is on the same page with me?

and yes i've been on prednisone for four months, 60mg but recently decreased to 40mg b/c of high blood pressure which im also having a really rough time with. 168/107 today in fact :(

and as far as getting a better doctor goes, its extremely hard b/c may 1st i was dropped from my insurance so its quite pricy right now to get the assistance i need and im now in the process of getting my disability going, so once my medicaid is started, its hard to find a good doctor or specialist who accepts medicaid.

05-13-2009, 02:46 PM
I'm concerned that you've been on 40 mg of pred for 4 months and still have so much pain. And why have they waited to begin cytoxan???? It doesn't make sense to me that they're decreasing the pred when your symptoms are so bad just to control bp. They can give you a drug for that. A bp drug would be temporary, while you're at the higher pred doses.

Many pain meds suppress respiration, so if you have lung issues, it might be risky. I don't know much about prescription pain meds, though, since I don't tolerate them well and never take them. One warning : do not take ibuprofen for your pain. Not even the smallest OTC dose every so often. Pred messes with the stomach too much, and adding ibuprofen can damage the stomach lining. I speak from experience on this one.

When my pain was/is that high, I never could find any positions of relief. Nighttimes were horrific. Can you take something to help you sleep at least?

As far as finding a Wegs specialist, I recommend contacting the VF to find the closest center, then discuss your financial situation with the finance people there. They'll often take you as a "charity" case, especially given the fact that you have this life-threatening rare disease and have no docs who know how to treat it.

I know the Medicaid route. Ick. But many excellent places take it--I know Johns Hopkins does. Mayo Clinic doesn't.

Hang in there.

05-14-2009, 10:32 AM
Brittany, I remember that I had prednisone for 5 months before cytoxan because being misdiagnosed with polymyalgia and I was in constant pain. I simply moved only when needed to, lay in bed and, as I said in another post, watched TV shows, movies and bloged. Then once on cytoxan other bad symptoms came and I just learned to deal with them by comming here and knowing that others experienced same thing. i am so sorry that you are so young, but we have here others who were like you and with ups and downs carry on with in new normals with our BFF and have good life and family. This too shall pass.

09-10-2009, 11:59 AM

It really hurts when I read your story. It's just that I can relate you to my half-sister. It really breaks our heart to see her in pain. We have sent her to doctor and yes it helps. Until one time a family friend of ours introduced phoneconsultation.com to check out for pain meds. We found out that once you consult to them and having their meds, they used to have refills. This is face to face doctor visit also. We found it great and we noticed that they are serving several states than they used to. Have you tried them too?

11-12-2009, 02:21 PM
Brittany, I don't know if you still read posts, but this article on MSNBC.com today supported what you'd heard about Neurontin.
Pfizer drug studies fudged, report says - More health news- msnbc.com (http://www.msnbc.msn.com/id/33867108/ns/health-more_health_news/)

11-13-2009, 12:37 AM
I took neourtin for almost 6 years. Before the Wg diagnoses. Then the RA told me to stop and try cymbalta. That was okay with me but I went through really bad withdrawthes. I had to decrease it slowly over two monthes before I was off completly. I was taking 1400mg through out the day. 800mg at night then 200mg at morning and early afternoon.

I didnt notice strange behavor but on the other hand.......................nah.........I was functional and not off the handle at all. Coming off was another story that was bad. The RA wanted me to do cold turkey and I tryed for 36 hours and ended up taking a lower dose and tappered it off myself every couple of days. He was so wrong!!! It was like nothing I had ever felt and don't wish to again. My docs have given me vicodin and darvset and # 4 tylanol w/cod.. I am very good about not taking it to often the thing I have come to relay on to much is caffine. I am a zombie with out it though. I worked out the morning then took a nap then bought no doze and flet like I could function again.

11-14-2009, 03:20 AM

I know you are concerned about the high blood pressure. You are right the pred can contribute to that. I had some high blood pressure to begin with and once on pred, it shot through the roof. My GP put me on an additional blood pressure med called propanonal (? sp) along with a hydroxichloritiazide (again sp?) That seems to keep it under control.

Until your pred doses are decreased and you start to feel better, don't be afraid to ask for BP meds. It helped me alot.

Lisa coffeelover

11-25-2009, 02:39 PM
Brittany, i was on neuroton after a bad back surgery and my doc took me off it in 3 days. I was taking 900mg /6hours and darvocet also,and could hardly wait for my next dose and going off that fast i almost lost my mind. Now i take lyrica every 12 hours and darvocet as needed, and get shots in my back every 6 months. My pain was wanting to die if god had no other purpose for me, and i finaly found a good doctor. So keep searching, as i am for my dear hubby for his wegeners. Brittany, i feel so sorry for you with being so young and having to suffer so. I'll keep you in my prayers and hope for relief and remission comes very soon. Marion

11-25-2009, 03:26 PM
I agree that you must have an active case of WG right now, because of the joint pain in particular. I would have thought that would have cleared up for you, were you getting WG specific treatment.

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

Look at the resources available on the link above. It isn't clear where you live. You don't have to give us specific information beyond state, province, country- just something that allows people to get back to you with specific information about specific doctors (oftentimes) and institutions.

The insurance issue makes me think you are in America somewhere. States have departments of health and human services (they may go by different names, or variations on that name), social welfare services for the old, poor, uninsured, and numbers of conditions. WG, by new amendments to the Disabled Americans law, passed by Congress in January of this year, makes people with auto-immune diseases disabled by definition in Federal law. That can be especially helpful to you if you contact your state (or Social Security) office to seek some sort of help on medical care and bills.

It's a new enough law, you may have to be the one who brings the amendment to their attention! Were you to run into roadblocks (and you will!), you might even have to seek an attorney's help to establish your eligibility for assistance.

This, and the other comments, give you a lot of options to consider and look at at a time you aren't in the mood or in a physical state to consider doing anything about your issues. Do you have any family member who can help, who is computer-literate, tough, and willing to help you?

I am particularly concerned that you have doctors with limited WG experience, or so it seems, Brittany Leigh. I was near death, couldn't breathe without an oxygen mask, had to be taken by ambulance to the hospital, siren blaring, light flashing. Not the way you want to go!

I went through a variety of treatments- won't go in to them here, for the time being. In the weeks that followed, from the local general hospital, to the regional hospital, to the teaching hospital, the one thing I didn't experence was pain.

I only know one reason: they had me on some sort of painkiller, an IV, a pill, I don't know what. So I know an 55-year old guy (me then) who had lung and kidney involvement, had the joint pains you speak of before I went into treatment can be made comfortable, to be made unaware of pain. It was uncanny. I kept asking, in fact, why I wasn't in pain. It made no sense to be so ill and not have pain. The nurses and doctors in three hospitals told me that that was part of their job, to keep me as pain free as possible. I came to take it for granted, and to thank the staff when I left.

WHY, then, can't your doctors come up with a combination of treatments that bring your WG into control, and numb your pain? Believe me, we on this forum really want the most detail you can provide us to help you answer the tough questions you face. A person with a potentially fatal disease doesn't need some needlenecked pinhead bureaucrats playing "We can't treat you without insurance" games. We want you to have a fair chance at a long life, doing pretty much what you want to. That's not a bit too much to hope for! Look at Cindy! A weggie planning to climb Mt. Everest!:):mad::confused: