Side-effects

**Idahobikergirl** · 04-08-2015, 03:55 PM

My "boyfriend" (we're both 66), was diagnosed just today with WG, after 6 months of misery and tests and biopsies. He also has been in a lot of pain from trigeminal neuropathy. I suspect they are related somehow but none of his doctors agree. His WG started in his sinuses and has now moved to his lungs. He is very fatalistic and so far has refused any medications saying he won't live with the side-effects. I'd like to know what this group has to say about their quality of life living with their medication side-effects.

I'm also interested in the string regarding Agent Orange and WG. He was a medic in Vietnam, 1968-69.

**me2** · 04-08-2015, 04:50 PM

Hi, welcome to the forum. I don't have direct experience with trigeminal neuropathy but I remember looking into it at one point for myself. A quick search turned up this article: http://medind.nic.in/jac/t10/i2/jact10i2p153.pdf

Wegener's can be a very tricky and complicated disease. The first priority is to make sure you have a physician who is very experienced with wg and the multitude of possible complications. Others here I'm sure will chime in on how to find the best doc where you are. You may already have a good physician for your boyfriend.

The good news is that after months of suffering and not knowing , you now have a diagnosis that suggests several plans of treatment. Your good doc will help figure this out.

As to quality of life with the medication side effects. There are no guarantees. Some people do extremely well on certain medications and others have so much trouble with them they have to switch to other drugs. The only way to find out is to begin treatment.

What is more certain is that WG untreated is very much worse than the side effects of the drugs. It is easy choice really. The statistics for untreated WG are terrible. The statistics for todays modern treatment of WG are very, very good. A person can lead a normal and productive life on these medications. There may be complications but then someone without WG and no medications can have complications with their health too. That's just life for everyone.

I have always hated taking drugs but a fellow WG friend helped me change my thinking by suggesting that taking the drugs is like any other choice to try and be healthy. I cannot magically not have WG. There is no cure. (no cure in the sense that it is completely gone and I go back to the same chance of it showing up as the general population) There is treatment and I am very happy that there is. It has allowed me to stay alive and have a better life than if there were no treatment. I want to be healthy- that is why I take the medications.

I deal with the side effects as they come along and enjoy the fact that most of them end up going away. WG is a very treatable condition these days. It was not so true when I was diagnosed 37 years ago. I have lived to see tremendous advancements in treatment and knowledge and awareness with physicians.

Your boyfriend has a VERY good shot at returning to a healthy and enjoyable life if he chooses to get good treatment.
Maybe he is dis-illusioned with the heath care system. I know this has happened to me more than once and I just wanted to pack it in. Somehow I found my way back and ended up getting better care.

Getting counseling has helped me a great deal in dealing with the psychological aspects of this chronic illness. I guess I'm such a classic head case that I ended up being a whole chapter in the book my psych guy wrote. I don't mind that.
Perhaps your boyfriend could benefit from counseling too. It is common that people get counseling with this illness too.

I hope your boyfriend can find his way to want treatment. It really isn't as bad as you would think from reading about it online or even on this forum. Remember that the people here on this forum (like me) tend to be people who have had more difficulty than usual. Most people do so well they are able to go back to a normal life and don't have time to hang around here.

**morningsunshine** · 04-08-2015, 11:20 PM

Originally Posted by me2

What is more certain is that WG untreated is very much worse than the side effects of the drugs. It is easy choice really. The statistics for untreated WG are terrible. The statistics for todays modern treatment of WG are very, very good. A person can lead a normal and productive life on these medications. There may be complications but then someone without WG and no medications can have complications with their health too. That's just life for everyone.

Quoted for truth. The side effects of the medications can be a challenge, but (at least in my case) I don't have an alternative if I want to stay alive. Also, as Me2 mentioned, many side effects are temporary. For example, I have had to take high doses of prednisone (a steroid that many of us take) for a short time, and then taper off. As I start to take lower doses of prednisone, the side effects disappear--I got to a dosage last month where I didn't notice any side effects at all anymore.

In spite of these side effects, I've been able to continue to work full time, go swimming and hiking, and in general enjoy my life. It's not the same life as I lived pre-diagnosis, but it's still a good one. I was diagnosed less than a year ago and am still getting used to my "new normal"--it takes time to wrap your head around the disease and how it affects you individually.

Best of luck to the two of you going forward! It's great that he has a supportive partner in this.

**Pete** · 04-08-2015, 11:40 PM

What me2 said -- ditto! The best advice I've gotten about dealing with wegs came from the doctor who diagnosed me: Take your meds as prescribed and live life as fully as you can.

When your boyfriend gets prescribed the different meds needed to treat our dumb disease, he should ask the doc about side effects AND the probability that he will experience them. Understand that the lists of side effects on meds are worst case and included at the manufacturers' lawyers' insistence. Your boyfriend may experience none or only minimal side effects. Part of the discussion should also be about what to do if side effects appear.

Fwiw, here are the meds I take and the side effects I have:
> methotrexate - mild fatigue for about 36 hours following my weekly dose of 15 mg.
> prednisone - at doses greater than 30 mg/day I had an insatiable appetite that led to a gain of about 20 lbs. I have tapered down to 3 mg/day and my appetite is normal.
> bactrim DS - 1 pill on MWF. No side effects noted.
> folic acid - 1 mg/day. Taken to prevent hair loss from methotrexate usage. It has worked for the three years I've been taking it. No other side effects noted.

I'm 68. I've been in a medication-induced remission for almost two years. I lead a lifestyle now that is the same as what I had before I got sick.

Good luck and better health to your boyfriend.

**mishb** · 04-08-2015, 11:44 PM

Hi Idahobikergirl and welcome to the forum.

Thanks for being here for your 'stubborn' man

I hope you let him read everything on here so that he can see that the meds wont be the end of him - however, WG will if he doesn't take them

I also hope that he changes his mind and decides that he wants to take some medication.

**carriej22** · 04-09-2015, 01:38 AM

I was 22 when I received diagnosis... Within a few months I was back to work, and now I am pretty much living normally. I mean, there isn't a cure so you always have to deal with some aspects but really, I have gotten accustomed to this way of living and I try not to ponder about things I cannot change.

I took lots of meds. Methotrexate, Rituxan, Imuran, Prednisone.. Those I would say are the main ones for my treatment. I had some side effects with each, but all pretty temporary side effects. Nothing completely debilitating, I still lived and went to work and lived my life. The first few months was rough, but I still take imuran everyday and I don't think about it.

Tell him to take the medication. He won't regret it. There is lots of good life left. He might be a bit tired at first, but it will definitely be worth it. Tell him I said so

**Idahobikergirl** · 04-09-2015, 02:12 AM

Thank you, Carrie and Andrew. Very uplifting replies, both. And thank you so much for the link regarding WG and trigeminal neuralgia. He sees his rheumatologist this morning so I hope he can be reassured about treatment. He's always been a strong person who takes care of others before he takes care of himself, so it's pretty difficult for him to acknowledge, or accept, that he actually needs help and that there may be a way out of his pain, other than his way.

**annekat** · 04-09-2015, 04:21 AM

Welcome to the forum. Like your boyfriend, I had the sinus issues over a period of time and then it went into the lungs, which got me diagnosed. I was started on Cytoxan (cyclophosphamide, CTX), along with predisone and Bactrim, and saw a quick turnaround of the lung issues over the next month or so. The sinus issues take longer to clear up. The side effects of CTX were mild nausea and dizziness, but at that point I was so sick and fatigued that I needed to be in bed most of the time anyway, and it was hard to tell the side effects from the disease itself. I started to get used to the CTX within a couple of weeks and was soon taking it daily with no problem and resuming my normal activities within about a month and a half. I was eventually switched to a milder drug, MTX, and things are going pretty well, after 4 years. Some go into remission within a year, though it's taking me a bit longer to be declared as such. I'm 62 years old. I hope your boyfriend will become open to getting treatment, as everyone is right that just letting the disease take its course would be MUCH worse than any side effects.

I had trigeminal neuralgia when much younger, was treated for it, and it eventually went away. I have no reason to think it was related to Wegener's, but would not rule it out in your boyfriend's case at all, especially after seeing the article that Kirk (me2) posted. A lot of things can happen around the whole area of the eyes and that part of the head; swollen tissues, blood vessels, or other things can be pressing on the trigeminal nerve and causing the pain. It wouldn't surprise me to hear doctors who are inexperienced with WG minimize that possibility. It is important that he see docs with some significant experience in the disease, or that his docs consult with experts, who are listed here: VF Medical Consultants . Reading the forum will help you a lot with understanding the disease in all its variations. Please feel free to ask any questions, share anything, blow off steam, whatever..... and please keep us posted on how things go with your boyfriend.