My husband has WG

[Jenni]

I just wanted to introduce myself. This disorder is a such a life altering struggle. Any advice on what steps to take would be appreciated. Right now he is giving himself shots of methotrexate since immuran was not working.

[Sangye]

Hi Jenni,
I just joined the group a few days ago. I hope you're taking good care of yourself, as you help take care of your husband. What type of advice/steps do you mean?

[Natalie Makeef]

Hi Jenni from New Zealand

I was diagnosed with WG in Nov 06. It is a life altering struggle. I have been married for 4 years and my husband David is a wonderful support to me. This illness is unpredictable. I am in remission and taking Methotrexate I am completely off predisone. I recommend your husband gets lots of rest. I tend to get a nap in the afternoon. WG can bring on fatigue. Don't allow him to get too stressed or have anything stressful or a stressful job this seems to bring on more issues or make current issues worst. I found that if I did too much on one day than the following day I was absolutely exhausted and would have to rest. I also found that long distant driving can take alot out of you too. My advice is to read up on the internet about WG keep researching on it thats what I had to do. WG may bring on joint pains so a good anti inflammatory medication will take care of this. I hope this helps and all the best Natalie

[Sangye]

Hi Natalie,
Glad to have you on here! it's true that stress does us in. So I tried for a long time to avoid it in a number of ways, but it wasn't very realistic. Even my docs would tell me to keep my stress low, though they were the source of some of my greatest stress! I've had constant crises with Wegs, finances are constantly in a tank, dealing with insurance, etc... so I think stress is here to stay. Given that, I think we have to learn how to manage stress so it doesn't harm us. One of the main topics I work on in therapy is learning to manage uncertainty. I'm sure everyone here knows what I mean!

Long-distance driving, yeah. Totally wipes me out for days. One of the hardest things to explain to healthy people.

Be careful with anti-inflammatory drugs. The combo of Wegs, pred and NSAIDS sets us up for gastric bleeding or at least chronic damage. I never used to take anything. Once I tapered the pred, my joint pains increased. Not wanting to increase the pred I started taking the smallest OTC dose of ibuprofen with food every other day. I mean, one pill (a 4-hour dose) every other day-- a ridiculously low amount! After about 3 weeks of it, I developed stomach pain, diarrhea, couldn't tolerate an antibiotic, had to be hospitalized for severe intestinal inflammation, and 1.5 years later my gut is still toast. Now I can never take any of them again. NSAIDS are extremely dangerous drugs, no matter what the manufacturers want us to believe. There are so many studies that demonstrate their danger.

Be careful, okay?

[Carol]

Apart from all the medication you need to take the two best bits of advice I can give you after having this disease since last Easter is
1. Meditate every day - find one that suits you. The one I do is Meditation on Twin Hearts . One is with Self Pranic Healing and the other is Psychological healing.
2. Plan your day - it must allow for rest. For example if we are going out then I now get ready and leave 1 hour free before I go out. Sitting seems important to me - I can do alot of things as long as I am seated. Learn how to do the 20 minute nap. I do it in the car, in the doctors waiting room if they are running behind time, on the beach if the others are going for a walk, anywhere I can. It will stand you in good stead.

[jola57]

This disease is so different for each one of us, the pain, constant tiredness and general unwell feeling seems to be the norm. Rest when you can, follow the medication regim, keep a positive attitude (I know it is hard), lough a lot, keep busy with work or hobbies as much as you can, and take each day as it comes. Help your husband by doing normal daily routines just keep in mind he may be tired and crabby because he is in pain.
each marriage has its own dynamics so its hard to let you know how to go about your life from now on. I find that sticking to my regular life style as much as I can helps with my psyche, yet I shy way from large gatherings, do not have friends over anymore, or attend parties. It is just to tireing and I also dislike the looks I get because of my weight gain. My husband follows my lead and we talk a lot about what each is feeling. good luck