Husband newly diagnosed and miserable. How can I help??

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My husband (29yo) was diagnosed with WG/GPA a few weeks ago. Our story in a nut shell: Near the end of November 2016 he had a light cough that was disregarded as we had all had a bout of a cold in the house. After 2 weeks, he began feeling really strange-sick, he couldn't explain it, and a few days after that he woke with extreme shooting pains in his chest. Fast forward to finding out he had two large masses (nicknamed the tennis ball and the golf ball) in his lungs. After an invasive biopsy (VATS), a lobectomy, and a week of anxiously waiting, we were told he has WG, and not cancer as previously suspected.

He is currently on 60mg of Prednisone each day and has completed 1 of 4 Retuxin treatments. I have left his previous pain and suffering out of this but my heart is heavy seeing him suffer the way he has. He is slightly better now than before. I know that we are actually on the very blessed end of this "disease" as it has not spread to any other part of his body (it is only in his lungs) but he is struggling so much with dizziness, insomnia, constant pain, difficulty breathing, constant nausea and heartburn, headaches, chills and cold sweats, incredible joint and muscle aches, and more. He takes ibuprofen now for pain management, that's all his Rheumatologist feels he needs now. I am in desperate need of advice and encouragement.

What can I do to help him feel better/offer relief?

How long until he sees some relief from the treatments?

What happens after the Retuxin? New drugs?

What does a life with WG even look like?

I'm doing my best to stay strong and positive for him. My heart breaks for him inside though. Any advice/suggestions/experiences are so appreciated. ??

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  • Posted

    Hi there, it makes me sad to read your story, all I can say to reassure you is that the symptoms do decline in aggressiveness after a few months of Prednisone. After weaning off the prednisone your consultant will most likely prescribe a daily tablet of perhaps micophenolate motefil or aziathioprine. My 17 year old daughter was diagnosed at 14, she too was in agony and it broke my heart. Now she is tired or exhausted on a daily basis, each time she gets a mouth ulcer or a cold starts to develop into something worse then we have to visit the hospital. Life for her is better than it was pre-diagnosis, but as her Mum I worry daily about what the future holds, the consultants are unable to give us much information about what to expect. My daughter's lungs and kidneys are both damaged. You can't really offer your husband anything but your emotional support at this stage, which I am sure he will appreciate. He will feel better in a few months. WG is a daily worry for me and I would take it away from my daughter and take it on myself if I could, but it's a worry that you learn to live with.

    My daughter was prescribed micophenolate motefil initially, but this was changed to aziathioprine recently. When I did a bit of research I am shsocked to see that MMF is about £300 per day whilst is a few pence, I am going to discuss the reasons for changing the drug at my daughter's next hospital appointment, does anybody have any information on this to share? Good luck to you and your husband, I'm thinking of you.

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    • Posted

      I can't imagine watching one of my little girls going through this sad. Thank you for your response and encouragement. I pray that things improve for your family as well!

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  • Posted

    Hi there

    Without putting all the details online here please take comfort in the fact that you are not the only ones going through this terrible illness.

    My sons story is so very similar, he's 14 and has been poorly for 14 months now, we named his mass 'the grapefruit'.

    He's completed six months of cyclophosphamide but unfortunately he also had to begin Rituximab just last week as he went downhill again over the new year.

    It's a cliche but it has been a long, traumatic rollercoaster for all the family!

    However ... my son has returned to school this week and is starting to have more good days than bad and we take great comfort from this.

    Can I also say as well that a family friend of ours, male mid 40's is successfully in remission of GPA and has got through this.

    Stay strong and keep in close contact with the consultants if your husbands symptoms continue like this, paracetamol and ibuprofen can only do so much.

    Kindest wishes xx

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    • Posted

      Thank you for sharing your story and encouragement. It makes a big difference knowing there are others out there to share their wisdom. No one in our world has heard of this or been through anything like it. It has been a roller coaster for us too! I just wish so badly that I had an answer for all of his discomforts. I will look forward to the "good days" that are to come I guess.

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  • Posted

    It’ll be over soon, be patient, is a very lengthy recovery, I was diagnosed almost 2 years ago, same symptoms, unbearable headaches, joints and muscle pain, sweaty nights,  coughing, lost 35 lb, nose bleeding all the time, I have a saddle nose now, massive sinus infection, ear infection (now with hearing aids), after dealing for over a year with fluid in my inner ear, then was the sinus, then coughing, then I could barely walk…I was dying…and they couldn’t diagnosed me here in the states I had to fly overseas and 2 weeks after in the hospital they got the diagnose. I was on prednisone 85mg daily and 4 infusions of rituximab 750mg plus calcium, vitamin D. Not just until a few months ago in June 2016 I could feel I was myself again, is a very nasty illness. But you both have to get educated, read a lot about the illness, I know is different with each person and some other body structures get more affected than others, get a GOOD rheumatologist who is familiar with the illness, not all of them know, and follow the medicine regime, I know prednisone is nasty too but it saved my life, currently I’m in 2.5mg daily, still with hearing issues, and my elbows, and my left foot are not working 100%, tired and sleepy all the time, get a healthy diet, lot of fruits, salads, no milk products, lots of bananas and avocados for potassium (prednisone depletes all the potassium in your body), I have my days, some days are better than others, have my last infusion in October 2016, and feeling better every day, with more energy, and according to my rheumi, I’ll be in this chemo every 6 months for the next 2 years, after that…who knows, statistics say it’ll come back again, and it’s a matter of controlling the damn illness…but most important I have a regular life, I wasn’t very active, or a daredevil before, I’m not a workoutholic other than weekends activity with my daughters and wife. I’m 41 and too young to give up, so chin up, breath and hopefully your husband will start feeling better soon, Rituxan can take up to 2 months to start acting on your body, that was how it worked on me. Good luck, God bless you both!! 
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    • Posted

      Thank you for your story. I'm not sure how we got so lucky being diagnosed so soon except that they thought it was lung cancer so they gave him a lot of attention. The biopsy was the ticket for us. He's too young to give up, too. Thank you for the diet recommendations as well. His naturopath thinks this may have something to do with his body not being able to remove toxins so she wants him on the no-amylose diet (excludes bananas), but I'll do my best to find other great sources of potassium.

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  • Posted

    Hi Rach

    My heart goes out to you over your husband's illness but there is light beyond WG.

    I too got a cold about 6 weeks before the dreaded disease hit (this is very common) and I started with a headache which got worse as time went on.  I finally saw my own doctor who thought that it was Temporal Artritis so sent me for an eye test at the local hospital.  I was admitted and stayed a week as they had also spotted diabetes.  I stayed being ill for quite a while and my diabetic consultant thought that I should see a rheumatologist.  He thought that I could have WG but a 24 hour urine test came back negative (the day I saw him the protein in my urine was sky high).  I carried on seeing him for 2 years until he retired.  The next rheumy decided again that I could have WG and did a couple of blood tests.  As I was fairly well at the time they came back negative.  I also had a nasal biopsy which again was negative.  After another couple of years he discharged me without telling me even though I told him that I was coughing up blood. 

    I dchanged hospitals to see a chest specialist who did an x-ray, CT scan and a bronchoscopy.  Unfortunately I was almost in remission when I saw him and again I was discharged.

    I then found out about a doctor who was doing a study into WG in London (about 80 miles away from us).  I saw him a couple of months later but again I was in remission.  He confirmed that I did have WG and I can see him when I have another attack.  The problem is that in the 12 years that I have had it I have only had prenisolone for four and a half years but no other treatment.

    Most of the time I am fine though do have to watch my working as I tire easily.

    Living with WG is not easy but you do get used to it as long as you remember your limitations.

    I hope that this helps you and your husband and if you are in England perhaps we can converse more.

    Good luck

    Jan

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    • Posted

      Thank you for your encouragement Jan. How frustrating that must have been to know that someowaant right but not being f able to catch it in action. I'm glad at least you know, now. We live in the states, but I so appreciate your offer. It would be nice to have others closer to us to share these experiences with.

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  • Posted

    God Bless you and him!.I was not diagnosed until I was 61 years of age in June 2009. I had doctors that were not diagnosing me correctly or just didn't care. I was looking forward to retirement when I was struck down. I was nearly dead when a doctor took enough interest in me to do an MRI and put me in a hospital. I had a severe sinuns infection, my upper left portion of my lung was collapsed, and I had severe pain in my legs, feet, arms and legs. They too, thought that I had cancer. But I didn't. After a biopsy of my sinuses, it was confirmed that I had Wegener's. I was treated with Cytoxin and Prednisone. I started out with 3 Cytoxan and 80 mgs of Prednisone. I've never had Retuxin. Since he's so young, He should do a lot better than me. The prednisone will make him weak, until he can gradully lower the dose. Hang in there. I am so interested in how I got this diaease. I do know that I've had it all my life. I was sickly as a child. I believe that I could set the world record for having sinus infections. Please keep in touch with me. I would love to know how your husband gets along.

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    • Posted

      Hi Sarah,

      I apologize that I didn't reply sooner. Life has been a little overwhelming lately. Thank you for sharing your story and I'm sorry to hear you're dealing with this also. Our naturopath believes my husband has this because he tested positive for a condition called CIRS (chronic inflammatory response syndrome). Basically it's when your body is unable to process toxins out the way a heathy person would and so the toxins build up inside you and cause a host of different problems. She believes this is what led to Wegeners for him. It's not a answer at this point but if she's right, it's a treatment plan for at least keeping it in remission when we get there. So far he hasn't finished his Retuxin treatments so it's still too soon to know. I will try to keep you updated as we learn more.

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  • Posted

    Hi Rach,

    I have just found this forum and read with interest the different cases as this disease seems to cover so many areas when attacking the body. I have just been diagnosed with Wegeners after spending the last 2 weeks in hospital. My pain stated in my right foot spreading over days to my other foot both my hands and the left hand side of my head. I had a rash on both feet and got to the stage were the pain was so bad i could not walk or use my hands. In hosipal i have been placed on around 50 tablets aday including steriods, gabapentin, amitriptyline, tramadol and liquid morphine. I have had a sinus and throat issue for about 4 years which they say is also a common sign of this illness. Hopefully the doctors have caught mine before it travels to other vital organs within the body. I have taken a w week dose of Methotrexate which is a lower dose Cemo drug but starting next week i will be on a 12 week program for a stronger cemo drug via IV drip called Cyclohodphamide. The pain is so intense at times i really am hoping that although this treatment wont be easy it will target the main cause of the illness.

    As you request i am asking if anyone has had experience of the foot and hand pain and how long did it take to get the feeling back. I would also be interested in anyone that started to develop further issues within the body once treatment had started or did this put a hault to it.

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    • Posted

      Hi Philip

      Your post popped up on my phone (my son was diagnosed last year with GPA).

      Have you also linked in with Vasculitus UK on Facebook (it's a support group with so many members and a good way to read about and compare symptoms etc...)

      Educating yourself with these forums and the support group has helped our family immensely.

      This illness is so complicated it really does help to chat with others who are living with the condition.

      Good luck xx

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    • Posted

      Hi Gagets,

      Many thanks for your reply. I have joined a Wegners group on FB but not the vascular but i will do because i have been diagnosed with this.

      Your correct so much information to read up on which is the stage we are currently at.

      Many Thanks

      Phil

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    • Posted

      I feel for you. No one can know the pain of GPA in your arms, fingers legs and feet, until they have it. I would get so I couldn't walk on my feet. My rotator cuffs would lock up so I couldn't life my arm. Mobic is a drug that help me in my feet. I have had sinus infections since I was 18 years of age. I'm 68 now. Seem like the older I got, the  more sinus infections I had. I was diagnosed with GPA in June 2016. I had to go on disability and have not got to go back to work. I hope you get better. I feel so isolated and a lone with this disease. Keep posting.

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  • Posted

    I don't know it they have told him to get a nebulizer for breathing treatments, but that will help him with his lungs. I had a collapsed lung with GPA and have cronic broncitus. I had breathing treatments while I was in the hospital for 8 days when I was diagnosed. Motion sickness tablets may help him with his dizziness and nausea. I take Mobic for the pain in myarms, legs and feet. Ask his doctor before he takes any drugs. I hope he gets better. I did for a while, now I'm having trouble with my breathing. I take breathing treatments with albuterol. Keep posting.

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