Really could use some reassurance, if such a thing exists

After the usual delay to get a diagnosis my 51yo husband has been diagnosed with this horrible illness. Initially he received almost no treatment for 2 months until we managed to get a referral to the wonderful team at Addenbrookes. has received platelet washing, heavy doses of steroids and is awaiting rituximab (today probably). He has been under their care for only a week and although he is less ill as such he has now lost complete use of one hand and most of the use of the other and can no longer stand or walk due to numbness in his feet. No one has said he won't get better - but no one has said how long this might take. With 3 small children and a farm to run can anyone share their experiences of what might happen next. At end of tether and can't stop crying.

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11 Replies

  • Hello, with all my good wishes and hopes that your husband will start to improve soon. I'm not sure I can tell you much, but it sounds as though you need some quick replies! I am sure my husband would say that watching someone with this illness, and coping with the consequences, can be as difficult as having it, but since I was referred to Addenbrookes, life has looked up for both of us, and I am having effective treatment.

    Has your husband been told which type of vasculitis he has? It does seem to make a difference to the way life goes once everything is more under control.

    It is nearly two years since my diagnosis, and I'm now on rituximab and have got down to 6mg of steroids from 60mg in January 2012. I've picked up most of the threads of my former life, but have to keep things very structured in order to cope. Built in 'rest' periods when I read or catch up with paper work are essential. I can imagine that farming and three small children will make this much harder for you and your husband than it is for me? But there is a good quality of life at the end for many of us, and your husband is in the right place. When I was first diagnosed I was told by someone with CSS that he had learnt that life was no longer a brisk walk, but a potter with a camera.

  • Thanks for that. we think that the type he has is called PAN but his initial treatment at a different hospital was so poor that I don't know what to believe

  • Hi jmtjat, it is so sad to hear the pain you are going through with your husbands illness. Myself,I am awaiting results of test to see if I also have this illness although I don't think think it's the same type as your husbands. I am dreading the outlook as I have other illnesses to contend with. I hope your husband goes from strength to strength after his hospital treatment. Love to you both xx

  • all fingers and toes crossed for you. It's a times like this that your realise how much kindness there is in the world xx

  • I know, I'm so glad I found these sites as I have RA, COPD, osteoporosis, and Sjogrens,as well as waiting for Vasculitis results. I also had an operation on my throat last year thinking it was cancerous but luckily it was benign. Being able to open up on here takes the edge off how you are feeling, so, thank to all you lovely people who take time to read reply and advise. Let us know how your husband gets on xxx

  • Mine is not PAN, it is a large vessel vasculitis, not small. I hope someone with PAN can give you more, and better, information. But thinking about you both...

  • Hello, so sorry to hear of your recent experiences. I don't know much about PAN, but the little I do know about vasculitis tells me that your husband is in exactly the right place for treatment.

    Have you discussed your concerns with the consultant in charge of his care?

    Vasculitis UK have a very good helpline, their phone no. is 0300 365 0075 and they may be able to answer your queries. Also I believe that Addenbrookes have a vasculitis specialist nurse who may be available to talk to you, the ward staff will know how to contact her.

    I hope you manage to get some answers soon.

    Very best wishes.

  • I was diagnosed with pan only weeks ago, I was poorly 3 months before hand and then hospitalised for 2 1/2 moths after that. I was really poorly until they diagnosed me I am now on steroids and chemo and making a great recovery I lost 4 stone one back on easily. I don't know how well I am going to be but I am improving every day and hope to be back at work early next year. I wish you and your family good health and a full recovery.

  • Although I have WG, strangely I bought my house from a lady who had PAN! She told me how ill she had been but she was (and still is 4 years later) working, looking after 4 children and a grandchild and showing no signs of the illness (she's in her 50s). My husband would tell you how hard he found it to watch me going through those early stages of treatment - you aren't alone in the way you are feeling. I do wish you well and your husband a speedy recovery: Addenbrookes is the best place for treatment of vasculitis. Charlotte

  • Very many thanks for those encouraging words. Alex having first dose of rituximab as I type and has more sensation in his fingers each day, which is such a relief. Just wish he could stand. When someone has an illness that you have never heard of before you do feel so desperately alone. Friends are great but you just need a network of informed support too. xx

  • I have PAN...and the sudden and dramatic impact on mobility can be a very awful shock to the patient and their family. Unless this is a very rare case of PAN ANCA+, then the normal first line of treatment is cyclophosphamide and not rituximab.

    Given the suddenness of the loss of limbs, this is probably attributable to the arteries supplying blood to the peripheral nerves occluding. As this is quite recent, the nerves have not fully died back, so any cyclo or Rtx treatment which reverses the inflammation of these arteries should lead to a fairly quick recovery in function and feeling in the limbs effected. The longer the nerve damage persists, the less chance there is of recovery, although we are talking motnhs now, not days and weeks.

    PAN can affect the hear and kidneys, so reducing overall inflammation rates is really very important. There will be numerous tests and images taken to see the extent of this to manage this as a priority.

    Do please message me if you want to talk about it; I can talk from my own experience if that will help.

    Take care.

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