Has anyone felt like they just can't cope and come to terms with wg I don't no what to do about it

Im feeling run down and wanting to give up this disease has took all my confidence and I do not want to see or talk to anyone.

Recently I went to doctors and we arranged for me to start dropping my preds but as soon as I dropped one I felt Ill, I keepted dropping unitll I got to 20 mg I was on 40, because I feed up of putting the weight on but I got to ill and now back up to 40,before I had retuximab and doctors saying it didn't work now I have to go on cyclosporine I think it's called but before I have that I have to have my eggs frozen because it could make me infertile plus more steroids on top just feels like it never ends also feel like my friends and family are getting fed up of me and don't understand..

8 Replies

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  • I think if I remember Louise you were only diagnosed in December.

    Rituximab is usually used for relapsing WG not initially. Cyclophos is usually used to begin with to give the WG a big kick then maintenance drugs such as Azathioprine are given along with the prednisolone. After a short while the prednisolone is reduced quite quickly to start with and then very slowly. If you go to the Health Unlocked Blogs and look through them you will see Holly's story... Holly is having a baby in May and Holly did have the Cyclophos treatment. I am not sure where you are been seen but if you private message us with the details we should be able to help you. We can also help with some information for your family to help them understand too

    Take care

    Susan

  • I have looked for Holly's story link. but can't find it on here but I will try and send you the story if you send me an email sandjmills@btinternet.com. Please do get in touch

    Susan

  • I feel for you, Louise! A really difficult to cope with phase in your life. I am sure that things will settle on the meds front fairly soon though it is frustrating when things do not go as you think they should. Susan's advice is great, as always! Make sure your family and friends know how you are suffering. You need and deserve their support.

    When I read your question and realsed how recently you had been diagnosed, something triggered a memory which, if I share it with you, it may help.

    I was told by my GP, on first being diagnosed, that I would experience grief. Grief for the loss of my health. Didn't quite know what to make of that at the time but, years on, I know what she meant and can recognise the grieving process.

    Apparently, there are several stages of grief, usually quoted when someone has to deal with the death of a close relative or friend. Some say 7, some say 5. They are: shock and denial (when you can't think if anything else), pain (life feels chaotic and scary), anger and bargaining (stems from frustration - 'why me?'), depression, as you accept what is happening and all the long term implications, then the upward turn as you start coping, and recovery (hurrah!), when you reorganise your life so that your illness is one important part of life rather than the centre of it.

    I don't know if you think this might help, perhaps it might show you where you are at right now and how it is likely to go. Just know that we have all been there and we have experienced your current hell. It does get better, it does!

    Ayla

  • Great reply Ayla. Sums up exactly, I think, what we all go through.

    The "grief" stage is very true. My life changed completely the day I was diagnosed. And if I'm honest, it took a while for me to come to terms with that. If I can also add one other feeling to your list of "stages"; lack of control. I felt this deeply at first but now I feel that being "informed" counteracts that feeling completely.

    Louise, each of us on this website empathises with you because we've all been there. As Ayla says it does get better and I wish you all the best for the future. X

  • Louise

    I can only sympathsise, as I too have times when I have just had enough and wonder if life will ever be the same again. I haven't got WG but feel like I am taking one step forward one back all the time with my health at the moment and feel I am far too young for all of this.

    I find that some friends and indeed family just don't get it but do find being around the right people really helps my mood and however low I feel or low my confidence is I find getting out makes all the difference and when I do venture out and see friends I am so glad I made the effort.

    This group gives me hope too as so many people seem to live full lives after treatment, return to work and back to normality.

    I'm sure it willl get better for you, i think with all forms of vasculitis it often just takes time to find the right combination of medication that works for you.

    Take care and hang on in there.

    jenny x

  • Hi Louise

    I can so empathise with you. I also have WG and I'm having one of my 'down' days today. I did go into work but promptly broke down in tears when I arrived so I was sent home.

    I too feel totally fed up, run down, every bit of me feels like it is hurting, exhausted, angry, frustrated, FAT, confused and just want to be left alone to sleep for as long as possible.

    Ayla's comments make a lot of sense. I said to my manager this morning why can't I feel like I did before I got ill. I won't for a while yet and I realise this of course which was probably the main reason for me bursting into tears. So yes, there is grief for the way I used to feel, grief for the way used to look and grief for the stamina I used to have.

    Coming to terms with any disease is not easy and accepting it is even harder. I do though, have days when I feel OK, have quite a bit of stamina and feel happy.

    Hang on in there Louise, we will all get through this and come out the otherside,slightly battered but still battling. This group is great for letting off steam.

    Take care

    Jacqui xx

  • I know it is difficult i can remeber when the dr said I was in remission I felt depressed rather than celebrating as i felt crxxx. We all go through waves of emotion and sometimes it all seems to much, but then you sometimes see a light at the end of the tunnel. stick in there summer is a coming

  • i'm 18 years old and i've had hsp vasculitis for 7 years now, nothing as bad as your description but it absolutely destroys my confidence as well as most of the time im covered in my spots, but you have to remember to just keep going. there'll always be people to talk to and let off steam to (especially on here, we all know how it is).

    stay well

    xxx

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