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Vasculitis UK
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I'm feeling low. I have GPA which has affected my kidneys, heart, hearing, sinuses also have vasculitis in both eyes.

I have now been told I have cataracts from long term steroid use. I already feel as though I live in a dark cave as I have blind spots in my eyes. What does the future hold, where has my positive mental attitude gone I need your POSITIVE replies to help me through this please.

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So sorry to hear you feel so low. Is there any reason why the cataracts can't be operated on as normal? Have you asked? Were you told? A 90-year old lady on another forum has just had her cataracts done - she was so scared beforehand and now is over the moon at what she can see again. Nowadays it is a very straightforward op for most people and they do the first eye quite soon and if the second also needs doing it is usually within weeks. They don't need to wait until they "ripen" any more - well, they don't here anyway.

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Only found out yesterday & forgot to ask appropiate questions. Started Rituximid just before Xmas as immunosuppressants weren't keeping the Vasculitis at bay & i was having bad side affects from them, my steroids were also increased to 30mg a day which makes me confused & forgetful. I see the specialist again in three weeks time so hopefully I will be a bit more alert & find out some answers.

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Get your notepad out and write down your questions - keep it in your handbag so you don't forget it and put a label to remind you when you get to the doctor. Pred brain is a pain! We all know that ;-)

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It is unfortunate that many people take unacceptably high doses of steroids for too long. Most experienced doctors try to reduce steroids as quickly as possible using immune-suppressing drugs. As PNRpro said above, treating cataracts is relatively a very simple procedure these days - so the future is not so bleak.

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Thanks for all your replies I'm feeling a bit more positive today.

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Hi you must just think positive I knowe it's hard but my husband was diagnosed very late with wg and it did a lot of damage but and it was touch and go if he pulled through but he's here to tell the tale he has 32 percent kidney function which is better then it was he gets a lot of pain and feels ill a lot but but have to be thankful still here you just take one day at a time and be happy as you can chin up x

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I know how you feel I am still waiting to find out where else I have vasculitis aside from the eyes.

It is difficult to feel positive all the time so I try to pick a good thought each day for example I am a passionate sewer but can't do any at the moment due to the eyes so I decided to teach myself to knit (ended up with hundreds of santas in the window!!!) I love to read so the family bought me a kindle so I can change the font size.

I have also found that when down if I tell my family they rally round and soon have me in a more positive mood

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Lots of sympathy from here! I'm also a committed sewer and knitter, but last year my hands were so shaky that I couldn't thread a needle. But I could do a fairly large thread and simple tapestry and am now making a cushion for each granddaughter. Also, crochet turned out to be easier than knitting so there are several lopsided rabbits about, and mittens for friends and neighbours. And my kindle has been a real life line! Good luck with your projects!

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I was told in febuary 2012 I have vasulitus but did not know wich one it wwas touch and go 4 a while but I am hear to tell the tale they finely found out oct 2012 iwas put on steroids alizerprine but the latter did not suit but there is a light at the end of tunnel

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Thanks to all. I need spring to come, I need warmth & sunshine.

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I have WG/GWP and have resultant lung and sinus damage, some hearing loss, a serous retinopathy in one eye and have cataracts which are worsening (most likely caused by long term steroid use) but the fact I'm steroid (and almost all other medication) free is obviously a really good thing. One vasculitis specialist at Addenbrookes said he would be reluctant to operate on the cataracts due to the possibility of triggering the disease (inflammatory processes have been seen to do this although why isn't understood) but the consensus of others since then has been that it will be possible as and when the op is required. Sadly the retinopathy is permanent but has never worsened in the last 5 years and I'm sure my annual Rituximab keeps things relatively quiet. Please never forget, you're not alone here and most of us can probably recognise and empathise with how you feel right now. I appreciate how physically and mentally debilitating the constant fight can be but whilst life may never be the same as it was, it can still be long, happy and fulfilling. Healthy wishes. Martin.

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Thank you. A virtual hug for that reply.

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I had cataracts in both eyes due to long-term steroid use. I have severe vasculitis and the doctors were able to do both eyes. It was best surgery I had out of 40. I could see in a matter of hours and the flares from the vasculitis didn't seem as intense. The surgery was easy and there is no recovery time. I went back to work the next day. Think positive thoughts about seeing the blue sky without clouds in your eyes!

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Thank you . Things seem so much more positive now.

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