Can anyone offer any insight?

Hi All

I have only just joined this site and would be grateful for any information that anyone can help me with as I have never met anyone with vasculitis and am having some alarming symptoms which are causing me real concern.

I started getting bruising all over my lower legs a few years ago and was told I had vasculitis caused by sjogrens/sle. The rashes/bruising has continued despite taking hydroxichloroquine and has been more of an inconvenience rather than a huge problem. However in the summer I started feeling really unwell and became covered in hives and then developed numbness in my arms and legs, I have been taking predisolone since then but the numbness continues and has spread to my face and sometimes I have it across my back. As a result of taking steroids I have ruptured my achilles tendon and with the numbness in my arms whilst being on crutches I am really struggling with mobility. My rheumatologist has referred me to a neurologist but while I am waiting for that appointment I am worrying myself sick about where this will all lead.

Has anyone else had similar Symptoms? Any information would be really appreciated.

Many Thanks

Jenny

7 Replies

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  • Hello Jenny,

    I have also just joined this site :). Although I am being treated (15months) for Cerebral Vasculitis brought on by Sjogrens. I too have brusiing on my leg as well as my arms and body - I only have to bump into something and I get a major bruise along with small round 'shock bruises around it'. I also have numbness but it is very short lived it just comes and goes and I have not been able to prove to my Rhuem of this condition.Also my Rhuem told me the bruise is from the medication! So I am surprised when your Doctor confirmed its from Sjogrens - I would really like to know more about the bruising diagnoses, if you get any updates from you Doctor, I will bring the info to my doctor when I see him on the 21 Nov.

    I am also under the care of a Neurologist, this is because I also fall down alot and they are not sure why - it could be Sjogrens due to the numbness in the feet or it could be my balance that has been damaged due to Vasculitis.

    Don't worry to much (although easier said than done!) because stress can also upset your well being, as suffers of Sjogrens (Lupus) have to try to keep their stress level down - again easier said than done! My next appointment with the Neurologist is on the 1st Nov - I hope to have some positive news. If your appointment is before this, I wish you all the best and hope you keep me updated, I will do the same for you :)

    I hope this helps. Warm regards

    Julia

  • Picking up on the falling down thing: I have cerebral vasculitis (ill since 1994, diagnosed in late 1997), and one of the earliest symptoms I had was balance problems, including repeatedly falling down. It was very hazardous. I was originally misdiagnosed with ME/CFS, and this symptom and various other ones (including off-the-scale bladder incontinence) made me sure it was more neurological, and fight for new tests, and a rediagnosis. So this problem of yours could very well be due to the cerebral vasculitis.

    I suspect that stress triggered my cerebral vasculitis in the first case, though I probably also have a genetic tendency towards auto immune diseases, from my family history (lots of them - arthritis, asthma, eczema and MS - in aunt and cousins, close and distant). But I think stress was the ultimate trigger. I try to avoid it now like the plague.

  • Hi all

    Thank you for your answers to my question. Julia - the bruising I get is generally below my knees and covers my lower legs and feet, it happens when I am on my feet alot and starts off as bright red spots that all all under the skin and then they turn purple-ish and then fade away. If I just scratch or knock my legs at this time the blood vessels break. The sun has also triggered this reaction.

    I don't think they are quite sure what is going on with me whether my numbness is caused by the vasculitis or lupus it would just be a relief to have some answers and hopefully I can soon.

    I will try not to worry but find it so hard and I think when suddenly you find yourself not working and having so much time on your hands your mind runs away sometimes.

    All the Best

    Jenny

  • this is exactly like the rash I had with sjogrens I also got it when standing a lot and when flying which appears to be the altering air pressure. Hydroxycoloquine has apparently stopped my attacks but I haven't flown yet so that will be the main test. my consultant has suggested steroid cover if I need it but I am reluctant to get a prescription before I fly as it will affect my insurance

  • Hi Jenny, this sounds very interesting but very complicated and unusual. It might help if you could contact me privately so we can discuss it, then maybe we can share some of it with everyone else in this group. John jandsmills@btinternet.com or you can phone 01629-650549.

  • Hello John,

    Would you mind if I email you? I have so many unanswered questions about my condition, If you are able to throw some light my way and hopefully I can put some of those answers to my Rheumy, so I may understand why I have not shown any improvement, but getting more problems. Warm regards Julia

  • john and susan I also have vasculitis and primary sjogrens if I can be of any help in any questions please let me know I have done a lot of personal research as not much information available from my doctors.

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