Positive at last!

Hi Everyone.

Just an update and some positive news.

Some of you might remember from previous posts that I've seriously struggled for many years and had an absolutely awful time last year, I went to see the Prof D'cRUZ at St Thomas. After a nasty flare last year I never felt as if I fully recovered and even though I could function I never felt as if I had come out of the flare fully.

I went back to St Thomas's on 7th March and saw the amazing prof D'Cruz, he increased hydrox from 200mg to 400mg, gave me a steroid injection of 80mg, and put me on a drug called mecaprine which is unlicensed in the UK, I was quite wary of taking this drug but decided that Prof D'Cruz is the best in the business and I had to trust him. Thank God I did!!!

In the last 3 weeks I have somehow got a life again!

For 7 years I havent been able to have a night out as it would put me in bed for atleast a week afterwards, yet this is the 2nd weekend in a row that I have been out... in fact to tell the truth its the 2nd weekend I have been out with a group of friends and my husband and done a pub crawl!! I can actually drink alcohol again, although I am being very sensible and only having a few, I can walk from pub to pub easily.

The fatigue which was quite extreme has now subsided, infact I would go as far as to say I feel slightly hyperactive - I cleaned my house from top to bottom at the weekend after years of relying on a cleaner as a good clean would again put me in bed for a week.

I was taking naproxen 3 times a day, co-codamol 4 times a day mixed in with tramadol or dihydrocodiene, for the last 2 weeks I've managed to reduce all of these drugs, I havent had any tramadol or dihydrocodeine for 3 weeks, no co-codamol for 2 weeks - I can now see how addicted I was to these, and I'm down to one naproxen a day usually towards the end of the day.

I have had such a good time, me and my husband have done nothing but laugh for the last 3 weeks, we've spent so much time together having fun, where as before I would go to work then go to bed, we could go for days without seeing each other.

My sense of humour has returned and instead of suffering with terrible brain fog I have found myself being quick witted again.

I always remember before I was ill I was a fun person, I did anything for fun, I was spontanious and at times quite silly and I can feel that side of me coming out again.

I have been worried about this subsiding and the drugs wearing off, I know how unpredictable Lupus can be and I know at some point I will go into a flare again.

I could worry myself sick about this but have decided to put it to the back of my mind and enjoy actually having a life again.

Goes to show..never give up hope!

x

9 Replies

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  • wow sounds as if you are having a ball at the moment!

    I suffer from Brain fog and just had a TIA a few weeks back.I am ok but wondering if my brain will ever return to my former self!

    Did the doc put you on the medication especially for the brain fog or pain and fatigue?

    I saw a doctor a while back at St Thomas and he diagnosed me with Lupus after lots of messing around with other doctors reports!

    I do hope you continue in good health and enjoy your new found energy.Long may it last!

    Kb281

  • Hi

    Thats exactly why I went to St Thomas, so much messing around with other Drs. I went back to my old specialist after I had been to St Thomas and after a massive arguement he actually admitted that he didnt know anything about Lupus, I've got Hughes syndrome as well and he admitted that he didnt think that would affect me as I'm only 30 so even though he knew I had it, he didnt think I needed treatment - which I obviously do!!

    The Professor at St Thomas changed/altered meds for pain and fatigue. I've also got Dermatomyositis which affects my skin and muscles and has a high cancer risk, so the mecaprine was to help get that under control.

    I think I also feel better just knowing that I'm finally seeing the right people, and knowing that I'm not mad.

    I'm sorry to hear about your TIA, St Thomas think that I had a TIA last year and thats why I was having such a bad flare, but the hospital I was originally treated at didnt do the right tests for a definate diagnosis, cant really blame them for that as my old specialist hadnt passsed on about Hughes syndrome.

    I hope your brain fog does subside and I know exactly what you mean about returning to your former self, I felt absolutely hopeless last year but try and stay positive.

    Take care

    x

  • Marvelous news! I am so happy for you, & look forward to hearing more about the fun things you are getting up to. XXX

  • Reading this have given me some hope I'm really struggling at the moment and miss the old me hope she returns soon before I loose more than my sanity x

  • Keep being positive and you will soon be back to your old self, or at least as near as damn it! Like you l became defeated so many times, l now realise help is out there which is wonderful , now the rest is up to me .: )

  • So, so pleased to hear such fantastic news!!! X

  • Great news! Glad to hear you are feeling so much better - and spring is just round the corner! xxx :)

  • So glad for you! Dr D Cruz is amazing! xx

  • What a wonderful and uplifting story, people like you give us all hope. l too am a similar kind of person as you and found it so difficult to come to terms with my illness as it has ruined my life as l knew it. After 2 hard years of treatment and finally realising l was in denial about so many things, with the help, support and encouragement of a wonderful family and circle of friends and of course my amazing Renal consultant and many other consultants , l am finally on the rd to to getting my life together again. I have only just joined this fantastic group and all the positive and helpful advice has really kicked me into gear again - Thankyou all so much and heres to my bright future . : )

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