Happy 1yr Lupus Anniversary to Me!

Well friday will be exactly a year since I was diagnosed with lupus. I saw my consultant today who could not believe I was the same woman who walked into his clinic a year ago.

I have been on azathioprin for a year .. and have been off steroids for two months .. the withdrawal was horrific .. but I have done it. I have also lost a steady 1lb a week for the last 2 weeks (it just started falling off with healthy eating and the 6 week steroid free mark), I am now almost a stone lighter than I was a month ago! ..

I feel postive, great and a new woman. I have energy. I still have tired days but they r once a month rather than every day. I have also been ulcer free for 6months .. the first time in 25 years!

my hair feels great, my skin looks great, the headachs r rare! even the confusion is subsiding!

I just wanted to say that there can sometimes be a positve part of a lupie life and I just want to share it :-)

happy lupie day to me!

20 Replies

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  • Thank you for this fabulous post - it's both reassuring and uplifting. I am in the early stages of my diagnosis and have been on steroids for 15 month and have just started on azathioprine 10 weeks ago. I am hopeful that I will have a similar positive tale to tell next year.

    Take care and thanks again. :-)x

  • Happy fantastic 1 year anniversary

    Thank you jemmyjemjem for posting this message. Last spring I was diagnosed with Lupus, and have yet to reach remission. This was the positive boost I needed to keep carrying on (think positive) - knowing I too eventually we get there even though it might take a bit longer. Once again, thank you for positing your story. I wish you continued good health.

  • Happy news, well done, I'm sure it hasn't been easy to get to the new you. Feeling good like this - doesn't it make you feel alive and capable of facing anything? I love that the first thing you mention that improved is your hair and your skin, the rest comes after - we so miss not looking well, don't we. Keep up the good work!

  • HOORAY: am LOVING your good news! I'm 2 years on from start of treatment and feeling similarly (except....: just gotta get the chronic OUCH big time bursitis in my worst forefoot to well & truly settle down...it's so reactive that I'm on holiday here in the mountains, sitting on the balcony all day while the others go walking....posts like yours remind me to keep calm & carry on pursuing effective treatment, even for very specialist issues that are only secondary to my version of lupus...). Thanks jemmyjemjem!

  • oooo a holiday in the mountains sounds heavenly, we are not long back from France. I am sorry to hear you have a sore foot and I hope it heals quickly !! .. nmaybe you need more wine .. the only thing you can do with Lupus is think calm and carry on, otherwise it beats you, and just treat each new thing as it comes .. big hugs .. j x

  • Too right: am about to head out with the gang for supper and some good mountain wine! You are great: thanks for making me laugh! And thanks too for all the info in your reply, below to flippity: the details is REALLY REALLY HELPFUL!!!!!!!!

  • Thanks luvly people .. still feeling bright and beautiful today .. and I have even been for a long walk on the beach with my friend and the dogs ... its 26 degrees down here today and it felt like we were walking along the med ! .. perfect .. just need a glass of wine to go with it .. although 10am is pushing it for wine o'clock .. even by my standards :D

  • Hi, thank you for giving us hope and soooo pleased to hear that things going well for you. A great boost for you and all of us to hear x

  • Happy 1 year anniversary! Its good to hear that you are doing so well!

    I'm approaching my 2 year one soon but I am still on 5mg of steriods! But I know with the right attitude that I will get down to 0 eventually.

    Hope the following year is filled with good vibes and good health!

  • Hi Flippity .. I decresed it by 1mg a day every 2 weeks, i was on 15mg, and on 100mg of aza. I dropped from 15mg to 10mg after a month and went cold turkey, worst thing ever! Then I stayed on 10mg for 4 months, then started to decrease it down, it took 5 months in total. When i dropped from 6mg to 5mg, it was bad, but I increased the aza to 150mg. The next killer was the 2mg to 1mg, just changing it by 1mg really effected me, but again we increased the aza to 200mg per day, getting off them from 1mg to nothing was ok, I did end up with Parotitis, but we have discovered i have a salivary gland stone, might be lupus related, but am being refered to MFU.

    I am now almost at maximum aza dose, but I tolerate it well with no side effects and my bloods look great. My consultant even told me that since i have been stable for a year, that we can try for another baby !! (we aren't going to .. we have 3 boys which is more than enough!)

    I have been out in the sun today walking the dog, aprt from being a little pooped I have no other side effects.

    I did not realise how additive and bad the steroids are. I gained 2 stone in weight, I became aggitated and probably more snappy than before. Also they help you heal, which takes alot of getting use to when you stop taking them. I got bitten by a horsefly 7 weeks ago and its still not healed?!? .. but also I guess the aza is suppressing the healing. Oh and i have the worst hayfever I have ever had in my entire life!!

    I would encourage everyone to try and get off the steroids if you can, easy for me to say now i am off them i know!

    I feel great, I can honestly say that i have had the best 6 weeks school holidays with my children ever! I was only really tired once or twice, we even went camping for 10 days, i did draw the line at kayaking!

    there is light at the end of the tunnel, I think the fact I have amazing friends and family around me has helped too, but I decided when I was diagnosed that I would not let it beat me and surely I cuold not feel crap for the rest of forever.

    Just got to plough on with the weightloss as the husband and i are having our first weekend away without the children in 7 years in 4 weeks time ... sunny spain here we come ...

    I wish you the very best

    J xxxxxx

  • Wow! Looks like I have a long road in front of me, but its great to have that inspiration to motivate me! At the moment my bloods are stable and the doctor is thinking that by my next appointment in December that I could start tapering down my steriods! Yay! Because I've been stuck on 5mg for about a year now!

    I'm so glad that you are off steroids, you sound much better for it! I guess there are always going to be ups and downs to having lupus and even with no steriods, you still have to tolerate hayfever! Luckily the weather is changing soon!

    Have fun on your holiday- isn't it nice just to have a break and forget about the world for a bit? Absolute bliss.

    Don't forget the sunscreen!

  • No se si me puedan entender, es la primera vez que entro a esta pagina y la encontré en ingles así que le pase el traductor...Me alegró mucho saber que usted esta controlando bien esta enfermedad, a mi me detectaron lupus hace 1 año y medio y cuando me dieron el diagnostico se me vino el mundo encima pues tuve una hermana con lupus que murió a los 15 años, yo empece con derrame pericardico así que estuve 1 mes con descanso medico sin poder trabajar, ahora me siento muy bien han ido bajando las dosis de tratamiento, aun sigo con el tratamiento de Azatioprina 100 mg, Hidroxicloroquina 400 mg y Prednisona 2.5 mg diarios, mi medico me dice que estoy bien y espera bajarme las dosis en noviembre, aun no tengo hijos y me sugirieron no tenerlos y eso me pone triste, pero al leer que su medico le ha dicho que podría tener hijos en estos momentos me da esperanzas de pensar que en algún momento yo pueda llegar a tener hijos; mi temor solo es pensar si con el embarazo yo podría tener complicaciones o hacer que el lupus se active y sea mas agresivo, espero continuar en contacto con ustedes, gracias...

  • Hola, gracias yu por su respuesta, espero que el traductor trabaja y se puede entender esto. Lamento lo de tu lupus y su hermana. Tuve mi segunda y tercera infantil, mientras que tener lupus, pero fue diagnosticada, por lo que no eran conscientes. Mi segundo embarazo no era muy buena, he desarrollado un coágulo de sangre, pero me trataron. Sr. tercero embarazo estaba bien, sin complicaciones, yo estaba en disolventes debido a que el coágulo anterior y bloqueadores beta para las palpitaciones del corazón la sangre, pero llegué bien. Ha sido una lucha para llegar bien, y me alegro por fin me siento mejor, y estoy muy contento que estoy fuera de los esteroides. Espero que usted es capaz de obtener la medicación pronto. mucho amor x

  • So happy for you! Congratulations :)

    Jo x

  • You are an inspirational to us all! :-) I was feeling down this morning as i have a long road ahead of me. My consultant started me on 5mg of Prednisolone today! I had an injection on my bum yesterday! :O ...... But reading your msg has inspired me to fight back and get better like you! Im warey what is really involved in steroids! You keep going and smiling and having faith. Well done to you.Made me smile and you give me hope. ;-)

  • oh I am so pleased I made you smile. I am still having a jolly lovely week .. and will be celebrating my lupus anniversary tomorrow with wine! .. I have decided if I have to live with it I might as well celebrate it :-) .. have a fab weekend and I hope the injection works! xx

  • Oh I had no idea it was so hard to come off the steroids :(

  • I think it depends on the dosage you are taking, obviously I was taking a high dose every day, and I was dependant on them as we did not have the aza dosage quite right. But once we got that right, it was very easy to get off the steroids :-) ... until you need to come off them I guess you don't know how hard you will find it, they are addicitve, which is a pain ! ....

  • Hi all, thank you for all your wished, I celebrated with a pint of cider and a HUGE saucepan of mussels in white wine .. YUM !!! .. still feeling positive .. off to doc tomorrow for a referal for a salivary stone, and it would appear that I have also got a rotary cuff misalignment, basically my shoulder is popping in and out after getting slightly pickled back in the summer and thinking sumo suit wrestling and tug of war was a marvellous idea ! ... keep smiling ,.. jem x

  • Thank you Jem xxx

    It is really good to hear you are feeling so well :) Everything you read seems to be quite negative as people are suffering with pain and tiredness etc, and I thought I was going to be ill forever! I hope in a years time I am able to post something like this! xx

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