bad news

just came from the appointment with my specialist nurse in Guys Hospital - London....i literally burst into tears at the appointment. I completely feel worst than crap! :(

i feel so tired, like i never been like this before. I struggle to work and to go to uni, to wake up and begin my day. Im so fed up of being tired at all times. My hair is falling, theres patches everywhere. I have gained 15 kilos in such short period that i feel shame to go outside the house.

Is it possible to live with this disease?

I was living normal a year ago and now i just feel that the world is collapsing around and i can't hold to nothing.

Either way i feel grateful to be alive.

My nurse proposed me a treatment with azathioprine? Is anyone familiar with this drug?

love and light!

clara

17 Replies

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  • Hi Clara, I know that every case is different but a year ago I was in a very similar place to you. I remember going out for a meal with work and by 9 pm I was nearly asleep on the table. I literally couldn't wait for the bill and had to leave my money and go. That's just not like me. I love to socialise. I feel much better now after making tweaks to my lifestyle. Physical work such as cleaning Windows and gardening is kept to a minimum. My daughter cleans the house. I exercise moderately; swim twice a week and walk twice a week. This keeps my body moving and as strong as it can be. I fought for a long time, trying to keep my life the same but eventually realised that we can't do it all. I hope you get through your studies and the meds help. You know your body and its limits but I can't recommend gentle exercise enough as, ironically, it doesn't always make you more tired but can boost general well-being. Hugs xxx

  • Hi Claradias

    Thank goodness your specialist nurse was understanding and your Rheumy proposes Azathioprine for treatment. I've had good benefit from the drug, just have to watch your blood cell counts with it so you will have regular blood tests. Your trying to do a lot with work and Uni and Lupus makes this so hard!. Look after yourself. X

  • Azathriopine gave me my life back! It takes a while to get into your system and you have regular blood test to check your blood levels. Other than that I've had no side effects at all. It's really made such a difference. I still have symptoms especially when I've over done it. I couldn't work or have a social life ,I even found it hard to walk etc etc . I'm back to work and although I don't paint the town red I do meet my friends. I really hope this works a treat for you . Good luck x

  • Azathioprine worked for me and I am still taking it. It will get better and you will lose the weight - I have lost 6 stone after I gained so much weight. Keep your chin up.

  • Hi Claradias, I was diagnosed with SLE which affected my kidneys at the age of 24, was on prednisone for 3 years and azathioprine (anti rejection drug) about a year I think. It worked for me and since then I have not needed any medication (apart from a daily low dose aspirin). I am now 62. I do know it was an awful time with many symptoms but I did get back to work part time before I finished my medication and have led a reasonably 'normal' life since, with some tiredness thrown in and a few aches here and there. I know there are varying degrees of SLE which affect people differently but with the right treatment there will be improvement.

    My consultant has recently suggested trying hydrochloroquine (anti malarial) which can help dampen down lupus activity and help with tiredness and hair problem and I did read somewhere that lupus can burn itself out after the menopause - so there is light at the end of the tunnel!

    Be kind to yourself and take things easy when you need to.

    Xx

  • That is a very refreshing post terri, thank you so much for giving hope xxxx

  • Azathioprine works for me, I still take steroids but at a much smaller dose than before the aza. It can be a struggle at the beginning of the treatment with stomach issues, but if you persist it is worth it.

    Limit your tasks don't try to be superwoman anymore. Know your limits and stick to them. I used to train at athletic standard, then the lupus just came out of nowhere and knocked me for six. I felt just like you do. It took me five years to finish my degree instead of three, but I got there.

    Hopefully you will soon feel better, and if not your body will just get used to it.

    (Diagnosed age 16.. Now 38 with a four year old and a super salary)

  • Let student support at university know about your diagnosis and how it effects you. They can be very helpful.

  • I took Azathioprine for a few years but had to stop because of elevated liver enzymes even though it was controlling my disease activity for that period. I think it is a very useful medication and would stick with it while also addressing your diet and lifestyle, now is the time to try and control your autoimmune condition because it can vary in degrees so much...do feel free to ask about anything else please.

  • Clara hunni I felt like you do x I was diagnosed 2 years ago and was so poorly for the first 18 months, I wandered if I would ever be normal again! I had just started college and was looking forward to going to uni to train as a midwife, and I ended up dropping out because I was just too tired, scared and sick.

    I went back to work in august. It has been a struggle at times, sometimes I don't know how I get through my shift as I am so tired but I manage somehow! I have also just been diagnosed with antiphospholipid syndrome which was upsetting for me too and I spent about 2 weeks feeling depressed and crying a lot. I still want to be a midwife and am thinking about going back to college this year :) I don't take that drug but am on a cocktail of others and they do help. Things will get better hun, just keep fighting, get some rest and work with your specialist to get the right treatment xxxxx

  • I totally sympathize with how you are feeling but it will get better once you get on the right medication for you and start to manage your lifestyle for lupus. You will have to make adjustments but you will eventually get back on an even keel. I'm on Plaquenil which has been fine. I've also tried Azathiprine and Methotraxate but my liver didn't like those meds. I've started Benlysta infusions and that seems to be the magic bullet for me. Docs say that it takes time to "kick in" but I immediately felt better for about 5 days afterwards. My next one is in a few days and I can't wait! One thing I would caution you to do once you figure out what's right for you is try to avoid any situation where you might get sick or stressed out because that can bring on a flare. All this to say it does get better!

  • I wish you all the best , you are trying so hard you will get through this, I wish I could help you over the medication but I have not heard of it , has of yet, you never know. Keep smiling and I wish you the best don't let this get you down to much 😀 best wish and God bless . Christine.

  • You poor thing. I am also about to start Azathiorine so have been very cheered by reading comments about this drug on this post. I don't have Lupus but do have a very systemic broad type of Rheumatoid Arthritis and thyroid disease. This can also affect young people but doesn't usually improve/ remit after the menopause. I have tried three drugs for my RA so far but haven't tolerated them at all so am now going to try Aza.

    I may be 52 but I feel just as you describe - wiped out, pain ridden and really low with fatigue just now. My life currently revolves around my bed and the odd dog walk. As a young woman I lived on steroids because of severe eczema and bouts of alopecia so I relate to Lupus sufferers more than to RA sufferers in many ways. My eczema and alopecia disappeared entirely with the menopause and I now have a much admired head of hair! I look better in many ways than I did at your age and stage. I really struggled as a student because of my poor health.

    I hope it cheers you to read how well many have done with Azapthioprine as it has cheered me? I also hope you feel a bit better that Lupus can sometimes burn out or be put in remission by these drugs and lifestyle adaptations. There seems to be a lot of hope for you so hang in there and good luck to us both with the Aza!

  • Hi, sorry to hear what you going through. I have had Lupus for more than 13 years now. With Lupus you have to change your lifestyle and needs a lot of planning ahead. I have since learnt to pace myself and find that it help. When I am in pain i try to relax as much as I can and make sure I eat well. I gained weight in 2005 from size 14 to size 22. I have since lost most of the weight and am on size 16 now. I refused Azathioprine so am on Hydroxychloroquine and prednisolone. If you get more information on how to manage it then it gets better. We are here for you if you need information, you are not alone. Lupus is so complicated and what works for me might not work for you! Work with your Rhuemy I know you will get there. There is hope! Take care x

  • This disease is cyclical. It often feels like it has a mind of its own. I keep reminding myself that at some point, the symptoms ease up. Although I can get down, I've managed for 42 years. I read the medical books when I was first diagnosed, at the time they said my life span was 7 years. Treatments keep improving.

  • Im so overwhelmed after i read all this replies! :)

    thank you so much to everyone that put some time to share their experience and cheer me up :) you are all wonderful people!

    my blood results were all normal (good news), although still feeling the same symptoms. Next appt will be in 2 weeks time!

    love an light to you all lupies! x

  • I do not know anything about the drug azathioprine.

    I do not have the website readily available but there is a website "The spoon theory" which helps a person consider portioning out energy. Hugs, clara

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