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Rank: Member
Groups: Registered
Joined: 2/13/2010
Posts: 24
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Hi, everyone haven't been here for a while. Just thought i'd check in for an update. You may remember my first posts back in January following my miscarriage after IVF.
I have been very ill over the past 3 months ending up more or less housebound and totally dependent on my other half. After finally seeing a fanastic rheumatologist I have now been confirmed as having SLE lupus and have been on 5mg presnidrone for a few weeks now. My joint pain is much better although my knees are still stopping me from walking too far. I was given an injection in them by the rheumologist on Tuesday so hopefully they'll improve. I've also been struggling with taking any medication due to gastritis and oesophogitis which has been a nightmare but has finally calmed down a bit on the 3rd proton pump inhibitor I've tried. After the distress of the miscarriage and the weeks of joint pain in every joint in my body and fevers and sickness every night and being unable to eat I've ended up having panic attacks every morning and feeling suicidal so I was scared to be left alone. Even though physically I'm beginning to feel better the emotional aftermath is now hitting me like a ton of bricks! The rheumatologist was very positive this week though so I'm finally feeling there might be light at the end of the tunnel. My kidneys and liver are ok, she's not increasing the presnidrone because my joints are a lot better and if my knee injections work I'll be able to drive and walk again. She's also fully supportive of our second round of IVF, so long as I can improve my mental health which I'm temporarily taking diazapan for to try to quell the anxiety and panic attacks. Was most scared of not being able to go out in sun, but I don't have any rashes but I'm being careful with spf 50 lotion. Sorry if this is a long post but you were all so supportive I thought you'd like to hear how i was doing.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Angel Lovely to see you posting again but sorry to hear of your ongoing problems. It's great news that you now have a confirmed diagnosis and have received suitable medication to help you at this difficult time. Your rheumatologist sounds very supportive and sympathetic so that will really help. I think we sometimes underestimate the amount of emotional stress that we put ourselves through at times and it is only when we grind to a halt that it actually hits us ... and usually full on! It sounds as though physically things are improving so perhaps now is the time for a little rest and relaxation and time for "just you"; maybe a special treat, a weekend break or even a good book or film! It's no wonder you are emotionally drained after all you have been through but I'm sure there's light at the end of the tunnel and with another round of IVF plenty to look forward to. Don't forget there's lots of friendly folk here to lend a listening ear so keep posting Angel and let us know how you are doing. Take care, Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello Angel, I'm terribly sorry that things have been so rotten for you. I hope you continue to improve and manage to get through all this.Do keep posting,it will help to support your recovery,we are all here to listen. Sending love and hugs. Glenysx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Angel,
Sorry not good news regarding the SLE and RA but at lease now you have a starting point for getting the correct treatment. I hope the panic and anxiety start to abate when you have less physical pain to deal with. You can start to think ahead then. Take care and keep posting.
Julie
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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been tested for that and thank goodness don,t have it . But have the loveley sCLERODERMA OVERLAP insead . i have a lady arrcross the road ( dautHger ) who has R.A AND lUPUS . but sorry i have to ask her mother after her as she is a J.W and i am a christain .Her Perants are elders ( j.w ) But i get along with them fine and they have been over here doing garden swops . I also have met a odd few people all ladys with a great mixure of things Scleroderma R.A and lupus and M/S . I AM BEING TESTED FOR m/s AND SOMETHING ELSE .bUT I DON,T CARE AS I AM RUNNING ABOUT DRIVING DOING GARDEN . Amertripline was good with the panics and keeping me calm i think if you make the best off what you have its easy to forget it most of time . love christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Angel,
So sorry to hear how poorly you have been.
I'm glad you got a quick diagnosis and can now concentrate on effective treatment.
Lyn is exactly right when she says we underestimate the amount of stress we put on ourselves until it hits us full on.
Get lots of rest now and spoil yourself, and hopefully you can be much improved ready for the next IVF, and good luck with that.
Hope the knee injections help too.
Love, Doreen xx
PS If you ring the NRAS helpline they may be able to put you in touch with someone who has had both RA and Lupus for a while and is settled on treatment and could talk you through it.
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Angel
So very sorry to hear what you have been going through, and understandably a very difficult time. I m sure you are now turning the corner and we now have the nicer weather which I m sure helps us especially when you are so much at home, I know the feeling.
Look forward to hearing how things go, and wishing you all the best.
Love Julia xx
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Rank: Member
Groups: Registered
Joined: 2/13/2010
Posts: 24
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Thanks everyone, Sorry I should have explained as I did in an older post. My diagnosis has changed from PA by a horrible rheumatologist who was very rude about my trying to get pregnant before i had the ivf (he missed the fact I had lupus and signed me off his books because I was trying to get pregnant) He would have put me on sulphazalazine -thank god he didn't! My Gp thought it had progressed to RA and more recently my new rheumatologist tested me for lupus and I came up positive. I don't think I have both RA and lupus as far as I know. My RF was only slightly raised on my very first blood test and my CRP was negative although I do have some swelling on my knees & hip. I shouldn't really be on this site but I joined when I was initially told it was PA/RA and eveyone's been really supportive here! The diazapan is starting to help with the anxiety in the short term, but my stomach is very sensitive so it's a constant balancing act with the meds. I'm just hoping if I can calm down and come off the ceiling with the early morning panic attacks, the stomach inflamation might calm too. I can take steroids and have IVF but they won't let me stay on the pantoprazole for my stomach so I need a miracle. (Actually I need a few miracles-last chance of IVF at 40 now with lupus and stomach problems to boot!!) but I have to believe in miracles at the moment.
Angel x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Oh bless you Angel, you have been through hell. I am so sorry you have SLE but at leats you now know for definite what you do have and can move on from there- it is far better to know what one is dealing with (with anything) than to live in the dark and fear.
Thank God you have a supportive rheumy- a special find, and I am sure you will be helped carefully with meds options.
Please don't be offended at the suggestion of possibly using something herbal/natural alonside the steroids for the anxiety? You may have tried already but there are a few helpful herbs you could try, and even things like hynotherapy or CBT are excellent aids in combatting panic. I have lived with severe panic attacks since i was 17 and found CBT just a life saver on a few occasions.
I will keep you in my prayers.
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Angel So good see you posting,youve been very much in my thoughts. so sorry see your diagnoisis and i can understand the panic attcaks,anxiety im to diagnsoed with both RA and sle lupus plus fibromyaliga to start with i suffered enomous anxiety,panic attacks but sicne ive learnt like you i dont have kidney,liver damge,lungs and my treatment is starting to work i feel much easier mentally. so glad your on right track now,much more postive rheumy by sounds of it. I to have ahd the fear going outsdie stage-have just started using the factor 50 suncblock,and expermeinting with finding 1 to suit my skin. anytime youd like to chat by all means email me.my email address is under my profile. or ask nras for my number id be more than happy to help,be a lisetning ear. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Angel
It's good to have you posting again, but I'm so sorry to hear about your ongoing problems.
You have got to be gentle with yourself. Anyone who has been through all the trauma and anguish you have endured is bound to feel panicky, afraid and jittery.
Your physical illness is not good at all, and you also have to cope with mental trauma too, which will put a huge strain on your whole system.
It's good that you now have a definite dagnosis and a very understanding rheummy.
I will keep you in my prayers
Love Jeanxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Angel
You've had such an awful time, let's hope that the diagnosis is finally right and you can get some meds to suit. Don't worry about posting on here, lots of people have different forms of rheumatoid disease.
I had injections in my knees, and it helped a lot, so hope yours does too
Keep posting on here, and let us know how you are doing.
Lyn
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