I was diagnosed with SLE Lupus in December 2000, i have battled with the disease for years until 2011 when i managed to find a way to cope with the disease. I changed my lifestyle completely no late nights, stopped drinking, eating healthily, exercising 4 times per week and had to accept that working part time is all that the i can manage, Things took a nasty turn for me at the later part of 2012, i was finally diagnosed in March 2013 with Endometriosis after under going laparoscopic surgery. I still have not recovered i feel like i am going through the wars. My lupus has flared up since August, i don't usually take Tramadol for the Lupus pains but everyday this week i have taken the drug to control the pain, i am house bound most of the time due to the two conditions.
I have constant back pains L4/ L5 C5 prolapse disc, Chronic pain of the abdominals, back pain, knee pains and headaches, Chest pains ( pleurisy) and Depression, and Chronic fatigue.
I am currently taking the following medication for my lupus:
Hydrixychoroquine Sulphate (200mg x 2 daily)
Mycophenolate Mofetil (500mg x 6 daily)
Prednisolone 30mg daily
Tramandol 50mg (when required)
And for the Endometriosis:
Zoladex implant (every four weeks until February 2013)
Naproxsin 250mg (3 x daily)
Tibolone Tablets (HRT) 2.5mg (1x daily)
I believe it the treatment I'm having for the Endometriosis which has triggered off my Lupus, is anyone else going through what I'm going through or can tell me if im on the right medication to control my Lupus attack ( just so painful)
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Monica82
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my mix is similar to yours (SLE, cervical/lumbar/sacral spine//pelvic girdle pain/GI trouble etc etc with endo (am a DES daughter), + chest/upper GI conditions etc + everything that goes with this: chronic fatigue/vertigo/cognitive impairment etc etc), and my very worst phase of persistent acute pain was mid 1990s - early 2000s. i have been virtually housebound for long periods. diagnosis has been a long drawn out affair over my whole life. so treatment has been hit & miss until very recently.
am no expert, but, from what i understand of our sort of mix, seems to me you're doing all the things you need to to help yourself...and your meds do sound like the right sort of thing to me. am hoping you have drs you can really talk to - or a lupus nurse. in my experience, these long passages of extra severe symptoms can seem to go on for ever, but they will pass. am 60 next week, and am especially feeling for you cause seems to me we have stuff in common to a degree and i have been coping with these really rough passages all my long life, feeling the way you describe (hope you'll forgive me if we're a similar age!)
i'm pretty sure/hoping you'll get good replies to your ? here - better than mine. i had to reply even though i don't feel i can do much more than say: hang in there! am guessing you've been to the endo forum here on health unlocked. i have come to feel that it is v complicated treating gyn probs like ours which, in my experience do interreact with lupus treatment....eg i managed better once off HRT. for headaches/migraine i use mefenamic acid 500mg which has also been a long term mainstay in managing my endo. but prednisolone tapers are what has really helped my mix of pelvic girdle pain. i'm not on myco yet, but am hoping to be soon.
I hope you have a good birthday next week. Mefenamic acid was a nightmare for me, it give diarrhoea for 20 days , the Mycophenolate Mofetil have been wonderful for me but I'm on high dose. My pelvic pains, hopefully will reduce once i finish the Zolodex injection in Feb 2014. Having read your post i think my lupus flare up came about after starting the HRT, i started to get headaches first than everything else went there after. I will keep on thats all we can do.
Thank you for listening and responding back to me.....i was beginning to think I'm the only one with this funny mix of disease.
First if all, I'm so sorry to hear about your struggles, these diseases are a real pain in more wats than one!
Like you, I was diagnosed with SLE and APS in 1999 and had a bad time stabilising it, having two mild strokes, DVT Etc.
Pain management is very important to let you cope with your problems...does your health authority have a pain management clinic? They can go through all the possible ways of managing your pain including different drug combinations, diet, exercise, mental approaches like self hypnosis and CBT.
Another option is that some GPs and outpatient departments have clinics for people with chronic conditions like lupus.
I hope you find a combination that works for you and please let me know how you get on. Xxx
Hi Hun, thank you so much for reply, I have been referred to pain management clinic in October and last year i had 12 weeks of CBT which allowed me to identify the triggers for my attacks. I was fit and well and was working as a Personal Trainer / Fitness instructor everything just went down hill. I look worse than my clients. I want to laugh because now they are the ones offering to take me out for walks and outing. I have been told i have to have the Zolodex injection for 9 months. My last injection will be Feb. Im only 31 years olds thats why i have been put on the HRT to help with the bad bad hot flashes and sleeping problems. Its so strange not being able to even run for a bus, lift my own shopping and having to relay my care worker i feel so helpless.
I have SLE and suspected endometriosis, which got progressively worse approaching the menopause but got better a few years after I reached the menopause. (Main abdominal pains were always attributed to the SLE but I am fairly sure it was Endo.) Apart from the menopause, I think that also eliminating wheat from my diet has helped (but you may be doing it already, as you have changed the diet as well).
Hi Hun, thank you so much for reply, Im actually only 31 years old but i feel like im in 60 or even older with these terrible pains.
My fingers hurt all the time, chronic back pains and abdominal pains and irritable bowels. I have been told that the irritable bowels is because of the Endometriosis, that it sometimes attaches it self to the bowels hence the back pains and pelvic pains. I cant even sit up right to eat. I have to sit in recline position most of the time.
I was fit and well and was working as a Personal Trainer / Fitness instructor everything just went down hill. I look worse than my clients. I want to laugh because now they are the ones offering to take me out for walks and outing. I have been told i have to have the Zolodex injection for 9 months. My last injection will be Feb 2014. Its the Zolodex injection which have bought on the tempoary menopause, thefore i have to take the HRT. having read you post, i think its the HRT which may have triggered my attack. i was fine until begining of August before starting the HRT. I will mentioned it to my consultant. Im fountaunalte that i was diagnosed quickly, but it meant going privately. I have had a nighmare with the NHS with the Gynyne problems but they have been good with my Lupus.
On another note its also been a battle to get joy with the DLA until some news this year.
I will keep you posted on how i get on. Many thanks for your reply. x x x
It appears it was not the lupus causing me the problem, it was the treatment for endo that was causing me the problem. I ache all the time, joints hurt, can't sleep and have put on 2 stones. I exercise at least 4 days per week and it appears to help.....but i really ache, ache and its even worse after my Zolodex injection. I have had 6 so far and i am meant to have 9 in total, i don't think i will have any more. Its ruin the quality of life i had, i have been unable to work. I have constant pelvic pains which i never had until going on the injection. However the steroids are now down to 7.5mg great stuff, but my face still looks like a ballon.
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