Hi everyone, I have been a long term APS sufferer. I had my first stroke at 29 (luckily fully recovered physically) I am now 59 (it took ten years to be diagnosed).
Since that time I have had several TIA's and dizzy spells and regular severe fatigue attacks.
My aches and pains started to become a major issue three years ago and I was diagnosed with PMS and put on steroids. But I am not convinced it is PMS because when I have bad flare ups the pain lasts all day and through the night, it does not, like PMS start to ware off as the day progresses.
I have been told that I do not have Lupus despite strange rash on my cheeks, just really worried.
The pain is really getting me down and is debilitating in my wrists, fingers, shoulders, back and now my thighs (making it difficult to stand up)
On top of this I have recently come out of a three week spell in hospital and four weeks additional time off work with severe Cellulitis, nearly loosing my leg.
Not in a good place at the moment with the constant pain, I suppose it's just one of those bad days and on top of that I am trying to keep a job down, which is not easy.
I am due to see my Rheumatologist soon.
Any advice anyone
Written by
Rockydog20
To view profiles and participate in discussions please or .
SLE is difficult to diagnose unless the clinician is actively looking. There are various rashes in Lupus. Although the malar rash is cited, most do not have this specific rash. It’s called a “butterfly rash” which appears on the cheeks but does not cross the folds that separate the cheek. A biopsy would confirm.
Unfortunately, non-specific symptoms are characteristic of SLE but recording your symptoms and flares is very important. You might also write down every illness from childhood. All this information is important when you see your rheumatologist.
You will be probably given a wide range of blood tests and other tests to find out what is going on.
If you want more information, please contact me at Lupus Patients Understanding & Support (LUPUS) on HealthUnlocked.
Hiya, I enclose a paper for your, one thing to add is it is common with this disease to have a Thyroid problem, which can be missed due to the over reliance on a very unreliable TSH test. I was left 15 years with no diagnosis, once I did private tests, ordered online from reputable companies, (given to specialists and GP), it was clear I had Hypo thyroidism rather badly and also B12 probems, it is very important to keep an eye on these things and also levels of Folate, Ferritin and vitamin D, if deficient it all adds to more pain. the-rheumatologist.org/arti...
It could be so many things, the pain you describe is familiar to me, mine relates to sjogrens, including the Cellulitis!I think as you have an appointment coming up, list all your health symptoms and questions, so you are prepared to make the most of the time.
Hopefully they will examine everything and look at the whole picture. x
PMS… is it possible you could be experiencing PMR? Polymyalgia Rheumatica?
It is often diagnosed by a rheumatologist by a very elevated Inflammation markers as well as stiffness and pain across thighs and shoulders- making getting out of bed very difficult, lifting a tea cup to lips excruciating. My understanding is it does get a slight bit better as day wears on.
( however I believe about 20% of patients do not have terrible high markers. I can refer you to a group here on Heath unlocked that is truly stellar at statistics on this backed up by peer review up to date medical journals and referrals to top notch GP’s and rheumatologists in your area for best treatment of PMR / GCA.)
Steroids are the mainstay for GCA treatment. Higher doses are initially given to control pain and bring down inflammation. The goal is to start tapering down to find the patients lowest tolerated level.
The issue and be- to taper down too quickly ( which most doctors want to do) will result in a flare.
Lupus: heed the wise words from Ros. There is a wonderful administrator on the HealthUnlocked forum called PMRpro. She herself has both lupus and pmr.
If I have misunderstood your abbreviations, I do think it’s a possibility you might consider being investigated for for PMR.
I might have taken your post in another direction entirely! If I’m terribly off base, forgive me.
I’m not sure what PMS is, other than Pre Menstrual Syndrome. I’m pretty sure that can’t possibly be what earned you a “ diagnosis” and a steroid prescription! 😊(is there another condition that is PMS? Sorry- I’m still learning every day. )
No problem- it reads like classic PMR to me- and perhaps you tapered too soon.
Fear not!
I know where to send you .
But- stick with me on the steroid side of things IF you have have problems with it swinging your INR crazy or the pred makes your tummy upset,
The ( mainly) ladies will have great tricks for you. ( they took me under wing when I needed help with steroids) . I came to them as said… I don’t have PMR, but I need help with steroids. You are the ultimate gurus! May I be your stray kitten you take in?
They did indeed take me in! ( I also have vasculitis- so was on pred.)
The trick- as they will teach you- is the timing of taking it- -about 4:00 am. To get ahead of the cytokines- which naturally signal - Send in the early morning hours ( 2-4 am) so work with this to maximize the efficacy of the pred.
Keep pred and a bit of yogurt by bed - one lady posted a tiny little thermos she bought on Amazon ( for baby food on the go) so you really don’t even wake-up too much.
Anyway- there is a great selection of all you need under pinned posts, and PMRpro, and a host of others will be of tremendous value to you.
A few also have lupus and APS- not many.
Search under HealthUnlocked - and you will find PMR/ GCA
You have been diagnosed by APS you say. A diagnose of APS should consist of a clear and typical symptom (like a stroke and a clot etc) and also from the 3 antibodies they take twice with 12 weeks between the bloods. They are 1) Kardiolipinantibodies, 2) the anti-beta-2-Glycoprotein1 and finally 3) Lupus Anticoagulant.
The last one is not the illness Lupus but one of the 3 antibodies they take twice to give a diagnose of APS.
The diagnose is important but the Specialist who works with people like us with our autoimmun illnesses and has the knowledge that is I think (live in Sweden) the most important thing. So therefore I hope that you will now meet a Rheumatologist who is very knowledable in Lupus (SLE), RA, Sjögrens, APS and Thyroidea-illnesses. They go hand in hand and it is very difficult to distinguish between them even for a Specialist I can tell you that.
APS means too thick blood !!!! that has to be thinned in the most smart steady way.
I have used Warfarin as my lifesaver for over 10 years now.
Try to learn as much as you can and read "Sticky Blood Explained" by Kay Thackray.
I hope your Rheumatologist knows about APS otherwise....... change Doctor.
Have you taken those 3 bloods I speak of ? I guess you have as you have got a diagnose and a stroke long time ago also. Perhaps you are already on Warfarin but I doubt you have reached the correct level. It is very individual and some of us need a higher INR to be without TIAs etc. My Specialists here want me all of them on an INR of 4.
Good Luck with the Rheumatologist. I know nothing of PMR as I do not know what that is.
Sending you lots of love, l can really relate to everything you've mentioned.It sounds like your struggling witch isn't great apart from the cellulitis l feel your describing me.
It took about 6 years to be diagnosed, l actually went private due to the long wait l was so it was such a relief to have a diagnosis.
I've had to retire from the NHS as a ward sister which was so awful as l loved my job.
I'm hoping you will feel brighter ✨ soon sending you energy light and love.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
APS 
Completely lost with my APS and what to do next ? 
Severe Pain caused by the damage and clots I had because of APS
