I am new on here. I have been seeing the Rheumatologist since 2013 without a proper DX.
My problems started in 2011, aching all overplus generally feeling unwell, gradually got really stiff and was in really bad pain.
I went to GP, thought it was polymyralga rhumatica, he did blood test ERS was 100 so he put me on 15mg of Prednisone which worked great felt back to normal self.
He he tried to reduce them down gradually, as you do for polymyralga rhumatica, but ever time he did ers went back up,symptoms came back, hence referral to Rheumatologist.
Rheumatologist wasn't convinced it was polymyralga rhumatica and started to slowly take me off steroids to do pet scan.
In the mean time, October 2013 when abroad on holiday, while I was there feel really exhausted, my legs feel like lead and was very breathless and generally felt really unwell and achy. The day before we went I had had a flu jab, I thought it was that, that had caused. When I got home still felt the same, so thought it was virus. It didn't go away so I went to GP.
She did x-ray ECG both normal, she to thought it was virus. This went on till may then saw Rheumatologist who didn't really know what was going on, just thought it was because he was lowering steroids.
July 2013 had petscan, it showed inflammation in shoulder joints and hips. Rheumatologist wrote to me saying in shoulders was some consistencies with polymyralga rhumatica my hips thought it was a form of arthritis, but I have never had a firm DX.
I test positive for an auto immune disease, but still I have not been DX with which one??????
I also keep having abnormal kidney readings, during the episode October to may it showed I had chronic kidney disease stage 3, then further test show recovery. Then they come back bad again.
Anyway to cut very long story short since the episode on holiday, I have had vary symptoms, which are intermittent. I might go weeks, even month, with just a bit of stiffness and aching but then something flares up. I get really fatigued, stiff, achy, joint pain, hot flashes, and numbness and pins an needles in hands along with mild temperature, (my normal is 97.6 degrees, goes up to 99.8). It always seems to start when we are abroad. It can start off mild while we are there, then when we get home it is worse.
I am not on steroids at the moment just arcoixa (non steroid), which help when I am going through a bad spell.
I have thought for a while it could be lupus, is there anyone on here that thinks the same????
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Daisy1991
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I'm fairly new on here too but your story sounds familiar, I was diagnosed with Undifferentiates connective tissue disease 14 years ago, I then became very poorly with joint pain and overwhelming fatigue, flu like symptoms with that awful deep bone achy horrible feeling along with many other symptoms in 2010 and was told it was fibromyalgia, my symptoms have never gone away but have got worse over the last 18 months, I've just been seen by a rheumatologist who told me with my recent positive blood tests and symptoms I definitely have Lupus but mildly, for which he's started me on Hydroxychoroquine. He then states in his letter to my GP that I have cutaneous lupus (which is limited to the skin) but I'm not happy with this diagnosis so I'm now waiting to be referred to another rheumatologist for a second opinion which will no doubt take months!
I too have been having declining kidney function, last March(2015) my kidney function had declined considerably and this was overlooked at my surgery and it wasn't until I saw a cardiologist in October that it was picked up ( he was not happy that this had been missed) but by November it had recovered, it was also normal in March this year but then I had it checked again at the beginning of May and it had declined again by 30%, a big drop in just 6 weeks! The cardiologist thought it was Arcoxia causing the decline so told me not to take it, I had been on it for 6 years and found it the only thing to help my joint pain, it was a life saver, I've been gritting my teeth and putting up with the pain ever since I stopped it and it's been very disabling and limiting . So I was surprised to find that it has declined again and now I don't know the reason why, the rheumatologist found blood in my urine but said it wasn't significant and has sent it away to the lab. I'm also having another blood and urine test with my GP this week. My rheumatologist also told me point blank that it wasn't Lupus nephritis, when I asked him why he thought that, he said 'it just isn't' with no explanation! anyway my GP is looking after it now and if the next test is abnormal then she'll refer me to a renal specialist. My results also indicated stage 3 kidney disease. I'm trying not to think about it or worry too much at this stage just as long as the dr keeps an eye on it, I hope your GP is keeping an eye on your kidneys too?
Do you know what blood tests you had done for the auto immune disease?
I'm sorry I don't have any answers for you, but I just wanted to say that you're not alone in your struggle for answers and to feel well again.
Thank you for your support Diane. All I was told on my last visit is that I tested positive for an auto immune disease. She was a registrar that I saw this time and was as much use as a chocolate fireguard. She said she thought it was nothing new as I had, had polymyralga rhumatica, or at least that is what I have been treated for but they are not really sure what I have had.
Both the Rheumatologist does reqular blood tests for my kidneys along with crp and ESR inflammation test, plus liver and full blood count.
The reason why I think it might be lupus is because my symptoms are intermittent and the symptoms I get now only started after I had the virus in October 2013. I have had about 5 attacks of various degrees of pain. The last one was the worst I have ever had. They always seem to come on when I have been away aboard. I always have to take more arcoixa when I am away because my aching and joint pain is worse when I am away, and I get really exhausted. The last flare has lasted 2 months, the fatigue was debilitating.
Luckily it has now passed, I am seeing the Rheumatologist in July so hopefully he might be able to give me some answers.
It sounds like you have been struggling to, at least my rests in between. I hope you find another pain killer that suits you. I only take arcoixa as and when, I don't take it daily because of the problems it can cause with kidneys etc. I only take it when I cannot bare the pain anymore.
I agree with you that some of the doctors are better than others and as for the Rheumatologist, if u don't fit the text book with every symptoms the dismiss what you are saying. Well I for one have had enough. I have been see them now since the beginning of 2013 and I feel I am no further forward!!!
Hi Bev, I know how you feel, one step forward two steps back, I'm having the similar issues with my rheumatologist!
I now ask for copies of all my results ever since they missed my declining kidney function last year and I also wanted to understand the different tests and what they were actually for especially the ones for Auto Antibodies of which there are quite a few that they do not just the ANA. If I can be clued up about it then I can ask more questions, sadly my rheumatologist doesn't seem to have answers for me to some of my questions, I think they think that we are a little 'stupid' so they think they can say something that isn't entirely correct or is misleading but will keep us quiet, often it works but it's not until I get home and think about it that I wished I'd quizzed him more, I now have a list of questions that is ever growing that I want answers to, If I can be clued up and have print outs from reputable sources like Lupus UK then I shall challenge him , I'm hoping to be referred to someone else as I'm not happy with this one.
I've recently seen an endocrinologist as I wanted my thyroid fully investigated , I have a multinodular thyroid and I have a family history of thyroid cancer and I wanted to know if I had a thyroid auto immune issue causing any of my symptoms, the endocrinologist was amazing, he took his time and listened to everything, he answered all my questions, he asked what did I want from this and which blood tests ( I had a list) he completely understood why I wanted to go down this route after being poorly for so long and he did all the tests and thank goodness everything came back normal, still waiting for my ultrasound though! I needed to rule this out because I know thyroid issues often overlap with other auto immune diseases. I just wished all consultants were as understanding and obliging as he was.
It's so disheartening when you've waited so long for an appointment and you leave with no answers and a feeling of hopelessness, it makes you feel very alone....until you read others stories!
Is the weather very different when you travel abroad or the stress of organising / travelling , do you think these things might cause flare ups?
Yes I feel the same the just shrug off my question or just say things like, I don't know it could be a number of things. I have had blood tests for my thyroid, mine came back normal. My mum died of cancer that started in the thyroid.
I need to sit down again and write things down as and when they happen, then maybe the can see a link.
What really gets to me is that the test that are done at the GP surgery, cannot be see by the Rheumatologist and vice versa. I think this is ridiculous. The Rheumatologist tells the GP things, but not always.
I am going aboard on Sunday, I will see how I react when i am there and when I come back. At the moment I am feeling quite well except for my aching shoulders which I have all the time, but no other symptoms, only time will tell.
If I have symptoms while I am away and when I get home again, I think it can no longer be a coincidence.
I'm sorry to hear that Bev, my dad had thyroid cancer and had two operations to remove it and treatment, he got the five year all clear but passed away a couple of months later, sadly for those last five years he battled with full blown Lupus and was very poorly, he was a fighter but it affected his lungs and heart and he died of complications, this was 16 years ago and knowledge, treatments, blood tests etc have come on since then, we were so grateful that he had an amazing rheumatologist but he left just before I was diagnosed with UCTD 14 years ago 😞
This is why with my symptoms and positive blood ANA and Anti Ro and family history, I want the correct diagnosis, SLE or Sjorgrens I could accept but not cutaneous lupus, my symptoms re definitely not confined to my skin, I'm not a happy bunny at the moment.
It is ridiculous that some Drs systems don't link up, that's another reason I get copies of everything too just in case! And another thing that gets me is the consultants letters often say things contrary to what you've told them or they seem to fabricate things, sometimes I read them and think they've got me mixed up with someone else!! For example the rheumatologist said in his letter ' there is little libido' I thought this meant sexual interest unless I'm mistaken and they use this term meaning something different! I didn't even mention my libido, maybe he could tell just by looking at my face 😫,!
I hope you do stay well so you can enjoy your holiday, it'll be interesting to see if it does affect you in any way and good that you've got your appointment soon after.
Thank you diane, yes it will be interesting to see.
Sorry to hear about your dad also, it sounds like he suffered, life is so cruel!!!!
I know what u mean about fabrication in letters from specialists, I have had the same, there is often thing in the letter I didn't even mention, and the thing I said no mention or completely get it wrong, is saying I have pain on the left when I said right etc.
I hope u get some answers, as I hope I do, but I feel like I am taking to a brick was. I also forget what I want I want to say when I get there, especially when the start asking you questions, I seem to lose my thread.
I have thought about recording what I want to say and tell them to listen lol
Haha what a brilliant idea then they can ask questions after listening to it👍🏻!
I have a list of all my symptoms and a list of questions and I try and make sure I get to say my bit before they start talking. If I don't write things down as I think of them I forget..brain fog 😫 I'm learning as I go..🤓
Good luck, keep us posted as to how you get on with everything.
Do you know if you have ever been tested for lupus?
Based on your symptoms it is worth being tested, even if it is just to rule it out. If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Thank you for the reply. I am not sure if I have been tested. The Rheumatologist did lots of blood tests when I first went, but these symptoms were not present when I had the tests. I am seeing him in July so I will ask him what he thinks. Thank you for the link.
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