This is my red face rash and my lovely dry cracking lips...
Anyway - Rheumy letter: I shall type it out in full:
Many thanks for asking me to see this 43 yr old lady who has a background history of possible ME.
Since October she has noticed pain in the small joints of her hands. She has also had back pain for the past 9 yrs but it seems slightly different now and she describes inflammatory sounding pain in her hips and lower back. She has the pain in the morning and it gets better. Equally when she stands for long periods the pain is worse. She suffered with glandular fever at the age of 18 and sine then she has been diagnosed with ME and feels very tired. She was involved in some research at Addenbrooke's at the age of 21 and did not respond well to steroid therapy in the research as there was a problem with her white cells at that time.
Mrs O also suffers with IBS, which mainly causes diarrhoea. She has had a colonoscopy in the past which was entirely normal. She feels her knees and elbows are weak but she doesn't get much pain in those joints. She describes very dry skin and she also has dry eyes. She used to suffer with jaw pain and a facial rash, like sun burn, but she denies any photosensitivity. She also denies any mouth ulceration. She has a flaky scalp and eyebrows. She is not on any regular medication at present.
Mrs O works as a self employed web designer. She has 2 children and no history of miscarriage. There is a family history of autoimmune disease, including coeliac disease in her nephew, rheumatoid in her maternal aunt (it was actually my cousin - he died from it aged 7) and lupus in her aunt. Her father also suffers from what looks like Sjogren's syndrome.
On examination she looked well. There were no obvious skin changes suggestive of psoriasis. There were no features of active inflammatory arthropathy. She is very flexible in her spine and in her elbows. There were no features of peripheral arthropathy. Sacroiliac and hip joint examinations were normal.
I have arranged an x-ray of her lumbar spine and sacroiliac joints and will see her again in my clinic in approx. 3 months.
What do you think? I felt very deflated when I read it... The GP surgery told me the renal profile bloods and ESR were normal, no further action... I feel like I am going to be discharged and back where I started. Am I being too negative? Do I need one of you to give me a slap and tell me to pull myself together?
I will however ask whether or not the rheumy or GP took any autoantibody bloods from you - even basic ones such as Rheumatoid Factor, ANA - or better still more specific ones that indicate specific diseases? As you probably know, Sjogren's is the one most closely connected to the dryness you describe, and chronic fatigue.
If none of these were taken then I think you should ask your GP to run them now. If they are all negative or equivocal - and you don't have any terribly painful nerves, muscles or joints and your skin is dry and rash, but not bizarrely so - then I would be tempted to just wait and see how things develop. For your dry skin I would use a moisturiser such as Doublebase, if you have dry eyes then Hyloforte is good, Orelieve if you have a dry mouth and just keep an eye on yourself in case symptoms take a turn for the worse. But only you can decide this based on how lousy you feel.
The main thing is that you don't have joints being painfully eroded, or nerves dying or any internal organ involvement and nor are you dealing with huge amounts of pain if the letter is correct?
None of the drugs for these connective tissue diseases do much for the awful fatigue or dryness. And they all carry risks and side effects. When I was at your stage (young kids) I knew nothing at all about autoimmune diseases. I had various nasty symptoms such as reflux, severe eczema, alopecia, rhinitis, dry eye, eye infections, Bells Palsy, bronchitis, BPV, dental issues, backache, low energy - but I only occasionally went to the GP when these got out of hand.
One day, when I was seeing her about being overweight, she took bloods and told me I was borderline hypothyroid so I went on Levothyroxine without a thought - didn't know it was autoimmune. Nothing changed for me - remained overweight, eczema covered, tired with gastritis. Then she found out that I had gallstones so all tummy issues got blamed on that while I wriggled out of surgery twice. Eventually each of these symptoms settled down, even the eczema went once menopause started. I'm not aware of a family history of autoimmunity although one cousin has PsA without the psoriasis and a second cousin has Sjogren's.
It was a decade on that bilateral synovitis, diagnosed as RA, started. Now this has been rediagnosed as Sjogren's with probable add-ons. My ESR and CRP have usually been pretty high - never normal.
I'm not sure that anything would have been very different for me if I'd been tested for a connective tissue disease earlier. I certainly regret how all-consuming my health journey has been over the last six years. I accomplished much more with my children when they were younger and with my career as an artist when I wasn't constantly overthinking and worrying about what was going to flare up next. Ignorance can be a blessing sometimes!
So this is no slap or advice to pull yourself together. But it is just a quick resume of my own tale in case it helps a little.
The rheumy letter you've posted is a very typical clinical letter. These doctors don't have to live in our shoes so they just put everything in this very understated, disinterested way. They don't know the paranoia their clinical speak often engenders in us!
He is seeing you again once imaging is back and hopefully he has run blood tests for autoimmunity rather than just full blood count and ESR - so will be more forthcoming then. I know exactly how you feel, been there myself. But my advice would be to try to gather yourself up and keep reading up, monitoring and documenting your symptoms yourself, but only if they are too dominant to be ignored. Twitchy x
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Thanks twitchy. My husband has also said it is just a standard letter and to not over think it i had a comprehensive set of bloods taken before referral and the only ones that were not normal were the vit d and hla b27 the latter being the cause of referral. I had anti-nuclear IgG which was negative 0.5 (range O - 0.69) which i presume is the ana? At GP but no other tests than the renal profile and ESR with rheumy. It is good that nothing major is coming up but it still leaves me with no explanation as to why i feel so poorly nearly all the time!!
in reply to
I meant Anti Nuclear Antibodies and Rheumatoid Factor as these are the two that GPs usually run before determining whether or not to go ahead with a referral. I imagine that they have tested these two more basic ones if they have run the others but worth checking with your GP perhaps.
When I first presented with bilateral synovitis in early 2012 after decades of running at half mast, my GP only ran the Rheumatoid Factor and my ANA wasn't tested until I had been on Methotrexate, Steroids and Hydroxichloraquine for a few years - so it came back equivocal. It was only when I was properly clear of all meds including steroids, that it came back clear positive along with elevated IgG and IgA.
On back of this I was given a lip biopsy which was 100% positive for Sjögren's. I was astounded having been told by rheumy back in January last year (still on low dose of steroids) no.2 that all my tests were negative and I did not have a connective tissue disease.
Rheumy no.3 said my biopsy was so conclusive that I'd probably had Sjögren's all along rather than RA as the two are twin diseases and overlap is great.
So please be persistent if nothing shows up in next few months to confirm how you feel. There's always a reason behind our symptoms I say. Best of luck.
Hi Hidden . I can well imagine how deflated this Consultant's overview must seem but, as Twitchy says, it is very typical. He seems to be focussing on possible PsA or Ankylosing Spondylitis - presumably because of your back/hip pain and your hlab27 result but these conditions generally give no clues on the bloodwork.
Don't be too disheartened - he isn't being as dismissive as many can be. He seems to be working through the likely options and will then plan where to go after your next appointment. Some people have chronically raised ESR and other markers but mine swings up and down from month to month so it just depends when it is taken. 3 months seems to be the standard time to wait these days - I was diagnosed nearly 20 years ago and the norm then was to have the initial appointment with follow up 3 weeks later when blood tests/X Ray's etc had been performed. A much better system, in my opinion.
I have had some awful clinic letters in my time. Sometimes I wonder if they are even about me! They can be grosslly inaccurate and even contradict what the same consultant wrote in his last letter!
No further action is standard laboratory speak when bloods come back within normal limits. Is great that your kidneys haven't been affected. No slap, be kind to yourself and keep a diary of symptoms. Clare x
Thanks Clare. I was feeling a bit down when i wrote the post. You do start to wonder if you are making yourself feel ill and it is indeed all in your head as i have been told repeatedly over the past 25 years and then you start to ask yourself maybe all 43 yr old women with 2 kids feel like this! It goes on so long you just don't know what is normal anymore... What I want is a treatment programme whether that be for ME if it is decided that is what it is, mental health if i am causing my own symptoms or for am auto immune disorder. For ,25 yrs now I've not had much of a life because i am so limited in what i can do. Of course that affects my kids and husband too
M.y nearly 13 ur old bless him can spot the warning signs, help me to bed, cup of peppermint tea made and get rubbing my legs! He's lovely but he is only 12 and shouldn't be having to do that!!
I totally understand when you say you wonder if it's all in your head and what is normal, I think we all on here have that. 25 years is a long time to have suffered the pain and to have been brushed aside. I have no idea these days what is caused by lupus, possible Sjogrens, advancing years (now 49), viruses etc. My husband and children have gone away this week and I mentally rolled up my sleeves with plans of all the jobs I could get done but 'mentally' is as good as it has got! After a trip to the dump and scrubbing the trampoline - I was in so much exhaustion-induced pain that I could neither sit, stand or even lie down! My functionality has dropped off the face of the earth and I don't like it one bit.
Your doctors owe you some decent treatment but none of these conditions is easy to diagnose. Dont despair - you will get there. What about a more pro-active GP?
My husband suggested this last night. I have stayedwith this surgery because i can always get the kids seen same day as an emergency if they are really ill, but this doesn't stop me changing and keeping the kids there. I know what you mean about only getting as far as mentally preparing! MY best laid plans often come unstuck and of i do get this has done enforced rest is often the result. That over done it mark sneaks up on you doesn't it!
I changed gp & left the rest of the family with the old one. Such a good move for me as she really cares & will do anything she can to help. I did have to change twice before striking gold. Xx
No don't be negative, many of us start like this. Even if you don't have Lupus, something is going on and they need to keep going. The bloods may be clear now but that may change. My advise keep a diary. Make a note of how you feel. What triggers any problems and take photos to present..
Thank you. I know it is a long road and I've already been traveling the road for a very long time! Thank goodness for everyone's advice on here who have also been on this road for a long time and know a few shortcuts!!
So sorry to read of your diagnosis difficulties and being ill a long time!. You certainly don't need a slap , it's a long hard road to diagnosis but you will get there I'm sure. A lot of auto- immune sufferers start with a diagnosis of ME and then years later it's changed. These illnesses can change quickly and my advice would be keep a log of any new symptoms and photos of rashes for your next Consultant visit!. Your history alone is a good reason to keep an eye on you and your Consultant is not being dismissive which is very good. Having an X-ray of your lumber spine and sacroiliac joints is great because it will show if there's been any inflammatory changes. I'm just a year older than you and I've got changes to my spine so this could be a breakthru for you. It is possible to have sero negative lupus so it's going to depend on your Consultants attitude, your symptoms and any new ones developing in this three months as to which path you go down. Your bloods may be repeated then and who knows you could have an answer. Good luck for June and keep us posted. Hope you feel better soon. X
Thank you Misty! I was saying to my husband last night that it seems we do the same tests again and again and always get the same (negative) result. Maybe we need to do different tests?! I was a little worried because one thing the rheumy said was that "most white people are hla b27 positive" although my googling showed me it is about 8% - it was a bit of a "noooooo don't take my one positive result away from me! This is all that has got me here!" moment. I've decided when we go back if the xrays show nothing to take the tack of "Well, something is definitely not right, so what do WE do next?" I did make it clear to her that I have been pretty much abandoned by my medical professionals throughout my ill health as they simply do not know what is wrong. They told me it is in my head but all they offer is anti-depressants and CBT - neither of which worked. They told me it was ME but I have never seen an ME specialist at an ME clinic. When tests are abnormal, they are never abnormal enough! She was visibly shocked when I told her all this, so I am hoping that just on a human to human level she will have sympathy and a wish to help get to the bottom of things. I'll settle even for a professional curiosity I'm so glad I can post on this forum even though I am not diagnosed. The husband tries to understand but he is one of those people who is never ill, so it is difficult for him! Here there is always at least one person who knows what you mean! x
Thanks to you I've now learn't what HLAB 27 is and did you realise that although it's not definitive of an illness it means there is something auto- immune going on!. The ANA test is the same and diagnosis of so many of these illnesses is by symptoms , bloods and history. Don't lose heart because I think you will get somewhere with this Rheumy. She sounds like she likes a challenge as she hasn't dismissed you. Hopefully she will keep an eye for things developing and you show her any rash photos and new symptoms in this three months!. Your face flush is like mine but not as pronounced!. Has it left marks when it goes away?. I'm sorry you have had such a health battle over the years getting nowhere!. Fingers crossed your breakthru comes in June. X
Hi Misty, I was just looking through some photos with my son and one came up where the flush was really pronounced, so it changes in intensity. It never actually seems to go away, it can always be seen just in various shades and sometimes only when you look very closely I know it came on nearly 5 years ago as it was a miserable summer and at my son's 8th birthday party my mum asked how on earth I had managed to get sunburned! I've also got a lovely picture at the Dr Who 50th anniversary where they photoshopped me and my son into a photo with Drs 10 and 11 where I look like I have let a 3 year old put blusher on me haha! I thought that HLA B27 was indicative of AI involvement and I also read a very interesting research paper that said the Epstein Barr virus can trigger the HLAB27 AI problems. All my health problems started after glandular fever so I could definitely relate to that. It seems to be more of a "thing" in the US than over here though? i.e. the medical profession over there seem to take it more seriously.
I think I was most upset that the rheumy said I looked well on examination as I went to the GP in the first place as people kept telling me I had lost a lot of weight (and not in a good way, they all said I looked very ill! I'm 5'9" and weight about 8.5 stone so I am underweight) I also cannot use a lot of face creams (skin far too sensitive. I can get away with Manuka honey rescue cream), I can't use make up anymore as eyes are so dry and every time I put any mascara on I get stye like bumps all along my eye lashes. I can't dye my hair as the dyes burned my scalp so much - we tried highlighting but still the same My hairdresser is looking at natural dyes for me now. I feel haggard and frumpy! At Christmas my Dad told me my hair looked a right mess (I got about 6 inches of growth going on there now and plenty of grey!) and it was all I could do to hold back the tears. I said I couldn't use the dyes at the moment and he was like, whatever. He's not been very understanding of my health issues since the GP told him it was "all in my head" when I was in my early 20s. Must admit I kind of brandished the HLA B 27 result in front of him - aha! I told you there was something wrong!
You know pregnancy can trigger these illnesses too. You can be fine when pregnant , it's afterwards when you have your bundle of joy!. They must help keep you going. I don't know what Al is?. That photo you found would be good for the Consultant. Are your white cells low, also lymphocytes and complement can be lowered with these illnesses?. You've lost a lot of weight and I wonder have you had thyroid checked and red blood cells for anaemia!. That was very upsetting of your Dad to say those things!. Mine isn't very understanding either and like yours has had good health all his life which doesn't help them be understanding!. Hope you have a supportive GP. You'll get there I know you will. X
i had horrible pregnancies - awful migraine first trimester, bleeding with my second i was told i had miscarried but she was still in there holding on! AI was just me not typing out auto immune! my white cell count was lowish i believe although i think it was in range O will have to look at my test results again. My thyroid has come back as overactive a couple of times but apparently not enough to medicate. Thanks for your words of encouragement you have helped me more than you know! X
I'm pleased I've helped as do have long experience in the world of auto-immunity!. In view of your symptoms and blood results I really feel you've crossed now into this category , it's a case of trying to say which illness it could be!. You've got a good Consultant I think who wants to try to fit the jigsaw pieces together!. Fingers tightly crossed for your X-rays. Hope you don't wait too long for them. Keep us posted. X
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i had a comprehensive set of bloods taken before referral and the only ones that were not normal were the vit d and hla b27 the latter being the cause of referral. I had anti-nuclear IgG which was negative 0.5 (range O - 0.69) which i presume is the ana? At GP but no other tests than the renal profile and ESR with rheumy. It is good that nothing major is coming up but it still leaves me with no explanation as to why i feel so poorly nearly all the time!!
Is this a Lupus Butterfly rash? 
*warning* Weird rash picture
Rheumy update for all that wanted one
Just a rash or malar rash
Skin Lesions and itchy rash
