Just wondering...

[1985mum]

I have been following this group for some time because I have been doing the rounds of specialists trying to get a diagnosis. I have eventually come across an apparently very good GP on recommendation of friends. I haven't been to him yet and I wanted to ask a couple of quick questions so i'm a little bit prepared.

I am strongly suspicious that I may have a mild form or SLE and I have previously seen a rheumatologist who told me that he did not find any active form of auto-immune disease because I did not have obvious arthritic symptoms.

Is it possible to have lupus and not have swollen joints? On a bad day my shoulders, elbows, hips, knees and hands are very painful and sometimes warm to touch but not swollen. I do get morning sausage fingers - worse in winter than summer.

I do have generalised chronic low level pain, mainly down the right side of my body, but not crippling pain like some of you describe. I can still move around, my issue is that my arms and legs are too weak to do anything rather than too painful. Do lupus sufferers all have excruciating pain when untreated? Only a couple of times in the past year have I had pain bad enough to have to hold my side so I can breathe kind of thing but it's not ongoing.

If you lovely experienced people on here could just let me know what you think it would be great. 

P.S. For the record, I have had blood tests done for SLE and everything was 'normal' but my ANA was 1:160. I have chronic low WCC but normal inflammatory markers, chronic proteinurea among many many other physical symptoms.

[wendlebury]

Hi, I also show some signs but not all of SLE, the rheumatologist puts it under the umbrella of mixed connective tissue disease. I don't really mind as I am getting treatment! I do get the following which come and go though: swollen fingers, cracking and tight tendons, pains in shoulders, knees and hips and sometimes it seems like pain all over which before treatment was so bad I could hardly get in and out of the bath. I also get very tired but I never get worse in the sun and haven't had the facial rash although I try to be sensible keeping covered up. I don't usually dwell on it but thought it may help you. It's a very hard diagnosis to be sure of from what I can gather, all the best, I hope you get somewhere with the Dr.

[loglegmomma in reply to wendlebury]

What kind of treatment are you getting?

[wendlebury in reply to loglegmomma]

Hi, I take Hydroxychloroquine 200 mg every other day and Methotrexate 10 mg a week. To start with it was Celebrex anti inflammatories, can't remember the dose - sorry - but came off them as soon as possible as I think they can be dangerous. I was started on 7.5 mg Mtx to see how I got on with it, then upped to 12.5 mg but I kept asking to reduce and have been on 10 mg for a few months now. The Hydroxychloroquin has also been reduced from every day to alternate. I also have folic acid three days after Mtx, and I take cod liver oil and Vitamin D with Rheumatologist's backing - I don't like taking medicines much so we bargain a bit! I do rest when I feel the need too - I decided to take early retirement. I'm lucky as I responded well, although the first few weeks of taking the meds I felt quite nauseous but persevered. Good luck x

[loglegmomma in reply to wendlebury]

I don't have a Lupus diagnosis but my grandma had it & I have so many symptoms.  I think a rheumatologist could help, but my doctor insists anti-inflammatories will fix everything.  I am very concerned about the side effects do we argue.... I'm looking for a new doctor who will find a cause before medicating.

[Paul_Howard Partner LUPUS UK in reply to loglegmomma]

I hope that you find a much more understanding doctor who will be willing to refer you. If you need more information about lupus and how it is diagnosed, you can request or download one of our free information packs from our website at lupusuk.org.uk/request-info... 

[EOLHPC]

That's a GRRREAT reply from wendlebury!

Am VVV glad you've found a good GP.  Why not approach this appt the way you might an initial rheumatology clinic.  And think in terms of immune dysfunction & connective tissue disorders, for which referral to a rheumatologist with expertise in these areas would be reasonable & appropriate.

This forum thread might help you prep for this GP appt...and certainly this prep will stand you in good stead when you do see rheumatology:

healthunlocked.com/lupusuk/...

Hope you'll let us know how things go

🍀🍀🍀🍀 coco

[Bebe76]

Hi 1985mum,

I was diagnosed with lupus after testing positive for anti-dsDNA, high ANA, and a few other autoantibodies. I have never had visible joint swelling, but I have had pain in and around joints - feet, ankles, knees, hips, elbows, shoulders, hands. The pain level varies from tolerable to about 8/10, but now that I am on meds that work better for me, most of my joint pain is under control, but I am dealing with some muscle weakness/deconditioning from being in a flare for several years. Currently, my doctor tells me my blood show my lupus is 'serologically active' (C3/C4 levels are low) but my inflammatory markers (ESR) is within normal range - so sometimes the bloods don't agree with each other!

You can ask your GP for a referral for a second opinion from another rheumatologist. Or, if it has been a while since your last tests for SLE, it may be that it was in its early stages and you may be positive for them now.

[EOLHPC in reply to Bebe76]

We have a lot in common Bebe...aside from the autoantibodies, even the blood results you've mentioned...are your Igs & lymphocytes low too?  My lupus clinic tells me the same sort of thing.  Am so glad of your reply!

[Bebe76 in reply to EOLHPC]

My Igs are normal but my lymphocytes have always been low or borderline. I also have a low/borderline RBC. I am told this is due to lupus and not side effects of meds.

[EOLHPC in reply to Bebe76]

Yes, my lymphocytes have always been low way before I started lupus meds.  My C3&4  + Ig G, A, M have been low since they began to be tested in 2011...just before starting hydroxy & 2 years before pred & myco.  Immunology wishes myco could be blamed, but it clearly can't...now the issue is whether myco is taking my Igs even lower...but a year of regular Ig blood tests indicates G, A & M are settled at a point just below normal range.  Myco agrees with me so well + helps so much, even @ only 1000mg daily, that I will argue forcefully to stay on it.  Immunology has been investigating & mapping my profile for 12 months now...greatly concerned I have no pneumococcus antibodies & make none in response to both types of pneumonia vacc.  Last Monday the cheif of immunology told me I'm now being put on daily prophylactic antibiotics.  

Apologies 1985mum, for this side-track!

[1985mum]

Thanks everyone for the replies. Np about the sidetack Barnclown, it's all very interesting! I am going to see this new GP and I strongly suspect he will send me for another round of bloods and to another rheumy for second opinion. From my friends experiences he is not one to ignore any small symptom at all, so I'm really praying I'll get an answer eventually! Then hopefully some treatment so I can get some life back!

Bebe76 - were your ESR/CRP raised at all before you started treatment?

[Bebe76 in reply to 1985mum]

My ESR was only slightly raised before starting meds, but my muscles and joints were aching. 

Good luck with the new GP and second opinion.

[Penelope-Mary]

Hi 1985 mum, can I add that you describe myosotis , that is , inflammation of the muscles resulting in weakness of your limbs . SLE includes this diagnosis but it also can be a complication or separate diagnosis. There is a specific blood test which shows a high level of creatine kinase CPK test I think. If discovered you would probably be treated with prednisolone and maybe methotrexate. So do mention your muscle weakness to the doctors.

[1985mum in reply to Penelope-Mary]

Thanks Penelope-Mary. My CPK has been fine all the way through, I think I've had it tested at least twice through this journey.

[Penelope-Mary in reply to 1985mum]

Hmm...sort of a pity as you need a dx to be treated and hence feel well(er) again.

Keep us posted!

I'm wondering why you are up at 3am if you are in the UK!

I'm on the other side of the world 😝 🌏

PM

🌻🌻

[1985mum in reply to Penelope-Mary]

I do need a diagnosis (more then just the CFS diagnosis I've been given!) That's what I'm fighting and researching for.

I'm in Melbourne btw...

[Penelope-Mary in reply to 1985mum]

Well hello there! I'm in Melbourne or more precisely Mt Martha; I live in our beach house because Melbs has become too fast for me 🚗🚕🚙🚌🚒🚑🚘🚖🚛🚚.

It's such a long journey to be dx isn't it?  SLE is not discussed here.

[Penelope-Mary in reply to Penelope-Mary]

I mean in Australia, not this forum 😝.

I'm glad you have found a thorough GP. I'd recommend my rheumatologist but he is ridiculously busy and the last time I saw him ( December ) he didn't even dictate a letter to the GP. So it's as if I didn't see him. He rang the next day and increased the prednisolone , which I could have done myself.

PM 🌻

[1985mum in reply to Penelope-Mary]

Could I get his name anyway just for future reference...

[Penelope-Mary in reply to 1985mum]

His name is Stephen Hall and he is at Cabrini. I was referred from my GP and he is highly regarded. I only got in to see him thanks to the GP.

[1985mum in reply to Penelope-Mary]

Interesting...he was the one I went to see! I admit he is a very nice person and he is extremely busy obviously, but...he was definitely dismissive. That said, I was his last appointment for the day, 6:00 pm, and one of his previous patients had wished him well for his dinner out that night so he was probably just more interested in that than me at that point in time! Haha

Has he been thorough in your case? Just wondering if I went back to him at a different time of day whether I would get a different response...

[Penelope-Mary in reply to 1985mum]

What a small world! I'm not sure, I first saw him years ago with the dx. He has a dismissive attitude I agree. I wouldn't return to him, if I were you. Trying to convince a specialist who has made up his mind would be like pushing a boulder uphill, and we are sensitive about how we are treated, we need to be. The crushing dismissal is too much. Be advised by the Sydney GP, s/he most likely recommend  someone who'll take the time, from what you said. I wish you well, it's 🙈 so hard isn't it.

Stay in touch !

🌸🌸🌸🌸🌸🌸🌸

PM.

[1985mum in reply to Penelope-Mary]

It is a small world! Thanks, I'll update once I've been to Sydney and hopefully I'll come home with a diagnosis!

[Penelope-Mary in reply to 1985mum]

Well I would very much like to know how you get on! Long and winding road...🎤

Good luck! 👍🏼. 👯👯

[1985mum in reply to Penelope-Mary]

I'm in southeast suburbs, bit quiter out here! Quite frankly I've found the Melbourne medical profession lacking. The new GP I've got onto is in Sydney. It has been a long journey. 

[Penelope-Mary in reply to 1985mum]

That's determination , good on you for pursuing this. CFS dx does not give you access to medications to treat you properly. Go girl! 

✈️😷👏🏼

PM

🌻

[Paul_Howard Partner LUPUS UK]

Hi 1985mum,

Good luck when you see your new GP, I hope that they help to get you on a path to diagnosis and treatment. It is important to bear in mind that lupus is an incredibly varied disease which affects everybody differently. People with lupus experience a range of different symptoms and have different severities of the condition. 

If you would like more information about lupus and how it is diagnosed, we have a free pack which you can download from our website at lupusuk.org.uk/request-info...

[1985mum in reply to Paul_Howard]

Thank you Paul, I have seen the info. 

I've been reading a lot on this site about different peoples experiences with auto-immune disease and one thing I've learnt is that no two people are the same!

I will update with how I go with the new GP.

[MelbourneLupie]

Hello 1985mum and Penelope-Mary

I live in Melbourne South-East suburbs too......

I turned 60 this year and for the past 14 months have had rash develop either side of my nostrils (side to base of nose.  The last six months I have had rashes appearing on my fore arms, chest and neck -all exposed parts of the body - all of them terribly terribly itchy.   It also became increasingly impossible to have a warm shower and going out in sun burnt the skin. 

Seen two dermatologists. All blood tests ANA AsDNA etc all came normal. Skin biopsy diagnosed Lupus. I have been put on Plaquenil 1x200 mg.....Initial few days I had headaches but now settled......Now rashes have spread to non \-sun exposure parts - upper arms and back.

I am told plaquenil will take 8 weeks to take effect.....I am hoping.......sorry had to get my story out of my chest.....I have been healthy, active and outdoor person - but now restricted to indoors and Sun has become the worst enemy.....