Worried

[Pennypip]

hi I joined this group over a year ago I often read some of the posts and find them informative.

I’m a bit of a technophobe and this is my first time posting for advice.

I was 65 in August and a few weeks later started having painful hips, eye aches and occasional sharp fleeting pains in my temples.

They aren’t constant and some days only twinges.

I’m feeling more fatigued than usual and having more night sweats.

I have had mild lupus for nearly 30 years. Was discharged from Rheumatology in 2021 because bloods were negative.

I had some bloods done recently ESR 10 so reassured everything fine.

GP appointment tomorrow cholesterol high at 7.6 so will probably want to put me on statins which I’ve always resisted.

I read some posts on here regarding Polymyalgia and GC Arteritis. It’s got me worried. Is there a particular blood test that would show.

Am I over worried. Though my gut instinct is telling me somethings going on. Thanks for any advice 😊

[PMRpro]

There is no specific definitive test - the ESR and CRP blood tests are often raised but may not be out of the normal ranges even if raised for you. The diagnosis is a clinical one - on signs and symptoms building a wall of evidence. Some doctors are fooled by the ESR/CRP results - they may lag a long time behind symptoms and in up to 1 in 5 never are raised. But you can still have either PMR or GCA.

Your symptoms DO fit with possible GCA - the painful hips are often an early sign of PMR, PMR can be a symptom of GCA and the night sweats and fatigue are also typical. PMR can develop first and GCA much later and some people with PMR have the night sweats though it is less common.

There is a dedicated PMRGCA forum here - come on over and tell your story. You will get a warm welcome and any questions answered whether it turns out to be PMR/GCA or not.

healthunlocked.com/pmrgcauk

[dg70]

Why were you discharged? You can't unhave lupus. I hope your on hydroxychloroquine still. My bloods are negative but I have lupus and sjogrens. My dsdna is now negative because the hydroxychloroquine is dampening my immune system down. You need regular bloods and urine test at least every year. It's depressing these Rheumys who only look at blood results especially when you have new symptoms. If you were still going to a rheumatologist they would be looking into your symptoms I would hope by now. I call up my rhuematology department when something new happens and they get me in for tests. If I was discharged I would not be able to. Lupus is not the kind of thing that stays stable and often you develop other conditions along side it. If you're not medicated then all the more so. Maybe you have medication I'm not sure if you said. You need to get back on a rheumys radar and be looked after properly.

[Pennypip in reply to dg70]

Hi, thanks for your reply.

I have had Lupus (mild) for nearly 30 years it started following IVF treatment. My symptoms were fever, swollen joints, fatigue. I had very high ESR and positive antinuclear antibodies.

I have taken hydroxychloroquine in the past but developed lichen plants in my mouth and the chloroquine made the pain worse. Plus it gave me nightmares. I’m sensitive and seem to get side effects to most drugs. I was on it though for a while and it did dampen down my lupus symptoms. Luckily I have sort of been in remission, knowing triggers and being careful.

Rheumatologist saw me regularly for years but discharged me in January 21 because all bloods were negative.

After latest health worries rang Rheumatology department and was told that I had no need to worry because ESR was 10 in recent bloods.

I saw GP today he is going to refer me for MRI on my head and neck.

Doesn’t want to prescribe steroids until I’ve seen a rheumatologist.

To refer me back will be 3-4 months on nhs so I’m looking for recommendations of private rheumatologist in north west please 😊

[dg70 in reply to Pennypip]

Crazy you were discharged due to bloods, new research shows you don't have to have positive bloods to be flaring or even have a diagnosis of lupus. I have Sjogrens as well and again negative bloods. You need to find a Rheumy who looks at symptoms and not just bloods and is there for you when you need advice as GPs are limited in knowledge. I'm in the South West so can't help but hopefully someone here has a recommendation in your area. If you don't get an answer then start another chat with 'looking for a private Rheumatologist in the NW' then everyone will notice it that's maybe in your area. Please don't let anyone discharge you again. You can contact Lupus UK for further advice on the subject too they may be able to help, possibly with a contact or a local Lupus group to you where someone can help.

[Pennypip in reply to dg70]

Thanks will try that x

[Lizard28]

When I was diagnosed with possible GCA, I had the worst night sweat ever. Bed was soaking, never experienced anything like it. My head was so sensitive I cudnt even put my head on the pillow. I thought nails were touching my head when trying to have a shower. My ESR was over 100, they had to put me on high steriods right away. I was on them for 4 weeks before they did a biopsy on my temporal artery. This came back negative but said it could have been that they cut a good bit of artery. They kept me on steriods for best part of a year. Rheumy doubted it was GCA because of biopsy but who knows. I’ve been seeing rheumatology consultant for many years now. Was diagnosed with MCTD and more recently after biopsy on rash I had, it was lupus. It’s taken over 10 years to get a diagnosis. Best wishes

[PMRpro in reply to Lizard28]

I dunno - there are a load of reasons the biopsy may be negative but it doesn't mean it isn't GCA, Four weeks of high dose steroid on its own is enough! You'd hope a rheumy would understand it isn't 100% certainty it ISN'T GCA.

[Lizard28 in reply to PMRpro]

There was no certainty, they never commit without a positive result, my Rheumy is such a stickler for positive bloods etc. I was on high dose steriods for nearly a year without tapering down but she kept saying she doesn’t think it was. I had every symptom of GCA. When I complained if she doesn’t think I had it why am I still on steriods. She told me to half the dose really quickly and taper off. I do have a different consultant now. If I ever have those symptoms again I will go straight to a & e as I might get the biopsy a lot quicker. The symptoms were really scary

[PMRpro in reply to Lizard28]

Hardly a good relationship between doctor and patient - it really gets me going when a doctor accuses a patient of lying. Sometimes they do but most of us don't. I'd have been out the door like a dose of salts and asking for a different doctor on the grounds of breakdown of relationship.

[Lizard28 in reply to PMRpro]

I went straight to my GP and got better advice on how to taper the steriods, I also got a different consultant. I’ve never experienced anything like that night, my head was so painful, when I saw my GP the next day, she said it’s probably just flu, I said I wouldn’t come to you just for flu, there is sumthing wrong in my head. When she eventually said we will do bloods but it won’t probably show anything. I had three missed calls from the surgery trying to get hold of me when the bloods did come back, it was so high. Needed steriods urgently. It just shows you, you know your body better than anyone else, go with your gut! Xx

[Pennypip in reply to Lizard28]

Sounds like you have suffered. Pleased you have diagnoses and treatment. Thanks for your support x

[Lizard28]

you are very welcome, if you think there is something wrong, keep pushing for more tests, don’t give up. X

[thestorm]

Hi pennypip, I might have a few suggestions for your GP visit. No guarantees, but it couldn't hurt to ask your GP. I have SLE, and have tested positive and then what they call seronegative many times. I am 62 now. Some of your symptoms sound bit familiar, night sweats, pains hips and statins, eyes. So, ask your GP to check your Ferritin levels, check your estrogen and progesterone levels, check your calcium levels, and try to get a Cardiologist referral. I have had many arrhythmia s, night BP, eye problems, etc. And after all the testing, found my Ferritin levels, and estrogen levels very bad. My GP placed me on HRT therapy, and high dose calcium therapy, and Ferritin therapy,. I became much better in all my listed symptoms here. My blood pressure lowered, my body stopped hurting in odd places, my bone density scans came back much better, so many benefits.Do you keep a symptoms journal? You should.I hope sharing some of my story will give you some help,hope, love, and encouragement on your journey. Please remember,you know your body best. Much love and blessings, The Stormy Sunshine 🌻