Being told symptoms are not due to Lupus

[Choccy8]

Hi, I was diagnosed with Lupus in 2015 after nearly 20 years of being told I had M.E,/C.F.S. I am currently taking Prednisolone and Hydroxychloroquine, have had Mycophenolate in the past as well. I'm trying to reduce steroids - got to 9mg for a month before symptoms started flaring - morning stiffness, migraines, joint pain, increased pleurisy pain, carpal tunnel, feeling rubbish etc and went back to 10mg. Just had telephone appointment with Rheumy - first for six months - didn't get to speak to him, it was a nurse who consulted with him and reported back. The plan was I would start Methotrexate to help me reduce my steroid dose. Now, the nurse reports that the consultant doesn't think Metho will help, my symptoms are due to M.E./Fibro (which I've never been diagnosed with). I said surely M.E. doesn't cause pleurisy (which I've had since diagnosis, to greater or lesser degree). I feel like because my blood markers are ok, any symptoms I have are put down to M.E. and therefore not considered worthy of treatment. Rheumy has agreed I can try Metho, but I'm confused as to why he seems to dismiss my symptoms. Thanks for reading!

[PMRpro]

If pred helps the symptoms - how can they say it is ME/CFS/fibromyalgia? None of them respond to pred.

[Choccy8 in reply to PMRpro]

Hi, thanks for the reply. He says because the steroids help with inflammation, I will feel better on a higher dose. But yes, I'd read that steroids weren't shown to help with M.E., and I know they're not used for fibro either.

[PMRpro in reply to Choccy8]

That compounds the felony! That is an acknowlegement you have inflammation - but inflammation isn't a component of ME/CRS or fibro (whether you have that or not!!). Long term low level inflammation is a risk factor for all sorts of things - so I don't see why you are to get off the low dose of pred that is managing it fairly well from what you say.

How old are you?

[Choccy8 in reply to PMRpro]

Ha ha, felony compunded! I'm 39, had symptoms (diagnosed as ME, but also had Raynaud's) since 16. They've been telling me for several years I need to be on a lower steroid dose, aiming for 8mg or so at the mo, I think. He was saying Metho would help, now it won't, apparantly!

[PMRpro in reply to Choccy8]

Nuts ...

[Josiah150767]

HiSorry you are having a frustrating time. I have lupus, sjogrens and fibromyalgia. In 2012 I was diagnosed with fibromyalgia after months of being prescribed prednisolone and not feeling better. I knew in myself it wasn’t my lupus flaring as like what has been mentioned, steroids have no effect on fibromyalgia. I had some mosquito bites which developed into cellulitis on my arm and legs and my gp told me to stay on the steroids, which I didn’t as they were making things worse.

[Choccy8 in reply to Josiah150767]

Hi Josiah, thanks for that. It's useful to know that steroids don't help with Fibro. That's rough for you, having three things to cope with. I hope you're feeling better now.

[Josiah150767 in reply to Choccy8]

Thankyou. Not quite there yet. I’m waiting to receive a prescription for methotrexate as I can no longer take hydroxychloriquine. But I remain positive that things will improve🙂

[stiff19]

So sorry, I’m on a journey, was given hydroxychloroquine which helped my then diagnosis some, but then another rheumy stopped them saying fibro and I have suffered enormously including lots of swellings and inflammation. It’s sad but we have to educate ourselves to help ourselves and I hope you get this sorted , take care best wishes x

[Choccy8 in reply to stiff19]

Oh no! That's rubbish for you. I am sorry. You'd think if the hydroxy was helping, they'd be glad to let you have it. And swelling isn't part of fibro, is it?!

[stiff19 in reply to Choccy8]

It doesn’t make sense🤷‍♀️ More to the point why when I’d say it helped they argued it didn’t 😡🤷‍♀️ The improvement in my hands spoke for itself , my only explanation for this being I’d made a complaint about a colleague of theirs 🤷‍♀️

[CecilyParsley]

How frustrating for you l I get enraged by this bandying about of a Fibro diagnosis on little or no clinical evidence. It seems like a panacea for all ills. I once had a Rheumatologist so convinced I had it that he bruised me pressing the trigger points so hard to elicit a pain response. Once you get a Fibro diagnosis it is a catalyst for every damned ailment you seek help with. I was told again during a Rheumatology appointment that the pain in my ribs were Fibro issues. Two days later during a pre op assessment I was told I had pleurisy on both lungs. Yet still it persists. I respond well to steroids. I am on 80 mg again now for my asthma and my joints are comfortable at least. I am so sorry that you are getting inconsistent care. Maybe ask your GP to email your Rheumatologist to clarify the situation? Good luck xx

[Choccy8 in reply to CecilyParsley]

Hi Cecily, thanks for your support. Yes, it does seem like ME and Fibro can be a bit of a 'dustbin diagnosis'. My Rheumy's opinion seems to be that because the Lupus isn't flaring away uncontrollably, any fatigue or other symptoms are down to the mysterious ME or Fibro (which I don't think I have, as I don't get huge amounts of muscle pain as a general rule). I'll try and find out what's going on! Sorry to hear of your own travails - that experience with the trigger-point-happy Rheumy sounds positively traumatic! I hope things get better soon. xx

[CecilyParsley in reply to Choccy8]

I agree dustbin diagnosis fits well which totally negates the suffering Fibro patients go through too. Please let me know how you get on xx

[sickandtired72]

Hi - your history sounds just like me 20+ years of being told I have fibromyalgia and I was on Prednisolone too and if I dropped below 10mg really bad symptoms- luckily joints started swelling and awful skin rashes so was re-referred back to Rheumatolgy. Blood are and have always been normal. Put on methotrexate and Prednisolone and eventually told I have UCTD. After coming off steroids for 6 months of hell when still really symptomatic eventually trialled on imraldi biological - no response then put on Benepali biological. Not symptom free but pain reduced by about 60% so off slow release morphine now. As didn’t respond to imraldi Rheumatologist even suggest I might not have UCTD?!?!?! But now responding to Benepali not sure what she will say when I next see her - not sure how long it will be before I am due to COVID. But there are some people with negative blood results who do have autoimmune conditions. Clinicians just don’t understand enough as not enough research and instead of just admitting this they torture us with such poor care and dismiss our symptoms. I know it is really hard to keep fighting especially when you feel ill and I have days when I can’t cope with such clinicians but you can’t give up - keep pushing for better care and diagnosis. I now take max dose of hydroxychloroquine, methotrexate and Benepali and life it just about manageable. I hope you get help and a diagnosis ASAP.

[Choccy8 in reply to sickandtired72]

Hi Sick. Thanks for your message, but sorry to hear of all you've been going through. I wonder why they put you on Pred if they thought you had Fibro? It doesn't seem like it's a usual treatment for it - josiah, higher up in this thread, said it doesnt do anything for his Fibro. I'm so glad you've finally found something that helps, even if it's only partial. I will be looking for a second opinion - as you say, it is really hard to keep up the motivation when feeling ill. What's especially frustrating is I've already been waiting 18 months or more to get going with the Methotrexate, delays their end, and with the GPs who were and then weren't going to monitor it, and then Covid throwing a spanner in the works. And then with him not even coming to the phone, I felt a bit dismissed. It does seem like drs often come with their own fixed ideas about your case and then try to shoehorn you into it. As you say, we have to keep fighting! Best wishes to you. x

[Hoofprints]

I too was told I had M.E. and fibromyalgia for over 20 years, then finally diagnosed with a lupus-like illness (urticarial vasculitis syndrome) and have recently started on a brand of hydroxychloroquine that I can tolerate. Also recently diagnosed with carpal tunnel syndrome and having joint swelling in ankles and knees. No longer being told graded exercise and CBT is the cure all (not that I thought it ever was!!).

A neurologist told me that having a diagnosis of M.E. / fibromyalgia was like a get-out-of-jail- free card for doctors. This forum is incredibly supportive and I've learned a lot here. Stay in touch and stay strong -we know our own bodies, as many of the stories here prove. I hope you find a course of treatment that suits you and is helpful. Don't give up hope of improvement. And remember, you are not alone even if it often feels that way.

Good luck 🌈

[Deiniol]

Hi Choccy8. I've been diagnosed with lupus for over 37 years. They have tried over time to reduce the pred by giving me a mix of different meds, hydroxychloroquine, azathioprine which was stopped and then I was given methotrexate. The mix was to lessen the side effects if the different meds. I am now on 7.5mg of pred and will never be able to reduce it as my adrenal glands have stopped working. A few years ago my legs started aching, it was like something prodding me here there and everywhere. I thought it was fibromyalgia, but the consultant didn't think it was as I wasn't hurting in the fybromyalgia points or something. Anyway, they put me on amatryptyline just as a pain control. Can't say that it's done much difference, just came to accept it unfortunately. Some aches and pains of lupus are very hard to describe and even harder to treat! They just sound weird and far-fetched to anyone else. They don't understand that the pain can jump from one place to another. I've given up now and just try to carry on regardless.