1. Community
  2. Bones, joints and muscles
  3. Lupus

Could it be Lupus??

Posted , 5 users are following.

andrew_08416
andrew_08416

Dear all 

Not sure where to begin, but I feel that my issues began in 2014, following successful cancer treatment.  My GP suspects that I now have Lupus. 

Immediately after Chemo I needed to learn to live with the mild fatigue and brain fog side effect, which was supposed to subside overtime and not get worse. There was a several issues which came and went in the early days (following chemo and between the big flare up in October 2015), unexplained abdominal pain, the occasional feeling of a higher level of fatigue which lasted a day or two. Feeling like having a flu but without actually being sick which lasted weeks on end. …. And then in October everything took a turn for the worst.

From out of nowhere the fatigue became extreme; the brain fog progressed to short term memory issues and difficulty finding words in speech. Immediately feeling like I've the flu but not actually being sick with the virus. Within days of the onset muscle groups started to burn like hell (both arms and legs) with joint pains developing at around the 6 week point. Other early issues included shortness of breath, the need to sleep a lot, followed by insomnia, later muscle weakness, headaches etc etc.

After a few weeks following the onset I went to my GP believing it’s just a simple bug or virus (whilst the issues were progressing), and that they can give me a magic pill.   Nothing showed up in the first round of blood tests nor did anything show up in the second. My GP started to talk about a Chronic Fatigue related issue, but needed to carry out a few more tests first. 

Then pay dirt.....after almost 3 months. 

The 3rd bout of blood tests showed 3 issues, which my GP also believes are symptoms and not a cause. 

my testosterone although still normal appears to have been dropping. 

My vitamin D is slightly on the low side but my Calcium is normal. 

I've an inflammation with the LDH being elevated (but none of the other cancer markers were raised and still remain normal today) 

My oncologists do not suspect a re-occurrence but they are still running tests. 

Then another tell tell symptom developed around the 3 month mark about a week after the inflammation was discovered. Also at this time I felt that I was starting to feel a little better (the muscle scorch feeling went to a mild burn and ache.  It was the arrival of the Butterfly face rash, covering both cheeks and meeting in the middle of my nose.  My GP observed the rash over a period of 2 weeks before running Lupus tests. 

By this point many of the symptoms have started to calm down. 

My short term memory has returned to brain fog, and I find it easier to find words in speech. 

Muscle burning (scorch) went away around 2 months in now just a mild burn and pain, mainly also in my legs. 

headache frequency has reduced. 

levels of fatigue also seems to have reduced although still feel tiered 24/7.

Joint pain remains consistent knees worst but also in the hands.

Overall feeling a lot better by the time of the Lupus blood tests were done, but still not right. 

Researching autoimmune issues, I've come to understand that someone can have flares but people do recover.... until the next flare that is. 

I've still got the rash on my face, feel fatigue, have intermittent muscle pain with 24/7 joint pain.

Last week my results from the Lupus test came in.  They were negative.  However my GP still suspects that I have Lupus, regardless.!!!

Reading up about the accuracy of the blood tests. I understand that there is a possibility of Lupus not showing up in the blood tests, although that is a small %.    My question is....

Does Lupus have to be active to show up?

and will it show up if it’s gone dormant?

I’m at a loss to what this is.  My GP advises me that he will chase up the Rheumatologist who can carry out more tests, and that he still suspects it’s Lupus.  If it wasn’t for the face rash, I’d still be thinking something more along the lines of a chronic fatigue illness. But having gone through both cancer related and Chemo Fatigue this whatever this is feels completely different, more extreme somehow.

I don’t know if anyone else has found this when they were being tested.

 

Regards

Andy

2 likes, 16 replies

16 Replies

  • 1_hand_works
    1_hand_works andrew_08416

    Posted

    Hi Andy, I have a similar background. I have a family history of lupus but when I got tested, all bloods were negative. My health was fine until they discovered my mass, which incidentally I had put down to being fat! I was unwell and it was a little too big to take out, some I had chemo treatment to shrink it and then major surgery to remove it when they were sure I would make it through the operation. Biopsy came back benign luckily enough and I went back to work. The next 6-12 months after that I got tired quickly, poor concentration, severe back pain and numbness /swelling in my hands and feet and like you put it down to after effects of treatment etc. even though repeated blood tests showed that I was ok and it didn't feel the same as it was when I had the mass. Circumstances came to a head with job, bereavements etc. and I went off with what I thought was "stress". Couldn't really work out what was going on but just wasn't well. GP repeated lupus test Ro, ANA, C3/4 etc. and it came back positive. I got referred to Rheumy who told me despite family history it was unlikely I had lupus and it was just some random connective tissue disorder as I didn't have butterfly rash and no organ problems. Since then it has got worse and they now say I have it, I have had steroids, injections, methotrexate, hydroxychloroquine etc.etc.etc. too many to go on about. Anyway, the point is, getting diagnosed as lupus should go on what your symptoms are. If I find that link to the criteria score, I will post it. There are things on there like, presence of rash, fatigue, hair loss, nausea, photosensitivity, Raynauds, joint pain, joint swelling, chest pain or difficulty with breathing, mouth ulcers etc. as well as the anti Ro / ANA blood tests. I think it is something like 10% don't have a positive blood test for lupus. So your GP is right if you have enough of the symptoms to justify you with lupus, even if your bloods say no. Hopefully it isn't, as lupus is not a very nice disease. I was getting increasingly frustrated with all of it and like you researched everything on the internet for information. It got me nowhere, but until I satisfied myself with having looked into absolutely everything I possibly could, I wasn't prepared to give up. I have now, and just accept that I try as much as possible to control the pain with painkillers, swelling with anti inflammatories, sickness with anti sickness pills, rash with antihistamines and creams, and then they are trying me with different  immunosuppressants to stop my immune system going bonkers all the time, until they find one that works. I don't get het up on my bloods anymore, just make sure they are ok which means my kidneys and liver are ok. My anti Ros are still positive, it isn't a number apparently, it is just yes or no. I understand how you are feeling right now, as it is how I was last year. This is a crap illness, I got multiple infections last year on top of my problems and three or four flare ups, and it was terrible. I hope you haven't got it and I hope it is something else as I wouldn't wish this on anybody. If I can find that link, I will put it up. Eventually you will get fed up of them taking blood, doing ultrasounds, taking biopsies etc. like I did, (I could have pitched a tent up in the hospital car park!) as it still boils down to getting your symptoms under some control without filling your body up with pills that won't work. Good luck with it mate. I hope this helps, sorry if it hasn't.
    • andrew_08416
      andrew_08416 1_hand_works

      Posted

      Wow and thanks 1 hand works

      I can't say for certain if it runs in my family, long story. I fear miss diagnosis and I've still got a little fight in me if I don't agree with the remy. I know my GP is on myside and I guess your also in the UK.

      I've read there's a specialist clinic in London which will help get to the bottom of it.

      With respect to tests I got sick of them by the end of last year. With the cancer I was being needled and prodded every other day then weekly after the op to fortnightly to monthly now quarterly. Plus the gp prods in between.

      And they say it's not connected come on lol

      I'm sick of the not knowing and it is scary. I'm sure you felt the same when you went through it.

    • andrew_08416
      andrew_08416

      Posted

      Sorry meant end of 2014. Still getting used to the new year :-)
    • 1_hand_works
      1_hand_works andrew_08416

      Posted

      Hi Andy

      Here's the link for that SLICC classification

      http://www.rheumtutor.com/2012-slicc-sle-criteria/

      its the 2012 one, I think there was another paper last year due for publication this year. None of my research into cancer and lupus has been fruitful and my Rheumy don't think there was with mine, but again, I have seen on forums that there have been "coincidences".  I am lucky, I have no organ involvement with my lupus, so, so far so good eh? I went out on my own yesterday for three hours, the first time in about 18 months, knackered now, but pleased I did it. Yes, it is the not knowing and the fear of it being something that drives you to look everything up to the nth degree. Like I said, I got past that eventually. Good luck with it all, hope you continue to get better.

    • 1_hand_works
      1_hand_works andrew_08416

      Posted

      oops, looks like I can't put a link to the SLICC classification in the post, you may just have to type in SLICC to google or something. Anyways, I hope you keep getting better, and yes, it was scary and the fear of not knowing was bad, but I got past it. My organs are ok, just joints, pain,swelling and numbness, and that damned fatigue but I went out on my own yesterday for 3 hours, the first time in about 18 months, paying for it now, but hey, onwards and upwards
    • andrew_08416
      andrew_08416 1_hand_works

      Posted

      Hi 1 hand works

      Sorry your messages got mixed up in the posts. You can actually open the SLICC link thank you for adding that.  It looks as though without a confirmed blood test then no one will be confirmed.  I guess they will have to keep testing me as it appears the accuracy of these tests are far less then favourable.  People with Lupus are telling me that they have tests done and it often will show negative. ??? 

      With regards to organ issues. I had a CT scan today and its shown up an issue with my Lungs, which may be related and certainly wasnt there previously.   I've asked my GP to take a look at the scans and to let me know what he thinks as well.

      certainly in the abscence of confirmed blood tests the evidance is stacking up. My GP usually calls me the day after I contact him and hopefully he will give me some options..  I cant stand the thought right now waiting another 3 weeks to see my Oncologist and not knowing. seems like thats time being wasted to me, well when you need an answer anyway :-)

      cheers my friend

      Andy

       

  • pam_87693
    pam_87693 andrew_08416

    Posted

    Hi it does sound like Lupus Andrew. There are a growing number of consultants who now realise that operation or chemo or childbirth can trigger Lupus without the markers. I have SS and SLE with only a positive ANA! Good luck Lupus can be treated successfully so I'm glad it's not a return of you cancer! 
    • andrew_08416
      andrew_08416 pam_87693

      Posted

      Thanks Pam.

      If you can find any official publications that lupus could be linked to chemo I'd very much appreciate it if you pm me.

      I've a debate with my oncologist that chemo was at least the trigger but he's not having any of it. Lol

      Might help others in the future to get screened sooner.

      Many thanks

      Andy

    • pam_87693
      pam_87693 andrew_08416

      Posted

      I'm sure there will be many Andrew, the sooner that all consultants of all problems realise this the sooner the better! My husband has had 3 cancers, 2 found by me, the 3 rd prevented by me! So he had chemo and radiation treatment for his prostate C and now aches all over. I'm certain that a tiny dose of either hydroxychloroquine or 1 tablet of MTX a week that's 2.5mg would reduce his pains. If you don't fit the NICE criteria brought in to protect we patients from foreign doctors, you don't get! It's that simple. Sadly it doesn't matter whether your a GP or a top Consultant you have to abide by NICE!
    • pam_87693
      pam_87693

      Posted

      Andrew yes it can I'm on MTX which is a chemotherapy drug, which stops the Lupus getting worse in tiny quantities. However I have just looked it up and yesterday Chemo can give you Lupus! You really do need to discuss this with your Oncologist, the last thing he/she would wish it for your cancer to get worse! It depends how long you have been since the Chemo as they usually say 5 years to say your cured and that depends obviously what your cancer was. 
    • andrew_08416
      andrew_08416 pam_87693

      Posted

      Hi Pam

      my treatment completed in September 2014 and I enttered remission in November 2014.  My oncologists dont believe its related as Chemo has long since been completed.  

      My argument is that I've never felt the same since and had a few mystry issues along the way.  Putting aside the side effects of chemo that never went away (fatigue and brain fog) I had issues with feeling like I had flu but never actually had flu, this time last year terrible abdominal pains on my right side which couldnt be answered and lasted months.  days of feeling extrem tirdness and then in October last year this whole thing happened.

      it was like an iron fist to the face from out of nowhere, not even a faint whisper to duck.

       

       

    • pamela85435
      pamela85435 andrew_08416

      Posted

      I'm sure it's down to the chemo Andrew it's bount to take its toll on you body. You will have chronic fatigue and obviously as your autoimmune system has been knock out by the chemo you will be very vulnerable to everything and anything but your alive! I know it's tough I know you will feel cheated of the life you had before Cancer struck, but you ARE alive, you need to book a GP appointmen preferably as at a non buggy time like mid afternoon and talk about this with your GP. 
    • andrew_08416
      andrew_08416 pamela85435

      Posted

      Hi Pam

      I know what you are saying, but I am not fresh out of cancer treatment.  And yes I have been to see my GP several times since the flare up and he is the one suspecting Lupus.

      I also see an oncologist as part of the cancer program and have check ups every 3 months.

      The point is - they can prove something is going wrong.  with the raised LDH inflammation levels for one.  The arthritic joint and muscle pains for another.  as well as other blood anomalies which shouldnt be happening in any healthy or post cancer paitent.

      Today after a CT scan they have found an issue with my lungs which certainly wasnt there in my last scan just before the flare in October.  Add to that we have the the Butterfly rash which is clearly on my face.

      Being a work-a-holic I've experienced almost every form of fatigue there is. Burn out isnt as strong as CRF (cancer related factigue) nor is it in the same realms of post Chemo Fatigue.  This doesnt feel anything like that either. its almost a new level entirely not fatgiue as to me it's not right but as good a label as any.  Its very much like living with muscle and tissue decay - the pain is scorching and tender to the touch, movement becomes stiff and zombie like.  You do not get that with fatigue no matter how chronic it is.  But as I said its just a lable, at the end of the day.

      Like you said... At least I am alive.

       

    • pamela85435
      pamela85435 andrew_08416

      Posted

      Hi I assume you had a malignant melanoma?  If that is the case you need to see your oncologist again ASAP that is not in an autoimmune disease it would be either your ESR or CRP that would be raised
  • stephanie_05430
    stephanie_05430 andrew_08416

    Posted

    Hi Andrew . Just wanted to tell you a bit about how I was diagnosed . Around June 2014 . I developed extremely low platelet counts after getting my bloods done because of excessive bruising . I also developed the butterfly rash . My symptoms are fatigue . Sore joints and I now have a rash all over . I wasn't until October 14 I got the sle diagnosis . When I have a bad flare my bloods can vary and sometimes it shows the lupus is active and sometimes not . My advice would be to get your regular blood check as it can be quite a hard thing to diagnose but from my personal experience I would say either lupus or possibly fibromyalgia .
    • andrew_08416
      andrew_08416 stephanie_05430

      Posted

      Thank you Stephanie

      until the rash I was going down the CFS/ME or Fibro avenue and of cause hoping it wasnt anything that couldnt be fixed easierly enough.  But then the rash showed itself and seems to be more angry the more my issues seem to be effecting me.

      today I had a CT scan, and I was advised that there is an issue with my lungs.  The radiologist immediately called a doctor, and after a short while I was sent home to wait.

      I've asked my GP to take a look at todays scans and let me know what he thinks.  My next Oncologist appointment is 3 weeks away.  I dont think it's a return of cancer.  The inflammation raised LDH was one of the 3 markers which the Oncologists routingly check in case of a return.  Out of the three it was just the LDH which was elevated.

      Thank you for the blood test tip, I am sure to discuss this with my doctor also.  Maybe it would be wise if he is agreing to test me regularly or immediately the next time a huge flare was to hit rather then waiting 3-4 months. 

      regards

      Andy 

       

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.