Could it be Lupus??
Posted , 5 users are following.
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
1_hand_works andrew_08416
Posted
andrew_08416 1_hand_works
Posted
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
Posted
1_hand_works andrew_08416
Posted
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 andrew_08416
Posted
andrew_08416 1_hand_works
Posted
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 andrew_08416
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andrew_08416 pam_87693
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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 andrew_08416
Posted
pam_87693
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andrew_08416 pam_87693
Posted
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 andrew_08416
Posted
andrew_08416 pamela85435
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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 andrew_08416
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stephanie_05430 andrew_08416
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andrew_08416 stephanie_05430
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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