SLE Lupus vs Hemochromotosis

[charz001]

I have been diagnosed with SLE Lupus 2 years ago.

After seeing many Doctors, and now finally with a Rheumatologist.

My main treatment are methotrexate, plasmaquine amongst other. like pain pills, and sleeping pills.

My health has improved a lot since on these meds but in

saying this still have good and bad days. I think, ive had a what they call a flare for the past 2 weeks and really hoping that much rest and time will soon sort it out. I am working and fortunately have a desk/office job, so able to just plonk myself behind the PC and sit quietly and work.

I was also dignosed with Hemochromotosis(iron overload) Both parent mutations (C282Y) 4 years ago. This disorder builds iron overload in the body and I think Lupus makes one anemic. Strange hey.Really uncommon!

The symtoms of both these disorders are soo very similar, its unbelievable. So at times I wonder which one is attacking me and the only way to tell is to check the Iron and Ferritin levels. If i have an overload then I have a venosection to rid the excess iron.If anyone has any information to give me, would really appreciate it. Take care.

[brave]

Charz001......This is such a fantastic topic,I have had iron overload for over a decade my iron saturation is raised my ferretin is within range ,i carry single mutation,it was detected which indicates im a carrier ,i challenged them as i have classic symptoms but my G.P at the time explained that its possible to present withy symptoms but unlikley given my levels,so off i went and did some research ,its states even if you are the carrier of single gene mutation and have raised iron you can present with symptoms and go on to develop hemochromotosis.I asked my G.P and he said annual blood tests and possible venosection would be the correct approach?Ive sufferd with health problems since 21yrs of age ,over the years and worsening of symptoms its gone from M.E to sjogrens and now lupus and fibromyalgia.The meds make me so unwell that i manage with pain meds and amytriptaline if im desperate.I feel toxic my lymph glands have been tender for over 12 months ,i have neurological involvement and heart issues,terrible tendon/ligament/muscle issues,and most of the issues that come with lupus/connective tissue disease.I wander if removing some blood would improve my symptoms a little?my eyes are pretty yellow and alcohol has an adverse affect on me .Im completely exhausted and intolerant to exercise or stress of any kind ,on movement im exhausted my heart pounds and i cant wait to lie down ,i drag myself around everyday because i have to for my family sake .Weirdly its as if im anemic ?but im actually the opposite ,Sorry to bang on but this is so interesting to find someone in a similar posistion.Can i ask if you suffer these symptoms?or how you feel on a day today basis,and any advice regarding the iron issue ?i wish you well ,thankyou ,brave

[What-up in reply to brave]

Unbelievable! Your symptoms that you described with the tendons and weak muscles and muscle pain and fatigue and everything, that is exactly how I feel. I am usually low on blood and I have to get Procrit shots to keep my hemoglobin up but Ironically enough, my iron now is high and I feel like I need to be in the hospital. And when you say alcohol has an adverse effect what is this affects?

[charz001]

Hi Brave, I can really understand what you are going through. Both Hemochromotosis and Lupus can give you all these terrible symtoms that you are experiencing. Severe fatique, headaches, nausea, painful body all over, painful joints, just horrible! Thats why it took the Drs so long to find out that I also! had Lupus. I was having V-sections, my ferritin levels had come down and then all of a sudden i was so sick again, my Drs thought i was neurotic or depressed and i got real upset with them and eventually bloods showed Lupus aswell! I am being very well managed by my Rheumotologist for the Lupus and i make sure that i have regular bloods taken to check my ferritin levels and if they go up then off i go to the Labs and donate about 600mils of blood and feel like a new! person. I really suggest that you do this. First check your ferrtin levels with a blood test, insist ! on this blood test and then if its too high, then go for a v-section. Do remember that Lupus also does! make you aneamic, so its a fine line between.. is it a Flare or is it iron overload and that the terrible part of me having both these disorders and for you too. Because of the costs and also flares dont always show in bloods i just go for the ferritin checks first if im not well,and if necessary go a v-section. I trust this will help you. It is tough to be strong and really hope that the process of elimination and a V-section will make you feel better. We will never be hundreds but i am so much! better than ever before, now that i am managing both my disorders and i have also done a lot of research because not all Drs go into great depth on these disorders. One more thing, i do hope that you are taking Vit D ! it is imperative for Lupus people to take Vit D. Bye for now.

[roobarb]

Thank you for both of your stories.

Although I don't suffer with Hemochromotsis, only lupus. I know someone who was diagnosed with this condition a few years ago. He was told it's very rare & their was no one the doctors could put him in touch with to discuss it with. Which must be awful, because I don't know what I would do without the support on this site.

May I tell him about you both? Maybe he will find it helpful to need what you say here. Have you found any good websites about this condition that he might find helpful?

Best wishes to you both. X

[ljohnstoniron]

Charz001: CFS or CFIDS = chronic fatigue syndrome = chronic fatigue immune deficiency syndrome . Take a look at my web page at ibs-hemochromatosis-fibromy... and see how all these things overlap.

[Plonkton]

Hi charz001 I'm a Heamochromatosis sufferer and I'm 95% sure now I have Lupus as well...if you could see my body now you would see all the blotches wrists face upper legs. Iits a Saturday...I will be ringing my GP on Monday requesting what I understand to be an ANA test for Lupus. I'm aware this post is 4 years old...and it's a relief that if I'm right I won't be the first person....Any chance you could get in touch let me know how things are going.

[Moxie5]

I also have both lupus and hemochromatosis was diagnosed 2013 with hemochromatosis. How has you health been