Cystic Fibrosis and lupus?
Question:
My question is, with his CF how much more of a toll would Lupus have on him? I want to talk to him, but he's a bit shooken up and trying to figure out how to tell his dad...Im just trying to stay strong for him and let him lean on me.
So anyone that can help me, I appreciate it so much.
Thanks
Answers:
I have Cystic Fibrosis but am not very familiar with Lupus so my comments are based on some quick internet research.
Since Lupus is an auto-immune disease and your boyfriend already has CF his body is going to attack areas of his body that are healthy in addition to those that may already be damaged or compromised by the CF.
One of the side effects is inflammation, which could impact his PFT results and breathing capabilities. I wasn't able to find information on how severe the inflamation can be so I can't comment on how much impact it could potentially have, and some of that would depend how much his lungs are damaged by the CF.
I'm sure the docs are probably on top of it, but I did see that there is a type of Lupus called systemic lupus erythematosus (SLE).. It's caused by hypersensitivity to a medication and causes the body to make antibodies that attack the body's own healthy cells. Medications commonly known for this are:
Chlorpromazine
Hydralazine
Isoniazid
Methyldopa
Penicillamine
Procainamide
Quinidine
Sulfasalazine
Symptoms of the SLE usually occur after 3-6 months of the medication usage. I'm not specifically familiar with any of these drugs and don't remember being treated with any of them but that doesn't mean they aren't used for something associated with CF.
Best thing to do would be to talk further with the doctors, get more tests - including a second opinion from someone that specializes in Lupus treatment, and review your boyfriends medication history both current and past.
Since he's probably known for years that he has CF, likely since early childhood, he's used to the idea of one disease and what it entails. However, when we're thrown a new and serious illness it tends to hit us just like it would a 'healthy' person. When I found out I am diabetic (a result of the CF) I cried all the way home from the doctors office and was more worried about the diabetes than the CF. He'll get used to it but may need some time and will need your support.
As far as telling his dad, it may be better to wait until you have the confirmed results of the tests. If he and his dad are close then it may be better to just flat tell him and get it over with since his dad may very well notice that something is bothering him.
Above all, try to keep a good sense of humor about the situation. Find something about it to laugh at - it will help a lot. I'm sure you have plenty of CF jokes so find ways to add jokes or humor into the Lupus aspect. Contact a Lupus support group and see how those individuals deal with it, what impact it has to their lives, etc.
Sorry I can't give you specific information.
Best wishes.
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I am not too familiar with CF but I am with Lupus. The tests you are probably waiting for are blood work that would be his ANA, Sed Rate and a C-Reactive Protein. I am going to send you some lists of criteria to be DX with Lupus and its possible that his Lupus could be all caused by some med he is currently on and once stopped the symptoms of Lupus will stop. Lupus is a chronic life long autoimmune disorder that effects joints, skin, organs etc... it will attack just about any part of the body it decides even the brain.
Here are the 11 Criteria
The Eleven Criteria Used for the Diagnosis of Lupus
Criterion
Definition
Malar Rash
Rash over the cheeks
Discoid Rash
Red raised patches
Photosensitivity
Reaction to sunlight, resulting in the development of or increase in skin rash
Oral Ulcers
Ulcers in the nose or mouth, usually painless
Arthritis
Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
Serositis
Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
Renal Disorder
Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
Neurologic
Disorder
Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
Hematologic
Disorder
Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
Antinuclear
Antibody
Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
Immunologic
Disorder
Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
Most doctors only use between 4 and 5 to make the DX of Lupus and most Lupus patients can be managed by the drugs plaqunil and predisone. or methotrexate. I will send you a few links in the next section so you can read more for your boyfriend to put you two at more ease. Until you know anything for sure don't rush to make any judgments. I am sure your boyfriend has so much to deal with just with the CF let alone him having possible Lupus... so I will keep him in my thoughts that he does not have it. Please check out the links because I am sure they will be most helpful to you and to him. The last link I have sent is an online support group that I belong to and there are men on there as well.. If you would like to join and your boyfriend please feel free to do so. I hope this helps you.
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