What next...

[Ratana21]

My dr put a portable ECG monitor on me to wear bc I've been having chest pains and shortness of breath. Fatigue has hit me harder these past few months and pain is almost every day. Feels like I'm flaring every day. I'm on predisone and plaquenil. Is plaquenil a chemotheray drug? I heard that it is. Just scared of all these things going on. Keep asking myself...what next

[Jenbo41]

Don't wonder what's next stay focused on what's going on today. I try to take this day by day, it helps keep me sane. I'm not on meds yet, I've been sick for 10 years but just diagnosed last week. Hang in there.

[Ratana21 in reply to Jenbo41]

Ten years? Omg. Sounds like me. I've had these symptoms for so long but all my other drs kept saying it's nothing and kept giving me pain killers which I didn't want. Finally found this dr that took one look at me and said *is that a malar rash*. Never been so happy to have a positive symptom of something lol. Just knowing that my dr doesn't think I'm a hypochondriac or just being overly dramatic helps alot.

[wsjkcj1]

Plaquenil isn't a chemo drug. From what I understand it helps block the signal of the antibodies. How long have you been on predisone?

[Ratana21 in reply to wsjkcj1]

I just started prednisone. But my dr only gave me 10 pills. Not sure how this will work. Plaquenil- i was supposed to have started back in aug but been holding off. I just started on that. Scared to take it and I don't even know why.

[wsjkcj1 in reply to Ratana21]

I've been on Plaquenil for over 2 years and I don't have any side effects. It did help me quite a bit. I still have flares from time to time but my Dr. gives me a step down Prednisone which is usually 9 to 10 pills and I feel much better after taking it. My major concern with Plaquenil is the side effect of it causing deposits on your eyes that could cause vision problems if not caught in time. I have to see an ophthalmologist once a year to check for it. I was told that doesn't usually doesn't happen to people until they've been on the drug for several years. I may have to stop at some point and go to a chemo drug or immunosuppreasant but I'm more afraid of those than Plaquenil so I'll take it as long as I can. I think you should give it a chance and see how it works for you. Also, anti-inflammatory diet, exercise when you feel like it and try to reduce your stress. Dr. S is correct that stress is a major contributor to flares.

[vaderviper]

Plaquenil is an anti-malarial drug. It is used for Lupus patients because it has been shown to help prevent or limit a vasculitis; it has also been shown to prolong one's lifespan. There is a chemotherapy drug used to treat Lupus.......it is methotrexate. If you are having continuous flares and discomfort/pain.........you may want to ask your Dr. about putting you on a steroid sparing medication like azathioprine or mycophenolate (both are immunosuppressants). These meds will help suppress your immune system while allowing you to take a lower, safer long term dose of prednisone (ideally...but not always possible...you want to keep the dose 7.5mg or lower per day). If you are put on 1 of these drugs, you need to have blood tests regularly. Immunosuppressants are great for reducing and sometimes eliminating Lupus flares. Your Dr. is right on track by having you wear a monitor. It is hard to believe but extreme stress can cause many of the symptoms you describe. I wish you luck!

BTW: Overwhelming fatigue is the number 1 complaint of most Lupus patients.

Dr. S

[Ratana21 in reply to vaderviper]

My dr is concerned about my chest pain (like a sharp pain out of nowhere) and I'm sooooo sensitive to the light. But I'm struggling through this fatigue...I've never felt so not in control. But I can only push myself one moment at a time. I don't even look at it as day to day anymore bc these things hit me so fast that it's literally one minute I'm ok next minute I have to stop everything. It does help that everyone here understands and I don't feel so out of place.

[vaderviper in reply to Ratana21]

Ratana21.....unfortunately many people with Lupus are extremely light sensitive (I am very sensitive, to the point I get extreme rashes and erythema....which is severe flushing of the skin.....a vasculitis). I had to retire due to my extreme fatigue and many other problems from Lupus. I do empathize with your desperation. After your Dr. determines what the problem is with your heart, of it is your heart...I don't know your whole history, your age, other health problems so I would not even dare a guess and it is not my field of expertise (I am a Neuro-Ophthalmologist). Once it is determined what is causing your chest pain and that can be treated, please ask what your Dr. ....... he/she thinks about you going on an immunosuppressant - within about 2-3 months you should notice a tremendous amount of relief from many of your Lupus symptoms (maybe yes or no with the fatigue). I am sure you are aware it can take years to diagnose Lupus and then it takes time to find what medications will help the most. Many patients do well on Plaquenil alone, while others need prednisone also. If severe symptoms persist, often a steroid sparing drug is added to alleviate symptoms.

After the heart monitor is read, it can take a few days for your Dr. to get the results. I wish you a quick response with good news and hope you are treated with something that will give you much needed relief.

Dr. S.

[justjan1944]

no, it is not a chemo drug. It is what most people with lupus are on. Hang on Sweetie.

[Ratana21 in reply to justjan1944]

thank you so much.

[Hidden]

Hi Ratana21,

As other members of the community have said already, hydroxychloroquine is not a chemotherapy drug and is actually an antimalarial treatment which has been shown to be effective for treating lupus. You can learn more about the various treatments of lupus in our factsheet, ‘LUPUS and Medication’ at lupusuk.org.uk/wp-content/u...

If you want more information about lupus fatigue and some tips for managing it, I recommend that you have a look at our blog article here - lupusuk.org.uk/managing-fat...

If you would like more information about lupus and available support, you can request or download our free pack at lupusuk.org.uk/request-info...