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Carolynnm 04-26-2006 12:54 PM

5 month long lupus flare?
Has anyone ever heard of a 5 month long lupus flare? Could major surgery trigger a lupus flare-up?

Suni321 04-26-2006 02:25 PM

Re: 5 month long lupus flare?
Hi Caryolyn, a 5 month flare is certainly possible. From the postings on this board it seems like "flares" can really be from days long to months - it's very individual. My current flare is going on 6 months long. It seems to go through stages where I appear to be getting better for a week or two and then suddenly relapse backwards. It's definitely frustrating. The surgery question is a good one. It certainly can cause a flare up for some and did for me. Personnelly I need to have a follow-up surgery but, we are pushing it out until I stablize.

Hope that helps answer your question.
Suni :wave:

Carolynnm 04-26-2006 04:05 PM

Re: 5 month long lupus flare?
Thanks for your reply. I get very discouraged when nothing I do seems to help me to feel better. When I try to just live normally, it knocks me back down again. Very tiresome.

Carolynnm 04-26-2006 06:58 PM

Re: 5 month long lupus flare?
Does Plaquenil help to ease the fatigue and the aches and pains. The doctor started me on it 6 days ago. He said it would take some time. I go back to see him in a month to see what the blood tests show. I have been hypothyroid for 5 years and my levothyroxin has never really relieved my symptoms. I found a rheumatologist who is really interested and is checking everything out.

teachergirl64 04-26-2006 10:45 PM

Re: 5 month long lupus flare?
[QUOTE]Could major surgery trigger a lupus flare-up?[/QUOTE]

Any surgery can trigger a flare. :rolleyes: As a matter of fact, that's what sent me to the doctor to begin with. I'd had outpatient surgery for a kidney stone and just never bounced back.

life_is_good 04-27-2006 04:17 AM

Re: 5 month long lupus flare?
It is absolutely possible to have a 5 month flare. I thought my flare would just pass on it's own, but I found that it actually snowballed and got increasingly worse. Please don't try to ride it out. I was put on steroids to "break the cycle" as the rhemy put it. It definitely did the trick for me, but maybe you should put a call into your dr. and ask.


Suni321 04-27-2006 10:08 AM

Re: 5 month long lupus flare?
Plaquenil was really helpful for me but, it took about a month before I really started to notice a difference. It helped me feel more "normal". Less ache/pain in my joints & muscles - my energy levels were up. But, sometimes it takes patients 3+ months to really feel the full effects of Plaquenil.

However; I had to stop taking Plaquenil due to issues with my vision - there's a very small percentage of Lupus patients that have this side effect with it. (It's important to see a eye doctor when you start taking it so they can check your eyes at the beginning & then 1-2 times per year).

I've been on high doses of Prednisone steriods since going off the Plaquenil & the side effects are not good. I would definitely prefer to be on the Plaquenil!

That's great that you've found a Rhemu Dr. that interested in helping you get better. It's so nice when you have a Dr. that is truly understanding & interested in you as a patient.

Keep us posted on how you are doing.
Suni :wave:

Carolynnm 05-17-2006 08:26 PM

Re: 5 month long lupus flare?

It has been almost 4 weeks since I started taking the plaquenil. I am feeling somewhat better. When I have some busy days or my sleep cycle gets messed up it comes right back again. Since I wrote I had a colonoscopy that came out great then 2 very busy days following. I've been trying to get back on my feet from that. Now my allergies are really acting up so it is hard to tell how well the medicine is working. My fatigue has definitely gotten less of a problem, and my head is clearer, at least I'm not walking around with cotton on my brain. I go back to the rheumatologist on the 23rd and am anxious to have him tell me what the lab tests showed and what he thinks is going on. I am almost certain my thyroid medicine is not adequate. Also my last EKG showed some troubling changes from the one 6 months ago. My wonderful primary care doctor didn't even talk to me about it even though he saw it because he didn't order it, the surgeon did. I'm going to take it and the previous one with me to the doctor next week and see if I need to see my cardiologist.

This feels like a nightmare that doesn't end. My poor husband is trying to be patient and understanding, but I know he doesn't understand. I plan to have the doctor talk to him and try to explain what is going on. Wish me luck!

Carolyn :)

watoozie 05-17-2006 08:43 PM

Re: 5 month long lupus flare?
When I was put on Plaquenil, it took a good four to five months for me to really see a difference. It has made me feel so much better. My glands have gone down, my rashes are gone, my aches are not quite as bad. I am having a flare right now, my Mother is dying of lung cancer, I think the stress is what is causing it. But I still feel better than I did a year ago!! Hang in there, maybe it will work for you. I am also on a anti-inflamitory Feldene.

Carolynnm 05-17-2006 09:13 PM

Re: 5 month long lupus flare?

I'm so sorry about your mother. When it rains it pours. This has to be a difficult time for you, no wonder you are flaring. Hang in there!

JennJenn77 09-28-2007 07:06 PM

Re: 5 month long lupus flare?
Help! Im new and confused on how to post messages I have a lot of lupus symptoms and a negative ANA Ive been miserable for almost a year. I feel so alone and like a hypochondriac.

VeeJ 09-29-2007 05:23 AM

Re: 5 month long lupus flare?
JennJenn, To learn how to post, click "FAQ" in the blue bar above. Afterwards, you could even start a new thread & introduce yourself again (only to get more people to see it & respond).

FYI, I have the intermediate "subset" called SCLE & had years of photosensitive rashes & decades of varied problems. I was ANA-negative but positive for anti-Ro, and it truly took YEARS for me to get answers. Not to worry: we have HUGE variety here. So I hope you post again very soon. Bye for now, sincerely, Vee

c57s53 09-30-2007 08:38 PM

Re: 5 month long lupus flare?
[QUOTE=Carolynnm;2319545]Has anyone ever heard of a 5 month long lupus flare? Could major surgery trigger a lupus flare-up?[/QUOTE]

Hi Carolynnm,
I was in a major flare that lasted 14 months and my diagnosis came in the middle of it. My Rheumatologist told me that Lupus flares tend to last months, not days. I knew that something systemic was going on based on my symptoms as it moved all over my body, painful feet, joint pain, asthma, pneumonia that wouldn't go away, bronchitis, hepatitis, extreme weakness, headaches, emotional tears that wouldn't stop, restless legs, neuropathy, shortness of breath, no muscle strength in my legs.......not all at the same time but all within the span of 14 months and 1 thing led to another or another thing came on while some of the others were still rhyme or reason to it, just crazy stuff. All the while it was going on though I would get these very strange feelings all over that literally scared me to death. It was basically like having a sensory type seizure but being awake while it was happening. They scared me so bad because I didn't know what was happening to me or how far it would go. I hope I never experience anything like that again. Has anyone ever had that?


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