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Discussion Starter · #1 ·
I'm curious to know how long other people's flares last?

I'm only recently diagnosed but I've had issues going on for nearly 5 years. It seems to me that things have gone progressively downhill. The flare I'm on now started in July, and I can't remember ever feeling this bad. I'm so drained and achy that I don't even want to get out of bed.

The worst part is - going home after work to rest isn't really anything to look forward to either because I'm just going to lay down and ache. There's no escape from the aching, drained feeling.

I just can't wait for this flare to be over - I need a break. However, if I look back at the course of this disease, it seems that the flares have been getting longer over time with shorter breaks in between. Does this mean that someday the flare will never go away and I'll be on it for the rest of my life? I'm not sure I can face that.
 

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Hi there :)

This is rather like the question "how long is a piece of string?"...

Flares can vary greatly from one person to another as can the disease.

From what I understand you are only recently diagnosed and so, I presume, haven't been under treatment? Disease remission without medication is very rare - When we hear of remission it is usually meidcated remission.

My disease activity also got steadily worse over the years without treatment, however, once treatment was finally balanced I saw a huge improvement - so basically "no" it will not always be like this!!

hope that helps a bit;
Katharine
 

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Hi Cleo. I can echo what Katherine says. I had a medicated remission for around 2 years. It ended at the beginning of September and it was a nightmare. I did eventually get to see the rheumatologist who put me on steroids and after almost 3 weeks I'm now just about back to 'normal' again. Flares are scarey - even more so if you don't get treatment quickly.
Hope you get things sorted soon.
Lis :)
 

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Hello Cleo
I am a very, very lucky person because I experienced about 7 years of medication-free remission.

The main sympton of my last flare was thrombocytopenia (low blood platelets) and I was treated with Plaquenil and high dose Pred. After about 18 months things settled and I changed my GP to one who didn't think I needed to be taking Plaquenil so stopped prescribing it. I also got "lost" in the administration of the Rheumy Dept and consequently didn't have any follow-up appointments.Because I was mostly well during that time I just about forgot I had Lupus.

Since sharing my story here I've begun to appreciate just how very fortunate I've been and I'm grasping onto the hope that if it went away for so long last time, maybe I will be as lucky when this flare settles down.

I only wish that everyone could have the same good fortune that I have.
Take care.
 

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Hi Cleo,

I hear you loud and clear. I have been sick since 2003 and it has been one issue after another. I was not properly diagnosed until May/June of this year so I am hopeful that now on the right medicine I will soon feel better.

I do not get much relief from pain laying down either. I wear a Fentanyl patch for pain and take Percocet for break through pain now. I have a lot of G.I. issues so I am backing off of the "take by mouth" pain meds when I can.

I am sorry your dealing with not feeling well. I am new to Lupus and learning so I have no good advice to give you but wanted you to know I am thinking of you and sending warm hugs your way.

Hope you get to feeling better and enjoy the holidays.:wink2:
 
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