[Babs11]

Hello and thanks to anyone who reads/responds to this. I am wanting to get some basic advice about lupus and what happens if you "ignore" it. I am in the middle of what I guess would be called a flare. I am running a fever, losing hair by the handfuls, having trouble sleeping from the pain in my knees, ankle, elbow, feel this weird dizzy feeling, and am just exhausted. I do not get a rash on my face, not sure if that is an absolute criteria for Lupus.
This happens to me about 3 times a year and when it does it lasts for a couple of weeks. I went to my family doctor about 2 years ago and she ran some blood tests and referred me to a rhematologist because my ANA test was positive. I went to the appointment and she was wanting me to do a whole lot more blood testing and X-rays and said I for sure have arthritis ( I am 34 now so this totally freaked me out to hear). From what I understand all they can do is put me on steriods and I will gain a ton of weight and still be sick when I have to get off of them eventually. I never went back and now that the pain is sooooooo intense and my knees are making a grinding horrible sound I am wondering what to do. She prescribed relafen and mobic and neither one even touch the pain.
I am wondering what you that have been diagnosed would say to all this? Do the treatments really help? Is it worth it to gain a ton of weight on the steriods? What am I facing if I keep on trying to just deal with this without treatment? To be honest I think I am scared. Any advice is a blessing to me and I appreciate it! Thanks! Barbara

 

[oesa]

HI Babs. I think you probably already know the answer, but you need to get to a rheumatologist - if the one you saw doesn't specialize in lupus, find one who does.. Steroids aren't the only option for treating lupus (there are steroid-sparing drugs that you should ask about), and leaving your illness untreated isn't wise. In addition to the obviously tough time you're having now, lupus can cause serious issues with internal organs, and you can't assume that it will all just "go away". (Kidney damage for example is symptom-less).

It's not an easy road, so I'm wishing you strength.

Best,

Lisa

 

[Sage Hen]

Babs,

I want to second what Lisa has said. Your blood vessels can thicken, and your cholesterol levels can shoot up, in addition to possible organ compromise.

I do hope you get to a Rhuematologist very soon.

Best Wishes,
Sandy

 

[Babs11]

Thanks for the quick response Lisa. What treatments are not steroid related and what treatments have helped you personally? I guess I am looking for some hope ~ what treatments have you had that have really helped you...thanks again!

 

[KarolH]

I can only add to what the other 2 have said here, get to the doctor ASAP.

I would not want things with your health to escalate and lead to damage that cant be reversed.

Please make that appointment. :wink2::wink2::wink2:

 

[onetay]

Barbara,
Steriods are not the only thing that can be done, I know. I have sle, ra, sleep apnea, migraines, curvature of the spine, tennis elbow, bone spurs, and got only knows what else wrong with me. I am 41 and have had all this going on since I was 22 years old. If you do not treat lupus it can kill you. I don't mean to be bold but there is no time to run around the bush with this stuff nor do I have the energy to do that lol. If you are in that much pain they can give you pain pills and anti-imflamitories to help. I am on mobic also. I take so many pills but that is because I must stay working some so I can pay bills as I am the provider for me and my daughter. If you are able it does help to rest a lot, I mean a lot. I would have to say you should continue to look into your problems as they usually come in clumps lol as you can see from my list. I do hope that you will go back to the doctor and remember now you know there are other things that can be done so steriods are not the only answer and maybe should be at the bottom of the list of cures so to speak. Let us know how things are going. I do hope you start feeling better soon.

 

[Maia]

If you were diagnosed with lupus but not prescribed Plaquenil (the first choice of medication to treat non-organ involving lupus) then you need to see another rheumy. If you decided to just not go back because you didn't want to be on prednisone which you *thought* was the only treatment... then you need to go back to that rheumy for your follow up appointment a few years late.

Many people get by very well with just Plaquenil for treatment & never have to go on steroids. But some of us do go on prednisone at lower doses for shorter periods of time just to get through a severe flare up. I've been on it a couple of times & have to say it's worth a little weight gain to be able to function at some level!

You can have this discussion with your doctor about your concerns, and get her advice. If you are only sick with lupus symptoms for a total of 6 weeks a year... then I can understand your reluctance to start a heavy duty sort of treatment. But Plaquenil may help to prevent some flares if it's lupus, and may also reduce the severity of the flares. A very short course of prednisone may also be very helpful with minimal side effects.

Good luck to you at I hope you'll go back to the doctor and see what she has to say & discuss your concerns with her.

 

[Pink Pearl]

I agree with Maia. Plaquenil is but one of the meds available. I take a high dose prescription NSAID, meds to control my migraines, diuretics as I have chronic edema in my feet and legs, antihistamines to control environmental allergies, meds for GERD, plus a few I use on occasion. Without these, I am so stoved up I can barely move. I am one of the minority of people who are not able to take plaquenil. When I was taking it, it helped the arthritis, but caused side effects that were worse than the help it gave me.

You can also have permanent damage to your internal organs, lungs, heart, gi tract, kidneys, pancreas, liver, and even brain. Yes, lupus can cross the blood/brain barrier. Many doctors used to believe it didn't, but it can and does. That is why migraines get caught up in lupus for many of us. Uncontrolled it can cause seizures. So, it is very important to get your lupus diagnosed and treated as soon as possible.

I happen to fall into that minority group of people who have never had a positive ana test. I am positive to anti ds dna, apls, acl, and a couple more, but have always stayed neg on ana's.

In my family lupus is genetic. We lost my first cousin to lupus at age 36 several years back. She died of her 10th heart attack. She was also ana negative. She started to have seizures at 13, but was misdiagnosed as epilepsy, but actually they were lupus induced and the lack of proper treatment caused permanent damage. Our lupus nearly mirrored each other, but it affected her heart and did damage to my lungs.

Proper care and follow-up is very important and can possibly prevent the disease from doing permanent damage. So, please pursue getting diagnosed and proper medical management. As much as is known now about lupus, it is not worth risking damage that could have been prevented.
Sally

 

[x_claire_x]

Get some care..

Please go see a rheumy for some advice and care. There are options out there and they are better than the pain! Better than hurting your body further too .I have had to take a few months course of steroids and haven't put on a pound... I have been careful about keeping my dog walking up and watch the chocolate cravings, but feel soooo much better would be ok if I was a little heavier for a short time to relieve the pain. Coming off them now, so they are not necessarily needed long term... certainly the quicker the intervention hopefully the less treatment required, so it makes sense to go get some help. Wishing you well.
Claire X

 

[doodlebee]

I am one who has not had to be on steroids (and am hoping I never will!). There are non-steroid anti-inflammatories, Plaquenil, methotrexate, etc...definitely treatment options other than steroids that can help not only symptoms, but also may prevent or lessen disease progression and damage to your body.

You also need blood work done on a regular basis. This is imperative for lupus patients even when they feel well since a lot of the damage can occur without symptoms. The blood work will help your doctors keep on top of what's going on in your body internally. Most rheumatologists will do blood work every 3-4 months, minimum...that's if you're feeling well and not having any serious problems.

Well, I don't think I added much to what everyone else has already said, but just wanted to reiterate how important it is to stay on top of lupus. With treatment and follow-up, it can be very manageable...but it can also become very serious, even life-threatening, especially if left untreated.

 

[Katharine]

Hello Babs and welcome

I think we can all understand denial...up to a point!! BUT you really do need to get back to a rheumatologist!! How high was that positive ANA?

Not treating lupus (or another auto-immune disease) is potentially very dangerous. You are putting your health and even possibly your life at risk.

Steroids are very far from being the only treatment for lupus and indeed they are avoided as much as possibly by docs. There are other disease modifying meds that would be used as a baseline for your disease with PERHAPS some steroid use if absolutely necessary (BTW Steroids don't make everyone gain weight - I don't).

The drug Maia mentioned, plaquenil, is a very very safe baseline med for lupus which may well be enough to reduce frequency and severity of flares for you. If it turned out not to be enough then other meds can be added (Nowadays, docs prefer a little mix of meds to obtain full effect with the minimum of side effects).

You also need to be followed up to have regular blood and urine tests done. Some of the damage lupus can do may not be immediately obvious to you but might be very serious.

There is a lot of chance that with baseline treatment (starting for example with plaquenil) you will suddenly find you can go back to a near normal life and you'll be wondering why on earth you left it so long.

If you are worried about which rheumy to see you can always post here in the find a lupus doctor section for some suggestions on a good rheumy.

Keep us posted
Katharine

 

[Babs11]

Thanks to each and everyone of you that took the time to respond...thanks for listing the medications that can help too, that really does give me hope - I will get back to the doc :worried:

Blessings,
Barbara

 

[KarolH]

Let us know how you make out at the doctors Babs and good luck.

 

[keebler]

Hi Barbara,
I have only been on short bursts of pred and I was on a low dose for a couple of months to help me get over a flare.
I am now giving methotrexate a try to see if that helps. Plus generic plaq since I was diagnosed.

Please let us know how your doctor's appointment goes.

Take care,
Lyn