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Brenda
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Discussion Starter #1
Warning: You probably won't care but it made me feel better to write all this down.

I saw my rhuematologist yesterday. It has been 2 years since I first saw him and was diagnosed with SLE. Right around that time I joined this site and it has been wonderful. I started thinking about the last 2 years and what has happened (disease wise... everything else would take a book!)

I've now been on plaquenil for 2 years. The doctor said yesterday it isn't doing anything for me as far as he can tell but he doesn't want me to go off it just in case it is doing something we don't know about.

I've been tried on more nsaids and pain medication than I can remember and because of heart and lung disease all but 1 nsaid (mobic) and 1 pain medication (darvocet) has been ruled out. Just my luck, the 1 that works is about to be taken off the market.

I've had more kidney infections, pleurisy, pneumonia and flares than I care to even think about.

I've been on steroids then off steroids, then steroids shots, then back on steroids, then off steroids and now been told to try 2mg a day and see if I can handle it (I get severe depression from them) because I'm in so much pain and my inflammation level is so high I can't hardly stand it.

I've now got high blood sugar, high blood pressure, Lots of edema, brain fog hair loss. I believe most of this is due to medications and not sle.. then again what do I know?

Methotrexate was supposed to be the miracle drug and has now been ruled out due to a hereditary problem.

A wheel chair and oxygen are now standards in my life.

I asked him yesterday "Is all this from a bad flare or is my disease getting worse?"

He looked at me sweetly and said "both"

Yesterday he put me on gold tablets and now perhaps that is the miracle drug. Other drugs were ruled out because my blood test came back showing my liver was "off" (he didn't say what or high or low)

This has been the ?progress? of two years. I can't wait :scaredy: for the next two years.
 

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Brenda,

Firsty *hugs*. I just wanted to reply to your post because I want you to know you are not alone. Lupus is a complete nightmare and it does seem that things just get worse and worse and you keep trying a billion different things that either dont work or have horrible side effects. And in the end you have no idea what are side effects and what is lupus. I have no answers, just wanted you to know that I completely understand how you feel and wanted to offer my support xxxxxxxxxxxxxxx
 

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:rose3::wavey: Hi Brenda,
As others have said it is so frustrating and you feel you are going round in circles. The people on this site are fantastic and never judge anyone.
I have spilt my heart out and the support I have received is fantastic.

Keep your chin up Hugs & Kisses
 

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Pollianna
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Aww Brenda it must be drving you mental. You have a great doc there thank goodness....

I'm wondering how much stress you have been under? I know that stress is a real baddie for me, I can't tolerate even the smallest conflict as it makes me so weak and my desease runs riot. I haven't any medical knowledge as I am newly diagnosed but I will say have a look at your environment, your activity and stress levels. I know with ten or so yrs of no treatment the only way I coped was to reduce stress or eliminate the source and rest as much as I could. Now I work 12 hr days am getting worse again rapidly but I know what's doing it . I think or some of us, treatment can be half the battle not saying if you are the same but maybe worth having a lil look at the other things going on.

Hope your feeling better as you read this. xxP
 

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((((((( Brenda ))))))

I am sending you hugs. Its sounds as though you have had a really tough time, and that it is getting you down, which is only natural. I really hope that this new treatment works and offers you some relief. I have just been put on steroids again after a year off them. I vowed I would never take them again as I hate the side effects, yet I was so relieved when I was put back on them as I couldn't stand it any more. I really hope that you see some improvement soon, don't give up. We are here for you, come and vent anytime!!!!!

Maybe see you in chat soon

Take care

Deb
 

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Hello Brenda and (((((((hugs)))))))

I'm so sorry to hear that you're in this frustrating circle of events and please don't worry about offloading, we DO care :hug:

I think in fact that many here can sympathise with you greatly and you have managed to put into words what many people feel.

I am lucky not to have the same extent of problems that require too much wheelchair use and no oxygen but I too have been wondering recently if I am not simply trying to row a boat with one oar(paddle) and going around in circles and yep, for me too, it's coming up to two years of treatment.

I have had a good week this week and I'm really enjoying it, you never know, this time it might last a little longer.

Sorry I can't actually DO anything for you :grouphug2:

Katharine
 

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Brenda,

I'm so sorry you're having such a tough time. I have no answers, just wanted you to know I care.

It's stories like yours that make me wonder if that is why my rheumatologist refuses to diagnose me with lupus despite the fact I meet 7 out of the 11 criteria --- it's kind of a no win situation.

Barb
 

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The Other Illinois Tammy
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Brenda,
I am so sorry you are having so many problems without much if any relief. It can be a rough road to finding the disease and then a rougher road to find the right mix of meds to do the best for you. I do hope with the edema that you are on fluid pills on a daily bases. I have the same problem and have to take 2 different ones and the chance of taking a second pill in the afternoon for more swelling. Well I do hope the next 2 years are much better than the past 2 years.
Remember that we are here if you need us for anything. I do hope that you start feeling better.
 

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Yep I uderstand.
I started Plaquinel beginning March 2007 and pred three weeks later. So yes its been two years of treatment for me too.
I was in quite a mess in the beginning so of course I can see the improvement but this plateux of fatigue and fog is dispiriting.

I suppose I subconsciously wait for some spontaneous recovery but know thats unlikely.

Big sympathetic hugs to you Brenda and katharine since I realise you both have much more to cope with than me. Thinkig of you both sharing this disconcerting anniversary.

Ps sorry if spelling is off........bad head day
 

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Dear Brenda, (and anyone else in a similar situation) I am really sorry for you. These Anniversaries do hit hard. Brenda, You seem to have so much going on that it is making the choice of medication very limited for you.

I did not make much progress in my first two years after diagnosis either but cannot claim to be as unlucky as you are.
I am so sorry for you,
x Lola
 

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The only thing about Lupus of which I am absolutely sure is that nothing about Lupus is predictable or necessarily permanent.
Douglas+
 

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Brenda,

I can most certainly understand where you are standing today with your health and the progress or the lack there of, It is so frustrating, just when you think that you have things under control and you are in the right direction with medication and all, you find out that nope, things really haven't gotten better, if not they have gotten worse. I wonder if Hallmark makes a card for such an occasion? Probably not, although they should. Hold your head up and things will get better, someday-somehow. There will be something that comes along and will make an impact on your life and you will feel much better.

I will be thinking of you Brenda. If you need anything, just let me know.


Nancy
 

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I've also been doing a mental review as you have. It will be two years in early May and I was hoping I'd be in remission by now, like my niece. Instead, the meds just keep me comfortable and functional most of the time, though I know the disease is progressing. These anniversaries are tough and I really understand your frustration. If I had deteriorated as much as you seem to have, I'd see another rheumy, just for another opinion. Sometimes a fresh pair of eyes and ears can open up new opportunities. At the very least, you'll know you've done everything you can to help yourself. I wish a huge improvement for you in the next two years.
 

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Brenda
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Discussion Starter #14
Thank you all for your replies and I pray each of you get good news this year! I'm sure had I not been diagnosed and been on the medication I am on things would be much worse. For this I am thankful. Here's praying that each and every one of us gets a good report soon!
 

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(((Brenda)))
You have had a very tough battle.:( Having lupus is a huge roller coaster ride of emotions.

I like Jesse's idea get a second opinion. Just to see a new rhuemy can see or do something different.

Please keep us posted on how you are doing. I have missed you on the forum.
Love,
Lyn


 

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Brenda
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Discussion Starter #16
Well the next 2 years is starting out dandy. I just got a call from my nurse that some sort of blood test came back showing celiac disease.... hope I spelled that right. When I asked what it was she told me to google it. I'm so good I'm getting diagnosis' by phone now :rotfl:
 

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My goodness Brenda:worried:

You seem to be on course for record breaking. Sorry about this latest development. I hope they are going to call you in and talk about diet etc? Not just leave you to google it?

I have to say I have some understanding of your frustrations because it seems like everytime I see my Rheumy I get diagnosed with something else or get referred to another specialist for this or that procedure/test. Im kind of hoping I will reach a plateau soon and all the new diagnosis will stop.

Many hugs Brenda and lets hope your plateau has been well and truly reached.

Joan:rose:
 

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Brenda
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Discussion Starter #18
Thank you Joan :) I see the rhuemy again in about 3 weeks.. he has me on 1 month appointments now. I have a feeling he will discuss it with me then. For now I'm not going to change much of anything until I know things for sure. The unnerving thing is at my last appointment my blood glucose was 215 so they wanted me to start watching my diet.. low carb etc. So I went out and got wheat bread and wheat snacks etc... just in time to poison myself.

This would explain a lot though. My tests are constantly low and we've discussed the possibility that I'm not absorbing my medication like I should. So this would make sense.

Anyhow thanks for the hugs, right back at you and may we all plateau together!
 

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Yikes Brenda!

Mind you, it would be very interesting if the proposed new 'diet' will help your medications be more effective... Mmmm...maybe a dip in the plateau ahead, eh? I sure hope so

Let us know when you chat with your rheumy. Im glad you are seeing him regularly.

Take good care
Joan:rose:
 

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Hi Brenda,
A friend of mine was very sick until she was finally diagnosed as coeliac and started treatment. She is so much better I can't tell you.:)

I hope this becomes a turning point for you.........perhaps good news in disguise:hehe:
That nurse seems very dismissive I hhope the wheels are in motion for proper care and diet advice.

Everything crossed for you x
 
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