HealingWell
Search Close Search
☰

New here and looking for support

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/5/2007 11:41 PM (GMT 0)
Hello all. I am new here, so I guess I will begin by filling you in on my situation.

Two and a half years ago I began getting unexplainable rashes on my arms and face. Went to several Dr's, no answers. Had a baby, it about killed me, so tired all the time, no appetite, early labor, the whole deal. A few months after baby was born, I went to a dermatologist, he biopsied my arm rash and a week later told me I have Lupus. SInce then I have also been told I have Fibromyalgia.

My "trusty" doc, put me on pain meds, started at 30 percocets a month. This was his only solution to my pain and illness, I did go to a rheumatologist for a while, she got me on methylprednisolone, 4mg a day. I tried Plaquenil, but it makes me so tired and upsets my tummy, so I dont like to take it.

Well, now here I am a year and a half later. Trusy Doc. kept upping those pain meds till he had me on 10 percs a day and 5 roxycotins a day. Long story short, I got hooked on them, doc would give me as many as I wanted. I woke up from my fog two weeks ago and went off all the pain meds. I also switched Dr's.

Now to why I am here. "trusy doc" never really treated my Lupus, I do have an appt. on Thursday for a full physical. I feel that in this stage of my life, I need to meet more folks with the problems I am having and hope to gain some advice on dealing with Lupus in my life. My means of dealing with it was to just forget about it and I know that is not the healthy way to live.  

My first questions would have to be about dealing with the fatigue. I am used to being super woman...go go go all day long. I can not do that now. Any advice on getting some of my pep back?

Thanks in advance.

Susie

Posted 11/6/2007 2:02 AM (GMT 0)
Hi Susie, I'm sorry you are going thru this but it's wonderful you were able to see that the route you were on wasn't get you the help you need. Even though alot of us including myself are on pain meds there is much more to it than that. You're right pain meds alone aren't the answer. Bless your heart! Sadly there are some bad doctors out there. Most of us go thru many to find a good one. It's really sad actually. As for fatigue it's funny you should mention that. I hadn't planned on being on tonight because it's been a rough few days and will be rougher tomorrow. But I was so wiped out I layed down and I couldn't stay asleep. So I got up and saw your post. I want to welcome you to the group and assure you that fatigue is shared by most if not all of us. I am 50 and I live alone and i still can't keep up on my house laundry and dishes. Steroids seem to be the only thing that helps get me over the bad spots but I hate taking them. I nap when I can and lounge alot. I can't work so there are times when I can relax. There are people here raising families and working. I swear I don't know how they do it. I know you said you have a problem with Plaquanil but I was wondering if you are taking generic or not. Some people on here do better on name brand. I havn't heard of anyone complaining of fatigue being caused by it though but of course I don't know everyone here. (just most every one) lol. Anyway others will be along soon. Don't give up on us. Sorry I didn't see your post earlier.
You truly will gets lots of cyber hug and support here.

Again welcome to the family!

carol
Posted 11/6/2007 2:16 AM (GMT 0)
Generally, lupus, even if initially identified by a dermotologist, is treated by a Rheumotologist -- they are the Lupus Experts. I would suggest getting a referral from the dr doing your physical Thursday to a rheumotologist. Then take all the test results from the physical and a list of every symptom you experiance (no matter what you think it is from) to the rheumy. The rheumy is the best doctor to address the fatigue you are having...there are many different ways to address it, depending on what the overall situation looks like to the dr. It may be that your lupus needs to be treated directly (something like plaquenil), that you have inflammation that needs to be treated (maybe prednisone), or even that the lupus is causing you to get less-than-optimal value from your sleep (requires a sleep-aid for lots of us). Check out the links in my signature and the thread "Lupus Resources" at the top of the page to get more information on what to look for and what to take to the Rheumotologist. Let us know how it goes,
Posted 11/6/2007 2:22 AM (GMT 0)
Thanks Carol,

I have been on the generic Plaquenil, my rhumy wanted me to go to the name brand, but I can't afford it. I can tell a BIG difference in energy levels when I am off of it compared to on it, not to mention the tummy pain! I am allergic to several meds, and often wonder if maybe I am not a little allergic to the Plaquenil, since I was in such a fog this year, I canned my rhumy b/c she INSISTED I come off the narcotics and that was not the answer I wanted from her.

I hope my new DR. can shed some light on things for me. As I said, I have only been diagnosed for a little over a year, and I spent the whole time worring about my pain med dr. and ignoring the rest, I have no issues with folks that do use the pain meds, I myself was not strong enough to continue using them without a dependency, and I was fortunate enough to see that happening to me and make a decision to try to go this without the narcotics. I do by the way have a past littered with drug "experimentation" so I should have known better. Sometimes I think my diagnosis is a payback for all my wild ways of the past.

I actually don't feel that much pain right now, I am 14 days off pain meds, a long hard home detox from those has also wiped out my energy. My methylpred. does help with the fatigue a bit. I am only taking 4mg a day, a small dose compared to some folks. I feel silly whining about the fatigue, kinda preaching to the choir here.....but it drives me insane!! Somehow, my brain keeps telling me that my 31 y/o body should have the same amount of energy as my 2 and 8 year olds, deep down I know thats not right, but I feel like I should.

Anyways, thanks for the welcome and I look forward to getting to know you all.
Posted 11/6/2007 2:53 AM (GMT 0)
Hey preach it girlfriend! We all have to somtimes. I'm very very good at it. LOL. Ya know I question myself somtimes thinking boy it's all my fault I got sick. I have abused my body and it's coming back to get me. I agree with Lynnwood you need to ask doctor for a new rheumy. You mentioned not being able to afford brand names. I think there may be some people here who have gotten assitance in that department if you don't have insurance. I have insurance and it still eats my lunch!

I wouldn't be a bit surprised if the detox has taken alot out of you. On top of the 2 little ones. Geesh I'd be tired too. You're right fatigue is horrid, sometimes I'm so tired I feel like I can't move one muscle literally even if you put a match under my butt!

anyway again hello and hang in there. I think this is a good place to start getting some support and moving in the right direction.
You're gonna love it here
carol
Posted 11/6/2007 3:09 AM (GMT 0)
Hi Susie,
Welcome to the forum. I'm sorry your going through so much right now. I think the fatigue is the worst part these chronic diseases. We have a constant battlefield going on with the mind and body. The mind wants to do so much, but the body says no!

This is a wonderful group here that will help you in anyway possible. Ask all the questions you want and share anything with us. Please take care and you will be in my thoughts and prayers.

Babs
Posted 11/6/2007 3:07 PM (GMT 0)
HI Susie, I also wanted to welcome you. I don't have a lot to add to the great info the others have already given you. I really hope this new doc is a good one and can help you get your disease better under control. You are right that 4mg of your prednisolone is low and doesn't seem high enough to really help right now - it seems like more of a maintenance dose. Maybe your new doc will increase it a bit. My prednisone is really the only things that has helped with my energy level. I'm glad you found this forum - it's a great place for information and for support. It's really nice to be among other people who truly understand what it is like to live with this disease everyday. I have 2 young kids and know how hard it is to try to be the kind of mom you want to be when you have lupus.
Posted 11/6/2007 5:30 PM (GMT 0)
Susie,

I'm glad you're here Susie. Lupus is a hard disease to deal with and when you're still looking for the right rheumy and the right combination of meds, it's even harder. And then add two little children to that equation and it can really get you down.

I'm amazed that you were able to detox alone at home and applaud you for that. It took a lot of guts.

I do hope you can find a new rheumatologist who will listen to you, talk openly with you, and help you get your lupus under control.

As far as your problems with plaquenil, many of us had stomach problems for a while as our bodies adjusted to it. In my case, my stomach bothered me for about three months but it was worth the hastle. If you can get off that much percocet by yourself, you might want to try the plaquenil again. It really works. It's worth discussing with a rheumy.

I hope you enjoy the forum.

Pat
Posted 11/8/2007 4:54 AM (GMT 0)
Hi Susie, and welcome. You took a huge step in taking back control of your life! I hope you can find a good rheumy who will listen to you and work with you to find a regiment of meds that will work for you to keep your lupus symptoms under control (with the 2 small ones, I know you need it!). You've found a great place of support and helpful information! Good luck, take care, and please keep us updated!
Posted 11/14/2007 3:18 AM (GMT 0)
Hi Susie. The first time a medical professional ever said the words "lupus" to me, was after months of seeing 2 regular doctors for the pain I was in. The other two kept just writing me scripts for hydrocodone. I lived in a haze when I was not working, until I finally saw this young female nurse practioner. I told her in no uncertain terms that I was in pain, wanted my life back, and did not want anymore Opiates. She was very compassionate, and put me on a Cox2 inhibitor, until I could see a rheumy.(years ago) It takes alot of courage to decide not to take them anymore, especially if they are not really helping you anyway. I do take them on a case by case episode, but not all the time. I don't have any children yet at 30 not for lack of trying, but my godson wears me out in one night. I can't imagine life as a mother with young children dealing with this.
Posted 11/14/2007 11:22 PM (GMT 0)
Wow!! Thanks so much to you all! I am sorry that I have been away for a few days. I lost my internet connection until I could pay my bills. I am sure some of you can relate to that one.
I can already tell that I have found a great plae to hang out and meet some folks that are living with what I am and that have alot more experience than I do. Here is my update since my last visit:

Went to new Doc. who told me I did almost the impossible going through a cold turkey detox at home. He was quite worried about what I may have done to myself in the process. Did a full physical with a general health panel and cholesterol screening. Everything came back normal with the exception of a 242 cholesterol score. Started taking a new med for that.

Got ahold of my old rhuemy, who agreed to take me back as a patient since I kicked the pain meds. Relief there, she is a great doc, who has a rep for being the BEST Lupus doc in my area. I feel good about getting into her office, my appt with her is on the 29th.

Until then, I am hanging out and taking it daily. I do think the steroids may need to be upped, I have been on this 4 mg. dose for 2 years with no changes. I plan to talk to her about the plaquenil and any other meds that may help with the inflamation. My knees are soooooo bad. They feel like rocks rubbing together when they bend, and even worse you can actually hear the bones grinding if I walk up hill or up stairs. I really wouldn't mind a new set for Christmas if anyone has some connections...

Ok all joking aside, that is where I am right now. The 2 yr old is going to start Mommy's Day out tomorrow, I think getting a little break twice a week may help me out! Thanks again and I promise not to disappear again for a while.
Posted 11/15/2007 12:41 AM (GMT 0)
Susie, it's good to see you back and I'm glad you got your internet back. That's good news about getting back in to see your old rheumy so you don't have to start all over with someone else. Hopefully she'll be able to adjust your meds on your visit so that you start feeling better. Good for you for taking some time to yourself - we all really need to make sure we are taking care of ourselves. It's just extra tricky when you are a parent of young children. Take care and thanks for giving us an update.
Posted 11/15/2007 2:53 AM (GMT 0)
Greetings Susie! Welcome and (((((HUGS)))))!

I, too, have lupus (and RA) and find the prednisone helpful. You are right, the 4 mg is too low of a dose. Do your best to get the name brand plaquenil and aks the rhuemy if you should have a higher dose of the prednisone until the plaquenil kicks in. My rhuemy did this for me and it helped ease the way for me. The plaquenil takes 6-12 months to fully filter into your system.

I also take an anti-inflammatory. If, in 6-12 months you are still dealing with inflammation and swelling, your rhuemy will probably try some other "bigger gun" drugs. When I added methotrexate injections to my meds I could see a huge increase in my energy levels. Unfortunately, it took over two years to kind of get over the fatigue. I say that loosely, too. I have to be careful not to overdo things and get plenty of restful sleep to make sure the fatigue does not creep back.

At this point we all have just had to accept the fact that we are fatigued and we need to take it easy and pace ourselves. If you are not up to cleaning the house then save it for another day. I try to just keep up with dishes, laundry, and taking out trash. If I can do that then these things don't pile up into an insurmountable amount of work. If you are exhausted and can't keep up you will find ways to manage and do the best you can until you do have a good day.

People might be insensitive because they can't "see" your lupus but you need to ignore their stupidity. It is very important to take care of yourself! Have as much fun as possible with your children and with your family and you will have an amazingly full life.

I wish you the best and I am so happy you found us here at HW!
Posted 11/15/2007 3:12 AM (GMT 0)
Audrey Ann said... I also take an anti-inflammatory. If, in 6-12 months you are still dealing with inflammation and swelling, your rhuemy will probably try some other "bigger gun" drugs. When I added methotrexate injections to my meds ... I'm not sure if Audrey meant she was being treated w/ MTX as an anti-inflammatory or not; but there are a multitude of anti-inflammatory's available that are less intrusive than MTX. Even OTC ibuprofen can help (but keep your stomach protected). My rheumy prescribed a mild anti-infalm at our first visit, before dx, in 2000 and I have taken it daily ever since. (Feldene, aka Prixicam). Take care,
Posted 11/15/2007 4:57 PM (GMT 0)
Lynnwood, it is funny that you mention the Feldene, my mother takes it for her arthritis and it helps her so much. I think I will ask Rheumy about it since it helps my mom so much. I have tried some other things, but I think my desire for them to make me feel better fast was hindering my judgement on wheter or not they were working. I have finally realized that there is not a quick fix to this disease and I just have to take it day by day and keep on going.
I am just so beside myself right now. With the paim med issues, finances, etc. I lost a 35K a year job over this, currently waiting for disability to maybe come through, waiting for a hearing right now, but they say i will be Feb 2009 before I get a hearing, and even that is not a promise that I will get approved, I am trying to support myelf, hubby and two small kids on $1600 a month, I cant take much more of being so broke, any advice on that one? Is there a way to speed up disability?
Posted 11/15/2007 5:33 PM (GMT 0)
hi susie,
Welcome to the forum, you've found a great place where others know exactly what you're going through. It's a great place to vent and ask advice, and it does become addicting!

The Plaquenil has always bothered my stomach. There are days even if I eat a big meal that it will bother my stomach. The one thing that has helped me tremendously is taking generic Pepcid when I take my Plaquenil. I can even take the Plaquenil without eating any food when I take the Pepcid (though I try not to do that too often). My rheumy has approved me taking the Pepcid with my Plaquenil and I've also checked with my pharmacist and he also says it's okay to take with the Plaquenil.

The fatigue is horrible and it does get very frustrating not having the energy I need to keep my house as clean as I would like, keep up with my laundry and cook, besides wanting to do the fun things. I've learned that I have to pace myself. If today I have to do errands or do a doctors appointment, shopping etc, I won't cook. I'll either pick up a no brainer meal or it's a day we'll hit the restaurants. With having children you're going to have that added extra job you're going to have to save energy for. I honestly don't know if we ever get use to the fatigue. It can be very discouraging at times.

Best thing you can do for yourself is read the Spoon Theory that one of the others recommended and remind yourself that you are not Wonder Woman and you have to pace yourself.

I've also learned to make my appointments (hair, dr, dentist, etc) later in the day so I can still sleep a little longer if I want to. Though that probably isn't an option for you with little ones.

Hugs!
Posted 11/15/2007 6:33 PM (GMT 0)
Susie,

I am also new to this site and the people here are wonderful and caring. I have found so much hope as they share their experience and strength. I was sick and to date have not been diagnosed but my biggest problem was extreme fatique. So many outsiders would say get up, push yourself. It is like trying to walk carrying a 500lb elephant. A trip to the bathroom had to be a thought out plan. I feel your pain. I am so grateful that after alot of rest and time my energy is coming back and hope it for you. I do not know your situation but humbling my self and asking for help from friends and family was very beneficial. Maybe your family and friends can all chip in and give 20 minutes of their time so you can rest. I am in no means giving advice, just sharing how I got through one of the most difficult times of my life. My family and friends said I just have to learn how to ask for help.

Good Luck and know you will never have to do this alone.

dazed

P.S. I traded my Wonder Woman cape for a blankie and a good book.
Posted 11/15/2007 6:34 PM (GMT 0)
Thanks for the kind words again, I will go check out that Spoon Theory. I did lots of reading when I got diagnosed. I am even trained by the Lupus Foundation as a support group facilitator. I just lost myself for a while and didn't feel like I should be running a support group when I couldn't support myself. I really need to get back into that I think it would help me and others in my town a great deal.

Another question......I notice that lots of you have mentioned that you have or have had cervical cancer. Is this something that is related to Lupus or is it just coincedence? I have already had an abnormal Pap a few years ago, long before my dx., I had a LEAP done and everything was normal after that, but if it is a concern I would like to know.
Posted 11/16/2007 3:15 AM (GMT 0)
Susie and Lynnwood,

I guess in my rambling I made some confusing statements that make sense to me only because I know the whole situation. My post was getting so long that I tried to shorten my explanation. I don't really know if the MTX is an anti-inflammatory (I thought it was a DMARD like the plaquenil?) but I was on plaquenil, prednisone, and Relafen (which is my current anti-inflammatory) and could not go off the prednisone without my inflammation going up and my joint pain increasing. My rhuemy, in her desire to get me off the prednisone, put me on MTX. After about six weeks of the MTX I was able to go off the prednisone. I still take plaquenil, Relafen, MTX and folic acid. I just stopped a recent flare, however, with an additional 4 months of prednisone. I have noticed that I have a terrible time losing my weight that I gained from the first stint with the prednisone. I crave anything sweet while on prednisone and, also, while not on prednisone. It's like I have turned into one, big sweet tooth!

Also, Susie, I am not sure about a link between lupus and cervical cancer. I did read about a link between lupus and mono caused by the Epstien-Barre virus (EBV). I have also noticed that a lot of lupus sufferers seem to have endometriosis and/or fibroids. I am not aware of any scientific studies about any of these maladies and lupus, however. I will be interested to see what others share about this.
Posted 11/30/2007 12:04 AM (GMT 0)
OK guys, I went to the rheumatologist today. Man you should have seen the small book she was holding in her hand when she pulled a pharmacy report on me! It was huge! Her first question to me was..."OK, so what all have you been on for this past year?"....

Yeah, so anyway, I was honest with her, told her what I had been doing and how I came off the pills, she was blown away at the fact that I did a cold turkey home detox....curious even, as she said she had never had a patient go thru home WD's from my levels of use. " I would have tapered you if I'd have known..", yeah, nice to know now, but the thought of still trying to taper right now compared to just having it all out of me is scary. I do not think I would have made it with a taper, I am much too sneaky for my own good sometimes.

I let her know that although I do HURT,and I stay SORE, that my real problem deep down is the energy levels. That is what made me fall in love with my pills, they made me feel like I could get up and go....I had energy for the first time in two years with them, and that is why I didnt want to give up on them. To my surprise, she actually understood that thought process, and I realized that maybe she wasn't as bad as I thought she was when she lectured me so many times on dropping the narcotics.

So here is where we stand now, she has ordered some sleep tests, checking for sleep apnea, b/c this too could be a reason for this chronic fatigue I have. From there I will have two options, if I do have SA, then that will get treated however it is that they treat it, I'm not sure. BUT...if not then she is offering to give me Provigil. A drug given to narcoleptic people to help them stay awake, she says it would be a fast acting dose that would get me going in the morning and then wear off by bed time. I;m going to look into this abit, but any info on it would be appreciated.

I talked with her about my night panics where I wake up by jumping out of the bed, scared to death of nothing at all. I had a script for xanex that I rarely took,because it knocks me out with a quickness, dead to the world... but she thinks that Klonopin will be better for me, not as strong, shorter acting, etc.

That's about the extent of it, we did a CBC, and lots of autoimmune specific blood tests, so I will let you know how those come out soon. I feel good about this visit today, I was worried that she would just label me as a junkie and not want to help me with the fatigue, she is still not offering me much in the way of managing my pain, not her cup of tea I suppose, she swears that the Plaquenil will help. She wrote my script for the name brand and said I am intollerant to the generic so hopefully my insurance will cover it. I think that perhaps I should find myself a good orthopedic doc that can help me out with the knees, hips and back.
✚ New Topic ✚ Reply