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Old 09-26-2006, 08:24 PM   #1
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Coping with Osteo & Lupus (SLE)

Thought I would see if anyone would have any suggestions or thoughts in this forum.

Hi everyone,

It's been awhile since I've posted. I truly just don't know what to feel anymore.... Right now I feel just numb. I will try & keep this short and would like any info or thoughts from all of you.

I'm 45 yrs old, very happily married w/2 great kids!
Hx of osteo & connective tissue disease for 13 yrs.
Havn't nelt down in 8 yrs on my knees.
Recently diagnosed in late May with Rheumatoid arthritis, Lupus(SLE), and diabetes. Yes, I have a very good Rheumy & ortho Dr's.

In April I hyper-extended my knee, would not heal (small dip in grass).
off work for 3 1/2 mo. During that time I had a scope, many aspirations, and 5 hyalgan treatments too...nothing worked & my knee only stayed the same & sometimes got worse. The scope brought bad news which is why it wouldn't heal. It has now been 5 mo since I injured it. The cartlidge is all shredded, virtually all is gone. I went back to work & within 5 wks the aspiration was all bloody fluid. Told it's completely bone on bone, but I was too young for a knee replacement. Was told to change proffessions & I would not be walking within 5 yrs cause my knees are so bad. He said not to worry we will get you fixed up....assuming he would go ahead with the replacement. Since June I've been on narcotic pain meds every 4 hours just to be able to walk. I struggle walking all day with pain & wearing the brace. I don't go anywhere or do anything, I come home & plop. My scope was end of June & he was hesitant with doing it...now I know why. He was just putting me through the motions.

They have been putting me off & never intended on giving me a knee replacement. Because I have Lupus he will not do a knee replacement of any kind. But he won't say that in those exact words. I'm being sent for aquatics for 6 wks, return to Rheumy for aggressive treatment for the Lupus & told to get off the narcotics. I explained they are whats keeping me walking & working & without them I can't walk across a room. Funny how the Dr can't be up front with me. I found out today from two other physicians that no surgeon will perform surgery on a Lupus patient. What treatments are available cause they don't have me on one? So, now I just wait....and worry.

Thanks a bunch for taking the time to listlen to my babbling.
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Old 09-26-2006, 09:45 PM   #2
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Re: Coping with Osteo & Lupus (SLE)

Hi Roses,

I hope that you can find a very good dr. to replace your knee. I think you just need to keep looking and asking others in your area, for a good surgeon that will do the surgery. Probably it is a risky thing for the drs. to do, but I am sure it can be done...

It sounds like you are in a lot of pain. And if you have a walking job, you do need to change jobs!!!

You will just probably have to give up some of your arthritis meds before, during and a little while after the surgery.

Keep looking and good luck.

Wannabe

 
Old 09-27-2006, 07:50 PM   #3
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Re: Coping with Osteo & Lupus (SLE)

roses4evver,

I'm sorry you are going through such a rough time. Just today I had an appt with an orthopedic doc because of severe back pain & he said "you have arthritis & it's quite severe". I came home and cried. Geez, I thought Lupus, uncontrolled glaucoma, numerous ongoing skin cancers, reflux, gastritis , hearth arrythmias, diverticulosis & major menopause symptoms was enough -- I guess not. Today I just felt very old and useless. I guess you would call it depressed....

Did your rheumy say it was unsafe for you to have knee replacement surgery? Please talk to him & get his opinion since he should be the one to decide if Lupus should be interfering with your osteo care. I would ask the docs point blank why they are putting you off. Get another opinion, and a 3rd if neccessary. Considering your level of disability I can't imagine that there isn't a surgeon who would give you a chance at a knee replacment.
Is your Lupus that out of control? Maybe you need a new rheumy ???
Perhaps go to a major medical center that has a Lupus center-- get their opinion on whether or not it is safe for the knee replacement.
Don't give up-- just take a deep breath & keep going.

I wish you much luck & much pain relief !!!!

 
Old 09-27-2006, 08:27 PM   #4
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Re: Coping with Osteo & Lupus (SLE)

Thank You for your thoughts,

I work in a Lg major hospital w/ a degree. I have access to the BEST Dr's available. I just had my 3rd opinion...they all agree. The surgery is too risky with the medical complications/conditions to have any kind of knee replacement. Could I find a Dr in my city to do it? Sure, but they would not be a respected Dr. for their expertise & they would cut on anyone for the old mighty $$$$. That is the last thing I want is to leave my family & this Earth before age 46. When you read everything about Lupus it is easy to understand their stance. Although I am very upset to think what my life would be like in a wheel chair in 5 yrs.

Yes, I am in a lot of pain most of the time, especially working. I can't change jobs because of 3 yrs of on going medical problems. I had a disectomy/fusion of my C-spine(off work 3 mo, 2 yrs ago), Sinus surgery for chronic sinusitis (off work 4 wks, 1 yr ago), staph/MRSA infection of sinus 8 mo ago, now my knees (off work 3 mo) 5 mo ago (scope-off work 7 wks). I know my low back is next, already the facet is eaten out by arthritis. The list goes on & on....They simply say I'm not dependable even though none of it was my fault. Something has really happened to my system in the last 3 yrs. I will be seeing my Rheumy next week to get in depth treatment for the Lupus, although I don't know what that would be. She is also the BEST. I was on a 1 yr waiting list.

You have a lot going on too anxiousinnj...I'm very sorry & will say prayers for everyone!

I was dealt this hand of cards and I just have to find a way to have the best life I can for as long as I can. I am in the process of trying to transfer to another hospital which would help tremendously.

Thanks again everyone!
Take Care
Roses
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Old 09-28-2006, 02:37 AM   #5
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Re: Coping with Osteo & Lupus (SLE)

[ COLOR="Blue"][/COLOR] dear roeses i understand what u are going throughi have artrithis for yrs and in so much pain i do,t take pain medicine becauce i don,t wont to be addicted and need more i take inflamitorys for swelling but can eat at ur stomach if u don,t eat with it. my MRI the orto said was so bad he asked me i won,t to know how u are standing there ur x ray he had just taken say -u can,t stand there let alone walk ! i told him it is will power and the man up stairs maybe well he won,ts to do a complet replacement on both knees! and i was told by my medical dr. i screened possitive for lupus what u have told is that u can not operate whith lupus but why/ I don,t know enough about it but i know there are diffrent kinds! also iread if u are getting leg surgery u sould get any detal done way before because it could cause a infection in body later on . just think possitive i hoping all works out welll for you take care from laura P.S; THIS IS MY FIRST MESSAGE

 
Old 09-28-2006, 03:12 AM   #6
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Re: Coping with Osteo & Lupus (SLE)

The question in one of the first posts was "Does Rheumie agree it is unsafe?" The answer is YES. I seeked out 2 opinions from orthopedic surgeons on my own without telling her...both said no KR for a very long time. I feel all the Dr's (ortho's & Rheumie) just dragged me along for the ride because they have a very hard time telling a patient...your life might as well be over.

My appt yesterday with one of them FINALLY came out & told me so. Saying my case was very rare, being someone who desperately needs a TKR & also having Lupus. Telling me how hard it was telling me know & how unfortunate it is that we as patients are bounced back & forth between Dr's because no one wants to tell you...the road ends. He told me they have a very hard time talking to a patient about their mortality. Why I ask myself? what I come up with is they want nothing to do with a patient "GIVING UP on life".....

I would like to know what other Dr's have to say in other area's. So if you all get a chance...ask your Dr's...for a friend.

Have a good day!
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Old 09-28-2006, 09:27 AM   #7
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Re: Coping with Osteo & Lupus (SLE)

roses4evver,

I will definately ask my rheumy next visit if TKR is contraindicated with Lupus. I don't see him again until early December. I just saw him this past Monday & wish I had known to ask him then....

Please tell me what treatments you are presently on for your Lupus- medications. How have your labs been ? I would think the status of your Lupus makes a big difference. If it's just because you HAVE Lupus , I think to flatly refuse TKR seems wrong. Obviously one has to tread lightly with whatever they do, but if your Lupus is stable-- meaning negative ANA & dsDNA, blood counts, CRP, etc are stable- I would hope your rheumy would work with an orthopedic surgeon to come to an intelligent decision.

I went to a plastic surgeon a few years ago to ask about some cosmetic procedures-- he said "I don't know If I would accept you as a patient because you have Lupus". When I asked my rheumy about that he said he saw no reason why I could not go ahead with any procedures because my Lupus is mild & under good control. You just proceed with caution & be overly cautious about infection, healing, recoup time, etc..
It's the same thing with life insurance-- they see Lupus diagnosis & your'e uninsurable. For myseld, I have other medical problems that are effecting my health in a much more negative way than the Lupus-- but Lupus is the reason they turn me down. The world "out there" is not educated about Lupus-- they are still under the impression that it is a terminal disease.

End of my ranting...lol. I am on a mission now to find out if you can have TKR with Lupus ! My knees are in pretty bad shape also-- so I guess I better get on the bandwagon with you.
Please respond with the status & treatment you under now for your Lupus-- I think that is what should really determine what your options are.

Take care,

anxiousinnj

 
Old 09-28-2006, 11:33 AM   #8
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Re: Coping with Osteo & Lupus (SLE)

Hi,

I have lupus, osteoarthritis and degenerative disc disease. Sometimes I don't even know how I cope with it as there have been times when I had a flare plus pain from the other arthritis. But my lupus has been pretty much under control since i've been taking plaquenil for almost 2 yrs now. Actually I just had spine surgery a week ago...I was a bit worried if I would end up having a flare or have alot of fatigue after surgery. I did have fatigue but it was different. I could not believe how much better I felt after surgery! I think before surgery my horrible fatigue, leaden legs, spasms, some inflammation in knees and ankles were all due to the osteo and ddd and all the stress from trying to get by day by day with all the pain. Already my fatigue is gone, my legs feel lighter, my other joints feel better and so far I have not had a lupus flare up at all. I could not take ANY antiinflammatories starting 2 weeks before surgery; I took plaquenil until the day of surgery (for some reason the hospital did not give me plaquenil while I was admitted but i was only there 2 and 1/2 days When I was discharged my papers said I could take plaquenil again. But I was so worried beforehand about a flare up...and I think I am in the clear now. However, my lupus is nowhere as severe as many of you. Mine basically involves arthritis, rashes, hives, memory problems, extreme fatigue, the occasional bladder and kidney infection. A couple months before surgery i was taking vicoprofen for pain (and swelling) but had to stop taking it due to severe bruising, which had never happened to me before. So i wasnt sure if it just due to the med or if it had something to do with lupus. But i told the hospital everything I could think of and I came out okay after surgery, thanks gooodness.

So I guess it all depends on how lupus affects you, how well it's being controlled and what sort of other conditions you have due to to lupus (i guess bleeding problems especially might hinder things).

 
Old 09-28-2006, 09:35 PM   #9
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Re: Coping with Osteo & Lupus (SLE)

Hi again,

I read something today that rang a bell about this thread. I was reading up on spine problems since I was just diagnosed with severe spinal stenosis & don't know what lies ahead. There was an article on disc replacement surgery & under contraindications were , you guessed it "autoimmune conditions". So I wonder if this is what applies to knee replacements, hip replacments or any other replacement surgery. Maybe there is a high chance of our bodies rejecting the replacm,ent part. Just a guess- so we'll all have to do our homework on this one.

Baybreeze- so happy for you that your surgery has given you relief-- I pray it stays that way for you. I am going for another opinion for my back problem & it has me very down-- pain & just another "disease" on the list.
What exactly is the problem with your spine if you don;t mind me asking ?
I just want my pain to go away so I can try to be somewhat normal again...
Did you try an epidural? That's what they want me to do first, but I am afraid of the steroids because I have glaucoma. That's another reason I am so grateful that my Lupus is mild & I've only needed the plaquenil.

 
Old 09-29-2006, 06:26 AM   #10
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Re: Coping with Osteo & Lupus (SLE)

Anxious, I also had (ohhh i can't believe I can say "had" now) severe spinal stenosis. (central canal stenosis and lateral stenosis) It was in my lumbar spine and had progressed pretty quickly. So I had small part of a ligament taken out (as it was thickening and buckling into my spinal canal) and they scraped and chiseled away any bony build up around my spinal canal and any bone spurs near nerves.

I had tried most everything before surgery - anti-inflammatories, steroids (which helped alot but cant stay on them long), accuflex, painkillers (the only painkiller that helped a little bit was Vicoprofen, but I developed severe bruising & had to stop taking it), muscle relaxants, lidocaine patches, lidocaine injections, tens therapy, heat therapy (though heat helps alot with spasms), I went to physical therapy 3 times a week for almost 6 months (i only had 6 weeks thru insurance but my PT offered me a really low fee if I wanted to keep going there to just do my exercises every week so I couldnt say no to that) ...now I found that going to PT for so long helped me ALOT after surgery!! and i'm told I'll heal quicker as well. I had 3 epidural injections b/c I also had some herniated discs on top of the stenosis. The epi's did help my sciatica pain and the disc problems but, i think b/c of my lupus when the epidurals wore off (for me they wore off a month after the 3rd shot) I had a massive flare and every single joint in my body (every finger, every toe, every vertebrae) was sooo stiff and achy I thought I was hit by a freight train. They say that the injections stay in the epidural space and don't really affect the body systemically like oral steroids do but I think they did for me!
But anyway, the injections helped my disc/sciatica pain but not my stenosis pain (which is called neurogenic claudication). That pain is a deep burning, aching, cramping pain that runs down the back of the rear and backs of both thighs when trying to stand up straight...and its caused b/c the stenosis is squeezing the spinal canal and blood vessels in there when you stand straight or try to bend backwards. For 8 months i've been standing and walking bent over forward and even then, I could only stand or walk for less than a minute. If i stood too long severe muscle spasms and sometimes dystonia would take over my entire back, my neck, throat, face, shoulders, arms, hands , legs and feet. I'm only 37 and just couldnt stand living like this anymore. For me, my stenosis was worse than my lupus flares (at least I knew my lupus flares would always go away at some point , either on their own or with meds) The stenosis never went away and only got worse in a short time.

I also found a very good,pretty renowned spine surgeon in Philly (im in NJ too) and was very comfortable being in his hands. Everything went smoothly and the day after surgery the nurse had me get up and all my stenosis pain was gone!!! I almost fainted because I was standing up straight and tall again (with a walker, of course). So I am sooo happy that I had the surgery. HOwever, I did not have anything implanted or replaced ..i only had some of my own parts taken out so I have no idea if I would have had problems or rejection had I needed anything replaced.

 
Old 09-29-2006, 02:50 PM   #11
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Re: Coping with Osteo & Lupus (SLE)

why don't you see about getting on social security disability you sound like you would qaulify especially if your knee can't be replaced it is worth a try . Good luck.

 
Old 09-29-2006, 10:55 PM   #12
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Re: Coping with Osteo & Lupus (SLE)

Baybreeze,

Thanks for all the info-- it really helps to hear other people's stories. I'm so glad you have found relief.
The true stenosis pain--that cramping deep grabbing thing in the but & down back of thighs-- I only get that if I cough in the morning. That goes away as the day goes on. The other pain in in my right hip--I can't raise my right leg when I am sitting--it just grabs me. Then today I developed a new pain--totally weird-- it feels like a bruise on my spine up a little ways--probably the upper lumbar area. The ortho doc asked if I could bend backward & I did with no problem- I wonder if I squished the L3-L4 which he said on MRI & xray looked like it was next to slip ( L5 has already slipped onto S1). Now If I try to bend back I can't- that bruise pain is there. Ever heard of this type of pain ??

sorry to get off the thread topic. We have to get back to the knees !

anxiousinnj

PS I wish there was a way to get the Philly doc's name but they don't let us post names here right ?

 
Old 09-30-2006, 09:59 AM   #13
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Re: Coping with Osteo & Lupus (SLE)

You're allowed to share the name and the city they are in but not their address, phone number or if they have a web site.

Barbie

 
Old 10-07-2006, 09:48 PM   #14
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Re: Coping with Osteo & Lupus (SLE)

Anxiousinnj,

The only treatment that I have had for the Lupus is prednisone back in the end of May when I saw Rheumie for the first time. @ wks of that stuff was great but I know a person can't stay on that. See, I was on the Rheumies waiting list for 11 mo when I finally got their call to come in. It just happened too be at a time I was in a big black hole.

In April I was going through severe knee problems & the last year a lot of overall pain everywhere, including excruciating pain in my knees after sitting on short stool weeding for 25 min. Afterwards it felt like all the cartalige was ripped inside my knees. I thought at the time when it pulled that it was just a good stretch since I hadn't done it since the year before. WRONG.... The scope showed it all torn & shredded which my MRI 2 mo prior did not. So the damage happened just when I thought. With a hx of osteo & connective tissue disease for 15 yrs I didn't know what was trully happening to me. I was very scared for the first time about my health. So when the Rheumie called I was like Thank God! She did a lot of x-rays, lab work, aspirated my knee & gave me pain medication. She was a godsend to me since hyperextending my knee & the weeding incident that put me in orbit & out of work 3 1/2 months, not to mention on crutches & then a knee brace. Which to this day I am still in the same shape with pain meds every 4 hrs. Also diagnosed me post meopausal...severe hot flashes every 30 min...lol

The end of May my labs were:
ANA Pattern & ANA Titer ....Posative,homogeneous, 1:160

Neg: <=1:40
borderline: 1:80
posative: >=1:160

the ANTI-SM,RNP,ssA,ssB were negative

Rheumatoid Factor :52

I was in bad shape at the time of these tests & havn't had any done since. I will be seeing her next week to seek more treatment. She does have me on many other meds too.

Someone had mentioned in another post to me it seemed to them that I would qualify for disability. Well I probably would but I'm only 45 & I have a great carreer that I worked very hard for the last 13 yrs. To just give up & go on disability would mean I would loose my home and everything that I own. Dissability is not much bacon to bring home for the family yah know. I'm just not ready to roll over & be dead yet in spite the pain & limited mobility I'm in.

Anyway, take care of yourselves now
prayers & hugs
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Old 10-15-2006, 01:46 PM   #15
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Re: Coping with Osteo & Lupus (SLE)

Roses,
when do you go back to your rheumy ? You haven't seen her since May ?
My rheumy sees me every 2 months & my lupus is stable-- all labs are negative- he does labs about 3 times per year.
Make sure she checks you double strand DNA- that is the important one with lupus- that one is usally a big indicator of lupus flare & especially if kidneys are involved.

I think you should talk to your rheumy about the knee replacement- maybe she can be of help ??

 
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