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Old 02-03-2006, 04:29 AM   #1
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Aps

Hi everyone,
I want to tell everyone my little story about firing my rheumatologist. My original one moved out of the country and one of his partners took over. That was the worst day of my life. He was rude, confusing, abrupt, and uninformed. For some reason, my ANA came back negative (it does that at a certain lab). So, he confused me and I thought that he said that I didn't have Lupus. The more I asked questions, the nastier he got! I had three bad appointments with him and that was enough. He was such a monster! My ins doesn't cover any other doc, so I was prepared to pay cash. He had started me on Imuran and I started bleeding vaginally, hemorragic bladder, nosebleeds, etc. So, I stopped it. Well, I am still bleeding. I was then told about another rheumy who works out of the same building but doesn't take my ins yet. I went to see him and he was GREAT! He answered all those questions plus some. He said he doesn't care about the ANA and that the anti-nDNA was very positive - specific to Lupus. He agreed that I have Cushings from the prednisone (2 years of it) and that they should be used as needed from now on. I am weaning off of them.
But the most interesting things he told me blew my mind. He said that I have RUPUS. A diagnosis of Lupus and Rheumatoid Arthritis. That is why I will have funky blood results sometimes uncommon to just Lupus patients. It is not a dual diagnosis, but something a little different.
The other thing was something that VEEJ caught. I developed that Livido Reticularis awhile back and VEEJ had commented that APS patients usually get that. Well, this doc asked why I wasn't on Aspirin therapy!!! Yep, I have the Hughes syndrome. He was very disappointed that no one told me about it. He gave me my lab copies and there it was! That would explain the symptoms that I have been having. I have positive D-Dimers and am often tested for pulmonary embolisms. I have memory loss, vision loss, and confusion that resolves. I cannot believe that the other doc neglected to tell me something so important and easily treated. Thank goodness that I didn't fly or drive long distances because of the blood clot risk.
I just want everyone to know that they are in charge of their body and they can hire/fire whomever they want. There are so many more shocking details regarding my meds, including mistakes, that I won't bore you with. Just be in charge of your body and don't let people push you around. Make sure that you are being monitored appropriately. My other doc never did a 24 hour urine and knew that I had Lupus Nephritis several times.
I am so glad that I have my friends on this site that get my wheels turning. VEEJ got me thinking and I pursued it and got a second opinion.
Thanks to all of you and I hope that I can help you out someday!
Leslie

Last edited by LMHART; 02-03-2006 at 04:29 AM.

 
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Old 02-03-2006, 06:49 AM   #2
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Re: Aps

Dear Leslie, I'm really glad you switched rheumies & tacks, plus that your new rheumie looked into APS and now knows to watch & treat you if need be.

I wonder if you are the only one here who fulfills both the ACR criteria for lupus & RA, i.e., to have "rhupus"? Aren't the ACR criteria for RA roughly as confusing and difficult to fathom as the ones for lupus? (Yikes!)

Anyway, I suspect it takes a really sound rheumie to see both, not to try to pigeonhole you into either/or, and make that unusual "call".

Did your bleeding stop yet? HOPE SO! Looking forward to your next update. Bye for now. Always, Vee

 
Old 02-03-2006, 06:52 AM   #3
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Re: Aps

Leslie, P.S. I hope AngelicBrat sees your post, as she did a lot a few years back to throw a spotlight onto APS. Does anyone know how she is doing? V.

 
Old 02-03-2006, 10:28 AM   #4
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Re: Aps

Leslie-
I too have Rhupus- and am having a hard time. I went to the Mayo Clinic, and the doctor there was basically the same as your disaster story. (See my posting under "need support"). I had a question- can you elaborate more on the lab's being messed up and not specific for lupus? I was kind of confused. Thanks-
pambyboo

 
Old 02-03-2006, 05:45 PM   #5
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Re: Aps

Hello!
VeeJ - thanks again. No, my bleeding has not totally stopped. It has slowed down a lot, though. My platelets are actually too high, figure that. I have not been on this site for so long because of all this craziness with the doc's and trying to keep my job. I have been so sick and trying to make it through gracefully! So, I have not heard too much of Angelicbrat. Thank goodness she has the sticky posts for everyone out there to read. I have never heard of rhupus. I am going to research it more. How do you stay so informed?
Pambyboo - the lab results over the past couple years are all over the map. One time I am positive for something and then it comes back totally normal. Like my ANA....it came back normal last time but my CCPIGG for RA came back very positive. The not so nice doc said that it didn't make sense. He said that the very positive RA test should influence a very high ANA result. He said that he wasn't impressed with my ANA. (I had high positives sometimes, though in the past.) So, I thought that I didn't have Lupus. He snapped at me and said not to put words in his mouth! He just said that my case was too confusing and gave him a headache. I would have full blown pericarditis and pleurisy, proteinuria, etc., etc and my labs would be perfect. He never tested the anti-ndna, the new doc did. My sed rates were always high, though. The old doc said that I didn't fit the "typical" Lupus patient. When the Lupus would be in control, the RA would flare terribly, to where I could barely walk. I started back on the Enbrel and feel so much better RA wise. The new doc says that Rhupus patients are VERY complicated and are a great challenge. I think that most docs don't understand it and are intimidated by it. That's when they get defensive when asked questions that they cannot answer. I am so lucky that I found someone who loves a challenge. He said that Rhupus is a mystery still but can be treated basically the same as SLE & RA, we just have to be monitored closer. The kidneys, CNS and heart are our big issues. What does your doc say? What state are you in? I bet that so many of these people on this site actually have Rhupus and just don't know it yet. Can't wait to hear back from you!
Leslie

 
Old 02-04-2006, 12:35 PM   #6
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Re: Aps

Holy Moly ! I never heard of rupus - I have SLE and RA - my rheumie calls it lupus arthritis - could this be rupus I also have APS.

It never ceases to amaze me - and scare me - that dr.'s are not up on this. It stresses the need to learn as much as you can and to make sure your dr. listens to what you have to say about how you are feeling. I think that many, many people with these diseases do not fit into the exact mold of what the criteria say - there is a big gray area and dr.'s need to pay more attention to that.

I am thankful for all that I learn on these posts. Take care everyone.

 
Old 02-04-2006, 07:38 PM   #7
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Re: Aps

Hi,
I agree! It's so complicated with just Lupus. I am not sure if having Ra and SLE automatically label the Rhupus, I had never heard of it before either. I just know that my new rheumy says that people get labeled with Lupus and all those hot, painful joints are swept under the rug as the old "lupus flare". Their doc is actually missing the other diagnosis because they are so stcuk on the SLE. I do know that a specific combination of drugs is specific to Rhupus. I have been on Plaquenil for a long time and he is planning on taking me off next month. He says that Plaquenil is great for most patients but for "Rhupus" it is considered too mild. There are a variety of drugs that treat both diseases and hit them hard. My other rheumy was always so gloomy about my prognosis, this one is so excited and optismistic. He has a very positive attitude and says that he loves a challenge. He just sweeps through my labs and says that it all makes sense when you look at the big picture. He said that Rhupus is the hot topic among rheumatologists -ones that keep current, that is!
The key with our disease is to monitor, monitor, monitor. We must have the 24 hour urine tests done on schedule, drink 2-3 liters of water PER DAY, and balance our meds. He believes in taking the least amount of meds with the most results. He said that he promises to not sacrifice one organ to save another. Makes sense to me! The other guy was going to start me on Remicaide IV infusions and this new one had a fit. He said that he would like to leave my liver alone and only use that as a last resort. The Enbrel is working so well for me. We know there is a chance of producing Lupus antibodies, but he said we would handle that immediately if that happened, which is rare. As far as the steroids, I am weaning off them and will only take them as needed or for the proteinuria, etc. He said that they are more effective to take for flares in moderate amounts, like for a week, then everyday like I have been doing.
I hope that you are on the right track and are stopping the progression of these diseases. Do all you can to get your life back!
This board is a great start to learn. My rheumy says that experienced patients know more than he ever will. How true!!!
Leslie

 
Old 02-05-2006, 04:45 AM   #8
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Re: Aps

Dear Cooking Mom & Leslie, re: "lupus arthritis"---

I asked my rheumie to explain the relationship between lupus and RA when I was first Dx'ed, as I hurt almost daily, have some swelling, and have first cousins on both sides with full-blown RA.

Basically he said that like the lupus "4 of 11" criteria, the RA "4 of 7" criteria are tricky. Some must exist for 6 weeks; some have to be observed by a physician; etc. BUT, having an elevated RF is only one criteria and doesn't necessarily mean you have RA. Apparently RF can elevate in lupus patients *without* the other required criteria.

So I have arthritis that he calls simply "lupus arthritis". BUT it's not RA, meaning not erosive, no subcutaneous nodules, swelling doesn't last 6 weeks, no "mouse bites" on X-rays, etc... So there really IS something some rheumies refer to as "lupus arthritis", but it's doesn't fulfill the criteria for RA in *most* lupus patients.

For what that's worth... Leslie, I hope you'll correct anything I just wrote that's wrong or misleading. And CookingMom, I hope you are getting all the help required. All my best, Vee

 
Old 02-05-2006, 09:35 PM   #9
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Re: Aps

Hi Veej,
No corrections, that sounds right. My doc just says that other docs are overlooking that a patient may have RA also. Which is sad because the majority of damage is done within the first year. I can tell a huge difference between my Lupus flare and the RA flare. The pain is totally different. The CCP blood test is 99.9% definitive for RA. The RF helps, but it can also be positive with just Lupus alone. It can be negative with RA alone. And, ANA's can be positive with just RA. That's why we all need a REALLY good rheumy who is trained well and keeping up with the latest info on all of this. From what I understood, Rhupus is a diagnosis of RA and SLE "plus some". I still think that name is so funny! When I learn more about this, I will post something. I do hope that everyone out there has been tested appropriately. I can't wait for the day that I can sit back and put my trust 100% in the doc's hands. I always have one eye open, thank goodness that I did with the last one!
Thanks for the info!
Leslie

Last edited by LMHART; 02-05-2006 at 09:36 PM.

 
Old 02-06-2006, 06:00 AM   #10
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Re: Aps

Hi Leslie,

Cheering for you for being your own advocate here. I tested pos. for both diseases two years ago as well. I was told at the time that it is very rare to have both RA and Lupus in combination but that it does happen. My Rheumie currently is wondering about the Lupus dx. as the last 4 sets of blood work have come back very normal. He is now telling me that I have a very mild form of the disease that it only seems to flare when there is other stress on my body, ( except of course when I go to sunny areas and the develope sores). He thinks this last long flare was because my thyroid was undertreated for more than 5 years. Because my systems were struggling so hard from a lowered thyroxine level it kicked up a flare and set my immune system into overdrive. He feels if my family Dr. and my endo can keep my thyroid level for a couple years my lupus symptoms, except for my skin, will subside because I have always gone into a spontaneous remission after pregnancies and illness that caused flares have cleared up. I suppose it all sounds logical. Time will tell.

For now, I would have to remind you that long ago we all talked about always getting copies of any tests done for your own records. I always do and it is much easier to form pertinant questions when you have the time to read it at home.

Take care. Hugs and luv to you
May God Bless and Keep Us All
Patience 50

 
Old 02-06-2006, 09:19 AM   #11
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Re: Aps

Same to you Patience! I hope that you don't have SLE. That would be a miracle in itself. I pray that you work through this with wonderful results. I agree about those lab results. It is so important. I was getting a copy of each one until my doc left the country. Then the new guy acted like I was asking for his firstborn!!! I eventually did get copies of everything. Thanks for your guidance like always!
Hugs and prayers to YOU!
Leslie

 
Old 02-06-2006, 01:18 PM   #12
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Re: Aps

Hi Leslie,

I think I have somehow mislead you.
I do not have SLE. I have been dxed with scarring discoid lupus with associated mixed connective tissue disease. Most of what is effected on me is my skin and the connective tissue in my joints. I have only ever had 1 bout of pericariditis years ago and only 3 bouts of pluerisy in all my life. The Dr feels that I had flares during all three pregnancies and later after a surgery. I do also have intestinal problems, ( diverticulosous ) that can be tricky to control.

This is why I say I have a very mild form of the disease. My skin looks horrible and my joints hurt a lot. I do physical therapy exercises every day to maintain what I have left and hope there is no more damage but my major organs do not seem to have suffered major problems. I have some minor interstitial tissue damage in my lungs and kidneys but I can function around that.

At the time when my Lupus tests were coming back pos. I also tested pos. for RA and Hashimoto's thyroiditis ( also an autoimmune disease ). So you see, several things can go on at once in one body. Hope this clears things up a bit. I don't ever want to mislead anyone into thinking I have SLE when I have not been dxed with that form of Lupus.

May God Bless and Keep Us All
Patience 50

 
Old 02-06-2006, 07:41 PM   #13
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Re: Aps

Hi there,
I understand. Boy, these diagnoses get more and more complicated!
I hope that everything works out well for you, Patience. I should have remembered your diagnosis from reading all your posts. But, it's been awile. Hope you're staying in where it's warm...it's 28 here in Michigan.
Take care!
Leslie

 
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