I am getting so frustrated I went to see my new Rheumy and she said she doesnt think that its lupus, but still wants me on the plaqunille. So I have Mayo Clinic saying yes its lupus my PCP saying its lupus and then my new rheumy and kidney doc. saying no. GRR! My new rheumy also stated that mayo didnt run all the tests for lupus and other auto immune disease. Mayo diagnosed my off of my symptoms my increased ESR and CRP as well as an ANA tighter of 1:160. Apparently the double strainded DNA test came back negative and thats why they arent saying its lupus. But yet I have mayo and my PCP saying that doesnt matter. I am SO confused. My rheumy said there was another test they can run to see if its lupus (dont remember what it was called) so she will be running that. She is thinking some form of Myositis. As we we were looking at it to see what it was I saw that it can be along with lupus and that plaqunille actually makes the disease worse. So why am I on plaqiunlle? She is convinced that there is some form of auto immune/ connective tissue disease as my inflamtion have been rising with each decrease dose of prednisone. They are thinking it will be almost a year for me to get off of it. Thats there main goal right now is to get me off of the prednisone. I have been struggling so hard and ready to throw in the towel! I am sick and tired of being a gunnie pig. My pain has reached an all time level and nothing is really helping. I can barely walk and have to use my wheel chair or a walker to get around even in my small apartment. I just dont know what I can do anymore......
We did hear that cherries are great for inflamtion. My ESR was at 40 after drinking a jug of cherry juice it went down to 28. I was shocked! So I am happy to have found something to help the inflamation.
Hi - this line you wrote "She is convinced that there is some form of auto immune/ connective tissue disease as my inflamtion have been rising with each decrease dose of prednisone", that's all that matters. Steroids and plaquenil help suppress the immune response in the body (I take both and Methotrexate). I have a Lupus diagnosis and it's been super activated.
I guess my point is that whether it's labeled Lupus or just a "connective tissue disorder", plaquenil will help calm it down. It sounds like your Rheumotologist is trying to get to the bottom of things, which is great.
I hope you get some more answers soon and that the plaquenil helps you feel better.
Sometimes it takes a while to get a Lupus diagnosis where your labs & symptoms match. I saw several Dr's & had symptoms for years before actually getting a Lupus diagnosis. Don't give up, keep a log of your symptoms & stick with a Rheumatologist you feel comfortable with. Plaquenil helps relieve inflammation, make sure you get your eyes checked once a year. There's other types of autoimmune diseases other than Lupus like mixed connective tissue disease so it may be another form of autoimmunity. Best of Luck to you
LOuters, I am sorry you are going thru so much still. I hope you get some answers soon too. I too am fighting for answers with my knee giving me trouble. It is the back of the knee that I had a partial replacement and suddenly after almost 3 months after surgery I am having a lot of trouble walking. Rheumy says not her area of expertise, PCP checked for a blood clot and there is none, and it isn't the knee so not the surgeons problem. I am giving up with docs for now. It is a big fat guessing game for them.
Here is the thing you might do...did you see rheum over at the Mayo clinic? If you did then i go back and contact them and explain what is going on with your new rheum. IF they really feel you have it ask them to have a conversation with your new rheum about why they feel it is lupus and not the other disease.
Especially since being on plaquenil can make the other worse! Also, i do not who put you on steroids but it also can hurt testing for specific diseases. I do not understand why you were put on them before they knew for sure what is wrong with you.Especially as it can affect testing. Plus, i look at pred pills as extremely serious reasons only to take them...not just due to flares. Unless flare is causing life threatening issues, of course.
But either way....i try your best to get the two doctors, one you are seeing now plus one from Mayo to have a simple conversation about why and what they think you have among each other....and then have one of them explain it when they come to decision.
Only makes sense...and plus you will have more confidence in your new one if they communicate between one another. Just emails could possibly easily solve what one is missing or the other.
but if i was you...i stop both drugs ...taper off the pred pills slowly(ask your doctor how to do this) until the two doctors can work it out amongst themselves.
Great about your cherry experiment!! OR could be pred and plaquenil had part in lowering it since you are taking both and both reduce inflammation. ...why if you lower it ..your inflammation numbers normally do go up on most people! I sincerely strongly recommend you read up on side effects both short and long term of steroids. I understand there are times we must use them...but less is best with them.
good luck and hope you can get the two doctors to just even email if not speak with one another!
When my symptoms first started I could hardly raise my arms above my head, I had to lower my head down just to comb my hair. I was first placed on Plaquenil for 3 months and it did not touch my pain, then the Rhuemy started giving my steroid shots in my shoulders and that would last about 4 months but the pain came back with a vengious. It wasn't until he added Methotraxate along with the Plaquenil that my pain level and my sed rate began to come down and I went in to remission.
Please get off the oral steriods as quickly as possible they will destroy your immune system and leave you vulnurable to Cancer.
I would get both the Mayo doctor and the rheum you are now seeing to communicate with one another. Especially if you call the mayo one and say how the new rheum does not feel they tested you correctly for lupus and that you do not even have it. If they say ...nooo we did a good job. Well let the doctors discuss it between themselves and get back to you once they reach conclusion.
They can even email with one another and will not take much time out their busy lives! Only fair to do this for your sake.
Okay...but i do not get who put you on plaquenil, mayo or new rheum? If new one..why if they do not feel you have lupus and it will exacerbate the disease they think it is? Why not take you off it plus pred pills until all testing is done since both could interfere with certain tests....both reduce inflammation and you need correct readings to help diagnose what ever you have!
I also read about the short and long term negative side effects of prednisone or any steroid medication. I personally will not use it unless i am serious situation, life/death not just because i am in a flare. I just seen what has happen to my own body and others and not good.
So hopefully insist that those two doctors speak with each other and get to the bottom of your diagnoses. If you must, i would go to each's boss to get them talk as you are in the middle. They need to work it out as they are the experts you are depending on them coming up with right diagnoses!
Congrats on your cherry experiment! I would not keep drinking it until they are done testing you but tell them about the results....as you most likely do want to do specifically what is wrong with you. GOOD LUCK and hope they figure it out among themselves instead of torturing you!!
Sounds like your doctors need to talk with each other and find out exactly what is going on. I don't like having to go through multiple tests to reach the same goal.
Dermatomyositis is an autoimmune disease and is closely related to lupus but usually they do a biopsy I thought But it would explain all your muscle weakness. You can have multiple different immune disorders at one time A single anti-DNA neither rules in nor out for lupus. An ESR of 40 is actually fairly mild so maybe you are improving Keep up with the diet- every little bit helps!!
I have had different rheumies give me different diagnoses too but it all came down to degrees of autoimmune disroders I would pay heed to the fact you were recently acutely ill with significant kidney damage and put some faith in your doctors abilities to treat With your history it would not be wise to change your medications without very close medical supervision regardless of what your dx is at the moment. Hang in there...
I was originally put on prednisone for kidney damage. They were able to get my kidneys functioning again but since there was an underlining auto immune disease Mayo kept me on it. I am no paying with many side affects. I am so ready to get off of it, it has really made life so much harder. All my doctors are in agreement (thats the only thing they agree on LOL) of getting me off the prednisone but realize it will be a very long process. When I was originally sick this spring my ESR was 120 and took several high doses of IV steroids to get it down. And since the decreases its been slowly rising. Mayo was originally the ones to put me on the plaqunille and then I ran out and stopped taking it for a few weeks till I saw my new rheumy. My new rheumy just loves plaquinelle and feels like everyone should be on it. I was second guessing drinking the cherry juice but that's all I had in the house so I went with it. But I have been avoiding it for the last week for my next blood draw Monday. It has also been almost a month since I have been off the plaqunille anxious to see how that affects my labs. Tonight has been rough again I spent almost 45 mins in the shower trying to get my pain under control and nothing is helping. Its just getting so old.... sigh..... I am very stubborn when it comes to taking pain pills or any pills so its been hard for me to take pain pills but thats the only way I can even get a few hrs of shut eye.
I appreciate all the kind words and encouragement! This support group, family and friends keep me going. A few people are really starting to figure out that I am sick and cant do anything. I just wish people would understand simple touches hurt. Everytime I go to church people will just pat me on the back or rub my shoulder and its like OUCH! But its hard for them to understand.
OOOOO! sounds nummy!!! might have to give that a go sometime. :) Ann A. said:
I love cherries for inflammation. I use my ice cream maker to make tart cherry sorbet. Taste great. And I keep dark sweet frozen cherries for when i need a snack. Sucking on a frozen sweet cheery is divine. I wish you the best.