Hi all and my name is Dawn and Ive been suffering with horrible symptoms for the past year. I have tested positive on my ANA test but nothing specific. My physicain is leaning toward lupus and retesting me every 6 to 8 weeks. The reason Im here is to hopefully get some support and some very much needed information. When I have my flare ups Im in alot of pain and naproxin and motrin just arent even taking the edge off the discomfort. My doctor wants to put me on steriods but Im definately not comfortable with taking them. I just feel there must be some kind of "pain" medication that can just get me through the flare ups. So my question is there some perscription medication other then steriods that will help with the joint and muscle pain? Because Ive tried living with the pain and thats just leaving me depressed and feeling very hopeless. Thanks so much for your time and look forward to meeting everyone.
New to the site :-)
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If your physician is leaning towards lupus, or considers it to be some kind of autoimmune disease, then you may want to ask about trying out some prescription medication like Plaquenil. This takes a while to work (anywhere from 3-9 months), but is actually a disease modifying medication instead of just treating the symptoms/pain.
Welcome to the site! Let us know if you have any other questions.
I hope you're feeling better soon.
Welcome to the site! Let us know if you have any other questions.
I hope you're feeling better soon.Welcome to the forum !
I wonder if you have seen a rheumatologist preferably one who is well versed in lupus
Diagnosis is done by careful consideration of all the factors - symptoms, health history and blood tests. In fact a moderately high ANA is all that is needed for a diagnosis of autoimmune connective tissue disease of some sort, not necessarily SLE.
If the ANA is below 1:160 it has less weight. Sometimes it's a question of eliminating the other causes of similar symptoms. I have the impression that testing every couple of months is a bit too short to expect to see much difference. The question is, what is the doctor looking for ? Or , what is stopping them diagnosing and more important treating.
Getting a formal diagnosis of SLE has serious implications for insurance.
Check out the criteria lists pinned at the top of not yet diagnosed and see what you can relate to
All the best
Clare
I wonder if you have seen a rheumatologist preferably one who is well versed in lupus
Diagnosis is done by careful consideration of all the factors - symptoms, health history and blood tests. In fact a moderately high ANA is all that is needed for a diagnosis of autoimmune connective tissue disease of some sort, not necessarily SLE.
If the ANA is below 1:160 it has less weight. Sometimes it's a question of eliminating the other causes of similar symptoms. I have the impression that testing every couple of months is a bit too short to expect to see much difference. The question is, what is the doctor looking for ? Or , what is stopping them diagnosing and more important treating.
Getting a formal diagnosis of SLE has serious implications for insurance.
Check out the criteria lists pinned at the top of not yet diagnosed and see what you can relate to
All the best
Clare
Joined
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750 Posts
I just want to welcome you to the sight foruipurr.You have already got some wonderful information from everyone.I am glad to hear you do have a good doctor to help you figure this all out.I know for me the plaqunil was a life saver eventually for me.Good luck and please keep us posted with what they find out.Tammy
Hello Dawn, (foruipurr-I assume you love cats then)
I am a Dawn too I call myself Lola after one of my much loved felines!
I am in the Uk so all our prescription meds are under different names, so I will leave it to our US friends to advise you, and I am sure they will.
x Lola
I am a Dawn too I call myself Lola after one of my much loved felines!
I am in the Uk so all our prescription meds are under different names, so I will leave it to our US friends to advise you, and I am sure they will.
x Lola
prednisone & 800 mgs of ibuprofen
I am the mother of a beautiful 18 yr old who was diagnosed at the age of 14. We did not want to do the predinisone either, but the pain drove her crazy. After taking them for about 6 mths the Doctor has reduce her from 20mgs of prednisone & 1000mgs of ibuprofen to taking 3mgs of prednisone and 400 mgs of ibuprofen. The doct. has her on immuran,plaquenil as well. it does helpforuipurr;501923 said:
Hi Dawn and welcome,
Sending you gentle hungs and vibes for good luck with getting your pain in control.
I am currently on a dose of prednisilone (steriods) to help me with a flare. I am finding that the relief and sense of being "normal" again (well a lupi normal whatever that is :hehe: ) has been worth the upset of going onto the steriods. I agree plaquinel is a good drug for those of us it works for, I have used plaquinel in the past and it has been excellent for me. It does take some time to work though, several months at least. I am sure I will be going back on to plaquinel when I see the Rhumi, in the meantime my gentle GP has certainly helped by putting me on prednisilone.
All I can say with certainty is that being in constant pain causes depression and feelings of being unable to cope (me 1 1/2 weeks ago) and just getting some decent pain relief seems to make the load of having lupus an easier one to bear.
Do ask loads of questions and see if you fit the other criteria for lupus - not just the ANA. You will lots of information on this brilliant website. Perhaps you could discuss some of the info you research with your dr?
Meanwhile here are some ((((hugs))))
Sending you gentle hungs and vibes for good luck with getting your pain in control.
I am currently on a dose of prednisilone (steriods) to help me with a flare. I am finding that the relief and sense of being "normal" again (well a lupi normal whatever that is :hehe: ) has been worth the upset of going onto the steriods. I agree plaquinel is a good drug for those of us it works for, I have used plaquinel in the past and it has been excellent for me. It does take some time to work though, several months at least. I am sure I will be going back on to plaquinel when I see the Rhumi, in the meantime my gentle GP has certainly helped by putting me on prednisilone.
All I can say with certainty is that being in constant pain causes depression and feelings of being unable to cope (me 1 1/2 weeks ago) and just getting some decent pain relief seems to make the load of having lupus an easier one to bear.
Do ask loads of questions and see if you fit the other criteria for lupus - not just the ANA. You will lots of information on this brilliant website. Perhaps you could discuss some of the info you research with your dr?
Meanwhile here are some ((((hugs))))
I forgot to mention that some nitpicky doctors won't diagnose lupus unless there is some specific lupus symptom but there are only four of those that's why an experienced and knowledgable doctor is important. The four are: two antibodies, anti ds DNA which maybe half those with lupus have and anti Sm which shows up in only one third of those with lupus; proven lupus skin problems and kidney disease are the two other specifics.
There is another diagnosis which is sometimes given when there are no specifics for any autoimmune connective tissue diseases, called undifferentiated connective tissue disease, UCTD. I am sure that many people with a lupus diagnosis could have been given a UCTD diagnosis by a doctor with different diagnosing habits. The main thing is to get the autoimmune CTD diagnosis as they are all treated the same.
Of course it is important not to be misdiagnosed too
Clare
There is another diagnosis which is sometimes given when there are no specifics for any autoimmune connective tissue diseases, called undifferentiated connective tissue disease, UCTD. I am sure that many people with a lupus diagnosis could have been given a UCTD diagnosis by a doctor with different diagnosing habits. The main thing is to get the autoimmune CTD diagnosis as they are all treated the same.
Of course it is important not to be misdiagnosed too
Clare
Joined
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377 Posts
Hi Dawn,
Welcome to the Lupus Site! The advantage of Prednisone over pain medications is that Prednisone will actually slow the disease down where as pain medications just relieve the pain. Sometimes GP/PCP's will do a course of Prednisone to help with the diagnosis process. Prednisone will help Lupus but not Fibromyalgia or CFS. Prednisone is the medication that we love and hate. It is great at slowing the disease down quickly but the long term side effects can be bad.
I will say that I have not had any lasting issues from taking Prednisone. The first 7-8 years I was ill I was on Prednisone all the time, most of it my daily dose was 10mg with increases during bad flares and decreases when we tried to get me off it. So much more is known now about Prednisone and most doctors do not leave patients on it long term unless it is absolutely necessary to control the disease process.
Can you push your doctor to refer you to a good rheumatologist for a consulation? Agree to take the prednisone for 6-10 days if you can see a specialist who can help in the diagnosis process. Do you know what your ana result was? Can you get copies off all the lab tests? Then you can check it against the lists of labs and see if he his missing any tests.
The others have given you good info on the meds we take and the need for a lupus specialist.
Let us know how things go.
Take care,
Karen
Welcome to the Lupus Site! The advantage of Prednisone over pain medications is that Prednisone will actually slow the disease down where as pain medications just relieve the pain. Sometimes GP/PCP's will do a course of Prednisone to help with the diagnosis process. Prednisone will help Lupus but not Fibromyalgia or CFS. Prednisone is the medication that we love and hate. It is great at slowing the disease down quickly but the long term side effects can be bad.
I will say that I have not had any lasting issues from taking Prednisone. The first 7-8 years I was ill I was on Prednisone all the time, most of it my daily dose was 10mg with increases during bad flares and decreases when we tried to get me off it. So much more is known now about Prednisone and most doctors do not leave patients on it long term unless it is absolutely necessary to control the disease process.
Can you push your doctor to refer you to a good rheumatologist for a consulation? Agree to take the prednisone for 6-10 days if you can see a specialist who can help in the diagnosis process. Do you know what your ana result was? Can you get copies off all the lab tests? Then you can check it against the lists of labs and see if he his missing any tests.
The others have given you good info on the meds we take and the need for a lupus specialist.
Let us know how things go.
Take care,
Karen
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