Hi everyone. I found this site and hope it helps me find some answers and support! The past year and a half has been torture, with constant new things happening to my body, all starting with a pain in my right side of my pelvis that they originally thought was a hernia, well it wasnt. Then came a rash (goes from pink to purple and scaly) on my eyelids that only responds to a steroid ointment, overwhelming fatigue, stiffening of my fingers so badly I couldnt open my sons bottle. Then came some tremors in my thumbs mostly, hair loss, an inability to remember what I just said 5 minutes before (general memory loss), pleurisy for the 3rd time in my life, a pink pimplish (without puss inside) rash in the sun (only on chest and a few on upper arms), aching pain in my right side of back (i call kidney pain) and in the past 2 weeks I have developed intense headaches with intense pressure in the lower part of my head as well as vomiting and nausea. And I have no diagnosis. My ANA was negative roughly 5 months ago and I do not have a malar rash so my rheumatologist is reluctant to diagnose anything. I do have protein in my urine and sed rate is high. Hoping to get some help on this site, even if someone is familiar with a disease similar to lupus that my symptoms may sound like, please help!!!
my rheumatologist is offering prednisone, neurontin, ultram, naproxen, and i dont want to take any of them when they cant even tell me what is wrong! anyone have any natural remedies to help the fatigue, joint pain, and skin?
I’m sure this is a very stressful situation you find yourself in. With autoimmune diseases it can take a long time (sometimes years) to get a diagnosis. The only advise I can offer is that you consider carefully the medication being recommended to you. Although there are many natural and herbal supplements, generally they work best along side of traditional medication. Most times drugs are almost a trial and error thing with autoimmune, with the doctors trying to find the right combination and dosage that will help with your symptoms. I’m not saying you should blindly take everything offered, but you probably shouldn’t rule out all prescriptions based on not having a diagnosis yet. That may be a while coming as the disease progresses and most treatments for autoimmune are quite similar. I hope you find something that makes you feel better soon!
JConl3a said:
my rheumatologist is offering prednisone, neurontin, ultram, naproxen, and i dont want to take any of them when they cant even tell me what is wrong! anyone have any natural remedies to help the fatigue, joint pain, and skin?
Just because your ANA was normal does not mean you dont have an autoimmune disease. Lots of people who are negative actually have lupus, it took 5 years for my ANA to be positive. If your dr is offering treatment then I dont understand why you are not taking it. I have lupus and sjogrens and the treatment for both is the same. Having a diagnoses may not matter as much if you want to feel better, plus if you start treatment early on then you can slow down the progression. As far as I know there us nothing out there that is all natural that would stop the progression like conventional medicines. I use both western medicine and chinese treatments such as accupuncture and think its worked well for me so far. I also see a chiropractor which is amazing for the joint issues.
I know how your feeling and not knowing is the worst but in the middle of my first major flare (which lead to my dx) I would have done anything for an answer but Ive realized that treatment was more important than having a definate dx.
I started plaqunil June 21, and it has worked wonders. Im almost feeling like the old me. I was afraid to start treatment as well but I am so glad I did.
Oh and the headaches were the worst headaches I had ever had, and now they rarely come.
Dont suffer, take the treatment your dr is offering you. Then once you are stable then you can start to find out exactally what it is. It does sound like lupus to me but I am far from being an expert.
I hope you feel better soon.
Thank you for your reply. The problem with the treatment they are offering is that it is only predisone, and pain killers. I would be more willing to try plaquenil as the effects of predisone and painkillers are so harmful. If I needed an extra boost here and there I would definitly take them, I just dont want steroids daily. How long did you suffer before a dx?
Thank you for your advice. Is it possible to get prescribed plaquenil without a dx? I have done some reading and that seems to be the most helpful. It amazes me that they have no problem throwing narcotics at me and steroids, yet my current rheumatologist is worried about the negative effects of plaquenil. I did try the naproxen but it reeked havoc on my stomach. I had a cold and pleurisy all winter last year, and the steroids did help cure the pleurisy. I also received a cortizone shot in my hip which did wonders as well, however daily predisone scares me. Painkillers “knock my socks off” so to speak, and being a nurse I can not afford to function like that daily! I appreciate the responses.
Roni said:
I'm sure this is a very stressful situation you find yourself in. With autoimmune diseases it can take a long time (sometimes years) to get a diagnosis. The only advise I can offer is that you consider carefully the medication being recommended to you. Although there are many natural and herbal supplements, generally they work best along side of traditional medication. Most times drugs are almost a trial and error thing with autoimmune, with the doctors trying to find the right combination and dosage that will help with your symptoms. I'm not saying you should blindly take everything offered, but you probably shouldn't rule out all prescriptions based on not having a diagnosis yet. That may be a while coming as the disease progresses and most treatments for autoimmune are quite similar. I hope you find something that makes you feel better soon!
JConl3a said:my rheumatologist is offering prednisone, neurontin, ultram, naproxen, and i dont want to take any of them when they cant even tell me what is wrong! anyone have any natural remedies to help the fatigue, joint pain, and skin?
That would be up to your doctors…it certainly doesn’t hurt to ask! There are lots of NSAIDs available…they are a staple for most of us! LOL I believe Celebrex is the easiest on your stomach. I had a “side effect” from it so had to stop taking them but they worked wonders for me. I’ve been on Arthrotec for years…it has a stomach medicine in it to help. It’s really important to take NSAIDs with food when you are on them long term.
I am 21 years in (if you start from the first time they tested me for Lupus) and as of yet I haven’t had a definitive dx of Lupus. Doctor’s said I don’t have full blown Lupus yet. I have 3 of the criteria (and multiple symptoms) and you need 4 criteria for dx. Interesting enough, some doctors in the states are giving a dx of incomplete lupus (ILE) to people like me.
I also hate taking pain killers, but have accepted when I need them I need them! I find prednisone scary as well and although it’s been offered I have opted not to take it. I’ll wait until I have no choice…then I’m sure I’ll take that too! LOL
I encourage you to discuss the pros and cons of all drugs with your doctor. Hopefully you’ll find something that will help!
JConl3a said:
Thank you for your advice. Is it possible to get prescribed plaquenil without a dx? I have done some reading and that seems to be the most helpful. It amazes me that they have no problem throwing narcotics at me and steroids, yet my current rheumatologist is worried about the negative effects of plaquenil. I did try the naproxen but it reeked havoc on my stomach. I had a cold and pleurisy all winter last year, and the steroids did help cure the pleurisy. I also received a cortizone shot in my hip which did wonders as well, however daily predisone scares me. Painkillers “knock my socks off” so to speak, and being a nurse I can not afford to function like that daily! I appreciate the responses.
Roni said:I’m sure this is a very stressful situation you find yourself in. With autoimmune diseases it can take a long time (sometimes years) to get a diagnosis. The only advise I can offer is that you consider carefully the medication being recommended to you. Although there are many natural and herbal supplements, generally they work best along side of traditional medication. Most times drugs are almost a trial and error thing with autoimmune, with the doctors trying to find the right combination and dosage that will help with your symptoms. I’m not saying you should blindly take everything offered, but you probably shouldn’t rule out all prescriptions based on not having a diagnosis yet. That may be a while coming as the disease progresses and most treatments for autoimmune are quite similar. I hope you find something that makes you feel better soon!
JConl3a said:my rheumatologist is offering prednisone, neurontin, ultram, naproxen, and i dont want to take any of them when they cant even tell me what is wrong! anyone have any natural remedies to help the fatigue, joint pain, and skin?
Crazy....
http://www.youtube.com/watch?v=2OVtpnpCOKM
http://restministries.com/2011/10/03/devotion-who-am-i-with-this-il...
Yes you can get plaquinil without a definate dx. My lupus like inhibitor and dna tests were negative but I still have 4 of the 11 criteria for a lupus dx. My dr told me to take the plaquinil and if I improved then we would know we were on the right track. A good rhuemy will treat your symptoms and not depend only on lab tests. Ask your dr about plaquinil, its very mild the only thing I have had was a little upset stomache if I dont eat with it. Right now I only take tylenol for pain cause I hate pain killers but sometimes the pain gets so bad I want to reconsider. Predisone is a necessary drug for flares. I remember before my dx my dr had given it to me a few times for a sinus infection and it was a wonder drug, I felt sooooo good!! But with my biggest flare it didnt make me feel better but I think it was because it was only 10mgs and I needed a much higher dose. I think that its smart that you be weary about long term use, I think if you could get on the plaquinil you would feel so much better. I hope your dr will agree.
It stinks that with all these other symptoms your doc is not doing more to help you. Any chance you might see another doc for 2nd opinion?
I finally got in touch with the lupus foundation in my area and they are recommending another rheumatoologist. I am waiting to see my gp to get the whole battery of tests again. I never thought I would hope thhat something shows. Up positive, but at this point I am ready to begin the proper treatment and hopefully see some relief. Doesn’t it figure though that the rash I have had on my eyelids for 8 months disappeared this morning!! Luckily I have plenty of pictures. Thanks for all of your tips, much appreciate it all.
Hi icon13a I understand everything you are saying.I have been through the same things for 4 years or more.yes i was throwing up very ill have had urinary track in I have also have pain in pelvic and have back pain kidneys and i just got shingles i have sever headaches in the lower back of my head i am shore this is ower lymphnodes I swell all over my chest hurts and under my arms I even have sores under my skin my heart has ear regular heat beat so .my stomach swells so bad i cant were my pants till it goes down.and i have swelling in my groin.so what you have been dealing with I am betting you have lupus.just keep telling them what you are going through and take pictures when something new comes out also take notes ask questions.OK hope this helps.dee
It kind of sounds like psoriatic arthrisis. I hate it when a doc can't make up his mind. Drives me nuts. I know how you feel. I have been waiting 7 years for a diagnosis. I am also at my 3rd Rheumatologist. If he doesn't give me an answer I will take my MRIs, x-rays, and bloodwork and go to the next one. If I end up in Tampa before I get and answer then so be it. It's my health and my peace of mind.
If we could get rid of all these greedy malpractice lawyers in this country maybe doctors wouldn't be so quiet and afraid to diagnose and treat patients. I know in some cases a lawsuit is the only way to put a bad doctor out of business but come on! Some of the lawsuits are just plain silly.
Good luck and I hope you get some answers soon,
Many Blessings,
Jenny
Just curious to see what makes you think psoriatic arthritis? That’s my technical dx… And from what rhuematologists have told me the common forms of both lupus arthritis and PsA are almost identical. In my particular case they dx psoriatic arthritis due to family history and negative ANA, but because I have so many Lupus symptoms they cautioned that it may still develope into SLE. During a nasty arthritis flare a few years later, the ANA test came back positive. They are still waiting on that 4th criteria to dx SLE and have said that I don’t have full blown Lupus yet. It’s a little frustrating to have Lupus symptoms without the dx but at the same time I almost feel like I’ve already got all the “good” criteria and don’t really want any of the stuff that’s left…like kidney failure or seizures!! It’s a frustrating limbo I’m sitting in!!!
Jenny Lynn said:
It kind of sounds like psoriatic arthrisis. I hate it when a doc can’t make up his mind. Drives me nuts. I know how you feel. I have been waiting 7 years for a diagnosis. I am also at my 3rd Rheumatologist. If he doesn’t give me an answer I will take my MRIs, x-rays, and bloodwork and go to the next one. If I end up in Tampa before I get and answer then so be it. It’s my health and my peace of mind.
If we could get rid of all these greedy malpractice lawyers in this country maybe doctors wouldn’t be so quiet and afraid to diagnose and treat patients. I know in some cases a lawsuit is the only way to put a bad doctor out of business but come on! Some of the lawsuits are just plain silly.
Good luck and I hope you get some answers soon,
Many Blessings,
Jenny
Thank you ann. My first symptom was pain in the pelvis, and when they did a ct there was “increased sclerosing of the sacroiliac jolint” Noone every really clarified if that could be a result of an autoimmune diseaase or not. My rheumatoid factors were negative so maybe that was enough investigation for my rheumatologist. I had that pain for roughly 4 months before I experienced any other symptoms, and it has been all downhill from there! The sun sensitivity is a very scary and strange thing to me. I was in the sun this summer and didn’t notice anything but the rash, but after yesterday, I will not be in the sun more then a couple of minutes at a time until they start helping me! Does Plaquenil or any other common drug for autoimmune disease treatment help with the sensitivity?
No, I was told by my dr that plaquinil actually reqiures you to stay out of the sun. I guess we are supposed to live like that forever. I wish I could play with my kids outside but I cant. My sensitivity is pretty severe, I have to wear sunglasses outside at all times as well as in stores and offices that use floressent lighting. My eyes hurt so badly when exposed to light but itis getting better just not good enough to go outside without protection