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Really scared and don't know what to do anymore...

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Posted 5/31/2011 1:48 AM (GMT 0)
I have not been online in a couple weeks... been really frustrated about things. I don't know if anyone remembers me from before, but I have had swollen lymph nodes, high RF factor, severe pain in my bones/joints, and extremely weak along with a lot of other weird things like rashes, sores on my head, etc... But to make a long story short, there was a big question about whether it was Lupus or not and I went to a rheumatologist who did a bunch of bloodwork primarily for Lymmes disease because he saw an old tick bite scar on my leg and then told me that everything was normal and I didn't need to come back, but when he sent my bloodwork paperwork back, the RF factor was still well above normal but slightly lower than the first time.

The first time they had taken it I was not on steroids, but I have been on them for around 9 weeks now (very high doses) which is the only thing allowing me to get out of bed at all from being so weak. Then my new family doctor gave me tramadol to help with pain and neurontin. For the first time in probably over a year, I had a full night's sleep with the neurontin--it really helped.. but after about a week it became less effective during the day so she upped my dose to 3 pills a day which is helping a lot. Now I am really scared because I will run out of the prednisone which I have been taking 20 mg a day (morning and night of 10 mg each) at the end of the week and I am already where if I am even late on a dose I start getting too weak to move too much.

All my doctors are telling me I have to come off the steroids and I don't have Lupus because I had a negative ANA test which they said tests for it. I don't know what to do anymore. My lymph nodes are so swollen that my family doctor says she thinks it might be lymphoma and is having an MRI done on June 6th--but that is a week away from being off the steroids and I am trying hard to keep up with my schooling in the doctoral program because I don't want to give that up. I have worked so hard to get through school this far and kept good grades too. I am just beyond frustration with doctors!!! I feel that none of them care at all. I need a referral to see another Lupus doctor that is also a rheumatologist but since this is a new family doctor, she is acting kind of weird about giving me the referral since she thinks it might be lymphoma... but if she was really concerned that was what was wrong with me, why has she made me wait almost a month for the MRI? I feel like they don't understand at all how much this is ruining my entire life!!!

I just want to be able to get out of bed in a day and not be in so much pain or so weak that I can't! I have a little 17 month old son that depends on me and while I have been on the steroids I have been playing all I can with him so that he knows how much he means to me--but what happens when I run out and can't get out of bed again like before? I am also working on my school work as hard as I can to get ahead because I don't know what I will do when I come off of them. I have no idea why the prednisone works such magic for me with my situation--but it does. I need a doctor that really understands me and can help but don't know of any that really do care at all!

I just need someone to encourage me right now. I am so down about all this and just at the end of my rope again with frustration. I have been having a couple really good weeks here lately and so scared now that it is all going to end because none of these doctors care or believe me because things aren't showing up in my bloodwork the way they expect it to! Even when I had osteomyelitis as a child--I never had a fever, no high white count, no nothing in my bloodwork! Yet it was in late stage by the time they put a needle down in my hip bone and found it!

Same with my grandmother's brain tumor (realized it was cancer only 6 weeks before she died because they didn't see anything in her bloodwork and kept telling her it was a pinch nerve) and same with my grandfather this spring who died within 16 days of being diagnosed with an aggressive form of leukemia and had been sick since October but nothing would show up for him on any tests!!! I am not planning to sit around waiting to die of something if it does not show up in my bloodwork. I love my son and my husband and I want to live!!! I feel like these doctors don't care and would just be like "oh well, we did all the tests right" if something happens to me--but they won't listen to me when I say what is going on is not normal and it is really bad right now!!! Can anyone help me please?!!! Nicki
Posted 5/31/2011 4:17 AM (GMT 0)
Hi, Niki, sorry about your frustration. I have stopped prednisone suddenly twice. The first time, I spent 8 days in a mental health hospital and was misdiagnosed with paranoid schizophrenia..... finally correctly diagnosed with a psychotic break from prednisone withdrawal and taken off all psych meds.
The second time, I miscommmunicated between two docs. I had terrible leg pain, like having shin splints, and was then tapered off successfully.
I don't mean to scare you, just let you know that stopping that med can cause serious problems. The answer both times, much quicker the second, was to go get asecond opinion immediately. I went to the ER. Don't forget the ER! I would recommend going after office hours. That way, your regular doc doesn't have any wounded pride :)
Prednisone is a miracle drug, and poison-like. Be careful and use your resources. I have lupus, sjogren's syndrome, dysphagia, vasculitis. I am on plaquinil, procardia, relafen, celexa, fentanyl patch, percocet, omeprazole.
I work full time and volunteer with Bella, my partner in pet therapy!
Hang in there.

Post Edited (Ann-Marie) : 5/30/2011 10:20:43 PM (GMT-6)

Posted 5/31/2011 4:47 AM (GMT 0)
Hi Niki, I just wanted to say I know how you're feeling and all you can do is keep going and seeing different doctors. I've definitely had my share of "oh your bloodwork looks fine" when that is not always the best indicator of whether a person is sick or not. Just recently, a friend had been complaining of severe neck pain, he went to the doctor, the doctor saw he was only 27 and in good health, and just sent him home. Just a couple of days later he a stroke. This kind of stuff scares me so much-doctors don't catch everything. Don't give up and if you know something is wrong, then don't take no for an answer-just go see another doctor. Eventually you will find one who is caring and won't give up on you. Good luck!
Posted 5/31/2011 5:13 AM (GMT 0)
Going from a regular doses of 20mg Prednisone down to nothing is VERY SERIOUS. Like in, it can stop your heart! (Unless this is a does pack you've only been on a few days.)

If your doctor won't help you , go to the ER rather than stopping suddenly.
Posted 5/31/2011 11:06 AM (GMT 0)
Maybe you all have had better luck with ERs than we have. They have done NOTHING for us in the first month before my wife started treatment and she was in absolute agony. Because her labs didn't show much they said there was nothing they could do and gave her some pain meds and kicked her out. This was a woman in so much pain she couldn't stand and had a fever everyday for weeks. Absolutely ridiculous. You can be sure if it was their wife she would of been admitted and made comfortable. I'll never get over that.
Posted 5/31/2011 11:07 AM (GMT 0)
Thank you everyone! I really appreciate the advice. I did not realize that it was so serious to stop the prednisone that quickly as I thought that was what I would have to do (thank you Lynnwood!)

I have been on 20 mg of prednisone for almost a month now, the week before that I was on 40 mg, and preceding that on 10 mg a day for a week, and before that, I had over 2 weeks:

1 solumedrol shot, then 5 days of a Medrol pack, then another solumedrol shot and then the week of 10 mg prednisone already mentioned, then an 8 mg shot of decadron and the 40 mg of prednisone week at which point I finally saw the rheumy who put me on the 20 mg a day for this one month...

As soon as it gets even close to the dose running out, I start getting pretty weak (I take it every 12 hours) and I am really worried about not having more or how to properly taper off if they won't get me more. I am calling both the rheumy and my new family doc today to ask about it...

I am just wondering too if a negative ANA (after being on this much steroid) is definitive of NO LUPUS. When I called the national lupus foundation local chapter here--I talked to them and was told to go to another rheumy that is better with Lupus conditions.

They were familiar with this particular one I went to and said he has been most unhelpful to other Lupus patients in the past. But I am stumped on the negative ANA test part. They say I have all the symptoms of Lupus but how can I have it with a negative ANA?

They suggested going to this other rheumy who specializes in this particular condition in Atlanta and that he has also done extensive research on both lupus and on a new drug for it that has just come out!?! They said it would be worth a second opinion? What do you think....

The first rheumy said "I show no sign of a rheumatological disorder" although my RF factor was still 20.3 (slightly above the upper limits of normal) but it had come down from the test previous to being put on steroids.... (I had been on the 40 mg dose the entire week before he did the blood work).

I just don't know what to think anymore. I am not showing specific signs of lymphoma like the severe weight loss and such which makes me wonder. And then I don't think lymphoma is episodic from what I read and I have definitely had 2 distinct episodes of what is going on--last year and this....

Does anyone have any thoughts? Thank you all so much for you help and comfort! Nicki
Posted 5/31/2011 11:28 AM (GMT 0)

Dodd said...
Maybe you all have had better luck with ERs than we have. They have done NOTHING for us in the first month before my wife started treatment and she was in absolute agony. Because her labs didn't show much they said there was nothing they could do and gave her some pain meds and kicked her out. This was a woman in so much pain she couldn't stand and had a fever everyday for weeks. Absolutely ridiculous. You can be sure if it was their wife she would of been admitted and made comfortable. I'll never get over that.

I have unfortunately had the same experience for the most part here in my local small town, but when I have gone up to the larger hospital of Atlanta it was a little better (at least they treated me). But they still didn't send me home with anything or help out. They just tell me that obviously this is some sort of "chronic" condition and that I need to find a doctor to help me with it.

That is not exactly what you need to hear when you are so sick you can't get out of bed--literally cannot get up you are so weak and in so much pain. These doctors promise to only "do good" and I am not experiencing that at all!!!!

Nicki
Posted 5/31/2011 1:18 PM (GMT 0)
Yes, you can have Lupus with a negative ANA. Unfortunately, there is NO definitive test that says yes it's lupus or no its not. Instead, according to both the Lupus Organization and the College of Rheumototlgy, you have to have 4 of 11 symptoms.

Some rheumies still insist on bloodwork to show it's Lupus -- they obviously haven't treated many cases of Lupus or aren't very familiar with it -- in this case definitely get a second opinion from a rheumy that the Lupus Org suggests.

Hang in there,
Posted 5/31/2011 2:19 PM (GMT 0)
Thank you Lynnwood! It is so good to see you again! I will see if I can get a referal from my doctor I see today who specializes in the Interstitial Cystitis I have. My neck is really swollen today for some reason which I guess is good so she can "see" it despite being on the 20 mg prednisone dose still.

I really appreciate all your help and advice. I am just getting sick of all this. I had the best time this week at the swimming pool the last 3 days with my baby! It was a new water park-like pool made by the county for our area! He just loved it--and it has a zero entry area to go in (perfect for a one year old) and an area with water spouts shooting up to splash in and even a really nice water slide!

It has just made me so grateful to have time to feel good and play with him and maybe a little "angrier" now about why I should not be able to enjoy this kind of quality of life daily!!!! My husband and I are both in college too--and we have been reading a lot of our chapters together (and he is in psychology) and it has been so fun and fascinating!

I just wish that these doctors could understand that all I want is to be able to live like this--like the week I had over Easter in April and the past 2 weeks--just normal and not in pain and not weak! I can live with the rash and horrible sores on my scalp and all the rest if I am just not so weak and in pain!

I saw on PBS the other day a discussion of a doctor that is in palliative care hospice for children, and he broke down crying saying that he wished he had done more for his first patients in preventing their pain.

It really touched me that he recognized that he had not done enough for them in that area and changed!!! He said that if people are really in pain only 1% ever have a chance of getting addicted to these drugs--so why do they withhold help from the 99% because of the 1%?

It made me want to pack up everything and go up there to help this man. He had such a clear and strong vision of helping those who suffer. I guess if I was not going through all this I would not understand as much how important that is to help both the patient and family when they are dealing with such issues.

Thanks everyone again for your care and support.
Nicki
Posted 5/31/2011 9:20 PM (GMT 0)
I had a good visit with my IC (interstitial cystitis) doctor today who said that having an autoimmune disorder would VERY much explain my symptoms and that IC usually goes hand in hand with autoimmune diseases. She said the fact that I am responding so well to the prednisone makes her feel more sure of that too. She wrote me a note for school to help me out (which I needed very badly) and I am so grateful for this!

She said that I need a note from my family doctor though to get the referral to the other Lupus doctor I was told about--so I will have to see if my Fam doc will do that for me when I see her on friday. I am feeling a little better about things after this visit. I felt more validated and that she was genuinely happy to see how well I am doing at the moment on the prednisone!

Nicki
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