 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Lupus / August 2007Shingles recovery
I have early stage lupus and take plaquenil for it. I came down with shingles in the middle of June. The doctor gave me a short term prescription, the name of which I forgot but it was an anti-herpes drug; prednisone, and Lyrica. The prednisone had awful side effects such as insomnia and ugly mood swings, I am talking severe depression here, but once I realized it was the prednisone, I knew I'd get past it. I took it in diminishing amounts and finished it after three weeks. Then my immune system went haywire and I caught a mild virus causing swolen saliva glands. The insomnia continued for a while and is finally abating. Lack of sleep caused muscle tension, which caused headaches and hipbone aches. I can't take lunesta every night without getting ill effects from it. The actual pox aspect of shingles is long gone, but the post herpatic neuralgia is making me crazy! I feel like my skin is on fire when I am not just hurting. Also, we have temps reaching 103 degrees here and my old Volvo AC isn't worth much. Last week I went for a sleep study overnight, and remained for a narcolepsy study the next day. This must have stressed me because after taking six short naps during the day, I went home and slept five hours, got up for an hour, and slept five more hours. Since then the PHN pain has been excruciating. I continue to take 75 mg of Lyrica twice a day. The doctor gave me samples which run out today, and I can fill precriptions for Lyrica or Neurontin, which is an older formula and cheaper. Any thoughts, anyone? I know from prior posts in the NG that some of you have had shingles. How long did your pain last? Any suggestions to diminish it? If you have had chicken pox but not shingles, and have lupus, get the vaccine. I am mad as hell that neither my internist or rheumatologist suggested it. It came on the market last year. Information and sympathy will be appreciated. I have lurked here for years and rarely posted, but your help is needed now. MsLiz age 54 early stage lupus and the rheumy denies I am disabled ! First off I noticed you mentioned rheumy denies you are disabled? Get a darn lawyer and fight this thing. If you can not preform everyday duties and such you are disabled. How long you been like this and what does doc mean EARLY stages of lupus? Is that meaning you have no kidney involvment? then I must be in early stages myself for the last 9 yrs LOL when diagnosed but sick since 1993 figure that one out. I would talk to a lawyer for disability and find someone who can fight for you on this one ok? Now the shingles. I had them but the pain when not as severe as you describe. There are cases of the pain being that bad and you are one of them. I took neurotin and found it gave me a personality change. SO doc told me to quit it. Then later tried lyrica and never again for me. Each person's body make up is different so you never know. Lyrica gave me the feeling I could not do zip. I could not think straight or decide what I was suppose to do or do it actually. I stood in the kitchen one day and it was like What or where am I? I felt my whole body was odd. So of course they told me stop the morning dose and I did but the hung over feeling from night dose did the same thing. Imust have already too much seretonium in my body :) who knows. so quit that. I have neuropathy and tried 3 different drugs for pain nothing has helped. I am sure there are some that says stick with neurotin, some swear by it and some by lyrica. If cost is a problem then go with what you can. But I do not think you can just STOP lyrica after being on it like that OR switch to neurotin. I think you need to decide and do it today cause you will have with drawl I was told. Call the doc on that will you?? I am so sorry that you are having this problem and wish I could help more. What other health problems you have besides what they rheumy called EARLY stage? Are you seeing other docs? Ask them. But me, I would call a lawyer and just apply for it now and see what happens. You apply at the SS office, on line or phone and see what happens. IF turned down, fight it with a lawyer and talk talk talk. good luck keep me informed privately if you want janers >First off I noticed you mentioned rheumy denies you are disabled? Get a darn lawyer and fight >this thing. If you can not preform everyday duties and such you are disabled. How long you been >like this and what does doc mean EARLY stages of lupus? I have no organ damage. He thinks my weight is my biggest problem. I think it is a problem too, and that makes me want ot eat. I have metabolic syndrome, so I produce too much insulin after eating, and that wears me out. >Is that meaning you have no kidney involvment? then I must be in early stages myself for the >last 9 yrs LOL when diagnosed but sick since 1993 figure that one out. I would talk to a >lawyer for disability and find someone who can fight for you on this one ok? LOL, I am a lawyer, but only handled one SS appeal for a fellow I was doing child custody and divorce for. >Now the shingles. I had them but the pain when not as severe as you describe. There are cases >of the pain being that bad and you are one of them. [quoted text clipped - 7 lines] >have already too much seretonium in my body :) who knows. so quit that. I have neuropathy >and tried 3 different drugs for pain nothing has helped. >I am sure there are some that says stick with neurotin, some swear by it and some by lyrica. If >cost is a problem then go with what you can. But I do not think you can just STOP lyrica >after being on it like that OR switch to neurotin. I think you need to decide and do it today >cause you will have with drawl I was told. Call the doc on that will you?? Okay, I will probably refill the Lyrica. I will talk to the pharmacist. I am charging everything these days. I can't do zip either, but there are other issues too. I may have Asperger's Syndrome (a form of high functioning autism), and am trying to get an appointment with a psychiatrist to discuss this as well as chronic depression due to bad marriage. I need to get a separate reliable income so that we can split. >I am so sorry that you are having this problem and wish I could help more. What other health >problems you have besides what they rheumy called EARLY stage? Are you seeing other docs? Ask >them. But me, I would call a lawyer and just apply for it now and see what happens. You >apply at the SS office, on line or phone and see what happens. IF turned down, fight it with a >lawyer and talk talk talk. I recently decided that I need to apply for SS, but my goal when I came down with shingles was to resume practicing law. Now I just can't see it. I haven't got a doctor willing to say I am disabled, and I believe that is key. Thanks Janers. I have seen your name here before. The encouragement is very valuable, and I really did not expect such a speedy reply. Well, there is one thing which will put me to sleep. The president of the US is making a speech, so I signing off to take a nap. I really should record him, he knocks me out. LOL. MsLiz Hi MsLiz, there's no such thing as 'early stage lupus', & if that's what your doc said, I strongly suggest you go elsewhere. Lupus is a disease that is totally unpredictable in its progression. It can hit you like a ton of bricks very quickly or you can have problems for decades that don't advance beyond joint pain with an occasional flare. Everyone is different. If you still have neuropathy from 'shingles', there's a good chance it's not just from shingles. Regarding the vaccine for chicken pox, I would suggest you do some homework about the possible repercussions regarding ANY inoculations if you have lupus. We simply react differently from the norm. I've had shingles, & was on Neurontin for 2+ years, but it was because of lupus related vasculitis/brain involvement that caused the peripheral neuropathy, not shingles. I know how painful PN is, especially at night (felt like shards of glass bouncing around inside my legs the instant I fell asleep), & I really hope you research PN or call their local support group for more info, plus get a second opinion as far as 'early stage lupus'. Good luck to you! Hey, I'm 51, was dx'd at 30 & I'm still here! Candi >I have early stage lupus and take plaquenil for it. > [quoted text clipped - 40 lines] > age 54 > early stage lupus and the rheumy denies I am disabled ! >Hi MsLiz, there's no such thing as 'early stage lupus', & if that's what >your doc said, I strongly suggest you go elsewhere. I think those are my words, paraphrasing what I understood him to say. My rheumatologist is the head of the department at the Univ. of Alabama, Birmingham, and I see him every six months. Based on your advice, I will call tomorrow and move the appointment up. When I go in, they take a lot of blood and urine, and then I get a letter a few weeks later telling me to keep on doing what I am doing. >Lupus is a disease that >is totally unpredictable in its progression. It can hit you like a ton of >bricks very quickly or you can have problems for decades that don't advance >beyond joint pain with an occasional flare. Everyone is different. If you >still have neuropathy from 'shingles', there's a good chance it's not just >from shingles. I started out feeling tired, then had mildly ill feelings like I was going to come down with a cold but never did. After a few years I came down with the ton of bricks you describe and it took six weeks to get the appropriate blood test, referral, more blood tests and diagnosis. I tried generic plaquenil and it did not help. The real thing did the trick and did not tear up my stomach. Thereafter, I had the occasional flare up but felt like I was doing pretty well. > Regarding the vaccine for chicken pox, I would suggest you do >some homework about the possible repercussions regarding ANY inoculations if >you have lupus. We simply react differently from the norm. I had chicken pox as a child, and would like to have been offered the shingles vaccination. It is moot now! > I've had >shingles, & was on Neurontin for 2+ years, but it was because of lupus [quoted text clipped - 4 lines] >info, plus get a second opinion as far as 'early stage lupus'. Good luck to >you! Hey, I'm 51, was dx'd at 30 & I'm still here! Candi I am glad you are still here, Candi! Are you still employed? or do you qualify for disability? Sorry, I am nosey and don't know when I am inappropriate somethimes. I googled PN and the description is exactly what I am feeling. I have sudden flashes of heat and fire on my skin, plus my glands were swollen. When you say brain involvement, you are just describing the nerves and sensations, you didn't get any brain damage did you? Sorry for my wording, I don't think you sound brain damaged, it just the mention of brain involvement scared me. Did you find that your sleep patterns changed? I slept a lot to day, but never cleaned up the kitchen. A few weeks ago, I was sleeping as little as two hours a day. Thank you so much for your input. MsLiz Hello, this group isn't as active as it used to be, but be assured there are a lot of people here reading & will respond. In the meantime, there's another, among many, places to go for info. This is a very informative & friendly one - http://www.thelupussite.com/forum/forumdisplay.php?f=41 Regarding my brain involvement, that's up for debate, depending on who you ask ;-) but an MRI showed an occipital area of attenuation (yeah, right) that causes diplopia (double vision), problems with autonomic nervous system (regulates involuntary action; ie sweating, breathing, digestion, etc.) but mine primarily involves a sweating issue, which could be attributed to or aggravated by menopause. Hee hee. And slight aphasia. Not good for board meetings, especially if you're in a communications field, graphic design, attorney - I mean most of your work involves research & the power of your words. I'm not putting your rheumy down, but mine is head of rheumatology at the Univ. of Cleveland. I'm sure he's an excellent physician, perhaps he was trying to alleviate your fears, maybe because your labs were on the low end of norms. My doc keeps telling me to keep doing what I'm doing too! I have a mini animal rescue group here, horses, a chicken, dogs, cats, etc. & he says they're keeping me alive. I'm a graphic designer/copywriter by trade but I haven't worked outside the home in 4 years. I do some freelance work, but I could definitely do more. My fiance owns a business so he supports me/us. I really need to resurrect my disability claim that was denied in 2000 - I just didn't pursue it because of a variety of problems that year. Divorce, relocating from another state, my father passed away, my own illness acting up, etc., but it's my understanding the lupus is on the 'list' of approved conditions for disability. I simply didn't have the fight in me at the time, but I think I'm ready to go another round. About the mildly ill feelings. A lupus flare strongly resembles a bout of the flu. Achy joints, fever, malaise, etc. It's really hard to differentiate between a flare and a virus, even for the best specialist, because the ANA isn't indicative of disease activity, simply a marker that you have a connective tissue problem. Are you photosensitive? Have you ever had a rash, not a sunburn, from sun exposure? That's pretty much conclusive of anti-phospholipid syndrome which is dx's with a positive anti-cardiolipin test or a false positive syphilis test, which also inconsistently fluctuates. It's often secondary to lupus, but can be a primary illness. Regarding sleeping all night - what's that like?? Candi >>Hi MsLiz, there's no such thing as 'early stage lupus', & if that's what >>your doc said, I strongly suggest you go elsewhere. [quoted text clipped - 64 lines] > > MsLiz >Hello, this group isn't as active as it used to be, but be assured there are >a lot of people here reading & will respond. In the meantime, there's >another, among many, places to go for info. This is a very informative & >friendly one - http://www.thelupussite.com/forum/forumdisplay.php?f=41 I had noticed that this group had quieted down. I will check out the other site. >Regarding my brain involvement, that's up for debate, depending on who you >ask ;-) but an MRI showed an occipital area of attenuation (yeah, right) >that causes diplopia (double vision), problems with autonomic nervous system >(regulates involuntary action; ie sweating, breathing, digestion, etc.) but >mine primarily involves a sweating issue, which could be attributed to or >aggravated by menopause. Hee hee. My LMP was 6/06 and the hot flashes ended a year or so before that. > And slight aphasia. Not good for board >meetings, especially if you're in a communications field, graphic design, >attorney - I mean most of your work involves research & the power of your >words. I stopped practicing law before I was diagnoses. I knew something was wrong, and was depressed, then my mother died rather suddenly. > I'm not putting your rheumy down, but mine is head of rheumatology at >the Univ. of Cleveland. I'm sure he's an excellent physician, perhaps he was >trying to alleviate your fears, maybe because your labs were on the low end >of norms. I think that is the case, plus no organ damage at the time of diagnosis in Dec. 2003. He says my being overweight is more of an issue. I find it impossible to engage in serious exercise. > My doc keeps telling me to keep doing what I'm doing too! I have a >mini animal rescue group here, horses, a chicken, dogs, cats, etc. & he says [quoted text clipped - 3 lines] >really need to resurrect my disability claim that was denied in 2000 - I >just didn't pursue it because of a variety of problems that year. Divorce, That's been on the back burner for a while. >relocating from another state, my father passed away, my own illness acting >up, etc., but it's my understanding the lupus is on the 'list' of approved >conditions for disability. http://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm#Top That is the link to the list. We must have lupus plus other stuff. I haven't waded through the entire site, and am not sure I will qualify. >I simply didn't have the fight in me at the >time, but I think I'm ready to go another round. About the mildly ill >feelings. A lupus flare strongly resembles a bout of the flu. Achy joints, >fever, malaise, etc. I remember. This is different. It is like post shingles pain, but on my legs as well as upper body. I feel like I am an fire. > It's really hard to differentiate between a flare and a >virus, even for the best specialist, because the ANA isn't indicative of >disease activity, simply a marker that you have a connective tissue problem. >Are you photosensitive? Have you ever had a rash, not a sunburn, from sun >exposure? No, to rashes. I don't spend time in direct sunlight on the doc's advice, and am rather fair. >That's pretty much conclusive of anti-phospholipid syndrome which >is dx's with a positive anti-cardiolipin test or a false positive syphilis >test, which also inconsistently fluctuates. It's often secondary to lupus, >but can be a primary illness. Regarding sleeping all night - what's that >like?? The prednisone caused vicious insomnia. I'd stay up until dawn, and when I'd have a little urine, it would wake me up. I'd get only about two hours sleep at a time,without dreams. I already had sleep apnea, so I use a machine to keep my airways open. Last week I had a sleep study to check my air pressure needs, plus a daytime nap study to check for narcolepsy. There was a blood test for that, as their is apparently a genetic factor. I will get the results next week. Since that overnight stay in the hospital, my nerve pain has increased greatly. I can sleep longer periods and dream now, fortunately. Thanks, again. MsLiz One more thing, ignore IronJustice & MI5Victim. Don't even bother reading it. Candi >I have early stage lupus and take plaquenil for it. > [quoted text clipped - 40 lines] > age 54 > early stage lupus and the rheumy denies I am disabled ! One MORE thing. May 26, there was a thread about shingles, started by Carly. Candi >I have early stage lupus and take plaquenil for it. > [quoted text clipped - 40 lines] > age 54 > early stage lupus and the rheumy denies I am disabled ! >I have early stage lupus and take plaquenil for it. > >I came down with shingles in the middle of June. The doctor gave me a >short term prescription, the name of which I forgot but it was an >anti-herpes drug; prednisone, and Lyrica. adding to my own post: The rheumatologist got my message and his nurse relayed the message that shingles doesn't have anything to do with lupus. I hope there was something lost in translation because I know I got shingles because of my immune system being weak. He probably means that the treatment of shingles is separate from lupus. I see the internist on Monday, and am wondering who can checkme for peripheral neuropathy. I also started filling out the online SSA disability application, and was glad to find the guidelines on the internet. Back when I practiced law they had it in a book, but online is handier. MsLiz |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.