Keep Having Flares

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Regular Member

Date Joined Apr 2006
Total Posts : 46
   Posted 6/18/2007 4:26 PM (GMT -6)   
Hi Friends. I know that I don't write much but I do read the messages posted everyday. I am just so frustrated with having constant flare up of my symptoms. I start out with pain in my shoulders, fingers, & knees then I progress to pericarditis within a few days later. Since my dad died in December I have had to have a medrol dose pack at least once a month. I just finished one a week ago & the same pain is back again. I just called the doctor and he prescribed another steroid dose pack but moved my appointment up to Thursday of next week. We are going to discuss adding a different medication to get things under better control. I am currently on 600 mg of plaquinel, colchicine 0.6mg twice aday, 5 mg prednisalone, 10mg flexeril, propranolol 80mg 2 x day,furosemide 40mg,& potassium chloride er 20 meq. 
I used to take nothing until a year & a half ago when I ended up in intensive care with a large pleural effusion. Also about a month ago I was at my daughters softball game & I had on black jean type capris. The sun was burning me through the material & by the time I got home  I had several water filled blisters on my legs. The sun burned me through the jeans. We have a big pool in our yard & most of the time I am afraid to get in it because of the sun & our home is in a lakefront subdivision but I don't go out in the boat our even swim with the family because I am too sun sensitive.
I think the most scary thing of all is I have this disease & no medical insurance. Most of the time I stay positive & look at the blessings I do have but once in a while things seem so out of control like today my daughter had cheer camp  from 8 to 12 & for the first time I couldn't stay there. It was on a hot football field with no shade. I hate missing out on these things in her life & not being there like the other moms. Thanks for reading & letting me unload a few of my cares & thoughts. It is nice to have a forum with people who understand.

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 6/18/2007 7:13 PM (GMT -6)   
Vanae, We do understand. I'm so sorry you're having to go through this, and believe me, it does get so overwhelming sometimes, especially not knowing whether or not there's an end in sight. It saddens me to hear that you lost your father a few months ago. Emotional stress can take such a toll on your health, not to mention the pain of having to grieve such a difficult loss. I lost my dad 11 months ago and my mother a few months prior to that and I went into bad flares after both of their deaths.

The burn you got on your legs sounds excrutiating. We talk alot here about having to miss out on so many of kids' activities because either we don't feel up to joining them, or because we have to avoid being in the sun. How do you handle your disease with no health insurance? Are you aware that some states offer insurance policies for those of us who have been turned down by two or more private insurance companies? That is what I have and believe me, I pay through the nose for it but am happy that it's available.

It's great that you are able to stay positive most of the time and to see the blessings you have in your life, but none of us is strong enough to stay "up" all the time and that's one of the great benefits of this forum. It's a safe place to come for information, but also to scream in frustration when things get to you. I'm glad you felt safe enough to come here and vent. Join us more often. We understand and we'll always try to be there for you.

Come back again! I hope that tomorrow will be a better day for you.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/18/2007 8:35 PM (GMT -6)   
vanae, I'm so sorry about everything that you've been through and that you continue to have flares. Like Pat said, we really do understand the frustrations and how hard it is both physically and emotionally to live with this disease. I get very frustrated and sad when I have to miss out on my kids activities and also that I cannot do so many of the things I used to enjoy.

My heart goes out to you. Like Pat said, we are always here for you anytime you need support. I hope that your rheumy can figure out a new med that might help control things better and end this cycle of flares. If it's a very expensive med, there are some good resources in the "Lupus Resources" section here about help with prescriptions for those with no insurance.

Hang in there and let us know how the rheumy appointment goes.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 6/19/2007 5:38 AM (GMT -6)   

Vanae I am sorry you are going through this. I have problems with the sun and it makes me so angry, I love being outside and in the summer time it almost kills me to have to stay in to avoid the sun. I plaster myself with suntan lotion now, strength 60, after being badly burnt a couple of months ago.  I refuse to sit inside and not be outside enjoying the nice weather. Winter is way to long for me to stay inside this time of year.

I hope you can find an answer to your problems with the sun. I hope your daughter understood why you had to miss her cheer practise. How old is she?

Take care,


diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Forum Moderator

Date Joined Jun 2006
Total Posts : 1533
   Posted 6/19/2007 8:02 AM (GMT -6)   
Hi Vanae.  I'm so sorry that you're having flares cycles.  I'm currently in the same situation and like everyone else I hate prednisone.  Sometimes it's such a big help to just come here and vent.  There's almost always someone who has been there and everyone gives such great advice and support.  My daughter is 22, but I still remember how disappointed and angry kids can get when you have to miss an event.  Anyway, I use lots of sunscreen and wear UV clothes and hats when outdoors.  Unfortunately the UV clothes are expensive, but in the bump re UV clothes several lupies use an additive made by RIT that provides protection.  Well, here's to us breaking the flare cycle!! ((hugs)) 

Dx: SLE diagnosed in 2005, major depressive disorder, diabetes, fibromyalgia, asthma, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone 10mg, flexeril, prozac, lamectil, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, advair, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax, albuterol
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna

Regular Member

Date Joined May 2006
Total Posts : 236
   Posted 6/19/2007 10:22 AM (GMT -6)   
Vanae: Glad to hear from you. I have a hard time with worrying that my lack of insurance will cause me to not get better. Love my kids and feel horrible that I can't be a "normal" mom and have to limit their activities because mine are limited. More afraid that I won't be there for them because I can't get the medical help I need and don't feel I can demand. (Thank you for the information on "Lupus Resources" Hippimom - I'll check it out). Still through all this, I can't help but feel truly blessed. I am here, I have the most beautiful children, I sort of have a job- a great one at that, many interests, on and on. There are just so many emotions to deal with I guess. It is like living on both sides of a double-edged sword.

Sorry to hear about the boils. My daughter gets those small ones from time to time. Suprised the sun went through the jeans like that. Sun just makes me rash and get sick. Doesn't matter what I do to cover up, I learned there is just no way I can go in the sun. Have to have shade - no other option. I have heard of the RIT before and I was told it worked good. I believe 2 friends have used it and have had great results. I don't know how affordable it is.

Funny how as moms our needs are last, but when it comes to health we need to come first because everyone in the family depends on us. When I get sick and can't function, it occurs to me that I'm the backbone of the family. They would survive I'm sure, but what a mess it would be!

Kristin, I edited your post to remove your signature. It is recommended that signatures be 10 or fewer lines. This saves space as wear and tear on the server. Thanks.

Post Edited By Moderator (Lynnwood) : 6/19/2007 9:48:23 AM (GMT-6)

Regular Member

Date Joined Apr 2006
Total Posts : 46
   Posted 6/19/2007 1:27 PM (GMT -6)   

Thank you to everyone who responded. My daughter is 11 years old. She came into our lives as a drug addicted baby when she was 5 weeks old. We loved her through her withdrawals from drugs & she has turned out to be one of my lifes most greatest joys. Years before she was born I prayed for a little girl named Vanae{{after my middle name}. This was a prayer of my heart even though I knew that my husband had a vasectomy. I just never knew that I would end up being a foster parent & have the wonderful opportunity to adopt. I do have a birth son who is 25 and a step daughter who is 38. My husband is 19 years older than me & we have been married since I was 18 almost 27 years ago!

Anyway I wanted to say it is amazing how much one day of the steroid dose pack can make you feel halfway normal again. I am in a much better state of mind today. It is great to have people here who understand the ups and downs of this disease. I do get my meds through the mail when I can & that helps but the doctor visit is usually over 400 dollars a visit & lately that has been every 10 weeks or less. I am just thankful that so far we have been able to handle it. It's the 12 thousand dollar hospital bill that I hate. I just make them a faithful payment every month & leave it at that. So far, so good! I might get it paid off someday.

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