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Lupus

May 21, 2015 12:36 AM

Anyone take methotrexate? I was taking plaquenil but got an allergic reaction. Im nervous to take this new medication. Fairly new diagnosis. 25 years old female been trying to get a diagnosis since 17. Finally got diagnosed with SLE and sjogrens. I'm off meds right now besides prednisone and I'm having the worst flare. πŸ˜•πŸ˜¦

May 21, 2015 8:40 AM

I have SLE and have been taking Plaquenil with no real issues other than stomach upset. My sister in law has taken Methotrexate for several years and it has caused her to have hepititus. Please be careful with this drug. I'm sure some can take it with no issue at all. Good luck and God bless!

May 21, 2015 10:06 AM

Lala07, I'm sorry to hear about your flare up. I was just diagnosed in Sjogrens but I've had the symptoms for over 5 years. I'm on a lot of meds and my PCP just kept contributing my symptoms to the meds. He also brushed off the symptoms of hypothyroidism I've now got.
I'm to have an eye exam next week then my rheumy doc plans to put me on plaquenil. I have a huge list of various classes of med allergies, so I relate to your reluctance. I'm hoping it works for me. May I ask what side effects you had? I had to come off cymbalta because of them, but many on here have no trouble with it. My sister takes the methotrexate just fine. Blessings and prayers that you'll do just fine! πŸ™πŸŒΌ

May 21, 2015 10:25 AM

I'm sorry to be so acronym illiterate but what is SLE? I'm interested that you are having a dramatic flare on Predisone what kind of symptoms are flaring?

May 21, 2015 1:43 PM

My reaction to the plaquenil was hives. Every day in random spots. Random hours.
as for my flare now.. it's back spasms. .. hands and wrist pain. Locking. Hot to the touch.
And as always a skin rash on my joints. And fatigue.
I was on plaquenil and it was wonderful I was back to my normal self. Almost. I was on it for about 4 months but got taken off and just kept on prednisone. But a small dosage it's had to been bumped up since then.
Next medication choice was benlysta but insurance doesn't cover it so the other option was methotrexate.

May 21, 2015 8:44 PM

Thanks for letting me know about the hives. That's one of my predominant side effects but to the extreme. My first reaction I ever had was to morphine and I looked like a sunburned strawberry! Lol

I hope the methotrexate brings you relief and you don't have reactions to it. πŸ™πŸŒΌ

May 22, 2015 12:38 PM

Flappsy, I have to ask you a question... I have been reading alot about Lupus and I am so overwhelmed in trying to remember everything (between the fibro fog and all the other crap), My doctor wants me to have tests done for Lupus. Do you know what they consist of? Do they start off with blood tests? What others are usually needed to get a definitive diagnosis. I have nine out of the twelve most common symptoms and, although I was disturbed by that, I know that the other diseases that I have also have similar symptoms for which I also carry the majority for the disease. I'm a little unnerved because although the other things I have are bad enough, I'm scared to get that diagnosis of Lupus. Well, I have to do some more reading.. Please keep me in your prayers and I am going to keep my chin up and not get all entangled in what ifs..... I hope everyone has a peaceful and less painful day.

May 22, 2015 3:33 PM

AlwayZ, I can't really say what tests are done for lupus. My doctors haven't tested me for that because my symptoms fit more in line with MS, so the doctors say. Then the rheumy doc decided to biopsy the rash in my mouth, and due to findings of it and blood tests she said because I have sjogrens it opens the door for other autoimmune diseases to develop, like lupus. Sorry I can't help with the question. πŸ™πŸŒΌ

May 22, 2015 7:03 PM

Alwayz I hope your answer soon. It can be scary not knowing especially sick you have so many of the symptoms.

May 23, 2015 5:36 PM

Thanks Flappsy and Weezie... I guess I just have to be patient and keep faith in God that whatever is happening to me will be revealed in time. I guess one way or another, it really doesn't matter because there is no cure, only treatment. I just think that if they can nail it down as to what it is, then maybe they can find a reasonable treatment that is not too horrible and doesn't have too many negative side effects.

May 24, 2015 2:04 PM

My dad and a couple doctors think I might have Lupus, but I don't know.

May 24, 2015 2:25 PM

I hope you find out soon Ferretbandit, and you too AlwayZ. The unknown is a mental toll! πŸ™πŸŒΌ

May 25, 2015 10:32 AM

It sure is but at this point, I'm not sure if I even want to know.

May 25, 2015 1:16 PM

I know what you mean Alwayz it seems like we are all getting hit with new things all the time. I wish the weather here would straighten up so my back would stop hurting so bad it's staying between a 9-10 continously lately.

Jun 02, 2015 11:28 PM

I too have lupus (SLE), a very cruel disease that many ppl don't understand because we can look "fine" but not be fine! Methotrexate helps me a lot. The pills upset my stomach but the weekly, at home, injections work well! I Also take Plaquenil. You cannot stop taking your meds... I learned that the hard way!

Jun 03, 2015 4:35 AM

I am not sure if this is the case still. I don't know if the give the test or if the test just gives a false positive. But I know that one of the test in most cases, syphlis, comes back as a false positive. I have read that somewhere in I think a medline journal. But I don't know if that is one of the test they give.

Jun 03, 2015 9:43 AM

BlissBlessed, What injx are you taking and is it specifically for lupus? The reason I'm asking is I now have Sjogrens and have an eye exam Thursday. If it's OK I'm too start plaquenil. But if not she said it would be another med, not naming it. She also warned me that I could develop or already have other autoimmune diseases. Thanks! πŸ™πŸŒΌ

Jun 07, 2015 9:30 AM

I was on Plaquenil and methotrexate and my RA was SLIGHTLY better. My liver functions were taking a crap. Both drugs are hard on the liver. The Plaquenil can cause blindness and leave deposits in your eyes. Anyway thanks to being a girl....the combo caused so many vaginal and cervical infections really nasty that I stopped both meds. The pain in one area was worse than all of my joints flaring. The funny part to the story, looking back my piece of total shit rheumatologist would not write me anything for the vaginal infection even though she caused it. I do not have insurance so off to planned parenthood because they are 'cheaper' wrong $350.00 later yes infection taken care of. Seems government funding was cut to clinics. Just cannot catch a break. Not sure if this helped you at all. Everyone tolerates medicine differently. I am currently following the Wahls Protocol Diet (amazing book) and many of my symptoms are much better all over. If you have Netflix watch 'Forks over Knives the extended version and you will get it. We can heal ourselves with food. It is working. This was all stuff I knew I just did not follow it enough. American diet will kill you everytime.

Jun 07, 2015 10:22 AM

LMB, it's funny you said the American diet will kill us. My husband and I were watching a movie from the 1970s yesterday and I asked him what did he see different from today (a beach movie). He looked and said, "Everyone is slim & trim." I then asked him to tell me what has changed since then to change our weight. He said, "All you can eat buffets & excessive portions in restaurants.". I agreed, because those of us 40+ remember being raised to "Eat everything on your plate. There's a lot of hungry people out there and we shouldn't waste food" methods of raising kids.

Then I told him when we were kids we didn't have all this pre-processed foods, microwavable foods, genetically modified foods. We were raised on farmers market, fresh grown foods that we processed and froze to eat on year round. I believe the GMO foods, and additives to preserve foods, are a great cause of many medical conditions. We never heard of ADD, ADHD, Autism, or many other issues affecting the children & grandchildren of our generation, not when we were growing up.

My husband and I stopped eating canned foods as much as possible. At first it was to reduce my salt intake because of leg swelling, but then we realized caned foods today don't taste as good as our own canned or 70's-80's caned foods. We use to garden and put up our own vegetables but I can no longer do it with all the lifting, and he works all the time. We do buy and process some market foods but even some of those are GMOs. I agree with you that our foods are responsible 100%. πŸ™πŸŒΌ

Jun 07, 2015 3:46 PM

I do a primal diet, it's not as intense as paleo or the Wahls diet.
It's partially because of my grandmother's volunteering for La Leche League, but I've heard a lot about the benefits of breastfeeding, regardless of the parent's diet.
My grandpa has a garden in his 1/2 acre backyard, and I love it!
He has plums, pears, cherries, figs, apples, strawberry, raspberries, vine wine grapes (yellow, green, pink), tomatoes, pumpkins, corn, potatoes, asparagus, and herbs.
We have to race the birds because he doesn't use pesticides, but oddly it wouldn't be legal for him to advertise them as organic.
I'm really confused right now because of all the similarities between things like Lupus, CRPS, fibro, and a cluster of 30 or so other diagnoses.
I know my dad took pictures of the rash all over my body and especially face.
I'm hoping to get answers at the children's hospital later this month.
Has anyone else used lemon balm for nerve pain?
I have some in my backyard, and it's helping a lot.
T

Jun 07, 2015 4:24 PM

You're in my prayers ferretbandit. We're both waiting for answers and we will get through it together, all of us. Stay positive. (((Hugs)))!πŸ™πŸŒΌ

Jun 07, 2015 8:42 PM

You are on the right path! I have only used lemon balm in tea. I wish you all the best.

Jan 17, 2016 5:20 AM

How did everything turn out?

Jan 31, 2016 10:06 AM

I am in the process of being tested for Lupus now. So far it has consisted of just some blood tests. But we need those results before I find out the next step. Based on the sores I get all over the place, especially shoulders, chest, neck and face, my sister and I both believe it is at the very least Discoid Lupus but I also have many signs of Systemic Lupus. I will be 37 in March and have spent most of my life living with this pain silently. Most doctors treated me like a drug addict and med seeker. I finally found a Dr that is interested in getting to the bottom of this. We talked and determined I've had symptoms of an auto immune disease since I was 6 or 7. Now he's running these tests. My family and friends even often treat me like a drug addict and hypochondriac. It never ends. I'm embarrassed and ashamed to even admit to pain at this point yet it's so bad that many days getting out of bed is exceedingly difficult. Has anyone else experienced this? I guess part of me wonders if this pain is normal and I'm really just a wimp like they say. I don't know but I'm tired of hurting and being tired and struggling with no help and no end in sight.

Jan 31, 2016 10:14 AM

I think we have all been made to feel like we must be weak and it cant be that bad. I know i have and regularly fall back into that line of thinking even though its untrue.
No one but you knows how much pain you are in. You are not imagining it nor are you weak. I bet the ones that say that wouldn't last a day with the pain you are in.

Jan 31, 2016 10:28 AM

Ryley, you are certainly NOT a wimp. Being in pain each and every day can really put a damper on your life. If people don't have pain, they have a difficult time understanding what it's like for us. Know your limitations, take breaks when you need to and enjoy the things you love when you're having a decent day. I hurt if I'm not doing something I love so if I can function, I may as well do what I love and pay for it later. Everyone's journey is different. I've been going on for almost 23 years now. It is what it is. Sometimes I have to struggle to do stuff and some days it comes a tiny bit easier. I'm grateful for those times. But never let others make you feel ashamed of being in pain. You certainly didn't ask to be in pain and you sure didn't WANT to have to be tested for these diseases. Hang with us and be uplifted. We give hugs, advice when asked and we also make each other laugh. We're here for one another and we get it because we live it every day. I hope that your tests reveal what's going on with your body and I pray that it's something that can be remedied. {{{Hugs}}} πŸ’•πŸ™πŸ»πŸŒ»

Jan 31, 2016 10:43 AM

Thank you! I'm literally in tears reading this. I need that so very much right now. Thankfully my sisters (2 of them) and my husband are very supportive and understanding. But my kids have not joined those ranks yet and I think that's the hardest part. They don't understand why they have to help out so much. It's very difficult. I still have 5 at home ages 11 (almost 12) to 21 plus 3 that are grown and gone. But I used to be able to do more. When they were little I did everything. Now the house is literally falling down around me because they won't help and pick up the slack and I literally can't do it. Now it's so bad that even on good days I'm so overwhelmed by the whole thing that it is literally crippling and I can't do it. The whole thing is exhausting. I'm just now, for the first time ever, admitting how bad this has gotten and how horrible it makes me feel about everything and especially the homemaker in me that does everything for my family. I'm all about my kids. I had to give up homeschooling at Christmas because I can't do it. It's just a lot and it's taking a very heavy toll on my emotional health. I'm so depressed. I don't want to live like this.

Jan 31, 2016 10:52 AM

Well, I think maybe it's time for a quiet family dinner and a healthy chat as to why Mommy can't do everything and 12 is old enough to pick up after themselves. I wish that people could just get it but they can't. And it's not their fault. I have said to my Mom, think of the worst pain you've had in your life. And then I said imagine that it was like that every day, all day and it never goes away. That usually does it for a short time. Don't cry, Hun, I know it's hard. You're doing the best you can and you do have supportive family around you. Use that to your advantage talking to the kids. Now, I have to clarify that I don't have kids but I have 10 nieces and nephews and have watched each and every one of them. I love them and would step in front of a train for all of them but I'd be damned if I'd clean up after a 21 year old. I hope that doesn't sound harsh. I know you love your children and I hope I've not offended you. You really need to take care of YOU though. After all, they live there too. {{{Hugs}}}πŸ’•

Jan 31, 2016 6:19 PM

Oh I'm in complete agreement. Most certainly not ofendded. My children. Have special needs. Yes not one of them ... All of them. Not like they're in wheel chairs or anything. Just ... So my 21 year old is severely developmentally delayed and last year she was developmentally about 10-11. However, over the past year she has shot forward because she became our daughter last year. She is doing so well and is developmentally closer to 16 or so now. However, that's a lot of growing in 1 year and she's not quite caught up in all aspects as she hasn't had much for practice (ie cleaning). My son is ADHD & BiPolar and when he was younger he had a potential for schytzophrenia but have more recently felt that he didn't end up goiging in that direction. He is 15. My almost 14 year old has epilepsy. My almost 14 year old has severe psychological issues stemming from her father killing himself in front of her when she was 3 and she is also insanely gifted. My almost 12 year old has Epstein Barr Virus and chronic fatigue at her very young age. So, unfortunately we're not talking about normal kids. Btw I didn't even touch on the kids that are grown and gone. This means it is slightly more complicated than that. We've done many sit down come to Jesus talks. They just don't comprehend it yet. I'm their rock. They are struggling with me not being ok anymore. I was never like great all the time. But I used to have a lot less bad days. It seems the older I get the more often they come.

I'm hanging tuff. More than anyone realizes. My tears this morning were tears of relief. I am tired of feeling alone. I know I'm not but I feel like I am. If that makes any sense. It's not necessarily a bad thing to cry. Sometimes it is a relief!

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