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I forgot to mention that my rheumatologist up the dosage of methotrexate from 7.5 mg a week to 12.5 Mg a week. Instead of taking 3 2.5 mg tablets one day a week. She up it to 5 tablets one day a week. I guess we will see what happens.
I am feeling better today lower back and hips are almost back to normal. What ever normal is with Lupus? I guess the injections and the medication help.
I hope everyone is doing well!
Tiras
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"The Barefoot Gardener"
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Let's hope it works for you Tiras.
I must say I didn't get on at all well with Methotrexate but others say it is marvellous.
Let's hope it does the trick for you.
Good luck.
Crusee
XX
👣👣👣👣👣👣👣👣👣👣Crusee & Happytulip;
I've been taking methotrexate for 3 + years, other than feeling bad sometimes (not every time I take it) it's been ok.
With the flare up this week with hips and lower back. My doctor want to up the dosage.
I can't have many more side effects, I already have lost all body hair from shoulders down anyway.
It is strange (we'll probably not with lupus) but, lupus has not effected me from the neck up. No rashes on my face, no hair loss on my head, I might get a small spot on rare occasions but, that's it.
I know being in the sun effects it but, I WILL NOT LET LUPUS CONTROL MY LIFE! Here in the southeastern U.S. We have had a lot of sun and hot weather it is 98 degrees Fahrenheit here now! It is had to stay out of the sun when you live where the sun shines 95% of the time in the summer.
I'll just continue to put up with it and, do what I want to do, when I want to.
I hope y'all have a good evening.
Tiras
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"The Barefoot Gardener"
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Hi
I take 20mg of methotrexate and 50 mg if entanercept I don't really find a diff in side effects so hopefully you'll be good too. I find it amazing stuff.
I hope it improves things for you. Yeah, what IS normal for Lupus..!!
👣👣👣👣👣👣👣👣👣👣Crusee & Happytulip;
I've been taking methotrexate for 3 + years, other than feeling bad sometimes (not every time I take it) it's been ok.
With the flare up this week with hips and lower back. My doctor want to up the dosage.
I can't have many more side effects, I already have lost all body hair from shoulders down anyway.
It is strange (we'll probably not with lupus) but, lupus has not effected me from the neck up. No rashes on my face, no hair loss on my head, I might get a small spot on rare occasions but, that's it.
I know being in the sun effects it but, I WILL NOT LET LUPUS CONTROL MY LIFE! Here in the southeastern U.S. We have had a lot of sun and hot weather it is 98 degrees Fahrenheit here now! It is had to stay out of the sun when you live where the sun shines 95% of the time in the summer.
I'll just continue to put up with it and, do what I want to do, when I want to.
I hope y'all have a good evening.
Tiras
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"The Barefoot Gardener"
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Tiras,
So good to see the face behind the feet :-))
I hope this dosage will further lighten your pains. I only take Plaquenil (and Celebrex or Paracetamol when necessary) so I have no experience with Metho.
I keep asking myself when do doctors describe Biologicals in case of SLE or other CTDs. I feel those have the least side effects and give the best results.
Goor luck
👣👣👣👣👣👣👣👣👣👣Patricia;
I would also like to see faces of friends here as well. Thank you.
We will see if the increase helps, only time will tell.
Tiras
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"The Barefoot Gardener"
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Hi Tiras
Pleased to hear you have had some improvement. I have been on 22.5mg of mtx for some time (years). As you can see it's not helped my memory lol. It has been fine just causes insomnia so I take it in the mornings now. My life is near 'normal' most of the time, whatever normal is and I like you, I am determined to not let it stop me. I started a dog grooming course nearly a year ago. It's tiring and needs strength and stamina as well as remembering lots of breed cuts but I'm almost at the end and starting to think I can make a living from this hobby. It's always worth giving things a go.
Take care
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Hi Whathappend;
I have to admit that name pretty much fits all of us with Lupus.
Thank you on giving me info on what the medication done for and to you.
You are a good example of my mottos. Keep going.
"👣LIVE LIFE TO IT'S FULLEST👣"
"👣I WILL NOT LET LUPUS CONTROL MY LIFE👣"
Got a new one
"👣GO BAREFOOT, IT'S MY WAY OF LIFE👣"
Tiras
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"The Barefoot Gardener"
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Am vvv much relating to your post & discussion BFG 👍👍👍👍 because (although am not on metho), when I began adding daily Mycophenolate to my combined therapy daily treatment meds several years ago, myco DID THE TRICK on my chronic lower spine lumbar & sacral pain...which felt like a miracle (I'd been managing this pain for 20+ years with the help of my Pain Consultant...a series of his bilateral spinal facet joint denervations to all my lumbar & sacrum joints had mostly numbed this pain, but it could still breakthrough agonisingly and there was still a unhappy level of background pain). My lupus clinic tells me that the way daily myco has consistently kept my lower spine pain at bay over the past few years means that my version of lupus does play a part in my chronic spine pain. Lupus mainly affects synovial joints, and the only ones in the spine are the tip top cervical joint & the sacrum joints...and when lupus is troubling these synovial joints, the holistic view is that any connected/related joints & soft tissues can feel troubled too
SO, your mention of how metho is helping damp down your lower back & hip pain rings a bell with me: 👏👏👏👏HURRAH...myco is doing this for me too...I can now do stuff like go on a little trips with my husband without worrying constantly about my lower spine: it's been decades since I could do little trips without LOADS of agonising trouble...as you say: I WILL NOT LET LUPUS CONTROL MY LIFE! The seriousness of my daily meds could spook me, but they REALLY help me by greatly improving my quality of life 💃👍💃👍💃
🍀🍀🍀🍀 coco
PS another GRRRREAT photo: chilling out barefoot!
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Coco;
Thanks for all of your help. I have used some of your knowledge at doctors visits. I hate that a lot of the knowledge is from experience, and not just from research. You are as I am, if what I go throug can help someone else, then it is worth it.
Take care and have a good day!
Tiras
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"The Barefoot Gardener"
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What a lovely photo. So nice to see the face behind your posts 😃. I hope the increase helps you Tiras without more side effects, I have so much trouble with side effects , everything seems to make me so drowsy on top of the fatigue it's no fun 😫 I've recently started Hydroxy and that's no exception either! But Your positive attitude and Coco's has helped me so much, I say your mantra 'I will not let Lupus control my life' often...so thank you 👍🏼
All the best
Diane 🌺X
👣👣👣👣👣👣👣👣👣👣Diane:
Thank you for compliment. I also would like to see more face of my friends here.
I sometimes share more with you guys than I do my family ( like days I feel awful) I don't tell or show them how much at times, especially if there is something they want to do. As long as I can, I will not let my lupus stop family outing and get togethers. (When we do stuff I am the most comfortable, I'm 👣Barefoot👣)! LOL!
I also agree with you, Coco is wonderful and so much knowledge of lupus. She has done her research but, I bet like most of us it unfortunately a lot of it come froms experience also.
I do like that people are starting to use and practice my Mottos.
"I WILL NOT LET LUPUS CONTROL MY LIFE!"
"LIVE LIFE TO IT'S FULLEST!"
I think I need to start another one.
"GO 👣BAREFOOT👣 IT'S MY WAY OF LIFE!"
TIRAS
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"The Barefoot Gardener"
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Haha Tiras I would use your new motto if I lived somewhere warmer, I do like being barefoot especially when my feet are burning but alot of the time they are freezing , I have Raynauds 😞 Sadly it's not always very warm here on the coast of south east England 😕 ...
My Dad had Lupus too so it's obviously genetic and I often think of him and how he coped always with a smile on his face, he was 75 when he was diagnosed in the late '90's . I now recognise and have more understanding what he went through with it and all the drugs he had to take, I'm nowhere as poorly as he was, but like you he did his very best to ' live life to the fullest ' and always happiest when he had family round him, he used to do a lot of things over several days he would be busy but he always paid the price and would be floored for days and days afterwards, I always remember thinking why does he do so much, now I get it, on better days you want to make the most of them even though you know you might be floored afterwards. I think how nice it would've been to be going through it at the same time as him so we could compare notes but then again maybe not because back then I was well and able to help him and my darling mum who wasn't well herself, so I'm very thankful for that.🙂
Hope you're having a good day Tiras.
Diane🌺🌸x
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Diane;
Fortunately I do live in a warm climate. ( South eastern part of the US in the state of Alabama). It is supposed to be close to 100 degrees Fahrenheit here today, and for pretty much all the way throug next week. So going 👣Barefoot👣 Is really not an issue here. Last Christmas Day it was in the mid 80's here.
I have to admire your Dad, I know exactly how he felt. He did not let Lupus control his life, and done his best to make the family a enjoyable & fun time together. He must have been a great man! Your Mom to had to be wonderful also, I know what my wife does for me. It is not easy on our spouses.
I hope you have a good! Give your family my regards!
Tiras
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"The Barefoot Gardener"
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Thank you Tiras, yes he was very special to us and we are so lucky to have wonderful memories even when he was poorly he was always upbeat and the courage he showed then gives me courage now.
I'm lucky too to have a wonderful supportive husband, I agree it's not easy for them either, they're good eggs aren't they. 👏😃
Regards to you and yours too, til next time take care.
Diane🌺🍅xx
Questions about Disease Activity and Plaquenil dose
I think I should just swallow this UCTd diagnosis. I’m getting mixed messages from different doctors, 1 says mri was fine, other says not!!
Lupus and Trigeminal Neuralgia.
Horrendous visit to GP, seronegativity rears it's ugly head again!!!
Do doctors understand Lupus?
