NRAS
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Introduction

Hi everyone, I’m Deb from Australia. I’m here because we really don’t have any frequented forums in OZ, and I find FB pages a bit random and depressing.

So, I’m 61yo, and until recently I worked for Bunnings in OZ. A job I loved, but pounding around on concrete, wearing steel caps, and putting stock away was never going to work for me, as my RA mainly affects my feet and hands.

This is the start of my retirement/unemployment:)

I currently take Plaquenil (I’m allergic to Sufasalazine). Due to a dodgy chest X-ray, a decision hasn’t been made on the dreaded Methotraxate - still awaiting results of CT scan. Can’t say that I’m fussed about using Methotextrate anyway.

I was in our public system, but they were doing my head in, so I’ve a private appt at the end of April.

I feel that my RA is possibly quite mild, so I’m curious about people’s thoughts on using Plaquenil and very low dose Pred. My biggest problem is fatigue - I can pretty much cope with the rest.

Nice to join here and meet you all, cheers :)

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Hello and welcome I find methotrexate good in injection form I do feel rubbish for a few days after I suffer with feet hands and back I’ve only been diagnosed a year ago 😊

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Good day Debs and welcome to this forum

My main problem is fatigue. I asked my consultant a while ago whether the fatigue will ever go. Their answer was it’s a million dollar question and didn’t have an answer.

Hope you are sorted fast and find an answer.

I have family living in Australia. I live in the Uk. May one day visit Australia.

Matilda

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Hi Deb, I've been diagnosed last November. I'm in mtx now, I was in arava before and I can totally relate because the fatigue is terrible... especially because I cannot find it any logic as to why it gets worse one day or better another one. Apparently is just part of the RA. Cheers!

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Hi,

And welcome...I am in the US,sad,I know.

I use plaquenil for Lupus,mild case,no determined reason,meaning not in my kidneys,lungs,nervous system etc.Predisone I had taken in the very beginning.It is,was bad for my body,but did help.I was on 60 mgs a day for 6 months,then tapered off.I have it on hand in case I flare,but I do avoid it,but we can not at times.It does make my body feel worse after awhile on it.Moon face,just a blah feeling.

I have been using Plaquenil for 5 years now because of joint pains in my hands feet, and that dreaded fatigue.It does help because I tried stopping it and had worse pain.I take two 200 a day.

I asked about RA but it has been ruled out via 18 draws of blood .I do suffer so,anyways,

.I can not take Nsaids because of tummy pains if I do take them.

Have recently {8 months now ]started on Probiotics which are helping as our immune system is so closely related to our tummy,and it does help,but the best thing I have started is "ginger " tea.I take a 3 inch piece of it,organic,slice it,add an eighth of a teaspoon of organic sea salt,and a dollop of raw organic honey,boil a cup of water and pour it onto the " tea " and wait for the cool down. I drink a cup divided through out the day and night and boy does it help with the inflammation!!!! I was gleefully surprised!I sleep better now,and my fatigue,which was a huge problem,is almost gone now!And oh....vitamin D3.I take 3 per week,5,000iu,which is helping also.My vitamin reading said my level was 43,and 40 is considered low.

I may also mention organic.Everything I eat is .Milk,chicken,veggies,fruits etc.And no Gluten!

Only food or drink which has something my body can utilize and promote wellness is all I eat or drink.Lots of Poland spring water,lots,which keeps me hydrated,supplies needed minerals,and I urinate more often to rid the bad things our body reacts to,like plaqunel.No more greasy french fries or Wendys since I have been diagnosed.Also Omega 3.Real milk products ,grassfed contain omegas. Pure coconut oil,I ingest,too,with lots of omegas in it.So what I consume is directed towards feeling better.It took a while,but it all has helped a very lot.I researched and researched about my disease and what I can do to help my situation besides what my MD gives me.He,my Rheumy told me I have to help myself,too.They hardly know anything about it because it is so complex.Ra and Lupus is related closely.France has developed a peptid,and a treatment called Lupuzor P140,in stage 3 trials and has been fast tracked here in the US.It is a peptid,so no bad side effects,no bad drug in our system.It should be ready to be on market soon.It treats Ra,too,and they intend to model it to help treat cancer,related immune system problems,the list goes on.Can not wait until it is available!!!!

I know we all are dif,so see what fits you.It has almost rid my fatigue.Getting 8 plus hours of sleep is soooo important,too.I use medical marijuana to combat my lack of sleep I used to have,and it works!!

So stay informed,and read.My MD is right,I must mitigate when I can.

Also,as you know,here in the US we use private doctors....some are good,some are bad.Find the one who fits you!!!

love dunk xx

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.

Bingo, Dunk! 👍👍 Don’t know if you’ve already heard of Dr. Brooke Goldner 👩🏻‍⚕️ ( healthunlocked.com/cure-art... ), but her work with Lupus & Autoimmune illness might interest you? 🤔

.

Ditto, YanniBaci/ ‘Deb from Australia’ 🇦🇺 . ☺️ 👍

If such things interest you, kindly pop over & have a look-see 👀 .

While disease is ‘active’, your body is busy at work — around the clock 🕐 🕕 🕙 (24/7) — "fighting" 😖🥊🥊 the disease.

In other words (in perhaps over simple terms), your body’s in ‘overdrive’ wrestling 🤼‍♀️ with inflammation 🔥, so you’re going to be thoroughly, utterly exhausted. 🤤

(It’s not ‘lack of willpower’ or ‘laziness’ or whatever ‘label’ uninformed onlookers may mistakenly slap on to the debilitating exhaustion. 😵 )

It’s your body relentlessly, tirelessly, heroically, fighting 👊👊 a mighty foe 🐉 — keeping you alive. 🤯

So, until that inflammation/ disease dissipates/ subdues, you’ll likely continue to be chronically exhausted/ fatigued. 😴 🤤 😵

Please 🙏 , kindly try to take as a good a care of yourself as you possibly can, YanniBaci/ Deb, to subdue ‘the beast’ 🐲🐉 .

Wishing you both, Dunk & Deb, the very best. 😌 🙏 🍀 🌺 🌞

.

[Oh . . . if this helps at all in grasping the nature/ depth of the fatigue/ exhaustion, “The Spoon Theory" 🥄 ( healthunlocked.com/nras/pos... ) sometimes does the trick 🤹‍♀️ .]

.

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Hi and welcome to this wonderful site. I am on MTX tablets 20 mg. I was on the injection until a few weeks ago but suddenly got a fear of them so had to come off. The fatigue is never ending! You have to give in and sleep no matter what you are doing. I take steroids of 2.5mg as have tried to stop it but was in to much Iain. I also take hydrochloride and leflumamid. I was in remission up to a month ago and you will get there too. The fatigue does leave you for a little while. This is a good site and you can ask anything and someone will have an answer for you. I am from the UK.

Take care.

Carol X

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Thank you all for your very warm welcome. I think you’re so lucky to have the NRAS site, it’s very informative and thorough! I find that our resources here are nowhere near as good, and I’ve diplomatically pointed our RA folk in your direction, in the hope they might improve ours :)

I shall continue to research and read, cheers

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Hi and welcome to the forum you never wanted to join. Jam packed full of lovely, informed, compassionate people who know what it's like. Don't forget, though, that the majority here are either newbies or those having problems. Everyone else is far to busy getting on with leading their lives. This forum has been a lifeline for me and hope you get as much from it as me. Hugs

J

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Yes nice to meet u 2 its lovely on here, I'm sure you will get answers as we in same boat just different stages of meds it's a long rough ride but it's nice to know your not on your own !!!!!😍

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Another welcome. This is a wonderful site and I have found a great deal of comfort in finding out that all the things that I thought I moaned about just because I feel old and grumpy, everyone else feels the same, don't know why it helps so much but it does.

The fatigue thing seems to be a constant for me too, on a good day I'll last til 4 or 5 in the afternoon before I just liquidate into a blob on the sofa, on a bad day I just don't really get going. Just another annoying thing about RA as you can be having a good day as far as pain and stiffness goes but the fatigue will kick in anyway. Be easy on yourself, Kathy

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