Hello: It's been a while since I've been on , i have... - NRAS

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Emilia2012 profile image
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It's been a while since I've been on , i have had a bad flare and had to change my meds from oral methotrexate to injectable methotrexate and added sulfasalazine and hydroxychloroquine , they have also given me three seperate infusions at the hospital , I feel a little better altho my hands are still swollen and my inflammatory markers are still quite high , I'm just hoping it all goes to plan and they drop soon as I have been off work for two months I'm going back on Monday . But I am finding things are getting more,and more difficult every day , and the fatigue is getting so much worse , even daily chores feel like a gym workout , I sweat more than the guy on the right guard advert running through the desert . Has anyone got any tips to help with the fatigue . Hope everyone is doing well and having a good day .

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Emilia2012
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6 Replies

Poor you Emilia. I have no advice on sweats or fatigue as I suffer from neither - if anything I'm always freezing these days. Are you peri-menopausal by any chance? The Hydroxy usually takes the longest to work - I think it's 3 months. the Sulfa should work in about 3 or 4 weeks but sometimes longer I'm told. It sounds as if you might need to start on an anti-tnf soon - I hope they are assessing you for these now perhaps? Tilda xxx

sylvi profile image
sylvi

Emilia i will try again. It got wiped the last lot i did. Sweats could be menopause if your old enough. I sweat as i was taken of hrt at xmas as i had been on it for years. Fatigue is a killer for me. i am so tired all the time. I have been told to pace myself. Do a bit rest a bit do a bit more. I find it so hard. i want to go full pelt and my body won't let me. I sit in the garden doing repotting and other things,but it tires me out no end.

I have had infusions last year it was nice because then i had to rest. They won't up my mtx as i have problems with breathing. i take sulfa as well. I hope they soon manage to get you on an even keel. xxx

sciqueen profile image
sciqueen

Hi Emilia

What a lovely name.

I suffered from really severe fatigue and what help me was anti tnf. Since being on it, it has reduced considerably. I still however sweat profusely. Gp says that it is due to the disease & meds that I am on. Its not as bad in the winter as then I tend to feel really cold. Other than showering regularly and changing tops, I have no other advice, but you are not alone as many of us find it a problem.

ps I rarely wear makeup now, as by the time I get ready in the morning for work, my face/head is wet with sweat, that any attempt to put on make up, just slides of! So you can see I sympathesize entirely :(

Sci x

Emilia2012 profile image
Emilia2012

Thankyou for the replies , I also wear make up rarely , the last time I tried I went to a friends wedding reception and I looked like I had been thrown in a swimming pool about 5 mins of standing in the room , the main problem is that the disease takes over everything there is nothing I can now do without it being affected , my blood pressure was 80/46 this morning and they had to take it twice more to check I was actually alive , not sure what anti tnf could you please advise me a bit more as it sounds like it would be a great help . I must admit reading the blogs is what keeps me going as it reminds me that there are others like me . And it does make me chuckle which again is rarer these days , my hubby was the one who actually showed me the site and he has found the blogs useful in the way he can understand how I feel when I am having a bad day x

gazelleLOL profile image
gazelleLOL

I honestly believe the medication have this effect on some

of us, I am well past the change and these sweats are more

profuse than menopausal ones.

I get these sweats on and off, they ruin my life when it comes

to going out to events, so much so I do not go.

Stress can set them of so as I look like a tap left running!!

Some nights I wake up with my hair dripping.

At times a cup of tea can set them off, never have a cuppa in

front of strangers now.

Twice I was in a serious situation and it started, once at the vet

college when we had to rush my old dog there late one night.

Being forced from my bed so late meant I was stiff and in pain

then the sweats started. OMG, it was awful, my hair became

wringing wet and my face hot and sweaty. I think they may have been

more worried about me than my dog.

I had to use their tissues to mop up, going hot thinking about it.

BTW my dog was OK):)

You are not alone dear.

Ann

Emilia2012 profile image
Emilia2012

It means a lot to know I'm not on my own with this , I haven't been out anywhere social since that wedding reception , I am going to talk to my consultant about the anti tnf meds to help with the fatigue , and trying to relax as much as possible before I attempt to go back to work . As the last thing I want to do is go back then have to go off again.

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