Feeling frustrated: Hi everyone my name is Robin I live... - NRAS

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Feeling frustrated

Robinb profile image
35 Replies

Hi everyone my name is Robin I live in beautiful SW Florida 46 years old female who was diagnosed with RA PSA MS Fibromyalgia high blood pressure neuropathy and a list a mile long if other related symptoms. Feeling very frustrated having allot of side effects from all the meds I'm in. Recently I got switched back from injectable Methotrexate to oral I have now been developing mouth sites in the roof of my mouth swollen and very sore right glands and extreme exhaustion . I was wondering if anyone who takes Methotrexate has experienced these symptoms . Frustrated don't know if it's that drug doing it or another drug or if I'm just getting sick ugh!!! Any feedback would be greatly appreciated. Thank you.

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Robinb
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35 Replies

Welcome to the site Robin. How much folic acid do you take?

Robinb profile image
Robinb in reply to

Thank you so much. I take a small dose everyday except the day I don't take methotrexate. I forgot the mg .

Robinb profile image
Robinb

I believe mine is 5 mg. Yes I will be calling him first thing the morning. I also just got a flu and phuenmonia shot two weeks ago

in reply to Robinb

How come you switched from injecting mtx to oral?

Robinb profile image
Robinb in reply to

New Rheumatologist take I sections 3 times a week for my MS. Started getting allot of pits and muscle atrophy from so may injections per week even though I was rotating different areas

in reply to Robinb

MS is awful. I had ms from 1990 to 1997 before the meds were invented. I was lucky that it "just went away" . What type do you have? How long have you had MS?

Robinb profile image
Robinb in reply to

Was diagnosed in 2014 I now have secondary progressive . My father had it also

in reply to Robinb

I'm glad there are meds available for MS now.

I was 23 when MS reared it's ugly head. I still fear it, as it can come back eventhough it's been almost 20 years since it went away.

I was diagnosed with RA in 2014. I was stuned, but kind of thankful because my kids were grown.

Robinb profile image
Robinb in reply to

Yes I'm glad there are a lot more meds out there for MS. Tbwy definitely have come along way. Unfortunately my body seems to reject allot of them . This is the 5th one I am trying

in reply to Robinb

I hope it works for you.

Robinb profile image
Robinb in reply to

Awe..Thank you so much. I wish you the best. As well and hope you find some relief 😊

It's 11 pm here, so it must be about 2 am where you live. I guessing you have insomnia? This is a UK site, so the majority of the good people of this group are still sleeping. You shall have a lot more responses in a couple of hours. We are so lucky that the Brits welcome us North Americans :)

Robinb profile image
Robinb in reply to

Oh wow! Had no idea yes it's 2:17 in Florida. Yes I insomnia is a huge problem with me .

Robinb profile image
Robinb in reply to Robinb

How is the weather there?

in reply to Robinb

Snowing like crazy here, probly hot where you are :)

Robinb profile image
Robinb in reply to

Yes right now it is around 70 degrees high was 85 today

Karensy profile image
Karensy in reply to Robinb

Insomnia is a big issue...

helixhelix profile image
helixhelix in reply to

We're just getting up...7am in UK and I'm in France so 8.00am

Robinb profile image
Robinb in reply to helixhelix

Oh wow! Yes I would say there is a huge time difference. Well good morning 😊

in reply to helixhelix

Good morning Helix. I'm off to bed soon, though I am hearing water pouring down my chimney....going to have to wakeup my hubby to investagate this water.....

Robinb profile image
Robinb in reply to

Oh no hope it's nothing to serious!

helixhelix profile image
helixhelix in reply to

Front page of newspaper this morning is about bad storms in Ontario....

Robinb profile image
Robinb in reply to helixhelix

Oh no that's never good.

in reply to Robinb

Everything is OK, thank God. Crazy freak storm here. Hubby says he needs to change the flashings tomorrow on the roof.

in reply to helixhelix

Yes, Ontario in the winter is crazy cold. British Columbia's lowermainland has mild weather, excluding today... lol.,. we get the snow every 5 years or so. BC is about 4000 miles from Ontario. I think you live closer to Ontario than me :)

helixhelix profile image
helixhelix in reply to

😀😀

Robinb profile image
Robinb in reply to

Wow! That is very interesting facts I did not know. Thanks for sharing that. And yes I think I am closet lol 😊

helixhelix profile image
helixhelix

I got bad mouth ulcers from oral methotrexate, which completely stopped when I switched to injections. And it's such a small needle that's only sub-cutaneous seems remarkable that it's causimg muscle atrophy - can you ask your rheumy if there are other options. Mouth ulcers are a pain!

Robinb profile image
Robinb in reply to helixhelix

Well I also take 3 other injections per week for my MS so maybe the combination of all the injections caused it. Yes I will def be calling my Rhuemotoligist tomorrow to discuss. My mouth and glands are so painful right now can barely eat or swallow

helixhelix profile image
helixhelix in reply to Robinb

I found rinsing with salt water, and sucking sugar free throat lozenges that had antiseptic in them really helped.

Robinb profile image
Robinb in reply to helixhelix

Thank you for those tips. I will definitely look into trying that 😊

Welcome to our friendly corner of the internet, Robin. Firstly, you are one brave lady for facing all the health problems that you do. Secondly, you have such a pretty eye colour. Thirdly, I'm very jealous of you living in the sunshine state while I live in England which is mostly grey and cloudy.

I get a very swollen roof of mouth and my dentist told me that it could be a sinus infection or allergies. She also suggested various medications. My doctor wasn't much use, so I would recommend that you see a dentist if you can. I don't know if you can get these in the US but I used to have steroid meltlets which you pressed against each ulcer and they were really good. Please do get checked out by a doctor for the swollen glands. If you're on lots of meds that suppress the immune system, you may have an infection.

Take care. :)

Robinb profile image
Robinb in reply to

Good morning too you . Thank you so much for your kind words and compliments. I also am sorry that you are dealing with this too it really sucks. I am in steroids for my psoriatic arthritis but having issues with them now too and I woke up from maybe 2 hours of sleep in so much pain I can barely swallow.and my mouth is so sore. I left a message with my primary and Rhumetolofist this morning. I never thought about seeing a dentist for the ulcers in my mouth and those tablets hmmm might have to check them out. Thank you for that great piece of advice. Oh by the way I'm jealous of where you live lol I have always wanted to take a trip over there maybe someday I will😊 Have a blessed and pain free day 😊

popsmith1874 profile image
popsmith1874

Hi Robin and welcome, sorry that your not feeling the best right now but keep chin up as things will get better , I'm suffering quite a lot off fatigue right now and have had a heavy cold for 2 weeks which won't shift , I have RA,OA and Angina I'm on mtx injections and Benepali inj (Bisomar) plus other meds, I get ulcers from time to time and they are a pain, hope you feel better soon xxx

Robinb profile image
Robinb in reply to popsmith1874

Good morning Thank you very much and I sure hope you feel better as well. Having a lot of pain in mouth and hurts really bad to swallow left message with my primary and Rhumetolofist this morning so we will see what they want to do 😊

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