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05/20/2013 03:38 AM

Just been diagnosed with rheumatoid arthritis

madwelsh
 
Posts: 8
New Member

Hi everyone, it is so nice to find this support group. I have just been diagnosed with rheumatoid arthritis after being in so much pain for a long time. I have had 3 hip operations and have had a lot of complications and now this but hey ho I know a lot of people are a lot worse off than me. I am on so much medication that i really scares me but i have to try it to get this horrible condition under control. I am a 56yr old female and am struggling with pain, tiredness and moodyness haha my poor familyDevil I have been warned about so many side effects and it is a bit overwhelming but its early days for me so any hints or tips from anyone would be great as i have a long way to go yet only just having been diagnosed.

I am on

salazopyrin 2x500mg twice a day

prednisolne x 2 a day for 2 mths

omeprazole 1x20mg a day

folic acid 1x5mg a day

methotrexate 6x2.5mg one day a week and have regular blood tests 2 weekly. Is this the sort of thing anyone else is on? thanks

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05/20/2013 02:39 PM
libyana
libyana  
Posts: 331
Member

Welcome mad welsh

Sorry it had to be under these circumstances .... You will find this to be an excellent sight for information, advice & of course a smile ..

I was finally diagnosed last Jan & am now taking Plaquenil Prednisone & folic acid with my wkly injection of Mtx & have finally reached a good place Smile I hear you about the fatigue it's the worst symptom I think .....

Anyway hope you start to see signs of change very soon

Gentle hugs

Libyana


05/21/2013 01:44 AM
madwelsh
 
Posts: 8
New Member

Thanks libyana, I have read a lot of information on this site and it's really helpful. I just want to get sorted and hope to get back to work. I work with mental health and it is a physical job and I am hopeing i will be fit enough to be able to do it again. Wondering how people cope with jobs with this condition.

05/25/2013 08:32 AM
Angelodious
Angelodious  
Posts: 117
Member

The meds ARE scary. I won't lie to you about that. I was so scared that I took myself off treatment last January. I shouldn't have done that because the RA only got worse and worse. But I'm back on treatment now because RA is much scarier than the side effects. It's kinda a horrible place to be when your choices are: Take this toxic medicine OR have horrible pain and possibly end up crippled, blind etc. I chose the medicine. I'm on all of those except the salazopyrin.

These aren't easy choices to make. Feeling stuck between a rock and a hard place, eh? Me too. I bet a lot of us do.

A lot of the people on this site have vast experience with RA and with the drugs that seem to slow it down. (Notice that I didn't say "treat."Wink

I haven't been very successful resuming full time nursing. I've missed so many days they were going to fire me so I went out on FMLA. I don't know what's going to happen from here and it frightens me. I've been a nurse for 26 years, soon to be 27 years. And I don't think I'm capable of being on my feet and being THAT active anymore. Sad


05/26/2013 01:38 AM
madwelsh
 
Posts: 8
New Member

Thanks Angelodious, it is really hard when you are just diagnosed.I just keep getting bombarded with meds and info and it is very worrying all the side effects of these. I like you have stopped taking the steroids for a few days to see what happens and the pain comes aback with a vengance!!

It must be very depressing the thought of not being able to work again, especially in a physical job like i have and you being a nurse. All i really want to know is will i be able to work again or not but guess i will have to wait and see how i am when this is under control.

I am having to go for blood tests every 2 weeks and see the nurse every month at the moment and i see the specialist again in july. I am being very well looked after so i have no complaints about that.

Just wondering if having ulcers in the mouth is a common side-effect 0n these meds, it is really sore.

I must admit the pain is a lot better at the moment but i have to learn to pace myself and not try and do everything in a day when i do feel a bit better as boy do you suffer the next day.

This is all new to me and i would appreciate any help from the ones that know lol.

The sun is shining and it is lovely and warm im sure that helps the joints, have a great day everyone Wink X


05/26/2013 07:40 PM
Angelodious
Angelodious  
Posts: 117
Member

I had ulcers in my mouth from methotrexate. That's about the time that I stopped treatment. My liver enzymes started creeping up too, although not horribly so. BUT I shouldn't have stopped treatment. I seriously regret that decision - job or no job, because THIS IS MY BODY! My only body! My only life. And all I did was get worse and worse very quickly.

My rheumy prescribed leucovorin to help stop stomatitis - or mouth ulcers. So far I haven't had a repeat of those ulcers. Keep your fingers crossed for me? Smile


06/01/2013 05:05 AM
madwelsh
 
Posts: 8
New Member

Hi again Angelodious. Going to see my nurse next week so will mention the ulcers. I had blood tests for the methotrexate the other day so should get my results next week and see if it's affecting my liver or any other of the meds.

I suppose it's a long drawn out thing at the beginning finding out what suits and what doesn't.

I am so lucky living in Wales as the perscriptions are free as i don't think i could afford £8.00 each a month. Are you in GB or another country, do you have to pay?


08/28/2013 08:30 AM
madwelsh
 
Posts: 8
New Member

Well I do seem to be settling down now, still got pains in hands and fingers, really think these are too damaged due to being on crutches so long. I am still on salazopryn 4x 500grms a day and on the top amount of methotrexate now 10x2.5mg every tuesday and am still on steroids every day but am now cutting back the steroids(with the nurses permission)to see if they are masking my symptoms,fingers crossed they are't.I can't complain at all about my specialist and my nurse they have been brilliant and I am so lucky not to have to pay for my treatment like you do in other countries. It is so sad that some of you are unable to go to your specialists, nurses and doctors because you have no insurance and not being able to afford your medication is terrible. I thank my lucky stars.I have 6 weeks before I see the nurse again so I wait with anticipation how I will be feeling then. Wish me luck, I am so hoping i don't flare up again!!!

08/28/2013 10:16 AM
grammoo
 
Posts: 851
Member

Madwelsh,I am in Wisconsin. It sounds like you are on the right track. I couldn't take the methotrexate, made me sick and I haven't heard of the salazopryn but will look it up. Have you tried the gloves for arthritis? They sell them on amazon. They help. Glad your doing better.

Hugs~Grammoo


08/28/2013 02:53 PM
madwelsh
 
Posts: 8
New Member

Hi Grammoo, curious what are you taking then? I know there are a lot of different meds for RA and they don't suit everyone, I am fine on methotrexate but I know it makes a lot of people sick.Will have a look on amazon, anything is worth a try.

Big welsh hug, Madwelsh.

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