Methotrexate

[Nickylou4]

Hi all

i am new to this website and have been reading other peoples entries and thought i may get some advice for myself. I was diagnosed in April this year with RA. for the last 10 weeks roughly i have been on Methotrexate injections. Yesterday my dose was increased to 20mg and i am feeling really rough from it. I have a vile taste in my mouth and its very dry and not feeling fresh shall we say. My mouth is pickled with sores and spots on my tongue too. I feel so nauseous and i have a stinking migraine The pain in my hands and feet has got really bad too. I just feel like crying.

I have a husband and 4 kids and i think they are getting really fed up of me not being able to do things around the house and function properly, although they havent actually said this. I was led to believe that by week 12 of my treatment i would be feeling almost normal again.

I still need my crutches when i walk anywhere for safety reasons mainly as my legs give out on me. I also wear splints on both hands to offer me some support as my wrists are so weak and i also have odema gloves which are pants if you ask me...........please someone tell me it gets better

[Gina_K]

Hi Nicky,

It will get better, but maybe you will need different meds, when you get your bloods tested hopefully your inflammation levels will decrease.

Talk to your GP & Rheum Consultant re pain control, maybe in my opinion, while your waiting for correct combination of Dmards some prednesilone (steroids) might help as a bridge. I know they really helped me when I was at your stage.

i would encourage you to show your hubs, some info on RA. Also, with 4 kids you may need to get some help. Most people who are working full time need to cut down on hours. I personally think there is no more difficult job than being a mum, and I have done both worked & had kids, take it from me work was a break!!!

My heart goes out to you, what with the fatigue it must be so hard for you. Mine were over 18 when I was diagnosed and it was still crap!

Nicky believe me it will get better, how long that will take is difficult to say, I am only saying that because thats what my Consultant told me, and it was true, 3 years down the road, I still have RA, but manage my job sharing job, and hse & home. You will hear a lot about pacing, well i won't go on.

It is early days for you & a lot to take on board, I guess you just feel you could have your life back, I know thats how I felt, if only I could walk without pain, go shopping, plan things, well that did come back.

Be assertive about your treatment and keep going back to your healthcare providers, get second opinions if your not happy. Emphasise that you have 4 children and a life, most docs want to see you able to continue to function as well as possible, be persistant, you are not a nuisance, or a hypochondriac or an of the other negative things you may think. Despite what people think 'the meed do not inherit the earth' those who shout loudest get the best attention.

Stay safe & positive and remember you are still you! Control your disease don't let it control you.

x Gina.

ps. hope I was'nt waffling, I just feel so strongly for newbies! I was one alone once

[Nickylou4]

Hi Gina

thank you for the reply. I currently take 50mg of prednisolone a day as well as having the injection once a month to try and bring me out of this flare but so far it doesnt appear to do anything other than make me gain weight. The weight gain makes me depressed too, its like a big vicsious circle

MY hubby has read all the info on Ra but i dont think he actually understands how it makes me feel. I try so hard to behave like i normally would but find im functioning less and less. I went to Tesco the other day and they had no trolleys. I attempted to carry a basket with 2 splints on using one crutch. I fell over and couldnt get back up, i was mortified. By the time i got home i was soaked in sweat and crying as i was so tired. My hubby said he will go in future and people keep saying ask for help but im embarrassed!!

I used to be the life and soul and always doing things and now i just feel utterly miserable and depressed.....im trying to remain positive i really am and i am pushing my RA nurse too as i am still in pain but due to NICE guidelines i cant have any other meds until i have completed a course of 20mg MTX so i have 3 weeks to wait grrrrrrr.

Anyway thank you very much for replying to me xxxxxx

[sylvi]

nickilou4, don't give up my love, this disease is time consuming for you, as gina as said and keep on at the consultants and nurses. I did this year and due to my pressure i found out i also have fibromyalgia to go with the ra. At times i thought i was going crazy, i was in tears a lot of the time and i hate to say it, but there was times i wished i was dead.DON'T GIVE UP, you will get there. Its hard at the moment, like gina said get the info and show your family how bad it is. They probally don't know what to do and say to help you, as i'm sure they want to. It is embarissing when you have to have help. I'm just the same i hate asking for help, I have to have a scooter to get about, i hate that scooter, but i wouldn't be without it.

Hope you soon get some relieve soon.

Sylvia. xx

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I am hoping that your body will manage to adjust to that dose increase with time? x.. Im hoping the increased your folic acid dose also as it it can be safely taken every day except methotrexate day.. I

[PB1950]

Hi Nicky

I have been on Methotrexate for 3 Years I also get these nasty sores and ulcers in my mouth and on my tongue I found the best relieve for these was to use Corsodyl I hope this helps there is light at the end of the tunnel I am relatively free from pain except for the odd flare up

[Nickylou4]

Hi again all,

thank you so much for replying to my post - it is strangely comforting to hear i am not the only one suffering and to realise that others do understand. I have had my folic acid increased and take it everyday apart from injection day. I also use Corsodyl mouth wash but its useless.

I went to my friends house today and tried to explain to her how i feel and she said i should get my medication reviewed too as it isnt working properly anymore. Just getting ready and driving 10 mins down the road today wiped me out. When i got home i fell asleep for 2 hours lol!!!

Summer, sorry to hear you are having computer problems and hope you get it sorted soon. I did get leaflets sent to me by the NRAS and my hubby and one of my daughters have read it. I appreciate this must be hard for them too. Sometimes you cant help but feel hard done by though can you?

anyway, thanks again ladies for your responses it means a lot.

Nicky xxx

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Difflam mouth wash is better I dont rate corsodyl v well but we are all different!! also I use bonjela or anbesol liquid( they also do a gel) I use / recommend any of these three for mouth ulcers.. back to my earlier comment.. .. speak to your rhuem team for advice

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computer getting new hard drive soon.. its limping along still just!!