2nd bout of MTX

[BossyB]

I had my second bout of MTX last night and feeling pretty lousy at the moment. Not sure if this is due the the RA or the meds. Felt quite bad yesterday prior to taking MTX relly drained with pain in wrist, Thumb and knee. As i am still quite new to this disease, can anyone advise what we mean fully by "flare up". The reason i am asking is that when I was diagnosed it was in pain in most of my joints but at times my hands and wrists would swell up causing a lot of pain. I have had 2nd steriod injection 5 weeks ago and the pain subsided everywhere but is now returning. I have not had the sudden swelling for a while but have got constant pain and heat in various areas. What i am asking is without the sudden swelling, am I still having flare up?.

My Rheumy Doc only prescribed 10mg of MTX to start with but i am expecting to go upto 15 in two weeks at my next appt with Rheumy nurse. She did say i should have started on 15mg but went with what Doc stipulated.

I am still trying to get my head around this and i still think the Doctor is going to say you don't have RA. Could this happen?.

Also i find the fatigue one of the worst symptoms as it is very hard to explain to anyone how it feels. It is not that I want to sleep all the time, it is more of a constant draining of my body and no energy at all to the point where i don't feel i can concentrate on anything including driving my car. This is also affecting my work as well but my boss is very understanding and telling me to go home when i feel like this which was yesterday.

Am i imaginging this illness or is it real?.

[Ella32]

Hi

A flare-up is technically when your RA suddenly becomes more active, joints can swell, more pain, more tired etc... it can last 1 day or 4 weeks.

However personally i think it means... that you have a relativly quick negative change in how you are, pain, fatigue, smelling, heat in your joints etc... At 32 mine now last a few days, when i was 18 they lasted months! It really is individual.

I don't think you are imaging this illness, it can be frustrating as on a daily basis your symptoms change - sometimes it can make it hard for loved ones, other people you know, work and indeed yourself to understand.

Personally MXT didn't work for me and did make me feel grotty but some people have great results with it, make sure when you visit your Rhumy nurse that you are also on folic acid 5mg as this helps to reduce those sicky,low feelings of MXT.

Your Doc could say you don't have RA and indeed he could say in a few years your RA had burnt out or is in remission, so keep the hope, it is what gets you through, what matters is that you have it now and right now you need the treatment to make your symptoms better, worry about the 'what might happen' later and just concentrate on getting better now

Ella x

[rainie68]

Hi Debbie,

I am so sorry you are feeling lousy at the moment, like you I am so very new to all of this and your words exactly echo my thoughts and feelings.

I took my first dose of Methotrexate on Monday (7.5mg), I have had no side effects as of yet but next Monday I have to increase to 10mg. My dosage then has to continue increasing weekly by 2.5mg until I reach 20mg. I am also on Folic Acid 5mg daily (except metho day).

I was so nervous about taking my first Metho tablets that I dropped them onto the kitchen counter and two of them rolled off and down the side of the cooker leaving the remaining tablet doing it's own little twirly dance on the counter top!!! Panic set in (me) but hubby and son stayed calm and managed to put a knife down the side of the cooker and drag them out. By this time the family dog had also become interested in what was going on!!

I had a steroid injection (120mg) two weeks ago, for the first few days after I felt quite good and had energy owever this then wore of and the swelling and pain and stiffness returned.

Like you I think that I am in denial? I keep thinking that the Rheumatologist has got it wrong (even though they are highly trained and qualified) and that my blood results will come back completely clear.

On a positive note, my husband and I attended an Arthritis Educational Workshop yesterday put on by the Rheumatology Dept. It was really interesting, they explained about RA and other types of arthritis and we talked about pacing and goal setting. My husband said it was like sitting in a room full on identical me's as everyone talked about the same problems and aches and pains! He did however really surprise me in that he took it all in and came back with such a clear understanding of the illness and is now talking about our future and living with this illness in such a positive attitude (my attitude is still quite negative due to denial!!). We had such a long conversation about it last night and he is already talking about how he can make things easier around the house for me.I must admit, I am looking forward to next weeks session.

I really do hope you feel better in yourself soon and I am sending virtual HUGS to you. Please feel free to message me anytime if you want to compare notes etc

Lorraine

xxx

[BossyB]

Hi Lorraine

Thanks so much for your response you sound exactly like me. I am still trying to act and lead the same life I did 7 months ago but I can't which is the most frustrating thing. I have only been advised to take Folic acid once a week 2 days after my MTX so everyone must be different. Those workshops sound really useful, although my hubby is really good, i dont think he understands how I feel, it is not only the pain and daily things that i can't do anymore, it is about thinking how I will be long term and this is awful.

Anyway I am sure i will perk up in a few days. (Wish i could chop my left thumb off at the moment it is driving me mad!!)

Debbie

[Gina_K]

Hi Lorraine,

Great to hear your husband taking such an interest in understanding what is going on. Denial & anger are very common feelings when diagnosed with this illness/ condition. Sounds like you are getting good treatment and there really is no reason to think that with all the treatments for RA out there, that they won't get your RA under control with combination of meds.

I totally understand first time taking MTX, I was laughing about the dog and his interest, if only you knew. Anyway, I remember 3 years ago the first time I took it my pharmacist saying don't handle the tabs for any length of time 'yikes' 'why?@ he never said, I rememeb reading leaflets from front to back on everything, and driving myself mad. Now I don't I just bin them & I just follow the Consultants advice and am doing very well most of the time.

So good luck on this voyage, really if you had to pick a time in history to have RA either now or in the future is it!

Regards & hugs to you, Gina.

[Treesha in reply to Gina_K]

Oh Gina you made me laugh out loud about the pharmacist I threw my head back and laughed which resulted in a loud cracking sound coming from my neck, honestly some days I feel like a walking rice krispie I am all snap crackle and pop! X

[rainie68]

Debbie,

(sorry) but I laughed when I saw your comment about your thumb on your left hand. I have an equally obstinate left handed thumb. About two months ago it decided that it was not going to bend anymore however, every now and then it decides to change it's mind and bends to a 90 degree angle, stays in said postition for a few seconds and then pings back (you can actually hear it ping!!) (I now know that this is trigger thumb). It was quite funny to watch at first but really painfull, but now it is such a nuisance.

Hi Gina,

I currently read every piece of literature going and google everything, My husband tells me off for self diagnosing ( I think I have had every illness possible according to Mr Google!!) and to listen to the doctors advice.

As for my Dog (my source of comfort while everyone else is out of the house) I have decided that one of my goals is to teach him new tricks. I got this idea yesterday whilst attempting a crossword whilst sitting crouched up in the chair. I dropped my pen on the floor, called him over, pointed at the pen, said "Archie, get mummy's pen" and he did!!! Light Bulb moment, so I am now going to teach him how to do the clothes washing, cooking, ironing, changing beds etc.........I am trying to have a positive attitude that this may be achievable some time in the distant future!

Hugs

Lorraine

xxxxx.

[Hidden]

Debbie,I used to think exactly the same thoughts. Could they be mistaken etc.

In the end I had to accept the painful truth. I started on 7.5mg MTX and worked up to twenty mg weekly. I was very apprehensive at first but experienced no side effects at all since and have been on it 3 years now. I do take Hydroxychloroquine daily as well, a much less toxic drug and 5mg folic acid which seems to be controlling my RA. I initially had general and then joint steroid injections just to get me moving as I was almost helpless. My knees had to be drained twice. But now my x rays show no further joint damage and my muscle strength is back to normal. No more flares so far and I lead a normal life again. If I overdo anything a bit of rest and a couple of paracetamol do the trick. We regularly walk several miles. The important thing to remember is that nothing bad will happen quickly if you are having regular blood checks. The trends and patterns are a slow process and if the rheumy is not happy has plenty of time to stop ot change your medication if needed. The disease is far worse than the treatment. Methotrexate has a very good track record if taken correctly. I would never wish to go back to the days when my RA was at its worst with all the possible consequences of disability, pain and other life shortening effects. Everyone reacts differently to the medications available. I hope they find the right combination for you soon.

[Hidden]

Methotrexate it is common to start at 7.5MG or 10MG AS The starting dose

[julieporter]

Debbie

It can take up to 12 weeks for the MTX works so try and be patient(i know it's hard) My rhuemy also started me on a 10mg dose and i built up gradually so i think it's fairly common practice.Mention your pain when you see rhuemy nurse they may be able to precribe something until your MTX kicks in.

Really good news that you have a supportive husband - it really makes a difference.

You will learn to pace yourself but it's still very early days for you so don't be too hard on yourself.As for acceptance i've had RA for 7 years and i still don't think i'ts fully sunk in yet.

[soraya]

Hi Debbie i to have just had my second dose of MTX and i take folic acid the day after, like yourself i constantly feel am i imagining all this pain, but couldnt contemplate one day without painkillers, im 43 and only got told my diagnosis 4 weeks ago and its sero neg arthritis so you can imagine that put doubt into my mind as i didnt have the rheumatiod aspect in my bloods so i got intouch with arthritis care and they sent me lots of leaflets full of info and put my mind to rest, like you im tired all the time and in constant pain with wrists and feet and i have sciatica to add insult on top, they do say MTX take about 12 weeks to get any full affect some people notice within a week others alot longer so if you need an ear or want to compare the journey im here just drop me a line hugs Soraya x

[BossyB in reply to soraya]

Hi Soraya

After an awful weekend I am still feeling extremely fatigued, I keep going to sleep in the middle of the day and have no energy. Are you having the same effects as myself. I wonder if the folic acid is correct as i only take one tablet per week at the moment.

[soraya]

Hi Debbie yes i only take the one folic acid a week as well and exactly the same as you im trying to stop myself from dosing off in the afternoon although i think this is probably more to do with the arthur than meds alot of people ive spoke to do say its the pain and tiredness that gets them, the best advice i can give is the advice ive been given listen to your body and if it needs rest then rest, i know its not always easy busy lifestyles ect, and also like i said because your on the same journey as me at mo these meds are gona make you feel all sorts of things and your immune sytem is going to be lower than normal, at the mo i had a good day two days ago and as usual i went hell for leather with all the jobs i needed to do and yep you guessed it im now sufferring for it, i hope your ok and feeling a bit better sendding hugs soraya stay in touch x