scared to start methotrexate...

dazzler

Hi I have had psoriatic arthritis for around 8 years (35 now) and have managed to avoid taking methotrexate during this time. I have tried various nsaids and prednisolone during my initial acute phase of my disease with very little benefit. I managed to get a lot of my pain symptoms slowly (very slowly) under control with the use of antibiotic therapy and some excercise and sheer bl**dy determination. This disease has blighted every aspect of my life, relationships, work and leisure and i'm frankly so tired of it that its not funny. I have been offered methotrexate again by my rheumatologists and feel i am at a huge cross roads. I currently have relatively little joint involvement. I have neck and lower back ache with the neck problem causing occasional headaches and i have resdidual damage to my shoulders, feet and hands etc.
My problem is that the fatigue i suffer from seems to be out of all proportion to my other symptoms and i'm unsure whether methotrexate will lessen my fatigue? It sounds like it may cause fatigue among a host of other frankly hideous side effects. I have no idea what to do. I am very anxious.
Does anybody have any advice?

thanks

darren

elnafinn

Hi Darren

Welcome!

I do not have RA but I have been on this site for a good couple of years now and take a great interest in all types of arthritis and how people are going along and coping and the meds they take.

You sound as if you have definitely arrived at a decision making time.

Everyone is different and some really rate metho and others struggle with it or persevere and in the end it does suit them and gives them a much better quality of life.

I am not surprised that you are fatigued all the time. Pain makes one tired, fed up, unmotivated. You do sound p**ssed off and I for one don't blame you. I would be too. It affects every aspect of our life, when bad, as you rightly point out.

I know that if I felt like you I would go for the metho. If you do not try it, you will never know. There does not appear to be much option for you at the moment, if you really wish to try and alter how you feel and have felt for a long time.

This is a great site and you can ask away as many questions as you like. We all try to help as much as we can and if we cannot, we send over sympathy vibes. We all need those at times, sometimes heaps of them. It is a good place to unload how you feel too - we all understand that as well.

You can call the helpline (telephone number at top right of screen). They are a fantastic bunch of people, all suffering from some form of arthritis so you are immediately talking to someone who understands where you are coming from. You can also put any question to them on the helpline forum if you prefer to do it this in the first instance.

Let us know how you go on, hope to see you posting more in the near future.

Look after yourself,
Elna x

mylo

Hi Darren
I was diagnosed with RA last August and started on methotrexate 7.5 mg gradually increased to 20 mg in October. When I reached 20 mg, it felt such a huge turning point in that a lot of my swelling went down although it still hasn't gone completely - ankles, knees, shoulders, elbows, wrists. I felt sickly at first, but folic acid helps with that (I now take folic acid 6 days a week, not on mtx day).

I too was really reluctant to start mtx, but am now convinced that I benefit from it - I missed one dose in January because of a cold, when the swelling increased and the fatigue worsened. Sorry, difficult to say how the mtx has affected my fatigue, but I guess it must have helped. I'm certainly doing more exercise now than last year, but that may be because my joints are less swollen.

Have you contacted the helpline team?

Good luck with it (if you decide to go ahead) - I hope you get the benefits I've found.

Jane

suzster

try it!
i do methotrexate injections once a week now as i did find the side effects of the tablets hard to cope with, especially sickness as i have a toddler and and older child sp feeling sick wasn't an option!
any way, methertrexate has helped me alot, as for fatigue, i'm not sure.
i was very tired and had a huge lack of energy when i was diagnosed, it hasn't got worse but then i couldn't say for sure it's got better. i do feel less sleepy (apart from today when i could close my eyes and sleep now!) and i feel more positive but because i struggle like most people to get a good nights sleep, it's hard to know whether i feel fatigued because of meds, RA or just lack of sleep.
sorry i'm not a huge amount of help, but i kind of think if you are considering starting methertrexate then you are probably struggling with your symptoms, so maybe it's time to try it?
sue

dazzler

hello

thanks for your quick replies. I'm trying to assess what percentage of my life is affected by fatigue from the PA. I liked to imagine it was maybe 40% but now thinking about it more carefully i would say that its more like 80%. I'm fearful of over excercising (training was my thing) i'm scared to make decisions about my future for fear of not having the right energy or bringing on undue stress and not being able to cope. This is an awful way to go through life and i dont have the answer and i want to just be back to normal even if normal is dull. We cant have too much excitement can we

Can a drug like methotrexate really have the positive impact on my fatigue that i want? One of its side effects is fatigue? No?

I'm 35 and have been ill since i was 28 and it is so difficult to imagine the rest of my life in a constant tired, angry and worried state. Its not healthy is it? Besides from being ill thats just not good. Its impossible to come to terms with. Its unfair, its undeserved, its outrageous and its not easy to comprehend.

I know that at the moment i am ata low because i was doing relatively ok and the last few days have been tough.

Are there any other alternatives to methotrexate? If arthritis is so prevalent why isnt more known about it or done about it?

No real cure or acceptable treatment.

i'm cheesed off big style!

thanks

darren

kateby

I was on methotrexate for about 9 months for rheumatoid arthritis. When I started with the tablets it made very little difference to my symptoms. I then switched the injections once a week, which did give me some relief from the symptoms. However, I felt tired, nauseous and generally unwell the whole time I was on it. I also started developing a fear of needles, & my husband was struggling to give me the injection each week. I decided at that point it was not for me.

I then switched to Arava which worked for a while, & then added methotrexate once a week to this. This combination totally relived all my symptoms for a year, until just recently, and I didn't have any of the previous symptoms on the smaller dose of 10mg once a week.

elnafinn

Hi Darren

It is really coming through big time in your thread how angry, down, cheesed off, you are. Being in this frame of mind, will make you tired without anything else going on. You do need to find support through friends and discussion boards like this, your rheumy or speak with the helpline here. You need to talk, talk.

Metho may make you more fatigued but I was not aware this was always the case. There is only one way of finding out......

That is what arthritiscare is fighting/striving for daily, for more to be known and done about all the arthritic diseases.

Some people on here have been afflicted with this disease for years and years. I hope you are able to soon have some better days again. Arthur comes and goes in greater and lesser degrees and we often have to pace ourselves according.

It has been of great help to me to have found this site a couple of years ago and I try to put back every now and again what I have gained from it. I feel it is the very least I can do.

Chin up,
Elna

mylo

Hi Darren

If you have a look at the NRAS website (rheumatoid.org.uk) there is an article there "Fatigue in RA reflects pain, not disease activity" which says there is a small amount of data to suggest that conventional disease modifying drugs like methotrexate improve fatigue.

Methotrexate really has helped me ...

Jane

debsmartin

Hi Darren

I have found the methotrexate a big help, I too was scared about taking them but I'm really glad I did, it has really helped me with the pain.

debs

elnafinn

Actually if you google those words "fatigue in RA reflects pain, not disease activity" it makes quite interesting reading and quickly glancing at it, it seems to imply that fatigue is to do with pain and depression or that is how I understood it when reading bits and pieces and that fatigue falls with DMARD and anti-TNF therapy.

Elna

Wonkylegs

from personal experience having RA, where my main symptom has always been the severe fatigue rather than the pain, I would say that when I started methotrexate (MTX) I found that my fatigue was greatly reduced.

That doesnt' mean that I don't still get periods of fatigue when I get a flare, but that these are more managable and less often a problem.

I am afraid that so many of these meds need us to take them before we know how they will affect each of us.

All I can say is that in my case the MTX HAS had a positive effect on my RA.

hope that helps - good luck with whatever you decide.

frogmorton

HI Darren
A welcome from me.
So sorry to hear you are so exhausted. I do know the feeling, but for me it's only been a bit tired normally and a lot lot tired with a flare.
I am on plaquenil and so far (touch wood) it has worked for me.
I think though that if I was finding life as awful as you are at the moment, I wouyld have to try the MTX.
You sound utterly devastated and I can only liken it to when this first happened to me. Elna - remember? You had to keep talking to me all the time as did others on this forum.
I cried all day every day for at least a week.
My life was over wasn't it?
Luckily I have been pretty well since, so I can look back a bit more objectively and know it wasn't! :oops:
Anyway Darren - enough rattling from me - keep posting, keep talking, keep listening to others and you WILL know what to do for the best when the time is right for you.
Take care
Toni x

dazzler

hi

thanks for all your replies again. I'm actively seeking some counselling right now to help come to terms with all this. Its so wierd to be even writing this because if you'd met me last week you'd not have a clue i was suffering from anything. I was ticking along pretty nicely trying to deal with life and just managing the bits of back and neck pain even without pain killers. I still obviously have the spectre of fatigue looming about and causing some concern but i thought i was managing. My pain is still at a very low level. I know actually that even a small ache or pain over a long enough period gets a bit boring eh?

I'd even begun to seriously look at changing my career to become a teacher. Does anybody understand when i say that its so difficult to plan your life with a problem like this? What do you do? i feel robbed and that the real me is being wasted. I do still have positive stuff in my life but i'm not achieving the things that i want to.

Bit of a nightmare all this rheumatic stuff isnt it?

I'm probably too hard on myself too but i just want at least a chance to have a crack at seeing if i could be a good teacher and thats also part of the reason i'm reluctant to try something so potentially side effect heavy.

i'm also a bit concerned about one of the side effects which says it can cause birth defects. I dont even want to think what might be going on through my body if it can do that?

Secondly if this drug works and i do well on it and then want to have a baby i will have to stop and then i'm worried my symptoms would return at a time when i would need to be the most energetic and focused of all.

Answers on a postcard please

best regards

darren

lindalegs

Postcard coming up!!

Hi Darren

I hear all you say about Mtx and side effects and you're right to consider them but you're not just given the medication and forgotten about - your rheumy will monitor you closely with bloods once a month and the sign of any damage and the flags will go up. Many of us here suffered from nausea or headaches to begin with but more often than not these settle down as your system gets used to the drug.

Pain is very tiring, arthritis makes your tired as does depression and you could be wasting your young life avoiding a drug that could be helping you. You need to get to a better point in your life where the disease isn't controlling you but you're controlling it. When you decide to start a family and if they stop the Mtx or whatever you're on you will again be monitored.

Mtx (and other Dmards) also helps to prevent the damage that arthritis does to your joints - so that's something else to bear in mind.

I've had RA for 23 years and was 27 when I contracted it so I've lived with it for many years. We've all felt robbed of our physical life at some stage or another but that's all part of the acceptance period we have to go through - believe me we know just how you feel.

Times will get better than this but if there's something out there to help you take it with both hands - you need to enjoy your life once more.

Luv Legs

frogmorton

Hi Darren
Again its me :roll:
I did feel that I couldn't do anything for a while and was too scared to plan anything because of it, but now I do. Because who knows anything could happen to me. I have entered the race for life with my three kids and am hoping I''ll be ok and there...walking perhaps, but there.
I thought my husband would have HIS life ruined too because he has plans and a less able wife would hinder those plans.
Boy did I feel sorry for myself!!!
I think you should continue to look into teaching (you'd be good at it - nice and understanding), others on this forum have gone to uni/had babiesetc etc.
You can still do anything you want Darren.
Take life in your own hands - it might be a bit harder than some, but you CAN do it.
Take care
Toni x

dazzler

hello

Thanks again. I will sort this out for sure. When i was first diagnosed they thought i had cfs because i was super fatigued with no joint pain or skin involvment. It took about 6 months to get to the pain point and then a while after that to have psoriasis on my knuckles.

Even then it wasnt a straight forward diagnosis and i have been very badly let down by several health professionals in my opinion.

Analogy time...

I like boxing and i guess this is a 12 rounder and i need to lay on the ropes and soak up a bit of punishment somehow and come on strong in the middle to late rounds.

Hang on thats a bad analogy i prefer a knockout in the 1 st round but we arent all Muhammad Ali are we?

I'm just fed up with it.

I need a positive strategy here you are right. Counselling on the way (maybe) try the MTX and be less hard on myself.

Can anybody let me know if there are any alternatives to the MTX?
I've heard of Enbrel and Anti TNF stuff and dont know much about it.

Trying to relax now. I was in a panic earlier about this whole thing.

thanks

darren

livinglegend

There is a good article at http://www.guardian.co.uk/lifeandstyle/besttreatments/rheumatoid-arthritis-treatments-methotrexate

This explains about MTX and its side effects, which it states affect only 20%. So, for 80% positive results.

Joseph 8)

On a postcard as requested.

Joseph 8)

mistywillow

livinglegend wrote:

There is a good article at http://www.guardian.co.uk/lifeandstyle/besttreatments/rheumatoid-arthritis-treatments-methotrexate

This explains about MTX and its side effects, which it states affect only 20%. So, for 80% positive results.

Joseph 8)

On a postcard as requested.

Joseph 8)

Hi Darren
One thing i've learned to do to keep me sane is not to look into all the problems that might occur but to concentrate on the ones that are affecting me right now.(sort of short term goals) Some of the concerns that you have might never happen but right now you are fatigued and down and maybe it's best to try and get these aspects sorted and the rest may flow from there. Not everyone has the same side effects on drugs as we are all different but the manufacturers have to state any possible side effects. Don't give up on what you want to do, arthur changes your life but you can still have a good life despite it.
It helps to talk especially to others who have similar problems.
I am on methotrexate, and it has helped me and i have not noticed any increases in fatigue.
We are all different though as i have already said so best seek professional advice.
Take care of yourself and keep in touch with the site.

Gil x

msmungo

Hi Darren,

As a long term lurker here I was moved to post my first response because your message reminds me so much of me a while ago. I am 33 and have had RA since the age of 19. I started methotrexate at 21 and was very scared about potential side-effects.

For me it was the best thing I could have done, I have no real side-effects and it is the first drug that really made me feel better for more than just a few months at a time. My quality of life improved dramatically,I was able to finish uni and train as a teacher (best job in the world!) and I have worked full time since then. I do not notice fatigue being worse than before MTX and manage to cope if I am careful to balance rest and life!

I know it is very difficult to decide which course of treatment to take. It seems unfair that we have to cope with pain and decision making, doesn't it? The decision was made easier for me when my rheumatologist said that if I was his daughter he would want me to take MTX. I have never regretted this.

I have been on anti-TNF therapy as well for the past 3 years (4 different types) and ironically i now read MTX side-effect lists to comfort me about my fear of these drugs. It helps me to realise that these are potential side effects not a list of what will happen if I take a new drug. May be odd but it works for me!

Anyway I have rambled on, haven't I? Hope you manage to make the right decision for you and get some peace of mind / pain relief.

Wishing you all the very best with whatever decision you make.

msmungo

colinone

dazzler wrote:

Hi I have had psoriatic arthritis for around 8 years (35 now) and have managed to avoid taking methotrexate during this time. I have tried various nsaids and prednisolone during my initial acute phase of my disease with very little benefit. I managed to get a lot of my pain symptoms slowly (very slowly) under control with the use of antibiotic therapy and some excercise and sheer bl**dy determination. This disease has blighted every aspect of my life, relationships, work and leisure and i'm frankly so tired of it that its not funny. I have been offered methotrexate again by my rheumatologists and feel i am at a huge cross roads. I currently have relatively little joint involvement. I have neck and lower back ache with the neck problem causing occasional headaches and i have resdidual damage to my shoulders, feet and hands etc.
My problem is that the fatigue i suffer from seems to be out of all proportion to my other symptoms and i'm unsure whether methotrexate will lessen my fatigue? It sounds like it may cause fatigue among a host of other frankly hideous side effects. I have no idea what to do. I am very anxious.
Does anybody have any advice?
Hi Darren
First of all nice to meet you I have PA and RA must be nearly 30 years now but only bad the last 3 or 4 I was going to write you quite a long reply but i can only echo what Elna has already said and the others. You sound totaly p---d off and the more you get stressed out the worse it gets. You need to find a way of getting out of your rut. i kow how much it can get you down. The constant pain and fatigue gets you down and you start to worry about loads of related stuff least not your future. it all builds up inside you and wham it eventually hits you like a ton of bricks. I dont think you have anything to lose by trying the Methotrexate it may be just what you need. Yes the side effects are worring but they are less than many other drugs i was on it for three years but it stoped working for me so now moved on to other drugs. Dareen keep your chin up mate and take care. Keep in touch and up to date with what your going to do and please write as offten as you want you have found a great gang of people.
Colin

sunpainter

Hi Darren...

i'm in the recently diagnosed and very p****d off category. I go thro painful times when I just cry, but I know that I cope better when I can be hopeful. It is much worse when the pain is bad.. Lots of the "why me"s in my house.

But over the last couple of months I have come to the conclusion that it is a bit of a Bu**er, but it isn't going to stop me doing everything. I take the good days as a gift and try to just plod on the rest of the time. I have just got a place to do PGCE teacher training in September.... And am quite concerned at how I am going to cope.... but there is no sense worrying about 6 months away.

Now I can't take any anti inflamatories I am desperate to get started on the Methotrexate. Which is a big contrast to 3 months ago when it sounded like poison to me. I have heard lots of good stories.... those that you don't hear much on the internet.... because lots of the people who are doing "ok thanks" don't post. Saw my asthma/practice nurse this week, and she said the same thing. She has seen it help loads of people, and is looking forward to giving me my regular blood tests!

dazzler

Hi everybody

Ok i'm heeding your words and the words of my girlfriend and looking at things much more positively now. I had an hours counselling last night and we identified i've been in bit of a battle for a very long time. Now whats happened is that i've become very good at fighting and thats worked as a strategy to survive for a very long time also. Since before the illness in fact. Now i dont know if you know this but its a bit exhausting battling all the time isnt it.

It was important to recognise that having a degree of acceptance is not giving in, in fact its just another strategy. I actually feel already that having heard its ok to stop hitting things head on i'll flow a bit more and be happier and able to look at things a bit differently. I blamed myself for being ill sometimes and have been pretty hard on myself really. I've apologised to the people i love for being ill and for not always being myself its weird how i've changed so much. I'm determined to be myself despite these problems. It might just take a little more thought and management than before.

Do i make any sense at all?

thanks for all your great encouragement.

i'm on it

darren

ps sunpainter, i'm sorry to hear you are newly diagnosed i know the feeling. All power to you, sincerely.

elnafinn

Hi darren

Yep, you are making sense and making yourself see sense too. You appear to have learnt much about yourself in one hours counselling, it was money very well spent. Hope you will continue for a time.

You do seem a little more accepting and calmer in your posting - perhaps the fatigue will leave marginally because as you say it is exhausting being continually angry, cross, bitter and totally p**sed off. I take it others have said all this to you before including your girlfriend, but it took an unbiased person to finally make you see the way forward. Be kind to yourself, we are always saying this on here.

Here's hoping you have a great weekend. All good wishes to your girlfriend too.

Elna

mylo

Hi Darren

Good to see such a positive post from you.

I don't know whether this may help as well - an occupational therapist told me that being diagnosed with something like RA is such a shock that we have to go through the grieving process, which can take quite some time, ie grieving for our previous way of life, all those things we took for granted and enjoyed that are not so easy now etc etc. A bit like grieving for someone close who has died, or a relationship which has come to an end.

Good luck, Jane

karen1

Hi darren,one of my first treatments, i was put on metho,sadly to say it never worked for me ,all i ended up getting was pneumonia and pleurisy but that's not to say it won't work for you.Metho is one of the most widely accepted drugs for Ra.As for the fatigue,i don't think it really helped me either,But i do know( what I've been told)is to accept your disease,think positive about it and try to deal with each day as it comes,god knows it is hard,most days i could close my eyes and sleep all day, but I'm sure my 4 yr old would have something to say about that.Go for it and try the metho you have nothing to loose,and everything to gain.
Good luck
karen

frogmorton

Hi Darren
I like your attitude - just another strategy - that's good!!
Sounds like you have one very good blessing to count in your Girlfiend She talks sense!!!
Take care
toni x