The Treatment dilemma !

delboyo2005

Hi everyone

I have (3 days ago) been for my first appointment at the hospital. I am 65 yrs old The swelling across my knuckles was diagnosed as Psoriactic Athritis., not serious yet compared with other posts I have read !

What next ?, well the Dr proposed that I should take a drug called Methotrexate, i had blood tests, Xrays and within an hour I was off home. Since then I have provaricated, I dont know whether to take this drug or not. There are pro's and con's , it seems the drug modifies the disease , could prevent it , worsening, maybe spreading further. On the flip side this is a toxic drug, can affect your blood, monthly blood test, there are possible side effects as with most drugs.

It is a bit scary for me to be taking even the small dose prescribed of Methotrexate., the alternatives would probably be anti inflammatory stuff
which just treats the inflammation and pain.

Its great having the internet to educate yourself a bit but it has probably had a 'paralysing' effect , I have not decided what to do yet. If you could pass the benefit of your own experience / dilemmas it will help me to make a deciscion, thanks
Derek

sciqueen

Hi Derek

I was diagnosed in august 2011 with ra and started on mtx in october. It took 3.5 wks for me to notice an improvement (previously I was flaring every 10-14 days, in constant various joint pain). I take mtx in combination therapy with plaquinel, which I have now just completed 12 wks.

I have been on mtx for 8 wks. I have no background pain, the odd occasional morning stiffness and then very slight. I think this is now due to the cold weather triggering ra some mornings. I also have a viral infection at the moment. So for me its worked and I don't think I have realised the full benefits as yet. I've been on two wkly bloods for the last 8 wks. I've got a rheumy appt next wk and I will be put on 1 x month blood from next yr, if my blood work supports (which I am expecting it will).
I take 15mg of mtx.That's the benefits.

I have suffered severe hair loss after wk 1, which continues for the next 2 wks, before it settled down. I had to cut hair as the hair thinned to hide the fact I have less volume. At wk 5 they uped the dose to 15mg from 10mg and I experienced more hair loss, but less severe this time. I suffer nausea, up set stomach, loose stools, loss of appetite and extreme tiredness, not mention hard to concentration. I actually loose 50-60hrs down time due to the side affects. I do believe this will improve, but it takes time. At the moment I am not at work as I have been signed of sick. Due to go back in the new yr., but with the above symptoms; could I work?

I persevere with the drug as the benefits out weight the unpleasantness. In time I can resume some kind of life, as its far better than being in constant pain. All the drugs we take even plaquinel have side effects, there is always a trade off.

Think very careful, before you dismiss mtx, it very well researched, you are monitored extremely well and it works even better as a combination dmard. I am not an advocate, I just hated the pain so much.

I hope that helps

Sci x x:-o

stickywicket

Hi Derek. Welcome to the forum. I can well understand that you will feel a bit overwhelmed by the speed at which things are happening.

The thing about meth is that it's a disease modifying med ie it will slow down the progress of your P.A. The list of potential side-effects are a bit daunting but there is a good chance you will experience none of them. I've taken it (between 22.5 at first, to 15mgs now) for over 10 years. I think my hair hasn't the body it once had but is that due to meth or age? (65, like you but I've had RA for 50 years) Who knows? I do take a stomach protector with it but that's because of the damage to my stomach done by years of anti-inflammatories before they realised you needed a stomach protector with them.

The other thing about meth, as you said, is that you will be very well monitored. Presumably, you will also be prescribed folic acid. Different rheumatologists seem to prescribe this differently. I've always taken it twice a week.

For me, in my situation, it's a no brainer. Without meth, I doubt I'd be able to get out of bed on a morning. With it, I lead a fulfilling life. I find myself hoping you'll decide to bite the bullet and take it because I suspect that, if you don't, you'll still have to do so a few months down the line and you'll save yourself a lot of pain by jumping straight in now. But that's not to minimise what must be a big decision for you. Good luck.

valval

welcome it up to you but if was me would take it if you can stop damage happening then that can only be good and lots of people do not get the side affects if you do not try it you will never know and might regret it in years to come what ever you decide we are here to help you through good luck val

dreamdaisy

Hello, it's nice to meet you though I am sorry you have had to find us.

I can understand your reservations. I kicked off with one affected joint and it took years for the problem to be correctly identified which meant that for the first five years I had no treatment whatsoever. It's only been ten years with meds for me, I am now fifty two, I have thirty-five affected joints, I cannot walk without some form of support, I am in continual pain but so what? I can't change any of that and I will muddle on but I do wonder in my bleaker moments if things could have been different had I been identified as arthritic and put on the meds much earlier.

I have been on injected meth for years now and have had very little trouble with it. I do have the very occasional bout of nausea (a can of full fat Coke sorts that for me and I cannot remember when that last happened) and on the weeks when I have another injection too Thursday or Friday can be wiped out due to tiredness but that is all. Meth can work wonders with little side effects, or wonders with some side effects - but having the quality of life restored is what counts, surely.

I suspect the intial dose for you will be quite low and the monitoring is important - a faff, yes, but you said monthly tests? That's not too bad, believe you me, and if the drug makes a difference well, it will be worth it. I think that meth has an undeserved bad reputation - I reckon from what I read on here that it helps far more people than it hinders and if you cannot get on with it there are alternatives. These are early days for you and they have spotted it quickly: I would say give the meth a whirl for it may well help to slow the progress of the arthritis and lessen joint damage. Everyone's arthritis is different in how it develops and at what rate, but if you can put the brakes on now . . . . . . . . . I wish you well and let us know how you are getting on. DD

frogmorton

Hi derek

tis not esay to take that first tablet is it x;)

You are so not alone in delaying the start of your treatment. None of us will blame you, but a fair few on here take mtx and the vast majority are ok with it and a fait few swear by it.

Keep reading our threads and chatting to us lot and we will be here when you pluck up courage and also if you dont!!

Lovely to meet you - we need more men x;)

Love

Toni xx

SheilaD

Hi Welcome

i have just been diagnosed with RA (Nov this year) and was given Methotrexate 10mgs every Thursday. The only side effects I have had are nausea and upset tummy :oops: and I feel very tired on a Friday. I was also given a steroid injection to cover me for 3 months till the Meth got to work. Within 3 days all my swelling had gone and the pain had also vanished just the occasional twinge. As of today I have only taken 4 doses and like you had my doubts and fears, but very glad I decided to give it a go. It is entirely up to you whether you decide to go ahead and take it or not. I think the benefits of this drug out weigh the negativities.

Love n hugs
SheilaD xx

tillytop

Hello and welcome from me too.

I so understand your dilemma but I would urge you to give the methotrexate a try. If it's not the thing for you, there are alternatives and, as the others have said, you will be closely monitored.

I know the thought of these meds is potentially alarming but inflammatory arthritis is not something to be messed with and joints, once damaged, can not be un-damaged later on if you change your mind.

Meth is a very commonly used drug and there are many on here who take it so you will certainly not be alone.

Thinking of you.

Love Tillyxxx

prefabkid47

Hi Derek
Have just picked up your thread.I have been on methotrexate (12.5mg once a week,plus folic acid 24 hrs later) for about 10 years.Methotrexate like many drugs can have side effects but doesn't necessarily you are going to suffer these.
Methotrexate has given good control and have suffered no side effects.In my case the benefit has far outweighed any possible side effects.
Ron

dreamdaisy

Hello Derek, how are you feeling about things now? DD

barbara12

Hi Derek
Sorry I cant help with the meds, but I see the others have all given you some good advice, like you say its much better to come on here than google it
Oh and welcome to the forum...hope to see you posting more very soon x

delboyo2005

Hi everybody,
Thanks alot for your posts, it does help to have the benefit of your experiences , all similar, but also variations on the effect/side affect.

I have not taken any mtx yet but I have been to the chemist and collected 6 weeks supply., still thinking about it. I can see from everyone who has posted that the drug has been effective, so far nobody has said 'don't take it'.

The reason I havent taken it yet is because mainly I think it seems from one angle like ' a sledgehammer to crack a walnut ' and then on the other hand I think I could have other areas of my body already under attack to a lesser degree but no pain yet.

At this time I have 2 knuckles and 1 finger on my left hand affected, I cannot close my index finger fully., i am of course lefthanded, always the way ! I do not consider myself disabled . The main side affects seem to be nausea and hair loss, these side affects would not stop me taking mxt., but when I read the 12 inch sheet of very small print I realise that there is a very wide ranging list of side effects and not all minor, that someone must have experienced or they would not have been listed.

It is not like me to delay, a typical Aquarian I tend to leap first look second but this has really made me think!

Anything that anyone can add to the discussion would be gratefully recieved , I am still undecided., I have almost taken the first ones and then changed my mind, unbelievable !!
Thanks friends.

valval

well pal it has to come from you but the dammage can not be repaired and the docs do keep a close eye on you any probs are caught early i put off stronger meds for a while and fingers are twisting have lumps etc knee not strong sternum painfull when i breath and still do not know which of the inflimation arthers i have. but none of them are good to have .
have started sulfasazine to add into the other two meds i take was not sure about taking it but the flares are getting worse so no option but give it a go i have to work and would not manage with out the meds .
good luck with what ever you choose to do we are here to help you through val

stickywicket

Small print and side effects. They're a daunting combination delboyo2005. I've not done it but I suspect if you read the small print and side effects on a pack of paracetamol you'd hesitate to take one. I seem to remember hearing that, by law, any reported potential side effects of meds have to be listed so a fair proportion of these will come from people who were already very ill in other ways and also on a lot of other meds. I do have a friend - who doesn't have arthritis - and one of the listed side effects on her very necessary meds is 'sudden death'.

I really do sympathise with your dilemma. I started with what was originally thought to be 'chilblains' on my finger joints before wrists and ankles kicked in. I can see why you must feel, at this stage, that it's like taking a sledgehammer to crack a nut. I write as someone for whom there were no sledgehammers available until I'd had this disease for some years - just paindullers, anti-inflammatories and steroids for the really tough times. As a result, it went unchecked so I now have a whole host of twisted joints, the only good ones being those that have been replaced. I have a good quality of life but, given the option of DMARDS and the benefit of hindsight, I'd take them every time.

lindalegs

Hi Derek,

I started with RA at age 27 and I'm 53 now. Dmards, like Sulphsalazine, were used in very small doses then and I now have very deformed joints and 'mechanical' problems.

I was recently on Mtx for 3 years until it stopped working so well for me and was also giving me morning headaches.

It not only helps slow down arthritis it also stops the painful stiffness in the mornings and generally gives a better quality of life.

As others have said you will be monitored closely with regular blood tests and also started on a low dose.

The decision is yours but if I'd have had the chance to take it all the years ago to stop the deformities I would have jumped at the chance. You can always stop it if you don't get on with it.

Hope this helps.

prefabkid47

Hi again Derek
From one Aquarian to another (and the same age group,shall be 65 next month).Like you my problem started with painful swollen knuckles,to the extent that I couldn't clench either fist and grasping anything was very painful with associated loss of strength.Also suffered extreme joint stiffness in the mornings.

I was aware of the possible side effects (the small print and comprehensive list appear common to many drugs!) but felt the advantages would greatly outweigh the disadvantages.I didn't hesitate and started my MTX.As mentioned in my earlier post have been taking it now for about 10 years Have bloods done every 4-5 weeks and these have all come back normal.Have no other apparent side effects.

My knuckles now appear normal and only occasional very slight pain in the left.The joint stiffness is all but gone.Have a bit of distortion in lower thumb joint this was damage done prior to medication.

Ron

jceeyore1975

Hi there,

I am not sure what I can add which hasn't already been said.

I was diagnosed with PA about 6 years ago (one swollen toe and pain in my ankle) but wasn't given anything for it. About 2 years ago, I started getting swollen fingers, pains in my hips/lower back and wrists. This time the rheumy went all out and I was suprised to find myself walking out of the hospital having had x-rays, blood tests and the suggestion that I needed to start taking methotrexate to slow down the progression of the disease.

I spent many weeks worrying, thinking about what to do and trying to justify the potential side effects versus the (from what I could see) quite minimal form of the disease.

I had no idea what to do - but having witnessed my friend's husband become progressively disabled by RA I decided I had to do something. I have a young family and I couldn't afford to let myself get like that.

It is scary - we don't have a crystal ball to tell us whether these strong drugs will be worth it. If someone could tell me that if I didn't take them I would be in a wheelchair in 5 years, then it becomes a no-brainer but we just don't know.

I decided to take oral methotrexate and the folic acid. Initially I was on 20mg but it made me very very sick. Even with anti-sickness tablets I would just be sick. They began to reduce the dose to see what I could tolerate - first 15mg and then 10mg but I was still sick.

Eventually, I switched to injectable Methotrexate and I can manage 10mg of that. I feel queasy but I am no longer sick.

Unfortunately, whilst that has helped a little bit - it has not helped completely and I still have swollen/sore joints. Perhaps if I had been able to stomach it in a higher dose it would have been better.

As a result, I am about to embark on Humira which I am totally petrified about taking and I am now having a similar quandry about that drug as you are about Methotrexate.

Only you can decide what to do (as you well know) but I know when I had to stop taking Methotrexate for a while (had a 3 month break due to other reasons) I ended up not being able to use my wrist properly and couldn't walk without limping so I can only assume that that is a sign the Methotrexate was working.

I'm waffling now, so I will stop. I can empathise completely with you as I had very very similar feelings about taking Methotrexate and I am now going through it again. I hope you reach a decision you are happy with and I wish you well.

JC

lindalegs

jceeyore1975 wrote:

Hi there, ..........As a result, I am about to embark on Humira which I am totally petrified about taking and I am now having a similar quandry about that drug as you are about Methotrexate. ......JC

Hi JC,

I've just started Enbrel/Etanercept weekly injection which are the same family as Humira.

Try not to worry about taking it. I'm into my 5th week and felt a difference the evening of the 1st injection although they say it can be up to 3 months. It is worth doing because you can feel so much better.

Be brave, I know you'll be glad you tried it.

Luv

ritwren

I don't know what I can say that would help you make up your mind but I too have PA diagnosed a few years ago when the swelling and pain and inflamation in my foot got so bad I had to be hospitalised. They started me on MTX and I had no hesitation taking it at all despite being fully aware of the side effects.
Most of the side effects which are listed apply to the much higher dose which is given for Cancer. The biggest side effect I have had has been ongoing nausea which despite taking it for a few years still persists but is managed by taking anti sickness tablets for a few days after I give my injection. I started out on the tablets but am now using the injections which I give myself once a week.
I do hope you come to a decision which you can deal with. I know some other people with PA who have had a really bad time with this disease and there is no way of knowing which of us are going to be hit so bad. The thing is once the damage is done, there's no going back, it can't be repaired so I'm taking it to prevent any more happening.
It's not the be all and end all as I now feel that I need something more or something else because I've had problems lately.
Very best of luck, I wish you well. I'm delighted you've found our forum and hope you enjoy taking part in the threads.

ironic

Hi I have been mtx for just over a year now, started on 10mg with folic and I am now on 17.5mg which I have been on since July. I was meant to increase to 20mg but I have stopped at the lower 17.5mg. It did take a while but things are manageable now and I do have Isotonner gloves which have really helped. I also have some damage to my left hand and I am awaiting an appointment with the hand surgeon as in my case it is the flexor tendon that is stopping me from bending my fingers.
Anyway as to the side effects:- I have not had any hair loss but have had the sickness and tiredness for a couple of days after. I asked my rheumy nurse and I now take three tables at teatime and have the other four just before going to bed. That way I sleep through most of the sickness. I have been told that if the mtx works well then after some time I would be able to lower the dose.
If you have a rheumy nurse why not give her a ring, she might be able to reassure you. I was like most of us and very scared to go on this drug so I do understand your reluctance.

Good luck with whatever you decide.

I x