Update from me; Refused methotrexate

crabby85

Hiya everyone

I had my appointment today to discuss which treatment i need (im coming off steroids) i saw the rheumatologists nurse instead of the consultant himself & she said his instructions were to start me on methotrexate today. After going through all the side effects and the fact i would need regular blood tests i felt kind of scared of this drug. I told her i didnt feel comfortable starting it. She said other than that they could offer me sulphasalazine which is less frequent blood tests (still monthly!) and less side effects. She said these were my only options. I said i needed to think about it. She gave me leaflets on both drugs & said if i need time to think about it then that's fine. I just don't know what to do. The side effects seem very serious - breathing/lung problems? & picking up lots of infections etc...I was in pain with my hands and wrists while in there thinking can i really afford to refuse treatment? but i feel like i'll just be swapping one health problem for another......so i left with nothing but the leaflets. i feel so lost.

dibdab

You know we all feel kind of lost, confused, afraid and alone when we start on the ridiculous journey of living with inflammatory arthritis- the lists of side effects on the drug charts is frankly terrifying, but what you discover is that though many of us get something, we don't get all of them, and most of us only get the minor side effects.

My son who is a doctor always reassures me by saying that the drug companies have to record every possible reported side effect- how ever rare or unlikely- and because we are so well monitored any potential issues will be picked up quickly. Blood tests aren't pleasant, but you get used to them, and once you're well established on a drug they often become less frequent.

My grandma lived with RA in the days when the only available treatment was aspirin- sounds innocent enough doesn't it, but she developed dreadful stomach ulcers and endured so much pain-I'm thankful that I have the disease now when there are so many effective treatments available, and such good understanding of the potential side effects, and that I am so well monitored.

Only you can decide what is right for you, but the reality of living with an uncontrolled disease is often worse than the fear of the side effects. I hope that you have the support you need to make the right decision for you.

Best wishes

Deb x

stickywicket

Some good advice there from Deb. I'd add that many of the people getting these side effects will be elderly and on a fair few other meds for other conditions.

Remember that untreated RA can also cause problems on areas other than the joints. Mine was untreated by DMARDS for many years. As a result the only joints unaffected are the replaced ones and most of my back. It's not just a matter of putting up with the pain.

I wonder how much of your decision os based on fear of meth and how much on fear of the blood tests? The latter can be overcome. Why not give our Helpline people a call and talk things over with them?

DebraKelly

Hi there,

I have been on Meth of and on since I was first diagnosed in 2009. And was on Sulpa for a while.

The Sulpa did nothing for me and made me very sick.

However Meth has does wonders for me and I would'nt be without it now.
Yes there are side effects, but they should and do die away after a couple of months. If you increase the dose properly and take folic acid you should be fine.

Please PM if you have any questions about Sulpa or Meth.
But also note that we are all different and everyone has different reactions to different drugs.

Also remember that you are not alone!

dreamdaisy

Side effects have to be listed but are not guaranteed to turn up. I take humira, meth and sulph and, despite being asthmatic, have no trouble on the breathing front (but if I do my inhalers sort it). I bruise more easily thanks to the sulph but that's no big deal.

I have a had a lifetime of taking meds and so have no fear of them. It must be very different for someone who has had little contact with the medical world and then arthritis rocks up; it's little wonder you can't get your head round it. I was thankful to take the sulph, the meth and everything else I tried but for me it was too little treatment far too late (I didn't begin the sulph until I was five years in - by then the damage was done). I am convinced that if I had been able to take the meds earlier I wouldn't be in the mess I am but that's all water long gone under a distance bridge.

The blood tests are an important part of the monitoring that we have to do to ensure that a) the meds are helping and b) our bodies are coping with them. I had fortnightly tests for years but regarded them as necessary event- they were in my best interests and, because the docs were trying to help me I too had to play my part.

Arthritis is a degenerative, progressive condition - everybody is different in their development of the disease but in the case of an auto-immune kind the sooner the drugs get into the system the sooner that progression is slowed. DD

salamander

I wonder why she said they were your only options. After I stopped mtx I was offered hydroxychloroquine, which, I was told,has the least side effects. Lots of people do well on Mtx and suffer little or no side effects. I didn't like it and got ill a lot. I'm now on sulphasalazine, which is a milder drug, I believe, and so far, so good.

ELAINE55555

Hi Crabby,
I too, am on the mtx. Along with hydrox and lefludomide. My disease has not progressed much in the 2 years, thanks to these drugs. Yes, I get tired, and yes I get wee flare up now and then, but it could be so much worse. You can only try it, and make sure you go for your blooid tests.
Good Luck.

bubbadog

Hi, Crabby, I'm on Hydroxychloroquine and have to have blood tests every month and see the Optician once a year, I'm now used to having to go and see the vampires once a month and I regularly have my eyes tested because I need to wear glasses. So those things you have to do when taking those type of meds are not so bad. The only side effects I know I'm getting are I bruise easer now, there maybe a link to the med why I'm getting more migraines but that is getting looked into at the moment. We all know the side effects list is just a precaution as everyone has said. It is your decision at the end of the day.

dreamdaisy

Further thoughts: because our immune systems are suppressed to slow disease activity then yes, we are left more open to infections but these can be avoided. I am an assiduous hand-washer, especially when out-and-about, I also carry hand gel and a couple of anti-bac wipes in my bag so I can wipe over restaurant tables etc. I rarely catch colds etc. probably thanks to this regime. When I was working as private tutor my clients became accustomed to frequent squirts of hand gel, especially if they sneezed and blew their noses! By the time I retired they would automatically hold out their hands. Remember that all humans (us included) are filthy creatures .

You should also be offered a flu jab as a matter of course. This is essential to add an extra layer of protection in the winter months. Many of us deal with this on a day-to-day basis, I appreciate that you don't want to join our gang but it may be in your best interests to do so. As Salamander said there are other meds available but essentially they are the same thing under different guises. DD

ichabod6

Hello Crabby,

To put it in simple terms you will only become aware of
any side effects to your body when you start to take the
medication whatever it may be.
You should always remember that there are no medical
experts in this cyber land.
Each of us can only speak with any degree of accuracy
of our own personal experiences.

mike26

Hi crabby85
I know your fears,i to like you was new to all this(now on triple wammy)
lefiunomide,methotrexate inject,humira inject.
But now looking back on it , what i put up with i thinks worth it
(the pain of arthritis) The medication has give me relief.
and hopefully can come down of some of the meds at some point
not sure when.i havent been on the humira long and it has give me some
side efects
the good side is im able to walk better. and pain has eased a bit..
hope you can make your choice based on your pain and the quicker
you can start the better its going to be for you.
i have monthly blood tests, so to keep eye on us.
good luck and hope you make right choice soon.
mike26 :roll: :roll:

Pippa

It's interesting when we talk about "much greater risk of infection" etc when we are on these drugs, because I take the view that my immune system has gone crazy so the drugs just bring it down to a normal level ?

If PsA, as an example, is caused because our immune systems have gone mad, then surely the drugs to lower it just makes our immune system work normally?

Or do I have that wrong?

ELAINE55555

I wonder about that too, Pippa. I've been on all these "immune suppressing" drugs for 2 years now, and despite working in a busy shop and looking after 3 small grandchildren with all their bugs, I have never had any infections, just a couple of head colds. It makes me wonder if my immune system is suppressed or have I just been lucky?

dreamdaisy

As it was explained to me our immune systems are reduced to almost nothing to stop disease activity. This is one of the reasons we have to be so careful because we don't produce symptoms as easily as someone with a normal immune system. This is why (on the advice of my hospital) I stop the meth and humira at the first hint of a sore throat so my immune system can fire up and fight the bug (and occasionally with the help of anti-bios too). I've been fine for the past year or so. The arthritis doesn't usually worsen, I can tolerate a fortnight off the meds before I can feel the PsA waking up - mind you the OA stays all the time! DD

mike26

I asked my roomy the question, how long would it take for
the PsA to start up if i stopped taking the meds.
he told me 2 weeks
only ive had a stinking cold now for about a week and cant seem
to shake it off.
if it lasts much longer id like to stop um for a while give my body chance
to fight it off.
like dd said hope it goes before it wakes up PsA that is.
i will check with roomy tho see what they say about it.
what a malarky :roll: :roll:
mike26..

barbara12

Hello crabby it must be so scary for you but read what the others have wrote and see what you think then, sorry I cant advice but I do wish you well with whatever you decide...xx

Mat48

I have been on DMARDs and steroids for about 3/4 of the time I've had RA for - about three years - and in that time I have never had more than a couple of heavy colds and they were when I had either just started a DMARD or was up on a higher dose. I did have a sick bug once when I made it up to 20mg of Methotrexate briefly but other than that I believe my immune system is extremely overactive and still very effective where not catching things is concerned.

But after four months off DMARDs I learned that there are worse things to life than catching bugs. I wasn't exactly in lots of pain but I did feel very ill a lot of the time in a flu-like way. And now five weeks after coming off Hydroxichloraquine (3rd DMARD) because of nasty rash with swelling around the face (I am VERY allergic to lots of things including drugs) I find I feel pretty ill again.

It isn't just the arthritis pain though. The way autoimmunity/ inflammation presents with me (and many others) is very systemic and I'm going back on injectable Methotrexate on Tuesday and am very relieved about this. I don't fear erosions because I don't think my RA is very aggressive in that way and I have a high pain threshold - but I do fear feeling this ill and constantly exhausted, losing weight without trying - hardly able to function normally and getting all sorts of horrid add-ons that make flu seem like a doddle frankly.

The practice nurse and my GP asked me if I was dreading going back on this drug the other day - the answer being "no I can't wait!". No one who doesn't end up on these immune suppressants can fully understand how a person who looks reasonably healthy can agree to take drugs like these. But if they were feeling as ill as I've been feeling while taking no DMARDs they would get it I'm sure.

So I can't advise you but, based on my experience to date, there is more to fear from not taking these drugs than of trying them. Good luck with your decision. Mat

crabby85

Thankyou everyone for taking the time to reply to me. I still havent decided what to do im trying some anti-inflammatory heat gel for the first time today instead of regular painkillers (clutching at straws?! maybe) but feeling like i am probably going to end up giving in and getting the medication. Usually i can put up with the pain silently but the last few days its occasionally caused me to audibly cry out and it's just not working. I was overwhelmed by all the responses and lots of your words were comforting. Thankyou again.

Mat48

Oh I so feel for you. RA is overwhelming for anyone to get their heads round at first and the drugs seem equally daunting I know. RA Warrior might help you if you google what she says about methotrexate and needing the best ammunition possible to fight this disease.

I'm about to restart it tomorrow after 8 months off it. I am a bit apprehensive - but not so much about the drug itself or side effects - just how damaging this disease can be if it is left to its own devices and whether methotrexate is going to work well enough. I'm afraid I don't think ibuprofen gel will make much odds as RA is systemic but it does work topically for a while for me. Good luck. X

Tubby

I have done sulphasalzine and methotrexate. I was fine with the Sulpha but not sure it did much me or my body. Didn't like methotrexate but the tablets were much worse than the injections. I really didn't like the meth and I would be very reluctant to return to it.

I have just started on Enbrel (an Anti TNF) and so far...nothing much. Thought I had had an allergic reaction last week but it may have been a mild burn from a hot water bottle. Had blood tests and taking anti histamines and feeling fine now. Now hoping for a miracle cure (haha) but have definitely had a flare over the past week - still stress levels have been through the roof so the drugs didn't stand a chance!

Mat48

http://www.dbh.nhs.uk/Library/Patient_Information_Leaflets/WPR19951-Methotrexat.pdf

I was looking for info about alcohol and MTX and came across this link which I thought you might find helpful too. Mat

dreamdaisy

I've never had any qualms about starting any medication but there again I've been taking medical drugs since I was twelve (the first asthma inhalers and they saved my life) so I guess my perspective is somewhat skewed. :?

If you've been used to good health then this must be an enormous shock to the system. I can't fully comprehend how that must feel (either good health or the shock) but we are very well monitored when on these meds to regularly check how the whole body is coping (I had cause to be grateful for that when I was on Enbrel). We are all different in how we react to these drugs - I know of one member on here who no longer posts because a small amount of tablet meth was enough to sort him out - and I mean sort him out - he's leading a normal life. One of the troubles with the forum is that it is populated by those for whom the meds aren't doing too much - those who are doing OK vanish, forgetting that their experience would help those like you. I'm not doing that well on my triple therapy but I know I would be a darn sight worse off without them. DD

Kittkat

hey there. I didn't take drugs. Thought I could cure it myself. Oh deary me do I wish I had just gone to the docs and taken meth. It has done wonders for my psoriasis could have saved myself that misery too.

Cariad71

Hi crabby,

I can see lots of people have already given you good advice and I can't say I have anything very different to add, just as I've said before that the DMARDS can be very good at controlling the disease and the blood tests and possible side effects can be a small trade off for being in less/no pain and allowing you to live your life again.

I'm one of the luckier ones who managed pretty well on just mtx and NSAIDS with occasional help from steroids, and DD is so right about the people who are doing well vanishing from the forum; I found this forum a few months back when I was suffering and feeling low and alone. I'm doing much better now and back in work etc and the frequency of my forum visits is directly proportional to the amount of pain I'm in! So you may not hear so much from people who really do well on the drugs, because as DD said, they're generally off living life and not thinking about the forum!

Whilst we are not a team of medical experts, I do feel that 'real patients' experiences of drugs are useful when you feel anxious about starting something. I'm a pharmacist and while I know how to research the hell out of a particular drugs side effects etc, when I'm faced with starting a new drug I'd rather hear from real people who've taken it, but you must always bear in mind how different we all are and therefore how we react to medicines. I had to stop sulfasalazine as my immune system went too low (picked up by the blood tests hence the reason for them) but tolerated mtx very well with the exception of mouth ulcers which I get without it anyway.

Feel free to pm me if you want to know anything

Take care, Cariad xx

crabby85

yes it makes sense what you say about the people doing well not posting so much.

DreamDaisy, Its weird, it's not like i have never taken medication - from the age of 17 i took every antidepressant and anti-anxiety tablet under the sun- & endured the side effects. I've been off them for a year but for many years every time i tried to come off i couldnt. Somehow this medication & treatment seems worse. Maybe it is my anxiety starting up again, i dont know. Also being told i have arthritis came as more of a shock to me than mental health problems such as depression and anxiety. I still feel a bit of denial i guess. Its silly i know.

As5567

Maybe an appointment to talk things over in more detail with your doctor could help? He/she should be able to answer your questions/concerns for you and help you make a decision.