Alternatives to Methotrexate?

Neilorangepeel

Hello, I'm new to the forum.

I'd like to know if anybody knows what alternative treatments there are for people who don't get on well with methotrexate? I've been taking Metho for about 7-8 years now and I've really had enough of it and all it's side effects and the hassle that goes with it.

I'm due back at the rheumatology clinic in a months time but I've taken the decision to stop my metho this week for good. I've spent the last 7 weeks coughing my lungs up. I've been to the GP twice and tried 2 anti-biotics for what they first thought was a lung infection but now the Doctor thinks it is just a side effect of the Metho itself because it hasn't cleared up.

The last couple of years have been pretty horrendous for me in terms of colds and flu and I've enough of feeling like crap and dragging myself into work only to get moaned at and treated like a leper for coughing and sneezing over everyone. In 2012 I had 8 bouts of cold/flu totalling over 5 months of the year! Plus really knees, elbows and hands that went on all summer. I only took 1 day sick off work and did many more in overtime.

Before I went onto Metho (and a little while after) I took an NSAID called Piroxicam which I was really happy with. If I had a flare up in my joints it would be gone by the next morning after taking a tablet on the evening. I was able to live a normal life, free of blood tests, able to drink alcohol, hardly any colds etc. When the Piroxicam and Metho overlapped for a while I did start to get really bad stomach cramps though.
I've had a few steroid injections over the years which have always worked well for a month or so. My last ones were 12 months ago when I was at my lowest point, both with illnesses and a huge build up of fluid on my knees.

I'm still only 33 so the Doctors should be keen to keep me in work. I do shift work with a flexible contract (flexible for the company, not me) so I find it difficult to book blood tests and get to them because I can be called into work with only 12 hours notice and the usual waiting time is 2 weeks ahead for an appointment at my Doctors surgery. Throw into that the fact I share a car with my girlfriend it makes getting to my appointments very difficult.

I've been on 7 x 2.5mg of metho a week for the last year and my arthritus hasn't been too bad. Just a bit of fluid on my knees and a bit of pain accross my knuckles when i'm working a lot. I'm just really fed up with having a low immune system.

Any advice or experience of other drugs that might help would be appreciated.

Neil

dibdab

Hi Neil,

So sorry to hear how you're struggling, but don't despair. Many of us take a combination of drugs to get some sort of control of this disease. Personally I take 3 DMARDs in combination, and whilst the side effects can be unpleasant there are things that we can do to mitigate some of them I take my methotrexate spread through the day in 3 smaller doses, and always with food-it's helped with the stomach trouble. I know that some folks find they have less side-effects when their meth is injected rather than in tablet form. There are lots of options to try- but you need to talk to your rheumatologist and ask about options. I wonder if you have a phone number for the rheumatology nurse- they are often the 1st line of support, and have lots of experience.

As for that cough- again- ask the rheumy if it's related- I had a string of coughs- 8 in 12 weeks at the worst- and eventually was diagnosed with a specific lung problem resulting from lung damage- but on the plus side, I now take daily antibiotics prescribed by a respiratory consultant, and my chest is much better-no infections for 10 months! There's help out there if we ask the right questions- but of course we don't always know what to ask or who to ask. GP's are generalists, and have only partial knowledge of the complexities of the disease we live with- and perhaps it's unrealistic to expect them to know in depth.

I really hope you get the help and support you need very soon- but maybe the 1st step to finding that help is speaking to the specialist services?

Deb x

Neilorangepeel

Hi Deb,

Thanks for your reply. I have got a number for the rheumatology nurse at the hospital. It's on a card I have that I keep in my wallet and I have rang them a couple of times in the past. I'll give them a ring when I get chance next week.

dreamdaisy

Yes, there are alternatives, you name them I've probably tried them. When I catch a cold I stop my immuno-suppressants until it has cleared - my hospital has always told me to do that and I do. I am now on injected meth - that can minimise the side effects as it by-passes the digestive system. I was on the tablets but developed a rash, after a break I was changed onto the injections which I now do myself.

It would appear that the meth is controlling your RA pretty well but what a shame that it comes at such a cost to you. Steroid injections work for some but not others, and they can also vary in their effects - you can have a good result then with the next one comparatively little. They are not a long-term solution and they only mask the problem, not 'cure' it. I think you should make an appointment with your rheumatologist and chat things over with him / her. DD

stickywicket

You sound like someone who is not going to let arthritis grind you down, Neil, and that is a very good thing.

Yes, there are other DMARDS besides meth and, when you see yor rheumatologist next month he/she may well want to start you on one or more. Meanwhile, I'd urge you not to take matters into your own hands. I think most of us have stopped meth briefly for colds or before surgery but, if you can, I think you should stick with it until the rheumatologist decides the next step.

GPs, however good they are as a GP, are not specialists in either auto-immune forms of arthritis or the meds they require. It's always best to sort these things out with the rheumatologist or with your rheumatology helpline.

Steroids, in any form, can seem like small miracles but the operative word is 'seem'. They cure nothing. They only mask the symptoms. And the jabs tend to work less the more one has. Without a DMARD the disease still gets worse. NSAIDS are similar to steroids in that they only treat the symptoms not the disease.

Regular blood tests are essential though with meth, even if it's hard to get for them. It might be worth asking if you could have them at your local hospital if docs appts are not easy for you. I can pick up a form from my doc's receptionist any time and take it down to my local hospital whenever I want. No appt necessary.

All credit to you for not missing work but I can see that all that coughing and sneezing would not endear you to your colleagues By the way, do get a flu jab too. They are important for those of us on immuno-suppresants. The bad news is I think all DMARDS act by suppressing the immune system. It's something we have to live with. These days I'm very anti-social around people with colds, I wash my hands much more frequently than previously and I use antibacterial hand gel particularly after a trip to the supermarket, surgery etc.

I hope you and your rheumatologist find an acceptable solution. You sound like a man determined to try.

jojo03

Hi Neil

I don't actually take Methotrexate at the moment - I am having a bit of a battle with my rheumatologist, as he wants me to take it, and I don't!! I already take two lots of DMARD drugs and am not keen to add a third. I don't tend to suffer with coughs and colds, but have had a melanoma in the past, and my GP suggested that whilst the DMARDs would certainly not have caused this, they may have stopped my body from fighting it off quite as well as it would have done if I hadn't been taking the drugs.

I take a NSAID twice daily, as well as paracetemol morning and night, just to help with the morning stiffness. I also take a muti-vitamin daily and, when I had antibiotics after surgery, I had few months on a probiotic vitamin too, to give my immune system a boost.

Do what you can to stay healthy, as others have suggested, use an antibacterial gel, wash your hands frequently, and try to avoid others with coughs and colds - not easy I know, but try to get plenty of fresh air when you're not working and do as much gentle exercise as you can too.

Hope your health professionals can help you out with your meds.

Jo x.

stickywicket

jojo03 wrote:

when I had antibiotics after surgery, I had few months on a probiotic vitamin too, to give my immune system a boost.
.

Were these actually prescribed, jojo? I ask because I've always thought that, as antibios wipe out all bacteria, good and bad, there's no point in taking probiotics until after a course of antis.

jojo03

Hi Stickywicket

No, they weren't prescribed - but I did speak to my pharmacist about taking them first. I didn't actually have a course of antibiotics, I had them intravenously during my two knee replacement surgeries, so once home and back to "normal" I took the probiotics for about three months to counteract the antibiotics.

Jo x.

stickywicket

Ah, thanks for that, jojo. That's how I'd thought they should be taken.

Neilorangepeel

Just thought I'd update where i'm at. Thanks for all the replies people. So, I stopped taking the methotrexate at the end of September like I said I would. Within 2 weeks my chest problem cleared up which was great. I went back to the clinic at Worcester at the end of October and wasted 3 hours of my life. Not sure I'll bother going back again. Got seen by a different Dr again. I told him I was quitting the metho after going through my history with him. He said come back in 6 months and see how I am without any meds and if I have any trouble we could try another drug that sounded like methotrexate but began with an 'S' I think. Anyway, I said I'm not interested in anything that lowers my immune system. He didn't look too impressed.
My arthritis has been no problem at all since then anyway and for the first time in years i've been really happy. I completed a 5K run a few weeks back too. I'm so glad to be free of all the bloodtest's, colds and tablets. I'm never going back to that! I'm really looking forward to a Christmas & New Year involving alcohol too! :xmas_cheesygrin:
If I start having problems with my joints I'll ask about having Piroxicam again because that worked great for me last time. That or the occasional steroid injection. I did consider sourcing some piroxicam off of the net to keep in reserve incase I have a flare up and the Doctors don't prescribe it to me. Although it might be a bit harder to find now Silk Road and Sheep marketplace have gone.
Have a merry Christmas everyone and thanks for your input.

:presents1:

stickywicket

PLEASE don't buy meds off the internet. There's no quality control. You could be overdosing or underdosing plus taking in some other nasty stuff. If your GP won't prescribe the meds of your choice it is for a reason. Self-prescribing is very dangerous.

I think your rheumatologist had the right idea in asking you to come back in 6 months to re-assess. Feeling good or bad can bear no relationship at all to disease-progress. Your immune system needs lowering for the very good reason that auto-immune forms of arthritis are caused by an over-active immune system. Getting the balance right between what's good for the arthritis and what's good in terms of overcoming colds etc is difficult but necessary. You've only been off meth for a few weeks and your body will still have it there.

Steroids are not a long-term solution. Just read Colin1's thread on them.

I know I seem harsh but I felt I must warn you of the dangers of the route you have chosen and I'm very short of time so can't pussyfoot around things. Please keep the 6 month appt with your rheumatologist and decide together where you go from there.

mike26

hi neilorangepeel pleased to meet you.
your 33 and can complete a 5 kl run , that shows you cant be to bad
with your condition. but time will tell i do hope you can beat it.
like stickywicket said its a good idea your roomy wants to see you in 6 months just to see how you getting on .
im on 2 damards and about to start on TNFs ,i have bloods done every
3 to 5 weeks.
It is a long road, i had to stop working when i hit 60ys ,but i had been getting slower and slower from 50ys (thought it was just getting older)
but it was a bit more than that.
realy hope it works for you at 33 you got a long way to go.
good luck mike26..
remember the rheumatologist is there to help people like us..

merry xmas :santa: :santa:

Tubby

Although I wuouldn't buy medicines from the internet I do fully sympathise with you

Tubby

Whoops, something went wrong there :oops: I know many others will disagree with me but I think methotrexate is an easy alternative for the NHS to dish out when it should really be looking at proper exercise and lifestyle support - not just the token stuff they have to offer at the moment (I would like to stress that this is not the fault of the individuals involved but that of the system). It is a nightmare trying to work and deal with DMARDS and, unfortunately, for some of us well beneath retirement age and with some, often painful movement left, staying at home and/ or resting when things are bad is not an option. The drugs often only have minimum impact but come with very essential but very regular blood tests, the need to stay in for drugs to be delivered, the need to stay in for used needles to be collected, side effects, endless bugs etc, etc. All we then get is, try them for another 6 months. I find myself being scared into taking these drugs for fear of what will happen if I don't but seriously wonder if they are doing as much harm as good. I don't blame you for the action you have decided upon, you can always go back. All I would say is keep listening to your body and keep asking lots of questions of everyone you can. You will then be able to make a balanced judgement.

Neilorangepeel

I get a bit tired of being messed about by the Hospital to be honest. Nearly every appointment I have there gets altered. Often with only a week or two's notice yet if need to bring my appointment forward a couple of months like I really needed to in July 2012 when I was in chronic pain they couldn't/wouldn't do anything for me. I was promised for years an appointment with the top consultant at Worcester and when I eventually got one, a week before, you guessed it, moved back a week and ended up seeing a lesser Dr who I'd never seen before. They failed to act quickly enough when I had tennis elbow and now i've lost about 30 degrees of movement in my left arm that'll I'll never get back. So, that's why I've lost faith in the place.
With regards to buying meds of the internet, I don't really worry about the risks involved. I've been a recreational drug user for 20 years now and probably put a lot worse in my body before. The thought of getting old and having this disease take over my body is what really scares me. I'd rather have a shorter life that I could enjoy, than a long, drawn out, painful and unhappy one.

stickywicket

I don't see it as an either/or, neilorangepeel. I've had RA for 52 years, since I was 15. Of course there's been pain but it's been a very happy, fulfilled life. My real problems arose because there were no DMARDS during my early arthritic years so damage was done then.

You could always change hospitals.

As for not being worried about buying meds off the internet because you've used recreational drugs for years, maybe you're assuming that any damage done by them would be immediate and obvious.I believe it aint necessarily so. Take care.

Neilorangepeel

I don't see how I could change Hospital other than moving to a different area? It's the only one in my catchment area with a rheumatology dept. I can't afford to go private.

stickywicket

:xmas_redface: Sorry, you're quite right.

tjt6768

Hi matey, sorry that you are going through all this rubbish... this disease affects our lives in so many more ways than people realise.

There are definately more alternatives to meth... I started on hydroxochloroquine, that didn't work for me, then sulphasalazine, worked better but not enough.. I am just into my third week of methotrexate (tablets 15mg) and up to last week, no side effects.. then I started with a rash, had emergency appointment Wednesday with my rheumy nurse, they dont think its the meth so I am hoping they are right... I need to give this a go as I am sick of the constant flare ups..

So there are alternatives, do t give up on the hospitals and PLEASE do not order things from the internet, I have been a recreational user of certain things for many mnay yrs and I would not dream of buying from the web, that would be a really silly thing to do and I know that you are probably desperate for help but I'm sure that you wouldn't be daft enough to take things that have been posted from who knows where, contaimimg who knows what.

Best wishes matey... take care

Mat48

I completely get where you are coming from Neil - apart from buying drugs online without the approval of my doc which I really hope you don't do. It's not easy to plan the life that you want to have you know - try as you might. I'm fifty and have had RA for 3 years or so (diagnosed two years ago) and agreed to the drugs because I don't want to find myself in horrible pain with deformities in 20 years time. I have tried Sulphasalazine, Methotrexate (both orally and by injection) and now am on Hydroxichloraquine.

I had severe reaction to the first one (beginning with S :roll: ), took Methotrexate for 19 months and came off it in August because I had strange symptoms which no one could explain - but my GP and I guessed to be a rare side effect of MTX. Also my liver enzymes were always raised which I didn't feel was right. Also I was tired of getting sick and having a foul taste in my mouth constantly

I do wish I could say that my life has been great since coming off it but it hasn't - it's been fairly hellish until recently. However the RA has never returned in the form of excruciating pain but I did get ill and sore and my feet became swollen so I :xmas_cheesygrin: was hobbling about. I ended up on a one month dose of Prednisolone which worked but gave me other problems once I was off it again.

The symptoms I came off MTX for have never gone fully but nor have they got worse. But at my rheumy's suggestion I did go back onto the Hydroxy 3 weeks ago because it's the least toxic of the DMARDs and it hadn't given me any side effects when I took it for a year at the same time as the MTX. Also you don't need blood tests with it - just a yearly eye test and it is very rare for it to effect the eyes, and rectified by coming off it I'm told.

I feel loads better for being on it now - I'm not in any pain and the swelling in my feet seems much better. Might be worth a try if you are looking for a DMARD that doesn't usually cause side effects and does seem to work for many with moderate RA. It's also a first line drug for Lupus. Anyway I certainly won't be going back on Methotrexate ever and am hopeful that the Hydroxy will be enough for me but if not I'll deal with it as and when. Great not to have to have blood tests too. Worth a thought? :areindeer: Good luck!

Neilorangepeel

Thanks Mat48. I'll look into that. My liver readings were always too high as well.

Mat48

Well I'm sure its working brilliantly for me Neil. I can think of no other explanation for how well I'm feeling just now. Even my chronic hives have gone away and I currently have hardly any RA pain at all. It has to be the Hydroxy I feel! :hoho: