Coming off treatment.

[anne999]

Since being being on treatment for the last 4 months i can honestly say i feel no better, infact the side effects of methotrexate make me feel worse, with mouth ulcers and rapidly thinning hair, bruising and still very tired all the time. I saw the nurse today and asked about a steroid injection as when i had one in june felt so much better for a few weeks, was told it wasn;t good to have the injection so denied it. After a discussion i made the decision to stop treatment with a view to possibly starting something which i would be able to tolerate better but have to wait for 2 weeks for a phone call before it can be discussed. Has anyone else had this issue and what other drug(s) have you tried......appologies for the long post !

[medway-lady]

Yes I've tried it twice and it did make me feel much better no upset tum but awful hair loss. The MTX was reduced folic acid upped and it did help but not by much. I had to wait for the MTX to leave the system before trying something else and I decided because the pain was so bad to give it another go, but again bad hairless. So I now am going to give Arava a go. Trouble is it could be the same but its worth the risk to find out if it work without the hair loss. My consultant is very good and I know MTX is good and does work well. I tried for a year though. The issue is hair loss and so fingers crossed it works if it doesn't then no idea what to do but joint damage is obviously a great worry. My RA is ok at the moment and does not hurt much but I know the steroid (I think it is) injections are limiting as bad in the long term.

I hope you find a medication that suits you I found taking the MTX in the evening was good advice with food no idea why and this new stuff it doesn't seem to matter. I have to get blood pressure checked tomorrow before starting taking it and honestly I wished I'd not read the patient info. I'll never learn! lol

[Jayne18]

Hey anne999 😊

It ain't fun is it?

Why do you have to wait 2 weeks before starting new treatment, is that your choice?

I'm not qualified or experienced enough to talk about any other options, as I'm new to treatment myself, and in fact I too am not tolerating methotrexate very well.

Each week the Rheum Nurse and I look at my blood results, which look like a line of unwinning lottery numbers, and she says "we will give it one more week what do you think", and after I roll my eyes, hold back some vomit and pick the 100th hair off my cardigan, I agree.

I'll be interested to hear how you get on!

For now, (((((((((gentle hugs))))))))))

J x

[anne999 in reply to Jayne18]

I think it's because the drug (methotrexate) stays in your system for 2 weeks. Don't know for sure if i will be starting new treatment, notused impressed when i was told all my bloods were normal as when she left the room i looked at the screen and saw that my CRP was raised, also when i spoke to the dr last time about the side effects she was quite rude and said you can stop treatment which makes me wonder if i do need it .....upset and confused.

[Jayne18 in reply to anne999]

Wowsers, they were rude weren't they?

No wonder you feel confused !

It's horrid when you are reliant on professionals that you don't feel you can trust.

Remember , it's their job to care for you. They need your help to do that tho, you need to talk to them, talk about your options, how you are feeling, let it all out with them honey, (write a list of things to say if you get a bit foggy) you will not be the first, and you are certainly not the last who is upset and may not be on the right meds.

If you feel you have a complaint, you can contact Patient liaison Services, who can help you go through the correct channels.

You are NOT alone, but you are in control of your treatment, and have the right to be helped as much as possible.

Good luck, I will be interested to hear how you get on.

J x

[kalel]

long story short but I had a lot of problems with the medicines that my Dr put me on. Eventually I started injecting myself with Humira and that worked for a while but then I started getting flare up again. I then tried another biologic and even though that kind of worked for me I was still having problems etc.

I am now seeing a vegan doctor and functional health practioner and I have found that doing these things have really helped me.

I hope you manage to find something that works for you. Good Luck.

[popsmith1874 in reply to kalel]

Yes I can relate this I had my appt on Monday with my reumy consultant and I was supposed to be starting biologics but instead she put up my Metz inject up to 25mgs from 20mgs and want to add in hyrax I also take sulfazalasine 4 times a day, I Also suffer angina and ended up in intensive care unit 2weeks ago because off breathing problems and I'm 100per cent sure it was the mtx as I've been having breathing problems since I started it in December , I don't think she was happy because I kept speaking up and I the consultation wasn't very good on her behalf because the doctors certificate had someone else's details on it I've slept on it a couple off days and I've decided I'm not going back on the Metz I had a injection so that will ride me over but if she doesn't put me on biologics I'm going to ask for a second opinion so the balls in her court. I phoned to tell them about them giving me someone else's details yesterday but I'm still waiting for phone call back

[farm123]

There are a number of other drugs that can be tried but unfortunately the wheels turn very slowly when changing sometimes due to the drug having to leave system and at others paperwork and red tape. Try nras or arthritis research websites for further drug info. Each drug needs to have at least 12 weeks trial to see if it helps. Farm

[medieval-ali]

I too couldn't take methotrexate and switched to Arvara or As it's referred to in the UK leflunomide. I have been on it years and am now in far better shape than when I first started it.

I hope it works for you. The Dr's don't like giving out too many steroids, they to carry a list of side effects.

Alison

[beauty96]

As far as I know these are all based on chemotherapy. Not surprised hairloss etc. But most times they do work for RA which is a difficult disease to manage anyway. All treatment is maintained to keep you as mobile as possible for longer. They haven't found a cure yet. Keep wishing but until then they can only manage the disease. It is a case of weighing up what is available and see if it works for you.

[Cagsie]

Tried sulphasalazine first, stopped due to tinnitus, then methotrexate added. I then started on a biological with no side effects.Tolerated methotrexate for a few years, collapsed a few times. I felt unwell most of the time and decided just before one Christmas to stop it. Wow felt like me again but joints were painful. Rheumatologist was unhappy I hadn't consulted them but I just couldn't take another methotrexate injection. Started on Leflunomide and have been great since apart from the odd flare. I am definitely not advocating anyone to just stop treatment, it worked out ok for me but might not for someone else. You do seem to be having a lot of problems but don't worry I am sure they will find something to suit you. I wish it all works out for you, good luck.

[Peze]

I came off methotrexate after a few weeks due to infection and have had no medication for years. Have you looked into Amy Myers Autoimmune Solution? There are other ways.

[Beverley-NRAS]

Hi Anne999,

Sorry to hear that it is taking a while to get your meds right. Unfortunately there is no one drug that works for everyone and so it can be a little bit of trial and error in the early stages to get it right. please do persevere with it though. I have put a link to our article on getting established on DMARD therapy for you to look at:

nras.org.uk/getting-establi...

If you have any questions please do not hesitate to get in contact with the helpline. Our contact details are:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

email: [e-mail]

Hope this helps

Regards

Beverley (NRAS Helpline)

[anne999 in reply to Beverley-NRAS]

Thank you.

[Maggie_May]

Hi Ann. I was on Methotrexate for a year and I felt awful for the whole year ! My family said I had changed, and I became very depressed with the hair loss. I came off it in Aug 2014 and was given Sulphasalazine, then in July this year I was also put on Arava. I was really worried about taking it and didn't actually start it until 6 days ago. I have been in so much pain for the last few months I thought I would give it a try, last night for the first time I woke in the middle of the night feeling with horrible nausea. I have also stopped taking the Amitriplyline and Meloxicam as I just felt like muzzy headed all day. I was told the same re the steroid injection, I had that twice and although it only worked for a couple of weeks it was still two weeks with no pain. I wish there were herbal medicines that worked I hate taking these drugs. I hope you get sorted out soon.

[Kazwilks]

Hi Anne

Welcome to the forum. I have recently been diagnosed with RA my consultant wanted me to take methotrexate but after reading so many horrifying side affects I refused to take it and asked if there was an alternative. I am now taking sulfasalazine I am only on week 4 so not sure if they are working I am told they can take up to 6 months to get into your system. Hope you get sorted soon x x

[Hidden]

6 months before feeling better? Sounds like one of the worst ones to go on. MTX. one of the worst I would ALSO REFUSE to go on, too. Amazing so much some patients would put up with. QOL is important when battling with a chronic condition and why go on a drug like MTX with multiple side effects to make you feel worse? Patients ought to speak out for what they need (less side effects, improvement of symptoms, QOL etc) and not what consultants want you to stay on regardless of side effects patients suffer from. Well, they aren't taking it.

[farm123 in reply to Hidden]

There is no easy way to work out which drug will suit someone and who will get side effects and most take at least 12 weeks to bring a significant change. It really is a balancing act as sometimes putting up with some side effects is better than coping without the drug and for some as time goes on the side effects can lessen. Everybody's reaction to drugs is individual as is this disease. MTX is a common treatment that many people tolerate well and generally one of the first tried. Unfortunately many consultants have their hands tied and have to follow their hospital protocols as to the order of drugs offered and the next stage of treatment can only be reached if certain steps have already been followed and then still have to be approved by their trust due to the cost. Farm

[Hidden]

Hi

Have you looked into Minocycline !

I am newly diagnosed and was offered Methx and refused.

I have been researching Dr Brown's Antibiotic Therapy which has few side effects and seems to work.

Check out " The road back foundation" for info.

Best wishes Pepper

[nomoreheels in reply to Hidden]

Has your Rheumy started you on the minocycline now pepper? I'm sure we'd be interested in an update, being a less common approach I mean.

[Hidden in reply to nomoreheels]

Hi

No! not yet but I am determined to try it , even thought of pretending I have acne and buying it on line.

[nomoreheels in reply to Hidden]

Have you thought this through properly? How would you explain that to your Rheumy team? Please do seek help with this, I'm concerned about you self-medicating with this med. You do know NICE has concerns about it's use, even for acne? nice.org.uk/advice/ktt11/ch.... How would you explain possible complications? Really bothered, how about talking to someone on the helpline? Maybe they could help you.

[Hidden in reply to nomoreheels]

Hi

Don't worry I won't do anything stupid, but weighing up taking 3x 100mg of minocycline a week, compered to the toxic poison they want to fill me with, is a no brainer.

I have looked at all the side effects and read every medical paper I can get my hands on and mino still looks the most promising, as so many people after two years of taking it go into remission.

I haven't read any outcomes on this site which matches that.

I believe people aren't offered Minocycline because we wouldn't make the drug companies and NHS contracts enough money, as we RA's cost lots and use their meds for the rest of our lives, what would the drug company do without us!

Sorry about the rant but the choice of what drugs we take should be ours and not the NHS's drug contracts.

You should really read "The road back" and you would be as angry as me.

Thank for concern Pepper xx

[nomoreheels in reply to Hidden]

Not for me thanks all the same. I'm one of those who the meds work for & I see my MTX as an antidote rather than poison because it's helped me be as near to normal as I was pre RD, compared to the me in 2008 anyhow! Obviously none of us would choose to take the meds we need to stop our body attacking itself but they're each registered & licenced for use with RD in the UK & our Rheumys, who are after all the specialists in their field have their reasons for the ones prescribed for each patient individually. Have you questioned if sulfasalazine could be an option for you? Being an antibiotic/anti inflammatory maybe it would be more acceptable to you. Obviously your Rheumy considered MTX the better option but maybe if you explain your resistance to it you could reach an agreement? You have a right to be consulted on the treatments but obviously only on the DMARDs as considered effective & safe by NICE.

You read the NICE evidence?