Refusing medication

As5567

My doctor wants to put me back onto Methotrexate and sulf at the same time, I have taken both of these drugs on their own many years ago....both did nothing for me other than cause unpleasant side effects. I have also had problems on meth in the passed with my liver so thats another reason why I'm unhappy to "give it a try". The problems I have had for meth are well documented in my notes at my old hospital but my new doctor doesn't seem bothered about them and isn't going to chance them up.

Does anyone know what can happen if I refuse to take these medications? Will I be refused treatment? I told her that I wasn't happy and didn't want to proceed with it, but she pushed and pushed and next thing I know I have the prescription in my hand.

I just wish that this new doctor would listen to me and prescribe the biologic recommended by my old doctor, before the infiximab fully exits my system.

dreamdaisy

I fear I cannot help much on this front (and I understand your fears) but not only has time moved on but your body has too: this time it could be a different outcome. You say you took them in isolation but not in tandem: that could be the difference. I know that we are closely monitored when taking these meds (a pain albeit a necessary one) and, in your shoes, I would give it a whirl - what about sulph tablets and injected meth? Has that been mooted as a possibility? DD

Sezeelson

No, they cannot stop treating you. It's against the law to refuse to help you simply because you refuse to take a medicine that has given you negative side effects.

I was prescribed meth when I started my Enbrel, I had good intentions to take it but was worried as I'd had some violent reactions before (been on/off it for 9 years). After the first dose, I knew it was going to be hell - I couldn't leave the house as I was so violently I'll, I'd fall asleep in the bathroom...

Needless to stay, I stopped it immediately. My doctor and gp where not upset in any way but, they are very supportive.

Good luck

elnafinn

Could you not try them for a short while although you suffered badly some time ago. Then, if you are not happy on them you can discuss again with your GP and perhaps suggest the biologic. If you do not try then you cannot really ask for what you really want. If you do, you have the argument that they give you terrible side effects.

Elna x

applerose

The way I look at it is I will listen to all the advice given then make up my own mind whether I take that advice. I told my rheumie that I didn't like the idea of taking the meth so he didn't push it. Said I was to ask if I changed my mind. It might be an idea to try the two together. You never know, it might work.

As5567

Well I have had a long hard think about it tonight and I've still not been able to make any decision yet.

I have my Dissertation to submit next week, then an hour long presentation, 5 essays and a lot of revision to prepare for my upcoming final year exams. I've yet been able to decide is it better to take a risk and try the medications and deal with any side effects, do I delay taking these medications until Easter break or do I just continue with no medication until mid May.

This is also another reason why I wanted the alternative TNF drug, I seem to be one of the lucky ones who tolerate them well and rarely get any side effects. I also think its the best way forward but my current doctor doesn't seem to think so.

salamander

I refuse point blank to take methotrexate again. I was so ill on it. If you've tried two dmards you are entitled to be assessed for an anti tnf. (did you say you'd been on one before?) I would trust yourself.

toady

I can't see why your doctor is being so unbending about the anti-tnf, when one doctor has already mooted it. I moved to anti-tnf after 2 failed separated dmards, no suggestion I must try combination therapy first; is it about NICE guidelines, or different trusts having different policies, or purely a cussed doctor? I can understand that they want you to prove whether combination therapy would work but as one doctor was ready to move you on then it's obviously not a hard and fast rule, and others here like myself have not been made to try what you are being asked first.

I know they are being unhelpful about chasing up your records but that is one thing you can insist on surely? I would have thought that one doctor's recommendation would carry weight even if you have moved hospitals but that's naive of me apparently. Hope you can make a decision but I would hate you to be strongarmed into something. At worst I would second DD's suggestion of subcut meth. My first hospital made it fairly plain they would not monitor me if I refused mtx but whether that was an empty threat I didn't hang around to find out. All the best xx

DebbieT

Hi,

I honestly don't 'think' they could refuse to treat you but that doesn't mean they'll give you the treatment ure previous Dr intended either!!

In ure shoes & with all uve got to try & fit in work wise, I'd honestly give the combination therapy a go!! These things can sometimes work well together with fewer side effects than they give you individually.

If they're low-ish starting doses & ure monitored well you should be fine. At least then, if you do get side effects that make keeping up with ure course work impossible, you can stop it & in all honesty tell ure new Dr you gave it ure best shot but the side effects were unbearable.
But you never know, it could be just the one combination that works really well for you.

Wot have you got to lose?

Good Luck

(((Hugs)))

Xx xX

As5567

They probably wont request my notes as they are with another health board, so its probably to do with money. I have already expressed my concern about them not having any notes on me. What about all of the MRI scans, x rays, bone scans, blood tests and so on. To make things even more difficult she clearly doesn't understand my condition and has already began to mis diagnose things such as the pain in my feet which is well documented in my notes.

My only guess is that they want me to try the cheapest therapy first. The TNF drug that I was recommended would need special funding as its not recommended by NICE, this was not a problem at my old hospital for Infliximab, ritiximab and Humira.

I have also decided to not try this combination of medications based on a few reasons:

After some researching I found out that sulfasalazine is no longer even recommended as treatment for AS as clinical trials has shown it doesn't reduce the disease activity enough to slow down/prevent progression.

It takes on average 16 weeks to build up enough of the drug in the body for it to become fully effective, 4 months is too long for me to be messing about with something that is unlikely to even work.

I really don't see the side effects from both meth and sulf being any different this time round, when I began taking meth last April I felt very sick for a long time, after coming down from 12.5mg to 7.5mg after my blood results came back bad the sickness side effects went away. So a higher dose of meth is most likely going to bring those side effects back and probably the elevated blood results.

The sooner I get to see another doctor or better yet sent back to my old doctor the better. The will be based on a decision made by my local community health council.

DebbieT

Well uve certainly made valid points & put a great deal of thought into all of the reasons

Can I ask, apologies if uve explained this & I've missed it.
Why did you move hospital/Rheumy & is there any possibility of moving back?? It would seem the most simple & logical solution.

Xx xX

As5567

To cut a long story short, I was forced to move to my "local" health trust under new rules set out by the Welsh government. The letter they sent me said how services would be much more local, treatment etc would be the same and that the reasoning for it was to make a better NHS for everyone.

In my opinion the only reason they have done this is to make the NHS in Wales look like its running better than it really is.

I now have to travel up to 20 miles further for treatment, my new doctor isn't very good, the helpline number I have been given only operates on a Friday, my old hospital operated the helpline 5 days per week and I'd get a response the same day or next day at the latest. There is no AS clinic or doctors that specifically have an interest in the disease, and a host of other small problems such awful parking, no medical notes, no AS physiotherapy sessions.

I have written to my local Community Health Council which is meant to be an independent ombudsman type service investigating patient complaints. Hopefully they will be able to sort something out.

I don't feel safe with this doctor either, she has already began to mis diagnose things such as my feet. At my first appointment she asked to examine me and I mentioned that I was due to see the feet people again soon for a new pair of insoles. She then told me that the pain caused in my feet was most likely caused by incorrect footwear. I purchased a new pair of shoes some time ago based on recommendations from the foot people, the main cause of the paint in my feet/ankle are is down to a complication of AS where the ligaments/tendons become inflamed, she would know this if she made the effort to get my notes.

The whole situation is a mess at the moment.

barbara12

Hello As5567
I am sorry to read this,its bad enough without all the changes and traveling on your shoulder, I was going to say what Elna said about giving both meds a trial...I know nothing of these meds so cant really offer anymore advice, but I do wish you well with whatever you decide and good luck with the essays, and please let us know how you get on.

DebbieT

Omg wot a complete mess!!! :shock:

I'd write directly to my MP, I don't know wot ure equivalent is, sorry!! I've had a lot of feed back & useful help from mine which has been invaluable even if it's just been to put my mind at rest. I fully understand you need more than comfort at this stage tho.

I have resorted to ringing the Houses of Parliament too. My husband had a suspected cancer on his tongue & due to undiagnosed heart problems they kept cancelling his surgery. It was out of fear, anger & frustration that I rang but he had his op the following week & the MP's secretary rang the week after to see if more could be done I'm pleased to say it wasn't cancer btw

Don't give up!!!

((((Hugs))))

Xx xX

salamander

I recently had difficulties after my consultant retired and I was moved over to a new one in the same hospital. She more or less said I had no active disease and I was taking 'toxic' drugs unnecessarily. I walked out of that appointment and have a different consultant who has run a battery of tests that give a true picture of what is going on (which is basically what I thought I had.) My point is that it can be really difficult to move from one doctor to another as they don't necessarily agree with a previous diagnosis. I was very upset, like you are, and made a formal complaint - hence all the tests etc. I hope your complaint will have a good outcome but, in the meantime, stick to your guns. You know your body better than anyone.

As5567

DebbieT wrote:

Omg wot a complete mess!!! :shock:

I'd write directly to my MP, I don't know wot ure equivalent is, sorry!! I've had a lot of feed back & useful help from mine which has been invaluable even if it's just been to put my mind at rest. I fully understand you need more than comfort at this stage tho.

I have resorted to ringing the Houses of Parliament too. My husband had a suspected cancer on his tongue & due to undiagnosed heart problems they kept cancelling his surgery. It was out of fear, anger & frustration that I rang but he had his op the following week & the MP's secretary rang the week after to see if more could be done I'm pleased to say it wasn't cancer btw

Don't give up!!!

((((Hugs))))

Xx xX

I'm glad to hear that some MP's actually do their job, my local MP is of some use for other issues but in this situation I'd need to get in contact with an assembly member. Which I have done and it was a total waste of time. I'm glad to hear that your husband didn't have cancer in the end but its awful to hear the trouble you have to go through just to get the right tests done.

As5567

salamander wrote:

I recently had difficulties after my consultant retired and I was moved over to a new one in the same hospital. She more or less said I had no active disease and I was taking 'toxic' drugs unnecessarily. I walked out of that appointment and have a different consultant who has run a battery of tests that give a true picture of what is going on (which is basically what I thought I had.) My point is that it can be really difficult to move from one doctor to another as they don't necessarily agree with a previous diagnosis. I was very upset, like you are, and made a formal complaint - hence all the tests etc. I hope your complaint will have a good outcome but, in the meantime, stick to your guns. You know your body better than anyone.

This more or less echo's what my new doctor has said, she even went as far as saying I have no arthritis in my large joints. Xrays done not so long ago say a totally different story. And yes it is very difficult to move from one doctor to another after building up a good trusting relationship for more than half my life, he knew me and my condition very well and in my eyes that's far more valuable than some stupid new rule that forces me to chance doctor and hospital. At the bare minimum I want to be seen by a new doctor which has knowledge of my condition. I will be calling the not so useful helpline in the morning and leaving a voice mail explaining my decision, hopefully I will get some sort of response sooner rather than later.

I'm also glad that you were able to chance to a doctor who sounds a million times better, hopefully I will have the same result!

salamander

Best of luck with your decision. You will get there in the end but it is a horrible time to go through. I decided it was a good thing in the end as it forced the hospital to relook at my condition and I will be getting the appropriate treatment again.