What to expect from Methotrexate...

tjt6768

I think all these diseases make up their own rules hun lol.x

dreamdaisy

As humans we have devised moral rules but when it comes to the vagaries of disease? We flatter ourselves we can control so many aspects of our lives but this disease (in all its forms) defeats us because it's not affected by the human construct. DD

LemonMerigue

tjt6768 wrote:

I think all these diseases make up their own rules hun lol.x

Agreed.

AnnaMilton

Even my doc advised me that DD, to stop meth in case of active infections. My blood work is scheduled every fortnight as of now, which may later shift to monthly basis, if doc feels meth is the right one for me fingers crossed!!!. He said, this is important to make sure the Methotrexate is having no harmful effects on my liver or blood counts :? .
Stay away from alcohol as much as possible, lemonmerigue. My doc just allowed 1 drink per week or less .

LemonMerigue

I haven't had alcohol since September so that shouldn't be an issue. I stopped drinking when they put me on tramadol.

I'd kill for some tramadol this morning .

jgledhill

I found MTX ok initially when I was on a lower dose (4 x 2.5) but when it was increased to (8 x 2.5) I felt sick quite a lot of the time. I said to the doc and he offered me the injections instead which did actually stop a lot of the sick feeling.

I also got told as long as I gave a full 24 hours after taking the MTX that I could then take the folic acid which after that, usually also helped with the side effects a bit.

My doc also said with alcohol, it was ok to drink within the daily recommended limits and not to kick the ar$e out of it and they'd monitor my LFTs closely in any case and would direct me to avoid alcohol altogether if it was causing problems. Does seem to be a lot of different advice from the docs about that! I did see somewhere that the original advice about avoiding alcohol came from a study of patients in the 50's where a number of them developed cirrosis but conviently forgot to mention they were all heavy drinkers way before they'd started on the MTX! Anyways, would take your doctors advice on the subject in any case

LemonMerigue

I'm just making the whole alcohol situation easier by just avoiding it. It's really not worth any kind of risk.

I've been on it for a good month now and I can honestly say the only difference its made is to some parts of my skin. My scalp is still plaque city, as is my forehead. My joints are no different and my gp will not give me anything other than 15/500 cocodemol and frankly, as far as pain relief goes they're as useful as a chocolate tea pot is at holding tea.


Very very grumpy at the moment.

dreamdaisy

I am not surprised you are grumpy. I don't know what effect the meth has on my skin because I think the sulph is the better controller but, as I have said before, it is not the biggest of my troubles. I do know that the meth and humira are controlling the PsA because my bloods are wonderful: the fact that I am not is neither here nor there.

Your GP is living with theory, you have the grim reality. I manage on between four to six cocodamol per day but they are 30/500. We need that degree of very temporary relief so I hope you can argue your case for the stronger version.

It's not easy but the better times (as long as one is willing to re-define better) will arrive in due course. DD

LemonMerigue

I went back to my GP to ask for something worth taking to ease my aches and pains and he gave me codeine. However, he recommend I only take it at night. Sigh. He only gave me enough for one month as well so I'm saving it for when I'm in a real bind. I will definitely be having a word with my consultant about this. I appreciate drs have their own specialties (mine happens to be an eye specialist) but this is just silly.

At least if I "abstain" my tolerance will decrease and then they'll work better when I do take them. Silver linings and all that.

They also messed up my meth prescription. I had to spend several hours the other day tracking down my consultant/gps shared care letter because they wouldn't issue my prescription as there was no record of me needing it! Lots of walking and arguing. I'm sure its the job of admin to be delivering patient letters and such? I should charge the NHS for my time.

dreamdaisy

Oh dear, this SNAFU sounds very familiar to me. I missed a flu jab one year because my GPs' surgery had no record of me taking meth because it was prescribed by the hospital. This was despite my taking sulphasalazine (repeat filled by the surgery) which is also a DMARD. I now ensure that everyone knows what I am doing and at whose request.

Our time is rarely valued by NHS staff: I have lost count of the number of 9 a.m. appointments I have had with my consultant where she waltzes in at 9.20, has a coffee and a natter with other members of staff and then tries to get me out of the door after ten minutes because she is running behind. At least I have the courtesy to turn up on time: I reckon the one time I don't will be when she does and I lose the appointment.

I appreciate your thinking that not taking the pain relief until it's needed may help it work better. As a seasoned arthritic I have found that the dullers are more effective if I take them at regular intervals of between 6 and 12 hours. This leaves some leeway for the truly rougher times; my dullers of choice are 30/500 cocodamol. DD

Dizzy

I've been on MTX for about 4/5 months and feel much better, well 5 days out of 7. I'm on 4x 2.5mg as I didn't want two sets of injections (also on enbrel.

I'm finding I feel horrid on a Monday evening after taking it and then all through Tuesday I feel off and it's getting me down.

I mentioned this to another doctor this morning (in conversation) and they said the injection might be better.

Now I can't really take to my rheumatologist so want to be pre informed about things as much as I can, so can I ask if anyone else finds the injection has less in the way of side effects?

Also is it given via an injector pen like enbrel? I'm pretty useless with syringes and things.

stickywicket

I use tablet meth but, yes, I know from on here that the injections are usually given in an attempt to avoid side effects. I don't know what type of device is used. Maybe if you ask via a new thread others who do know will be more likely to see it.

LemonMerigue

Nearly 8 weeks in and it's not doing anything. The effects it was having on my skin has all but worn off and I'm back to being a flaky, scabby mess. I'm still in daily pain. I feel so disgusting and useless. I'm so desperate to feel normal. MY GP surgery has changed how you make appointments and I can never seem to get one as I don't ring at the right time or something equally ridiculous.

When I take the meth on a Monday morning I feel fine until around midday - 2pm but after that I feel very sluggish and tired (more so than I normally would). On the Tuesday and Wednesday after taking it I just feel weird...for want of a better word. The only way I can describe it is that it feels like I'm watching myself live my life and I'm stuck in my head (that probably sounds crazy but that's the only way I can think to describe it). I did think at first the odd feeling was just down to being tired but it was consistent with taking the meth and consistent in the length of time it lasted. By Thursday I usually feel normal again.

dreamdaisy

Oh dear, this doesn't sound good, I am sorry. For what it's worth these are my thoughts.

Firstly change the time you take your meth to the evening: this will give you the chance to sleep through the first few hours and that may lessen its side-effects. Take it with food too, so it doesn't hit an empty tummy.

Secondly, it isn't three months just yet, so things might yet improve: our disease does not like being challenged.

Thirdly, please contact your rheumatology unit to let them know how things are: if you are taking folic acid it may be time to increase that but they are the ones to advise.

Fourthly, none of the DMARDs I have taken have ever reduced my pain so please take any dullers you can to help things along - a steady drip-drip of those is better than going hell-for-leather when things are really bad.

I should remember but I'm afraid I don't :oops: are you taking anything else apart from meth? That is a DMARD but are you also taking an NSAID? DD

LemonMerigue

I've always made a point to take it with food. Usually washed down with some green tea. I currently take 5mg of folic acid a week. I only get given 4 tabs per prescription. I will try taking it in the evening today and see how it goes.

I don't know how to get in touch with my Rheumatology team. I don't have a number. I will have to phone around for it I guess.

Unfortunately the only other pain relief I have been given is Cocodemol and Codeine sulphate. My resistance to both have becoming scarily high. The last time I saw a GP he said he didn't want to put me back on the Diclofenac (which was the only NSAID that actually worked out of the many I had tried previously) because - in his own words - didn't know how it would react with the meth. I see my Rheumatologist mid June so I can probably hang on until then like a complete martyr because an appointment with my GP is unobtainable and when I do get a chance to see him he's rather unhelpful.

stickywicket

You could certainly take more folic acid if your rheumatology team OKs it first. You should have a rheumatology or methotrexate helpline number to ring. If not I'd ask why not when you next see the rheumatologist.

Your GP is right not to prescribe an NSAID (such as diclos) with meth. NSAIDS and DMARDS should only be used together with caution and, as you're quite new to meth, he'll want to leave that one with the rheumatologist, especially if you don't have a helpline to call.

Have you actually been prescribed codeine and cocos to be taken together? It doesn't sound right. You can always ask for a change of pain meds but, unfortunately, the term 'painkiller' is a misnomer with arthritis.

dreamdaisy

GPs do not know enough about our conditions or our meds - they are not specialists. He is quite right to leave that decision to the person who knows best - I have diclos for occasional use (prescribed by my rheumatologist) but my GP wants to take me off them. He'll be lucky. It's good that you've been taking your meds with food so perhaps the time-shift may be more beneficial. Your rheumatology department number should be on the web page of your hospital's departments and / or in the phone book - it may also be on your appointment letters.

The only thing that reduces my pain is the dullers - the stronger they are the more I am removed from the pain rather than the other way round. I stick to the 30/500 cocodamols, I average around four per day and that leaves me room to manoeuvre when things play up (the OA is the usual culprit but the PsA has been having a snap despite the meds, simply because it can). I find it a useful feedback for when I need to stop an activity and have a rest.

This is a miserable disease and it can make us miserable people with its pain, demands, tiredness and battling the effects of the meds. We do not lead easy lives. DD

LemonMerigue

Sorry! I'm rubbish at explaining stuff stickywicket! My gp gave me Cocos to take during the day as I mentioned that straight up codeine (30mg) makes me a bit spacey. So he quite rightly told me to take the codeine at night time. He has given me 15/500 cocos on 2 separate occasions, but he was reluctant to put them on repeat. I do however have codeine on repeat but like I say, my tolerance for them is through the roof.

I tried to call to get an appointment to see my gp again today but was told all the morning appointments had been booked but there were some availablre in the afternoon and to call again at 1.30pm. When I called at bang on 1.30 they said all the appointments were gone but I could see a triage nurse if I was desperate.... I could cry.

LemonMerigue

I looked on my appointment letters etc for the number but its just the hospital main phone number. Its such a small hospital and it's all run out of a tiny outpatients department. My rheumatologist is a locum so he's only there every other Monday I think. I can probably pop in tomorrow to get the actual number.