specialist nurse/methotrexate

salamander

I've got an appointment with the above in a couple of weeks. My rheumy said it wouldn't come through until after christmas. I will be starting on methotrexate, I think, don't want to have it before the holidays.

Can anyone tell me what to expect from this appointment? I am slightly panicking with the reality of having to start this drug. Also, have high liver enzymes and have fatty liver from steroids. I've heard that mtx can also give you a fatty liver. Would this be enough for rheumy to put me on something else instead? I'm really upset today with this letter arriving.

tkachev

My nurse is lovely. She just goes through questions about how I amfeeling with different joints. She will answer any questions or concerns you have, especially with new medication.She will want to monitor you so you get the most effective treatment.
I guess you are worried about starting methotrexate.You can wait until you see the nurse if you choose.She can then talk you through any concerns.
I found methotrexate worked quickly for me so you might find it helps you cope with Christmas.But you must do what feels good for you.It can make you feel sick which wouldspoil the holiday.It can be a balance between pain and side-effects sometimes.As many people know on here I have scrambled egg on toast before taking my methotrexate and this has really eased my nausea.
Hope this helps.Any more questions fire away as we are here to help each other.
BEst wishes
Elizabeth

annie_mial

Hi Sally, we've chatted before.

I've been on steroids for a long time and six weeks ago I started methotrexate.
I am being monitored very closely both by my GP and my Rheumy - seeing the Rheumy again next week.
So far, absolutely no additional problems. No discernable side effects, apart from being more tired, but that happens anyway, so I must be one of the lucky ones.
I was very, very reluctant to start taking it but when it all boiled down I really had no other options.
I can't say I'm having any less pain, but I didn't expect to this early. What I can say is that I feel a whole lot better in myself; whether that is because I now feel that some progress is being made, or whether that is the MTX I don't know. My hubby has noticed the difference, though, and he generally wouldn't notice if I coloured my hair bright green.
Hope this helps, feel free to ask me any questions.

Annie
x

salamander

annie_mial wrote:

Hi Sally, we've chatted before.

I've been on steroids for a long time and six weeks ago I started methotrexate.
I am being monitored very closely both by my GP and my Rheumy - seeing the Rheumy again next week.
So far, absolutely no additional problems. No discernable side effects, apart from being more tired, but that happens anyway, so I must be one of the lucky ones.
I was very, very reluctant to start taking it but when it all boiled down I really had no other options.
I can't say I'm having any less pain, but I didn't expect to this early. What I can say is that I feel a whole lot better in myself; whether that is because I now feel that some progress is being made, or whether that is the MTX I don't know. My hubby has noticed the difference, though, and he generally wouldn't notice if I coloured my hair bright green.
Hope this helps, feel free to ask me any questions.

Annie
x[/quote

Hi Annie, thanks for that. I may be lucky too but am going to try and put it off until after Chrimbo. Got my Dad coming and big family get together - my Mum died in Sept and I think this holiday is going to be hard. That is enough for me to deal with right now. Also, as am on steroids I am not in too much pain, so am kidding myself I don't really need the other drugs. Tricky. I might drop down on them for a few days and see what happens. But it helps to hear some positive things about Mtx. Might get back to you on this after I see the nurse. Thanks. S

salsal

whilst mxt does seem to relieve the pain its main job is to stop/reduce the damage to your joints. taking it prior to bed means you sleep through the worst of any side effects if you are unlucky enough to have any. the nurse will not make you start taking something untill you are ready. hope xmas is not to hard for you without your mum bless her x

salamander

salsal wrote:

whilst mxt does seem to relieve the pain its main job is to stop/reduce the damage to your joints. taking it prior to bed means you sleep through the worst of any side effects if you are unlucky enough to have any. the nurse will not make you start taking something untill you are ready. hope xmas is not to hard for you without your mum bless her x

Hi Salsal, just saw this post looking for tips for taking mtx. Thanks for your thoughts. Am starting it today - gulp! Am really nervous and expect to feel sick tomorrow! Hope not. x

salamander

collywobble wrote:

Hi Sally

Yes, it's me again!!! Just saw this thread, and wanted to say good luck starting the MTX tomorrow. I've been on it a few months now, and I noticed the effects almost immediately. And, like many others, hell was going to freeze over before I started taking it!!! I resisted it for months. I did have a couple of weeks feeling a bit sickly now and again, and a few migraines, then it stopped. A couple of weeks before Christmas, I had another couple of migraines, so the rheumy nurse said stop it for a couple of weeks, then start again. I've always been prone to migraines anyway, and when I saw the rheumy last week, he said it's VERY unlikely they were caused by MTX (headaches maybe, but not migraines). Anyway, I'm back on the MTX now, and so far so good. I never thought I'd say it, but I was relieved to start it again!!!! I had felt SO good for a few months, it was wonderful. I've got some tablets from my GP, should I get the nausea/migraine again, but the rheumy said this often disappears anyway. So at the moment, I regard my MTX now as a bit of a life saver - it got me driving again, cooking, walking my dogs further, in fact as near "normal" as I could wish for. No more nightime/morning pain and stiffness - I was jumping out of bed in the morning!!!

So, good luck with it Sally. Let us know how you're doing, and stick with it if you can.

Best wishes,
Lynn xxxxx

Hi Lynn, it's really great to hear all this. I'm about to take it just now and feel reassured. The only confusion is when to take it. The leaflet says an hour after a meal, the nurse said with food and the pharmacist said with nothing at all!!! So, I've hedged my bets, had a snack and will wait a little while. It sounds as if you were really incapcitated by your arthritis. Because I'm on steroids I am not bad so still doubt the need to have it. Though I must admit, whenever I drop down to below 5mg of steroids everything starts to freeze up and hurt. My consultant hasn't prescribed mtx lightly so I really should trust his judgement and in the summer, when I first got symptoms, I simply couldn't move and certainly don't want to get back to that!
I'll you know how I get on tomorrow and thanks for the support, it's invaluable.
love Sallyx

annie_mial

Hi, Sally, just seen this! I have now been on MTX for more than two months and I still seem to be tolerating it well. I will be up to 20mg next week.

The first night I took it, like you I was nervous and confused, I took mine with a substantial snack at tea time, I've had few problems and so I've left it like that.
Then I spent all night waiting to explode!

I am so glad I did it. I am already taking fewer painkillers than before, so I am hoping it is beginning to work already, but will see how it goes, of course.

Annie
XX

salamander

annie_mial wrote:

Hi, Sally, just seen this! I have now been on MTX for more than two months and I still seem to be tolerating it well. I will be up to 20mg next week.

The first night I took it, like you I was nervous and confused, I took mine with a substantial snack at tea time, I've had few problems and so I've left it like that.
Then I spent all night waiting to explode!

I am so glad I did it. I am already taking fewer painkillers than before, so I am hoping it is beginning to work already, but will see how it goes, of course.

Annie
XX

Hi there Annie,
Well, taken it at last! Feel a bit sick but not too bad, though only took 5mg for first dose. So far so good........
xx

lindalegs

Hi Sally,

I've been on Mtx for 18 months now. For me, it's been a brialliant drug and, like Lynn, I noticed improvements straight away. I did get headaches and sickness at first but these did settle down and now I have no side effects at all. Sickness can be helped by antimetics from your GP, if necessary. Your bloods will be monitored very regularly, at first, so any changes in your liver will be noted. I only have to have bloods done every three months now.

Incidentally my Rheumy dropped my dose from 12.5 to 10mg per week because I was doing so well on it.

I take mine straight after my breakfast on Tuesdays because I like a drink of wine at the weekends.

Hope you feel the benefits very soon.

Luv Legs

salamander

thanks Legs and Lynne! I've felt fine all day, just a little queasy but nothing too bad. Am only taking 5mg for the first dose for some reason then it goes up to 7.5. It's a a relief to have started it, to be honest. Perhaps it will get this disease under control. I dropped my steroids down to 2.5mg a couple of days ago and I'm much worse so obviously the right decision to go on mtx. All your support is a great help, less of a journey into the unknown! Thanks again everyone and I'll keep you posted!
love S
xxx

annie_mial

Hi Sally, just caught up with this, so glad you haven't exploded!

I did start on 7.5, but I believe the need was there to get me on it asap. Had a funny blood test result for the first time, but I'm more puzzled than worried about it (I've put a thread up for it).

Now that I am going higher it does seem to make me more tired the day after, but that's a small price to pay.

Hope I can start reducing the Pred soon, I've been stuck on 5mg for more than a year now, just can't get below without a gigantic flare.

Here's to 2010!

Annie
X

salamander

annie_mial wrote:

Hi Sally, just caught up with this, so glad you haven't exploded!

I did start on 7.5, but I believe the need was there to get me on it asap. Had a funny blood test result for the first time, but I'm more puzzled than worried about it (I've put a thread up for it).

Now that I am going higher it does seem to make me more tired the day after, but that's a small price to pay.

Hope I can start reducing the Pred soon, I've been stuck on 5mg for more than a year now, just can't get below without a gigantic flare.

Here's to 2010!



Annie
X

Yep! I'm with you there. Could hardly be a worse year for me.
Something about your post puzzles me though. If you are on 5mg of prenisilone and it controls your symptoms why the mtx? Is it just to prevent damage to the joints?
x

annie_mial

No. Been on Pred for far too long - have chronic PMR (Polymyalgia Rheumatica). Now have steroid induced diabetes, high blood pressure, depression and osteoporosis, among others. 5mg doesn't control the symptoms by a long shot, but I could exist on it - until we found I was cooking another inflammatory arthritis. Daren't go up higher and need to come off it anyway. Hence the MTX which amongst other things is a steroid-sparing agent. Suspect they will add in something else soon, but really feeling much better just now.

Annie
XX

salamander

annie_mial wrote:

No. Been on Pred for far too long - have chronic PMR (Polymyalgia Rheumatica). Now have steroid induced diabetes, high blood pressure, depression and osteoporosis, among others. 5mg doesn't control the symptoms by a long shot, but I could exist on it - until we found I was cooking another inflammatory arthritis. Daren't go up higher and need to come off it anyway. Hence the MTX which amongst other things is a steroid-sparing agent. Suspect they will add in something else soon, but really feeling much better just now.

Annie
XX

Blimey! You've got a lot on your plate. I hope it all works out ok. Will the steroid induced diabetes go back to normal once you are off them or is that something you're lumbered with now?
x

pols090607

hi sally,

really glad to hear things seem to be going ok on the mtx. like you, i have been reluctant to start as in my case i have two young girls to look after and dread the thought of the side effects. however, this thread has given me some more thought about going ahead and perhaps trying this drug sometime in the near future, i suppose all you can do is try and if it doesn't work out -stop ?!

thanks again and please keep us posted with it.

take care,

p x

annie_mial

sally36 wrote:

annie_mial wrote:

No. Been on Pred for far too long - have chronic PMR (Polymyalgia Rheumatica). Now have steroid induced diabetes, high blood pressure, depression and osteoporosis, among others. 5mg doesn't control the symptoms by a long shot, but I could exist on it - until we found I was cooking another inflammatory arthritis. Daren't go up higher and need to come off it anyway. Hence the MTX which amongst other things is a steroid-sparing agent. Suspect they will add in something else soon, but really feeling much better just now.

Annie
XX

Blimey! You've got a lot on your plate. I hope it all works out ok. Will the steroid induced diabetes go back to normal once you are off them or is that something you're lumbered with now?
x

It's something that will always have to be checked, and I will probably have some medication for the forseeable future, but already the sugar levels are dropping..........probably because I have maintained the 5mg for such a long time. Basically, yep, I'm lumbered with it, but things are looking better.

Annie

salamander

annie_mial wrote:

sally36 wrote:

annie_mial wrote:

No. Been on Pred for far too long - have chronic PMR (Polymyalgia Rheumatica). Now have steroid induced diabetes, high blood pressure, depression and osteoporosis, among others. 5mg doesn't control the symptoms by a long shot, but I could exist on it - until we found I was cooking another inflammatory arthritis. Daren't go up higher and need to come off it anyway. Hence the MTX which amongst other things is a steroid-sparing agent. Suspect they will add in something else soon, but really feeling much better just now.

Annie
XX

Blimey! You've got a lot on your plate. I hope it all works out ok. Will the steroid induced diabetes go back to normal once you are off them or is that something you're lumbered with now?
x

It's something that will always have to be checked, and I will probably have some medication for the forseeable future, but already the sugar levels are dropping..........probably because I have maintained the 5mg for such a long time. Basically, yep, I'm lumbered with it, but things are looking better.

Annie

Glad things are getting better for you. I'm not managing all that well on 2.5mg stds. MIght have to go back up to 5 just to get things working again but I don't want to much.
x

colinone

Hello, I'm not a fan of Methotrexate and think i may have had my last post removed
Colin

salamander

colinone wrote:

Hello, I'm not a fan of Methotrexate and think i may have had my last post removed
Colin

Can understand not being a fan of mtx but why has your post being removed?

annie_mial

I don't know why they would do that, remove your post?
There are a lot of people who have tried metho but have stopped for one reason or another, I don't suppose they are fans either. Guess at the moment I'm one of the lucky ones!

Hope you feel better soon, it's dreadful when you can't climb up the sides of the black hole.

Lots of love
Annie

joyful164

Hi.

Do not worry about taking MTX. It has been used since the 60s and I think, for me, the side affect are over-rated. Have only had a slight nausea a few times. Best time to take it is early evening, late afternoon. Are you having tablets or injection?
I have to come off tablets because my stomach was not releasing the drug properly. Also make sure you take your Folic Acid 24 hrs after your MTX. I take one folic acid every day except MTX day.

Also, are you on Omoprazole. Stomach Protection It helps

Joy

salamander

joyful164 wrote:

Hi.

Do not worry about taking MTX. It has been used since the 60s and I think, for me, the side affect are over-rated. Have only had a slight nausea a few times. Best time to take it is early evening, late afternoon. Are you having tablets or injection?
I have to come off tablets because my stomach was not releasing the drug properly. Also make sure you take your Folic Acid 24 hrs after your MTX. I take one folic acid every day except MTX day.

Also, are you on Omoprazole. Stomach Protection It helps

Joy

hi Joy, I took it late at night and had a bit of nausea the day after and upset stomach today. Am on Omepraxole. Folic acid 5 days a week as prescribed. I know the drug is well documented and I can't manage on steroids in any case. Thanks for your reassurance.
xx