Methotrexate side effects

susie51

Hiya one and all I have been having a really rough winter!! I dont think I have had more than 10 days without a snuffle or a full on cold, got very run down physically and mentally. This moved on to anxiety and paranoia about medicines and what they are doing to me.....and I gave up the methotrexate for 6wksor so before joints started to flare and I finally went to Drs. This wasnt very statisfactory, to be fair I made an emergency appointment, instead of a 20 minute one, which was at the end of the day and he obviously didnt have time and was tired himself (I dont know how they do it day in and day out, listening to peeps problems, it would get me down!) So now I am reaching out to all my fellow sufferers just to get a measure of things, so here goes
1. Is this kind of feeling 'not well' just a trade off for not being crippled by RA

2. Does any one else live abroad for any length of time and if so how do they manage with meds and blood tests

3. Any comments/tips/info from peeps who have been on methotrexate long term would be appreciated

meanwhile spring is here in sunny Wales and I have been pottering in my garden and feeling bit better. Cheers Susie

kathbee

HI Susie

I have been on MTX for around 9 years now.

First off was oral MTX, then a few yrs later I
went with the MTX injections, then back to
oral which I am still on. My current dose
is 12.5 mgs along with Leflunomide, another
DMARD and various other things for RA.
Unfortunatly for me I do have some 'crippling'
due to the RA and OA though as well as the
exhaustion and pain aspects.

I dont feel I have had side effects as such, but I
am plagued by coughing and a
what feels like a continual cold.
Actually tormented would be a better description
as it drives me mad.

But having had lots of checks with ENT and chest
clinic no one can pinpoint any cause.

So cant say if its down to the meds or not as
my family history is one of asthma problems, so
some of my problems can be related to that.

Have only been abroad for a month at a time
so manage my medication ok for that duration.
Not sure what would happen if someone
wanted to be away for months on end.
My GP would probably be fairly accomodating but
dont know what the rules and regs of handing
out large amounts of drugs are.

Hope things improve for you.

Kath

alibongo

Hi Susie

I haven't been on methotrexate for as long as Kath. I've been on it for about 18 months now and has gradually increased to 20mg.

The first winter I took it I was constantly under the weather with coughs, colds, sore throats and because I suffer with coldsores those as well. Thankfully this winter has been different I have not had anymore colds than I used to before so don't know if my body has adapted to it.

I do worry though about taking these strong meds especially as I am on plaquenil as well now. I am 42 so potentially have decades in front of me to take them. But because my joints were damaged so much during the six months before I was diagnosed if I did stop taking them I don't know how much further damage would be caused.

It's not an easy choice to make but I am just making sure I have my blood tests every month and hoping some clever scientist discovers something better soon.

Alison
XX

kathbee

HI Alison

I so agree with you saying about
it not being an easy choice.

We are in the catch 22 situation arent we.
Dont take them and face the consequences
or do take them and put up with the effects
on our bodies.

I have tried without MTX on a few occasions
but always have to resort to going back to the
darned stuff.

We can only live in hope that soon
some scientist will sort it all out.
Or is that more of wishful thinking and a fantasy

Best Wishes

Kath

jackie1955

Hi,

I too was very worried about MTX and its side effects - but then I would never take an aspirin unless absolutely necessary!

I had lots of information from reading posts on here about MTX, some good some not-so; but I definitely don't want to end up with twisted hands/feet if I can avoid it!

In the end I accepted it by thinking: I smoked for years knowing the consequences that could have, dicing with my life puffing away for pleasure :shock:
So, surely, I can risk taking a prescribed drug - one which will hopefully have beneficial results for me - whilst being carefully monitored for any undesirable effects?

Jackie x

susie51

Thanks for all replies I guess colds are definitely a side effect some of us have to put up with!

Hi KathyB
Just in case it makes you feel any better I too have the breathlessness and endless head cold symptoms; sneezing, runny nose, painful sinuses and tickly cough! This is what really freaks me out, it starts to go away and then I do something like be outside in the garden for longer than usual and bam its back with a vengeance. I am starting to be paranoid about my health generally!

debsmartin

Hi

Just been reading all the posts about colds and runny noses as I also take mtx and leflunomide and wondered if anyone else had had there flu and pnuemonia jabs. I was a bit wary of even more injections but both have really helped me. In fact my o/h and the women I work with have both had really bad colds and touchwood I have escaped both - don't know if its a coincidence or whether the jabs have helped

debs

susie51

debsmartin wrote:

Hi

Just been reading all the posts about colds and runny noses as I also take mtx and leflunomide and wondered if anyone else had had there flu and pnuemonia jabs. I was a bit wary of even more injections but both have really helped me. In fact my o/h and the women I work with have both had really bad colds and touchwood I have escaped both - don't know if its a coincidence or whether the jabs have helped

debs

Yup had those!!

livinglegend

debsmartin wrote:

Hi

Just been reading all the posts about colds and runny noses as I also take mtx and leflunomide and wondered if anyone else had had there flu and pnuemonia jabs. I was a bit wary of even more injections but both have really helped me. In fact my o/h and the women I work with have both had really bad colds and touchwood I have escaped both - don't know if its a coincidence or whether the jabs have helped

debs

Had both jabs for flu and pnuemonia.

Last time I was at the docs, a woman had a coughing fit into her empty hand even though she had a tissue in the other one, then wiped the same hand over the door handle. As cold viruses last for 72 hours, how many were infected by this?

Open a door or even using a supermarket trolley, who used it last and sneezed and coughed into their hands. May I suggest that people use an anti-bacterial hand gel on a regular basis especially before going out. I rarely get colds now, compared to a few, (pre gel), years ago.

Joseph 8)

debsmartin

susie51 wrote:

debsmartin wrote:

Hi

Just been reading all the posts about colds and runny noses as I also take mtx and leflunomide and wondered if anyone else had had there flu and pnuemonia jabs. I was a bit wary of even more injections but both have really helped me. In fact my o/h and the women I work with have both had really bad colds and touchwood I have escaped both - don't know if its a coincidence or whether the jabs have helped

debs

Yup had those!!

Hi Susie
Guess I've just been lucky, or knowing my luck I'm just about to start with a cold now scary to read how long the germs hang around.
debs

alison67

Hi Susie,
i've been on mtx since last year but was also on it for 18months a few years back. Took myself of it as continually worried about it's side effects (still do a little).
However, i've decided to plod on with it as it helps me tremendously. The thing i found out was, if i stayed wiyhout any drugs, the inflammation in my body would obviously worsen and could clog arteries!!!
I do get a few colds and did'nt realise i could have the flu jab so i'll be doing that in the winter. My advice would be to continue on with the mtx if it helps.x

susie51

livinglegend wrote:

debsmartin wrote:

Hi

Just been reading all the posts about colds and runny noses as I also take mtx and leflunomide and wondered if anyone else had had there flu and pnuemonia jabs. I was a bit wary of even more injections but both have really helped me. In fact my o/h and the women I work with have both had really bad colds and touchwood I have escaped both - don't know if its a coincidence or whether the jabs have helped

debs

Had both jabs for flu and pnuemonia.

Last time I was at the docs, a woman had a coughing fit into her empty hand even though she had a tissue in the other one, then wiped the same hand over the door handle. As cold viruses last for 72 hours, how many were infected by this?

Open a door or even using a supermarket trolley, who used it last and sneezed and coughed into their hands. May I suggest that people use an anti-bacterial hand gel on a regular basis especially before going out. I rarely get colds now, compared to a few, (pre gel), years ago.

Joseph 8)

Well that sounds like an idea, never thought about this. It is hard though as I have four grand kids all building up their immune systems and going to school picking up everything that is going around :roll: perhaps I should wipe them down when they come visit

helpful

debsmartin wrote:

Hi

Just been reading all the posts about colds and runny noses as I also take mtx and leflunomide and wondered if anyone else had had there flu and pnuemonia jabs. I was a bit wary of even more injections but both have really helped me. In fact my o/h and the women I work with have both had really bad colds and touchwood I have escaped both - don't know if its a coincidence or whether the jabs have helped

debs

I had the flu jab and was ill with the flu for a week afterwards but since then - november I havent come down with anything so maybe it helps.