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simon newman
02-22-2011, 02:13 AM
I have been on Pred for about 10 months and am now down to 13mg per day - but my WG specialist here in France has changed me to Methodrexate (10mg rising to 15mg pere week) starting this week (with an overlap Pred period.)

Can ayone help me with my apprehensions, which are mainly to do with the possible side effects - nausea, vomiting, hair loss etc - thanks, Simon

oaktreehill
02-22-2011, 02:17 AM
Hey simon..

Ive been on methotrexate since June 2010. Started on 15mg and now on a constant 20mg per week. I think I have been fortunate with it so far... I take mine on a Friday morning and do experiance increased tiredness on the following saturday especially. Occasionally I will feel a little nausea but never been a problem. Apart from that I have suffered a little hair loss - nothing that is noticable though. Just noticed from brushing and in the shower that more hair comes out that normal.

I did have one abnormal blood test result last August when I originally increased it to 20mg per week. I had increased liver enzymes and had to come off it for a few weeks to normalise the liver but apart from that nothing major. Hope everything goes well with you first dose.

Hammy8241
02-22-2011, 02:56 AM
Been on Mtx for over a year now on larger doses (both oral then injection)than you with no known side effects. . Some do have problems - like many things in life, whats is good for one may not be so good for others - hope you are in the former group.

simon newman
02-22-2011, 03:03 AM
Thanks for letting me know experiences - a problem shared and all that !!!!

simon newman
02-22-2011, 03:05 AM
Thanks for that - good to hear of your lack of side effects - Simon

Sangye
02-22-2011, 03:33 AM
Hi Simon, I was only briefly on mtx injections but didn't notice any side effects. (I was in pretty terrible shape already, so that data might not count!) I have noticed a trend on here-- people taking the injections say they experience fewer side effects versus the oral.

It's always scary starting a new drug.

simon newman
02-22-2011, 05:26 AM
thanks for this info, Simon

jtausan
02-22-2011, 01:43 PM
HI Simon,

I have been on oral Methetrexate for a year now. I started off at 10mg week but am now up to 20mg a week. I take mine on Saturday night at bedtime. When I first started taking it I got a really bad headache right away, but now that Ive been taking in for a while I might just get a slight headache. I have increased tiredness on Sunday's. That's why I take it on the weekends so as not to affect my work during the week. I am also on 10mg of Prednisone and honestly I think that bothers me more.
I hope that helps.
Jodi

JanW
02-23-2011, 01:14 AM
Hi, Simon: I am on 17.5 mg of mtx (no pred) and have never had a problems. Been on this dosage since last March. Hope you are the same It got my disease into remission by last summer and if I continue to feel so well my doc will start reducing at my next visit, hoping to get me med free.

malin
02-23-2011, 03:54 AM
I've been on oral MTX for almost 7 years now and in the begining I suffered some nausea, fatigue and so on, but I can't say for sure all of it was down to MTX since I was suffering so bad from Wegeners itself along with pred and other meds.

But I can def. say that I suffer some nausea from mtx, even now, 7 years later I still feel slightly ill the next day or so, but not as bad as it was in the begining. I haven't suffered any hair "loss" but my hair quality is def. poorer than what it used to be, a lot thinner and just generally worse...

Sangye
02-23-2011, 05:22 AM
Malin, I'm sure I've asked before but have your docs ever considered letting you stop the mtx?

malin
02-23-2011, 07:30 AM
Sangye,

My Rheumy here in the UK was considering it when I first met her but I keep having flares so it's not an option. If anything she is more likely to put me on ctx. She has asked me about it and I really don't want to, but if I have any new symptoms or anything, I'll have to go on something stronger, so getting off mtx is far far away!

coffeelover
02-23-2011, 01:03 PM
I have been on 6- 8 mg of Mexotrexate for two years now. I also take 10 mg of pred. The oral mexotrexate made me feel ill for the night I took it and a bit into the next day. I now take injections once a week. I make my own and put the needle in my fat belly all by myself. The joy of pred is I have the fat for the injection. ha ha! I still get a bit worn out after the injection for the evening and occasional slight nasea, butall in all iat is OK. It does help to bring my inflamatory numbers down to a more managable level. I usually take it on Sunday nights, right before eating a nice Sunday evening meal and I typically go to bed earlier that evening, so that is how I deal with it.
Best of luck.

simon newman
02-26-2011, 12:49 AM
thanks malin - good luck

simon newman
02-26-2011, 12:50 AM
thanks for sharing your experiences coffelover - good luck

gurinbasra
02-26-2011, 06:12 AM
Hi,

Just to add to the collection of replies, I've been on Methotrexate for 2 years and am still on it along with 10mg of Pred. I take 25mg/week via injection, have no side affects in that I feel fine - of course, I'm not the same as I used to be for energy levels - probably the Methotrexate working on the immune system has something to do with it. Hair loss - about one third of it during chemo drug, but it came back once on Mtx but it's still not quite as full which is expected if you understand how Mtx works. I did find however that I became anemic - again just how mtx works - so I do take an iron supplement every day. Other than that, I don't feel any different on the day I take it to the other 6 days I don't - definitely an eaiser drug for me to take.

vdub
03-12-2011, 04:11 PM
I started on mtx last Mar10 when I was diagnosed. I was on 15mg once a week up until Jan11. At 15mg, I had no noticable side affects. At least, none that I couldn't readily blame on one of the other half dozen drugs I was taking.

However, about a month ago, I started to taper up by one pill per week until I hit 10 (25mg). I took my first 25mg dose last Thur morning. I was fine all day, but mid-aft, I thought I was halfway into the grave -- stomach cramps, nausea, headache, dizzy, and dead tired. I beleive the mtx was the culprit. I ate nothing and went to bed.

I am much better today, but I do notice that my muscles and my joints ache like the dickens. Particularly my elbows, knees and the muscles leading up to them. They all hurt. I literally have to roll out of bed. Once I get some tylenol and tramadol into me, I get along ok, but the underlying pain is still there. Is it the mtx or the wg? I guess if I have the same experience this Thur, then I'll have a good idea it's the mtx.

paulineob
03-13-2011, 12:08 AM
hi am new here i am on pred been on it 4 13 months now was on 60 now down to 10mg a day.was put on methotrexate 5 months i am on 10mg a w eek thay will have to put it soon.i have not had eny side effects you will not have hair loss only think i can say i may get a bit nausea but it nothing.please dont worry am on pred and meth dont no when i will b of the pred but the meth will go up when i come of them may b 3 months time.hop this has help u . pauline

vdub
03-13-2011, 02:03 AM
Hi, Pauline... Welcome to the site. Except for the very beginning of treatment, I have not been on any pred. That might be because I routinely have to take cortef due to the loss of my pituitary. Hopefully, I will only have to take the mtx until June. We'll see.

Woke up again today with a lot of joint/muscle pain. Things get much better after I take some T3. I do wish I knew if the aches and pains was due to the mtx or if it was the WG. If it continues, I'll call the doc on Monday.

As for hairloss.... Hasn't been an issue for years.... :-)

Are you in France by any chance?

simon newman
03-13-2011, 03:39 AM
hi am new here i am on pred been on it 4 13 months now was on 60 now down to 10mg a day.was put on methotrexate 5 months i am on 10mg a w eek thay will have to put it soon.i have not had eny side effects you will not have hair loss only think i can say i may get a bit nausea but it nothing.please dont worry am on pred and meth dont no when i will b of the pred but the meth will go up when i come of them may b 3 months time.hop this has help u . pauline

Thanks for sharing your experiences - best, Simon

paulineob
03-13-2011, 09:19 PM
i have muscle pain to in my elbows ankels to. well i never had pain in my elbows and ankels b4 it mybe the mtx got up 2 day and my nose is sore its a bit crusty to . hope thing r no starting again. do u work hope u dont mind me asking . but i was thinking of going back to work been of work now 4 13 months. am only on 10mg of pred from 60mg and mtx 10mg a week it will have to go up doc says. no am not in france i live in liverpool home to the fab 4. pauline

Hammy8241
03-13-2011, 10:46 PM
but i was thinking of going back to work been of work now 4 13 months. am only on 10mg of pred from 60mg and mtx 10mg a week it will have to go up doc says. no am not in france i live in liverpool home to the fab 4. pauline

Dalglish, Carragher, Gerrard and Carroll?????????

If you feel you can, then getting back to work is good.

Sangye
03-14-2011, 12:38 AM
vdub, I'm concerned that you're taking tylenol on a regular basis. Recent studies have shown that taking it on anything approaching a regular basis is dangerous to the liver. They've always known it to be hepatotoxic but didn't realize how easy it was to reach that point. Make sure your docs know what you're doing. Since the mtx is hitting you so hard, you might need to switch to mtx injections or to another drug altogether.