has anyone here been helped by methotrexate? | Arthritis Information

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 I've just begun taking mtx, once weekly--tomorrow I take my second dose-- and I am wondering: Has anyone on this board been helped by it?

I know it takes a while to kick in, but so far I am noticing no difference at all.

A family friend who has RA has been taking it for 25 years and she said it gave her her life back, but that is a completely different disease, although also auto-immune. 

freesia


freesia2010-08-30 19:02:28Hi freesia!

 
If you go to the pmr gca UK support site and click on useful information at the left hand side you will find an article by a lady in the NE of England who has been using MTX and her experiences with it. Google pmr-gcauk northeast support site (because, as usual, I can't remember the address of the top of my head!) and that should give you a link to the site - I'm also fairly sure MrsUK has given it on here at some point. MrsUK has also just posted on the patient experience pmr site that there will soon be a medic-approved article about MTX on that site. From what I remember though it takes some time before it starts to have an effect and allow you to reduce the steroids - and in PMR that's all it does, it allows a reduction of steroids, it of itself doesn't change the course of the disease as it does in RA which, as you so rightly say, is a whole different kettle of fish.
 
hope this is helpful,
MrsE
Hi, Been on it, takes about 6 weeks to kick in, and then after about another 6 weeks , rheumy did not think I was absorbing it orally, so had injections weekly. On it for about 3 yrs, until last April (and one other time i asked to go off it for about 4 mnths!)

As said before, It is not a 'fix'. It is a steroid sparing drug, and keeps you on a slightly lower dose , than may be necessary. It towards the end ,made me feel nauseated, but otherwise I think it did its job.

I did not drink alcohol while on it and had liver function tests each week .  I also will read the post on gcauk etc.     Zali Hi Zali!
I think this is really amazing - posts from the USA, Europe and Oz all happening at the same time!
 
You are complaining about your cold winter in Sydney. As you know it is summer here and I live in Italy (OK, in the north in the mountains, but even so!) - today it has snowed down to 1300m!!! There has been half a metre of new snow in places in Austria. Global warming anyone
 
all the very best
MrsE
MrsE--I think I did read that article,but I will read it again. It's part of the reason why I decided to go ahead and try mtx. Other than that, I know personally of two people it has helped, but they both have RA.  One of them, who I have spoken to, has been using it for 25 years ( I mentioned her before). She says she thinks that mtx is less toxic than prednisone--  that is just her opinion, of course, but worth taking into account. The other person is the mother of a friend of my sister. I've never met her but she's in her eighties and has taken mtx for 10 years, with no ill effects, for RA.

MrsE and sydneypeaches ,
So the mtx allows you to reduce the prednisone dosage, but if you get down to zero prednisone, you can't stop taking the mtx or you might have raging PMR again?
As I understand it, your own body and immune system "decide" when the PMR burns off and no medication can change this or make it happen more quickly. ?


freesia
P.S. no drinks for me...not allowed when you are taking mtx. danger of liver failure...
freesia2010-08-31 15:37:04Freesia,
I might be wrong but I don't think the mtx necessarily allows you to get to zero pred - I think all it can do is let you be on a lower dose of steroid and so minimise the side-effects. If you get to zero pred then it's because the PMR has burnt out/gone into remission in the meantime anyway.
 
And Freesia - anyone would think I was a raging alcoholic! As a Brit I could well have meant a nice cup of tea
 
all the best ,
MrsE
Hi MrsE,

Thanks for your input on mtx. You are probably right. Maybe someone else can verify that or add to your comments!

Oh, never thought you were a raging alcoholic! Where did my innocence go--"drinks" certainly could mean tea or coffee. Maybe I'm just paranoid about not jeopardizing my health any further now that I am on mtx. I really don't drink alcoholic beverages, anyway--maybe a half glass of wine for the holidays--that's about it. Although since being diagnosed with PMR I've been tempted a few times to drown my sorrows! Thankfully haven't gone down that path.

freesia


My doc  has been talking about putting me on methotrexate  for about 2 months now  and yes it will assist in the process of steriod tapering   I hear many different things about the side effects   Years ago it was used as chemo for leukemia  however -- my concern is    is there really NO  alcohol  while on MTX?  I do like an occasional glass of wine etc  please advise  as I have an appt on 9/9  and she will probably bring it up again  thanks all!Parker - I think it is a case of it might help with tapering in that you will possibly get onto a lower dose but the evidence is mixed as far as I can tell although some doctors seem to think it is useful. There are other medications used to help steroid tapering in other diseases but I have no idea why you use one in one disease and another in another. MTX alone doesn't deal with PMR, so you don't get off the steroids altogether if it is PMR you have. MrsUK said recently that it's not usually considered until you've had a couple of relapses - i.e. got of steroids altogether and the PMR has come back as opposed to flares of an ongoing dose of PMR.  MrsUK has posted a fair bit about it and there is new info on the British northeast pmr-gca support site with more coming soon (a patient article and a medical one about MTX is coming).
And yes - it really is no alcohol as MTX goes for the liver anyway and you have to have frequent and regular blood tests to monitor liver function so you also have to avoid any other liver stress.
all the best,
MrsE
Hi Eveyone, All above correct. It does not cure PMR, but helps keep you on  a lower dose of prednisone. Steroids are the baddies.   Having said that , and being off the Meth since april and only on 2 1/2 mgm prednisilone, I jinxed myself and was not really as good as I wanted to believe.

Have rheumy appt Tues, but  this week realised the PMR had hit again. Have not been swimming cos' tired and sore , no yoga cos' painful, paper run taking hours and found myself just sitting staring into space and feeling sooo depressed.

Made decision....took another  5 mgm prednisilone(prednisone), and felt like superwoman. YAY

BUT will see what rheumy has to say, and how he would manage this flair -up.  My blood pressure has been a little unpredictable, so i am quite cross about my body needing more prednisone, as I am already on 2 blood pressure meds.

Now able to send smiles to all      Zali Zali - it's a stab in the dark and out of interest, but how have your BP problems paralleled your pred reduction? Before I was diagnosed last year my BP had been up and down and while the PMR was really having a field day it was high enough for me to suspect they might eventually want to use medication (which I wouldn't have been at all happy about). However, as long as I am on high enough a dose to keep the PMR under control my BP is perfect, 125/85 last time which isn't bad for an overweight 58-year-old.
And upping the dose - can you try to go down 1/2 mg at a time and see where the pain comes back? Or do you not have 1mg white breakable tablets? Then you'd be on the absolute minimum you need.
 
Good luck now you feel better - as MrsUK says, we only have one stab at this life (no-one having appeared to say otherwise) so if the choice is pain or steroids - I'm taking the steroid path!!!
MrsE
Mrs E. Why would you ask about the comparison of raised BP and prednisone reduction? What have you found out? Would love to know.  well that answer certainly made me think about  MTX   Initially during treatment iright after diagnosis  I  was up and down with the steroid  dose  and I have had one severe relapse  followed by  higher dose of steroids  but  in return  I felt  very good  and my inflammatory markers went way down     well  I have an appt  tomorrow  and we will see if I'm ready thanks to all   oh  and if I do decide to go on it  at least cookout  and barbecue season is almost past    Parker did you start the mtx?  How did your Rheumy appt on the 9th go?  Just wanted to follow up to see how your doing.
 
Also, Freesia, how is it going with you and mtx?
 
I am taking 5 2.5mg tabs per week and have never seen a difference yet.  Who knows though because my rheumy had me start on mtx shortly after starting on the prednisone.  I'll be glad to meet the new rheumy in November because the other one was rather pushy and not willing to compromise.  I'll have to wait and see.
 
Hope your doing well with the mtx though.  Remember too that when on mtx to drink alot of water and stay away from people with any type of infection.  Also no aspirin or nsaids.  Maybe I'm confusing some of this with prednisone, sometimes my brain is a little scattered.
Hi Russell,
I took my fourth dose of mtx last night.  I'm having lab tests done this week and see my rheumy next week.

I'm not sure the mtx is helping--I think it may be making a small difference, but I just don't know. 

I think you are right about the aspirin and nsaids. Actually I haven't taken any painkilling otc meds since I was diagnosed with pmr!

I've been having pain on the left side of my torso, around the lower part of the rib cage. I'm worried that this might mean I have liver trouble from the mtx, so I think I may go for my lab work today rather than Friday. However, I also injured a tendon (I think) in my upper back around July 4, and it still isn't better. It's so hard to differentiate between pmr pain and pain caused by other things ! Or maybe having pmr makes ordinary injuries worse.

Thanks for asking, russellcat. I hope it goes well with your new rheumy. I saw in your other post that he has good credentials but as you said, that doesn't always mean anything. Anyway, good luck! I hope he will be excellent : )

freesia
p.s. thanks for reminding me about drinking plenty of water while taking mtx. I usually do, but sometimes start drinking herbal tea instead and forget about the water...and it isn't the same.
freesia2010-09-15 14:55:53Freesia, is the pain in your back or front?  I've had issues with hurting like a bruising right under the ribcage in the back.  Thought at first I had a kidney infection but no other symptoms.  Then was checking and the adrenal gland sits on top of the kidney.  Wonder if it could have been the adrenal gland acting up some.  Who knows!  It is gone now, didn't last too long.  Might have been the fibro acting up too.
 
Glad to hear you didn't have to many side effects from the mtx.  Good Luck!
Hi russellcat,

I saw your other post and I hope you are taking care of that worry about possible GCA. Don't fool around--it's your eyesight! Better safe than sorry.

Anyway, I know you're mind must be on your issues today, and it should be, but thank you for asking--I wanted to give you an answer.The side and back pain went away. It seems like every time I take a dose of mtx, I have some symptom the next day. But this week I had symptoms all week. First the back/side pain. Then I had this feeling that I ate too much rich food, not nausea, but sort of fullness is the best way to explain it. Then my front teeth started aching! Yesterday I was so stiff and sore, it really makes me wonder if mtx is making me feel worse, because not only do I have the pmr "stuff" to deal with, now I have a whole new bunch of pains.  I hope the teeth aching is NOT gca.

BTW-- I had better explain: It's me, the old freesia--now I am "freesia2". I lost my password and did a "cleanup" of computer disks, which erased my automatic "sign-on" here. There was no way to contact anyone to retrieve the old password, so I had to re-register with a new id, password, and email address. I also picked a new picture to go with my id!


freesia22010-09-18 10:37:02
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