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4CYNDI's Photo 4CYNDI Posts: 15,653
5/12/10 11:45 P

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I know what you mean about the folic acid supplements. I get mine as a prescription of 1mg tablets, along with extra in my multivitamin and b complex too.


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TRAINOF4's Photo TRAINOF4 Posts: 2,650
5/12/10 11:02 P

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Folic acid is critical when using MTX. The MTX interferes with your body's absorption of folate so you need the supplement. It can be purchased where you buy other vitamins, but I know I always got mine as a prescription. It was such a high dose - can't remember exactly what though. Could replicate it with the OTC ones, but it would've taken a lot of tablets.

B complex is really important for energy.

Stay calm and carry on.
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5/11/10 11:49 P

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I agree on the Bcomplex - it really does boost the energy level. I take one every morning.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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4CYNDI's Photo 4CYNDI Posts: 15,653
5/11/10 11:41 P

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I also take a B complex for the tiredness. It is amazing how much more energy I have on the days I remember to take it. I also take a multivitamin, folic acid, calcium daily. I take Celebrex as needed for the pain/swelling and mtx once a week 8 2.5 mg tablets. We worked up to that dose slowly from I think 2 pills a week. I have found also that splitting the dose (5 pills Fri night, 3 Sat night) lessens the side effects of both the tiredness and the nausea.


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5/10/10 6:51 P

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I take the folic acid, calcium & extra Vitamind also, on top of that in my multivitamin & calcium tab. Gotta fight those side effects, plus general aging. OMG, TINGRAE66, they have you on everything but the kitchen sink, don't they? The Mtx is probably the culprit for the tiredness. I am on 4mg prednisone & 50 mg Enbrel shot 2ce weekly, & while still no ball of fire, am much more satisfied with my energy level. Pain level much better also - mostly only hurt with massive weather change &/or when I overdo, as when I walked 4 mi over the past weekend - paying for that today, in a cold rain. I took hydrochloroquine for a while years ago & went into remission on it, & quit, my foolish response then. You might want to talk to rhuemmy about cutting back on Mtx experimentally, see if pain levels & stiffness stay OK while energy goes up. I sure would. It is nice to just enjoy life again.

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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TINGRAE66's Photo TINGRAE66 Posts: 52
5/10/10 1:42 P

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I'm glad you asked that question GemmaJo. I have been on Mtx for about a year now...started with a low dose now I am up to 8 tabs once a week..I am also on :
hydroxychloroquine 200mg 2 pills daily
methotrexate 2.5mg 8 pills weekly
prednisone 5mg 1 pill daily
Enbrel 50mg 1 shot weekly
On top of those I have to take folic acid..calcium pills...And vitamin D pills.......
So far the stiffness is pretty much gone...I'm glad because my hands and feet were on a curling journey....Most days I have no pain but when it flares up it lasts a few days....I am ALWAYS tired..thats got to be the side effect I hate the most!!!! I am one of the rare ones..where I don't get the nausesness....But hang in there....I AM always willing to try something new..anything to stop the pain....Jodi :0P

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TRAINOF4's Photo TRAINOF4 Posts: 2,650
5/9/10 11:38 P

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Yeah, I know the prednisone really makes me feel better sometimes. But man...the side effects really stink!

Stay calm and carry on.
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5/8/10 9:44 A

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I loved prednisone when I first took it because prior to taking it, I couldn't walk without assistance and I needed help sitting down and getting back up. My husband and the prednisone were my saviours.

That said, I rarely take prednisone now because I don't like the fact that I seem to gain weight when I'm on it and I know it's not good for me long term.

Good luck.

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TRAINOF4's Photo TRAINOF4 Posts: 2,650
5/7/10 8:17 P

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emoticon Nice to meet you! I know a lot of people are afraid of MTX but in truth there are zillions of people who take it & have taken it for a long time without any bad side effects. I think a lot of the time we only hear about the bad things. MTX has a good track record & works very well for many people.

I understand how you feel about getting blood drawn. My veins are shot, too. It's all about who does the draw really - some people are really good at it.

Prednisone isn't safe for long-term use. It can cause your bones to become weak & affects how your thyroid/hypothalmus glands work. The longer you take prednisone the less your glands work on their own. So if you stop the steroids suddenly your body gets out of whack & it can be dangerous. That's why you have to taper the dose down..but that's more when you've been taking it for a long time and/or you've been taking a high dose. It can help for a short time, but isn't really something good for long term use.

Stay calm and carry on.
4CYNDI's Photo 4CYNDI Posts: 15,653
5/6/10 7:53 P

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Welcome to the team KDOVLET!

When I went off the prednisone I was more tired, but I didn't feel like I needed to eat the entire house and all it's contents any more, which really helped with the weight loss. My rheum had me taper off the prednisone slowly so as to avoid really bad side effects (don't remember what they are now though). After the remicade kicked in I don't need to take the prednisone any more.

Hope the Enbrel and mtx works well for you.
Cyndi

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RESCUEME123's Photo RESCUEME123 Posts: 55
5/6/10 7:12 P

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I am recently diagnosed (about 3 mos ago) and was taking 60 mgs/day of prednisone along with 8 of the 2.5mgs of mtx/week. I was not seeing significant improvement in the swelling until my doc added Enbrel 3 weeks ago and saw improvement right away. Each day the swelling and ability to move my fingers and wrist improves slightly. Can't wait to see what I can do when the Enbrel really kicks in!

I am starting to reduce the pred and am a little nervous to see if there is a positive or negative effect.

I take both the mtx and Enbrel on Friday nights. Saturdays are my feeling "barfy" and tired day. My family gives me time for a nap which is usually much needed.

JACOBSS914's Photo JACOBSS914 Posts: 334
4/26/10 3:23 P

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Perdisone and me do not get along very well either. It makes me a really large pissed off man who has a Extremely high pain threshold and a very short fuse. I am not fun to be around on that stuff. It was like being 16-18 again because of a very unrealistic sense of wellbeing.

Each persons reactions to drugs are different, so go slow, and write things down. Over time you tend to make things better than they really where or are, so a written record goes a long way to help show your plight.

Everyone has their own cocktail mix they like, and they stand, finding mine took almost 2 years. Here is hoping you find yours sooner and all of ours continue to work for us.

Now I have taken control...


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4/26/10 2:08 P

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I have been taking methotrexate for about 6 months now and I'm up to 7 pills. I had some trouble with stomach upset in the beginning, and every time my dose increases, but that seems to generally only be the first few weeks. I take my dose on Friday night's and I tend to need more sleep on Saturday. Otherwise, I haven't has much issue with it. Lucky me, I guess!!

I am one of those people who need more than just MTX so I started on Enbrel, but sadly, I am allergic to it! I will be starting Humira next week.

Now prednisone on the other hand... we don't get along very well.

JUSTHEATHER2011's Photo JUSTHEATHER2011 Posts: 111
4/26/10 8:05 A

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MTX is one med I have tried to avoid personally. Scared about all the bad reaction reports.

However, I have come to the conclusion, and this took lots of mulling over, tears and frustration that if MTX/biologic combo therapy is the best there is then I want it (no-actually, I need it). I am currently on a biologic that has changed my life in so many ways but there are still effusions and pain.

So when I see my RD at the end of May-adding MTX is on the top of my talking points list. Because I have looked at the studies and there is a greater chance of "clinical remission" which is what I want with combo therapy as well as stopping of disease progression. (because the disease can progress despite an apparent lack of symptoms & I have symptoms still, cut in about half but they are still there)
As much as it psychologically scares me to come to this conclusion, it is the only one that makes sense for a 36 year old mother of 3 who is a self employed homebirth midwife. Besides, I don't really know how or if it will effect me in any way unless I try it.

So, there ya go, my 2c

Heather
I am ready to take a "leap of faith". It took 3 years to get to this point. Do I wish I got to this point sooner, yes and no, for many reasons. One being a nursing mother.

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GEMMAJO's Photo GEMMAJO Posts: 1,272
4/25/10 3:54 P

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will keep you posted Angel, molly .I WILL HAVE ALL THE TESTS DONE ETC MY WORD YOU HAVE BEEN ON DICLOFENAC FOR A LONG TIME
.Will do adiary when & if put on it see s what happens been in so much pain lately especially in neck ( head ,thinks its my shoulder as it is really hurting? at present are weather is acombination of been warm & raining ,thanks so much for your advice .

MOLLY ,What problems did you have with plaquenil,I was off it for 8mths last yr as have eye problems ,dry eyes severly ,my eyes got really bad took me off it till found out the causes when rheummy found out wasnt it wasnt th plaquenil but me back on it!

Edited by: GEMMAJO at: 4/25/2010 (15:57)
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ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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4/25/10 8:56 A

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emoticon I am praying the new med regime works for you, Gemmajo. Be careful to take all the tests & precautions suggested by your doc, as all these drugs that pack a punch can also go far wrong if we don't keep a close watch on them. Keeping a pain & stiffness journal, where you write down how you feel each day, can be very helpful for both yourself & your rhuemmy in evaluating whether the Methotrexate is helping you enough to be worth the risk & side effects. We always go up & down because of non-med influences like weather, mood, our own hormones & so forth, so for me it is often hard to give a definitive answer when the doc asks how am I doing, meaning is this drug doing its job for me? If I've written it down daily, I have a record that will either show a gradual overall improvement or Opps! same old recurring misery & pain. Try it - doesn't have to be a novel, just a few words each morn or evening. I do hope this gives you relief. God Bless!

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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MOLLYJ9's Photo MOLLYJ9 SparkPoints: (0)
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4/25/10 7:24 A

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I was just put back on Mtx a couple weeks ago. I had been on it for 12 years, then had a liver problem, so was taken off, now on again. I have a low dose with no side effects, as I am on Orencia also. I would try it ans see what happens, it's best to try and see. There is no gain if you don't try. I was on Plaquinil before the Biologics came out and I had problems with that drug. I have been on diclofenac for over 35 years and it still works for me, and Lortab for pain. Keep us posted on your progress. All the best to you.

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GEMMAJO's Photo GEMMAJO Posts: 1,272
4/23/10 11:29 A

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angel im in uk so maybe not know med s I have yes dmards diclofenac is an antinflamotry how ever lately dont think its doing alot been on it all time had ra 7yrs next month,plaquenil is an anti malarial drug for slowing down the process apart from a 8mth break as have eye problems beeen on it over 4 yrs co codomols = pain killers

Edited by: GEMMAJO at: 4/23/2010 (11:30)
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GEMMAJO's Photo GEMMAJO Posts: 1,272
4/23/10 11:22 A

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thanks everyone for your experiences & advice regarding methotrexate the side effects do worry me
my mum used to take it but now on prediscone & some thimg else forgot the name of it she was on it for a mumber of yr s will have to wait & see what happens will have tosee what the results are from blood test& xrays am willing totry any thing that will help at min inso much pain

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CD6101902 Posts: 302
4/23/10 12:44 A

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I takr methotrexate 1x a week(7x2.5 nl tablets) with 2x salazopyrin, 1x celebrex and 2 x folic acid a day, the folic acid helps to prevent hair loss. My doc and I have found that if I do not take the folic acid on the same day as the methotrexate I have less p-n.
This really helps me, befor using methotrexate I lived on prednisone which affected my bone density and my weight. When I staarted on the methotrexate I felt flu'sh and nauseouse for about two weeks but it has been worth the suffering, I was almost wheelchair bound and now live a pretty normal life

4CYNDI's Photo 4CYNDI Posts: 15,653
4/22/10 10:48 P

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Mae,
My rheum took me off the prednisone after I found a level of remicade/methotrexate that controlled the swelling/pain without the prednisone. He then had me taper off slowly because of the side effects if you go off too quickly. I have been off prednisone for several years except for brief periods when I have a really bad flare and then it is usually a shot.

I take the remicade treatments every 6 weeks right now.
Good luck!

Cyndi C.A.M.O.Crew BLC 38
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MAEB47 Posts: 133
4/22/10 10:25 P

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I take methotrexade every wk. I had to stop when i first start it, because all my hair fell out after being off for several months i had to get back on it
its help me. I'm also on predisone for 4 yrs and have manage to gain wgt. I also get recemide every
8wks. I've been trying to get off preddie but md. keeping refusing to.

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KIERAE's Photo KIERAE SparkPoints: (0)
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4/22/10 10:04 P

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Cheap IS a factor. Let's face it -for most of us, money is a HUGE issue. If you have spent any time in the "drug lane" of the RA Meds, you know this. What works for me may/will not work for you. Ditto on the side effects.

You seriously have to go slow and figure out what works for you.

I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing. Agatha Christie
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JACOBSS914's Photo JACOBSS914 Posts: 334
4/22/10 9:56 P

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I am on it and have a love hate relastionship with it. Love it cause for me it does what it needs to do for the most part. Hate it cause it makes me sick to the point of tossing mt bed time cookies. But it is minor, and I think most of it is pshyco-semantic! I am off to take my shot now.

The other reason I like it is it is dirt cheap. I can pay for it myself, with spare change found under the seat of my car. Other down side if you travel a lot, special papers. Last year at this time there was a shortage of Metho, I was off of it for a month and a half. It would h.ave been longer but I scored some locally and paid out of my pocket.



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ANGEL1066's Photo ANGEL1066 SparkPoints: (0)
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4/22/10 7:32 P

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I asked my doc to take me off gold salts after my bout with breast cancer, as they are implicated in causing cancers, & he put me on methotrexate instead. I was on it for a year. World class mistake for me - my fingers deviated so much I had to stop playing my recorder (flute, not electronic kind), which I miss greatly. Lots of pain & stiffness, accelerated diviation & deformation in my toes also, making walking harder & finding shoes near impossible. I also had to take the blood tests - I have same problem with deep veins in arms so using hand for last few years. I quit taking it, actually did a bit better without it, but still in pain. I moaned so much about it, doc finally sent me to new rhuemmy, who put me on Enbrel, almost 2 years now. She wanted to keep me on methotrexate also, but I flat refused to take it, & have been doing OK without it. Methotrexate is a powerful disease modifying drug, supposed to stop or slow the degeneration your disease is trying to cause. It was originally developed as an anti-cancer drug for chemotherapy. Apparently it helps many people as docs like it a lot, but it sure did me no good at all. I've been on plaquinel also, it helped keep my symptoms down for quite a while, but I don't recognize your other meds - are any of them DMARDs, that is, actually working to stop the disease, not just relieve pain or lower inflammation?
I'm glad your rhuemmy is taking you seriously, doing some real testing & looking at your bones to see whether the disease is doing damage. I'd give the methotrexate a try - you may respond to it better than I did. But keep on being honest with your rhuemmy - if you hurt, tell him so, & where & how often. Squeaky wheels get the grease, with rhuemmys as elsewhere. Don't wait too long before complaining loudly if you are still flaring up. I do hope it helps you. GodBless!

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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4CYNDI's Photo 4CYNDI Posts: 15,653
4/22/10 7:30 P

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For me methotrexate was the first drug I was put on for the RA. I have some side effects, but nothing as severe as bookworm. I find that I have less swelling in the joints when I am taking it. I take it in combination with Remicade and when needed, Celebrex.

The side effects I have was the nausea and extreme tiredness for the two days I take it. I have found (with doctor's suggestion) that I split the dose over two days as I am on a fairly large dose. I no longer get the nausea and am just tired on the two days a week (Friday & Saturday nights just before bed) after I take the methotrexate.

If your doctor is recommending it I would at least try it to see if it helps and if you can tolerate it. My doc said it is the "gold standard" for RA treatment.

Best of luck whatever you decide!
Cyndi

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KIERAE's Photo KIERAE SparkPoints: (0)
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4/22/10 7:24 P

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I have been on methotrexate by itself (pills made me nauseated but injections didn't) and in combination with other meds (which is where it really shines). When taking in combination with other meds, you usually take a lower dose so you don't get nuked like you do if you are only on the methotrexate. Anything that might work is worth a try (coming from a person who has tried most and finally found something that has my arthritis in check).

I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing. Agatha Christie
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BKWERM's Photo BKWERM SparkPoints: (191,957)
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4/22/10 7:05 P

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Personally, I hated methotrexate because it made me nauseous for 3 to 5 days a week and my quality of life sucked. But, on the other hand I think that's why none of the biologics has worked that great for me because all of them say to get them WITH methotrexate and since I don't take methotrexate, they don't work very well for me.

My name is Joanna not Joanne, please and thank you.

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Black Panthers Sleigh Bell Slim Down Winter 2019 Challenge
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RESOLUTE on sticking with the things that work, e.g. tracking, drinking my water, exercising, etc.

RENEGADE by limiting unhealthy food and moving my body as much as possible.


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MUSIC66's Photo MUSIC66 SparkPoints: (0)
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4/22/10 7:03 P

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i was on that medication but not now but still have blood test every month he took me of it as i got to used to it then arava , but now on plaqunil and mobic . it is really up to you about that medication if you think it is best forv you.

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GEMMAJO's Photo GEMMAJO Posts: 1,272
4/22/10 6:30 P

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Been to see rheummy today ,checked me over explained getting alot of pain in neck hands &feet he said he was thinking of trying me on it today had more blood test I have bad veins ,&couldnt get any from my arms so had to get it from my hand which wasnt nice ,also had xrays done last time had them was 7yrs ago whe n first started with ra?.normally he does nothuing other than leave me on the same meds so quite surprised to day has done quite a bit & listened to what I say only thuing is if I go on it u have 2 have blood tests every month what do you think of methatrexate my mum was on it but has been taken off it ,im currently 0n plaquenil diclofenac,co codomol.

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