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I need input about methotrex.. have questions


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Old 04-23-2009, 11:32 AM   #1
azuresky
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Question I need input about methotrex.. have questions

How soon should I begin noticing less pain? What side effects are most common? What about drug interactions? I was told to stop taking my Relafin, which I did.

I just took my first dose last night. Is bedtime a good time to take it?

I am also taking 1 mg. folic acid per day. My new doctor...a rheumatologist finally told me why I need this and he told me I will need bloodwork every 2 months to insure my liver and kidney chemistry's are ok.

Other drugs I take are Losartan, hydrochlorothiazide and metoprolol for high blood pressure and 2000 mg Vit D, omeprazine for GERD, simvastatin for cholesterol and hydrocodone's for pain.

The pain is severe especially in the last few months. I must be in in one heck of a flare cause it was so bad it drove me to a doctor who...ran all the blood tests I'd had before.. but the RH always came back negative. This time C reactive protein, sed rate and RH factor were very high. I've been suffering a lot..

Now the Prednisone DOES give me fairly good relief. I have to admit that though I hate the drug. I just would like to know if the methotrexate will be as effective but won't change me. I don't want to become allergic to everything. I'm already allergic enough. I don't want to lose my hair. Its the last best thing I got... lol!

So tell me your experiences please...with methotrexate or other drugs or therapies that can help me deal with this.

btw...last summer I was diagnosed with polymyalgia rheumatica...but that was because my RH factor was a high normal and the other tests were above normal range. I began with a new doctor a few months ago, who sent me to a rheumatologist and new tests and now the diagnosis is RA.

I already have degenerative disc disease, stenosis, some bulging discs, ect.. Can the methotrexate help those problems too? Any inflammatory problems??

 
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Old 04-23-2009, 12:53 PM   #2
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Re: I need input about methotrex.. have questions

I've been on MTX for the past 5 years often along with other drugs such as Plaquenil(an anti-malarial). I started with the pills going from 3pills(7.5mgs) to 5 pills(15mgs.). I found that at the higher dose it bothered my stomach so I split my doses into 3 times in one day. I found myself getting relief in about 3 weeks. However, the RA started outpacing the MTX so my dose was slowly raised until I was up to 10 pills(25mgs.)...the max my doc will give. I was taking the 1mg of folic acid but my stomach couldn't stand it so I was switched to Leucovorin that is a form of folic acid that shuts down the effect of the MTX. You take it a certain number of hours after the MTX so you get enough of the effect without killing your stomach. Still didn't work. So I switched to taking it by injection. I could finally take it with no stomach problems!!!!!! But I still took the folic acid and the rheumy eventually upped it to 2 mgs.

No, I haven't lost my hair. I lost it from taking Plaquenil and it was stopped last year and all my hair has grown back in. I do take my MTX at night as it sometimes makes me feel a little nauseous and tired for about 12 hours. If you decided to do the shots, it is painless. I have 3 cats who inflict far more pain than an MTX shot.

I am still on it but once they had to stop the Plaquenil (eye problems)I started trying the various new drugs that are either injected(Enbrel, Humira) or given by IV(Remicade, Orencia). Orencia did the trick for me. So the combination of Orencia and MTX is what I'm on now and quite stable.

As for your spine, RA does affect the cervical spine. I was told it didn't affect the lumbar spine but the 2 drugs have been great. I'm feeling better than I have in a long time. So you may find some help.

My doc does blood work every 4 weeks and it has to be on the 5th day after my injection(I was given a handout on the importance of this). I take the Orencia every 4 weeks so that works out well. So I've been having blood work every 4 weeks for the past 5 years......that's a lot of blood. I want some back! Plus I'm diabetic so I do blood glucose testing everyday and blood work for that every 3-6 months. Somedays I feel like I'm feeding a vampire somewhere!

Good luck with the MTX. It's really a first line treatment now and very safe. Once you see how well that works, you may find other meds being added on top. It's important to get RA under control as fast as possible. For many it's just a joint problem but it can become life threatening. I've only had it for 5 years and it's affected the blood vessels of my brain and optic nerves, screwing up my vision. So I'm glad I have an aggressive doc.

Any other questions, ask away. That's why we're all here.

gentle hugs.............Jenny

 
Old 04-24-2009, 06:04 AM   #3
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Re: I need input about methotrex.. have questions

Thanks for your response and very helpful information.

I guess I said I took my first dose of two pills, Wednsday night. As of yesterday afternoone... both my calves have turned red from below the knee to my ankle, they are a bit warm to the touch and puffy. Feet are swollen too.

Methotrexate or no? I already emailed my GP and will be seeing him today and will be calling my rheumatologist this morning too to ask.

I also need to ask them both something else, but I'll ask here too.

I am in excuciating pain, having trouble just walking and using my right arm is very painful. I need to know what pain relievers are bad with methotrexate. I'm using hydrocodones with acetaminaphin, but I HAD to take ibuprofen last night cause my knees drive me crazy during the night, right shoulder too and I'm having headaches.

Its gotten so I have to sleep flat on my back because of the pain and thats isn't good either, but better.

When does the pain stop? I am at my wits end to know what to do about the pain and inability to function physically.

VERY depressed today.

 
Old 04-24-2009, 03:46 PM   #4
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Re: I need input about methotrex.. have questions

I have been on meth for around six weeks now. I have a lot of health issues,st3 colon ca survivor,pancreatitis , lost my gall bladder,insulin resistent,kidney stones now fsgs(scarring of the kidney filters). I had a year of chemo for the ca and I was on 75mg daily of pred for over 6 mos. I have weaned off the pred. I take 4 bp meds for the fsgs,chol meds ,somac for my stomach. I cannot take nsaids as they will destroy my damaged kidneys. I take pannadiene forte for pain relief. After pred I had a massive aouto immune polyarthritis flare. Bone scans showed inflammation in nearly every joint. I tried sulfasalazine but it seriously upset my bowel and I was put on meth. So far it has given me no relef ,the pain is worse. I also have neuropathy in feet legs and left hand,possibly sfn or poly. I hate the meth ,possibly because I have been on chemo before. I take it (20mg) late sat night. Sunday I am dead tired,mon and tues I feel ill. I have developed a rash between the fingers. MY doc wants me to stay on it. I take folate on mon and tues day. He now wants me to take 10mg on sat nite and wed nite. I am to take folate on mon ,leucovorin on tues and folate on thurs. The meth is not an anti- inflammatory it acts mainly as an immuno suppressant to try to stop your immune system from attacking your joints. I will stay on the meth for another month and hope it starts to work. With all the health problems I have had ,this is the worst I have felt. Four years ago I was walking 50 miles a week now I can barely walk and I can barely do my work it is almost impossible to hold screwdrivers and other tools. It certainly is a cruel disease . They know so little about it and it effects individuals in widely differing ways. There seems no common solution so we get to try a cross section of some of the worse drugs I have ever had the mis fortune to encounter. Pred has been the worst so far . On high doses it was worse than chemo... You have my sympathy and my sincere wish that you can find some relief. Ron.

 
Old 04-24-2009, 04:26 PM   #5
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Re: I need input about methotrex.. have questions

Idunno,

Quote:
Bone scans showed inflammation in nearly every joint
Did you have a whole body MDP bone scan? I have just had one and the results came back like this.

"Mild degenerative changes in the cervical spine. Mild to moderate degenerative changes identified in the lower lumbar spine. Mild to moderate arthritis or osteoarthritis identified within the bilateral shoulders, bilateral elbows, bilateral wrists, bilateral hips, bilateral knees, bilateral ankles and 1st and 2nd left MTP joint. (The right MTP joint has been fused).

I am seeing a Rheumatologist now and am on Etodolac twice a day but the Rheumy has not said anything of any significance. Do you know if the bone scan shows inflammation before the joints are actually damaged for good?

 
Old 04-25-2009, 04:40 PM   #6
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Re: I need input about methotrex.. have questions

Hi Hopalong,
My scan was full body plus an extra set on my hands and wrists. My doc asked for the scan based on blood tests that showed a high level of inflammation. The scan showed moderate to severe inflammation in fingers ,wrists,elbows,both shoulders ,sternum,jaws,hips ,knees,ankles,feet and toes. With all the inflamation there was surprisingly little damage to joints. This is possibly due to the fact that I have been on anti-inflammatories most of my adult life. Two areas my left shoulder ,a sporting accident,and the base of my spine,another accident, showed more serious damage. He does not think that I have traditional ra but more likely that I had mild chronic ra and it has been caused to turn acute by an auto immune response to medications. So yes it does appear the scan can show hotspots before serious damage happens. Best wishes Ron.

 
Old 04-25-2009, 07:03 PM   #7
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Re: I need input about methotrex.. have questions

More questions...and some input...

Both of my lower legs...calves have turned bright red since being on the methotrex. Looks like sunburn.. warm to touch. Anyone else have this happen?

I'm going to see someone about this tomorrow.

Also...as stated by someone else in this thread... I am in excruciating pain since taking this first dose. Shoulders, neck, knees...everywhere.

Had the pain in all those places...toes, ankles, ect. ect... but this is now all at once, whereas usually is kind of cycles around.

My Internist told me that happens sometimes when you first start methotrexate.

No... I haven't had any full body anything. I've had MRI's for lumbar and cervical spondylosis, stenosis, have some bulging discs at both locations, pinched nerves and for the last oh... 14 -15 years had osteoarthritis in all the locations I have arthritis now... except its gotten much worse in the last 2-3 years.

Last years.. c reactive protein and sed rate were very high. Over the years...sed rates have always been high when I am in a crisis or flare as they call them. (I'm having to get used to the lingo) They've always run rheumatoid factor too..but those were negative until this year.

For the last year... I've been in almost constant grinding, daily pain which though I fear Doctors, in denial not wanting to know for sure and not really trusting that a Doctor would ever actually help me... the pain and inability to walk drove me to get a good Doctor, who I was referred to as being one of the good guys. He did another whole blood series on me and all three RA markers were through the roof this time. So...he sent me to a rheumatologist and here I am.

I am battling extreme pain right now and mobility. I am having grave trouble getting up and walking. Though my fingers, hands are agonizing at time...right now...its both knees and my right shoulder driving me nuts.

On Monday I call my rheumatologist. I'm going to ask if maybe it would be helpful to have MRI's on my knees and shoulders.

What pain killers besides hydrocodones are compatible with methotrexate? My husband is buying more Tylenol. All I have is ibuprofen which I cannot take with the meth... I need more than the hydrocodones of which I am taking a 5/500.. 1 1/2.

I want to be mobile. I have things I want to do in the house and with my grandchildren. But, even taking the meds... if I move around too much, the pain comes back hard later. Also I get very, very tired. Never experienced such fatigue ever!

I just need advice on how to control the pain, but stay active too. Does acupuncture work? What about pain patches?

 
Old 04-26-2009, 02:14 AM   #8
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Re: I need input about methotrex.. have questions

Hi Azuresky,
You have my deepest sympathy. This is a cruel disease. As little as four years ago I was walking up to fifty miles a week. Now I can barely walk fifty yards without having to sit. Can you not take any of the nsaids ,naprosyn for example. I am currently using panadiene extra which has 15 mg of codeine per tablet. The only drug that I know will ease the pain is the one that I would least reccommend. That is Prednisone. You can take it with meth but it has serious side effects,body changes ,weight gain,moon face,mood swings,depression,insomnia ect ect. I was on 75mg for over six months. The only pain I had was from an ulcerated stomach. You cannot stop it suddenly. When you are on it the adrenal glands stop producing natural cortisol so you have to wean off it slowly till your adrenal glands cut in again. I tried sulfasalazine but could not take the side effects. My docs put me back on 15mg of pred again. It took the edge off the pain but did not stop it. I would probably need 25 mg daily to be pain free. I will not go down that path again. It is so hard when some drugs work for some and not others. I will give the meth another month. I wish you luck,,hugs Ron.

 
Old 04-26-2009, 09:34 AM   #9
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Re: I need input about methotrex.. have questions

Hi all. I posted way back at the beginning of this thread and I feel I need to correct some misconceptions. MTX is considered an anti-inflammatory but it's true action is to slow cell division. That's why it was used as a cancer drug and still is at higher doses. Slowing cell division slows the destructive action of the disease. So it takes time to work. Most pills are 2.5 mgs so 2 pills is a minimal starting dose. You should start feeling some relief when you reach 15mgs+.

The red, warm calves(I assume in the back of the lower legs) sounds like a rip roaring case of Achilles tendinitis. Tendinitis accompanies a lot of rheumatic diseases and can be very painful. I like heat for my bouts of Achilles tendinitis but I do have special braces that keep my ankle immobile and I can set the angle of my ankle more and more straight all the way to slightly bent over to stretch the tendon. Helps to keep it from tightening up. I've had chronic Achilles tendinitis for 30 years and I'm still walking.

Inflammatory arthritic diseases are hard to diagnose and even harder to treat. Everyone seems to do well on a slightly different regime of drugs. You find out what works by taking the drug and waiting a while. If I don't see positive changes in 3 months I move on to another drug.

So be patient. I doubt the MTX is causing your current problems. Sounds more like the disease process to me. Inflammatory arthritic diseases can kill you so be patient while they find a way to control it. It could save your life!

gentle hugs...............Jenny

 
Old 04-26-2009, 01:16 PM   #10
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Re: I need input about methotrex.. have questions

Quote:
Originally Posted by jennybyc View Post
Hi all. I posted way back at the beginning of this thread and I feel I need to correct some misconceptions. MTX is considered an anti-inflammatory but it's true action is to slow cell division. That's why it was used as a cancer drug and still is at higher doses. Slowing cell division slows the destructive action of the disease. So it takes time to work. Most pills are 2.5 mgs so 2 pills is a minimal starting dose. You should start feeling some relief when you reach 15mgs+.

The red, warm calves(I assume in the back of the lower legs) sounds like a rip roaring case of Achilles tendinitis. Tendinitis accompanies a lot of rheumatic diseases and can be very painful. I like heat for my bouts of Achilles tendinitis but I do have special braces that keep my ankle immobile and I can set the angle of my ankle more and more straight all the way to slightly bent over to stretch the tendon. Helps to keep it from tightening up. I've had chronic Achilles tendinitis for 30 years and I'm still walking.

Inflammatory arthritic diseases are hard to diagnose and even harder to treat. Everyone seems to do well on a slightly different regime of drugs. You find out what works by taking the drug and waiting a while. If I don't see positive changes in 3 months I move on to another drug.

So be patient. I doubt the MTX is causing your current problems. Sounds more like the disease process to me. Inflammatory arthritic diseases can kill you so be patient while they find a way to control it. It could save your life!

gentle hugs...............Jenny
Many, many thanks to you and idunno for trying to answer my questions..

Well its hard to be patient isn't it. I feel obsessed with the pain and talking about the pain in whatever joint is driving me through the roof.

I hate to say this but the pain and inability to use my body is making me more than a little depressed. The rheumatologist did start me on Prozac too..but I don't like having my feelings masked. otoh.. I can't handle the pain either and now its just in too many joints.

I used to feel I could put one fire out and move on and wait for the next one. Now its too many fires all at once. I'm overwhelmed.

I hope the methotrex works. I need it to work. My husband bought me some long-acting tylenol. I'm taking that plus 7.5 hydrocodones. That is NOT really the answer either.

I take my second dose of the meth this Wednsday...So that will be 4 of the 2.5 mg mtx. 2 of the 2.5 mg the first time, 4 the second, 6 the third and then 6 is supposed to be the dose I take each week from there on out.

I am right-handed. My right shoulder and well, whole right arm and hand are in terrible shape. I'm having trouble doing just the most simple things. Typing now.. I have to stop, massage my hand or wait a minute for the pain to subside...cramps bad, but its my shoulder mainly.

So..I'm going to try and be patient with the methotrexate and hope by next weekend??? I am in less pain.

I am also going to call my rheumatologist tomorrow and report whats going on. Part of me wants to go back on the Relafin...asap!!! Seems like I had more relief.

BUT... if the methotrexate slows the immune system down (as I understand it) I should get more relief that way. Is that correct?

ugh.. I have to reread your messages!!!

Anyway...thanks so much for the answers and support and just being here to respond. I used to be athletic, healthy as a horse, very active and now I feel like I just whine and in extreme pain all the time.

 
Old 04-26-2009, 03:39 PM   #11
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Re: I need input about methotrex.. have questions

I totally understand about taking care of one problem before another hits and getting overwhelmed. I'm at that point myself. And depression is not only a major problem for anyone with chronic pain, the same chemical reactions that are responsible for depression are involved with pain. So the anti-depressant does make sense for most people. I just went off the one I was on due to side effects. But I do see a therapist to help deal with the pain and the overwhelming problems.

You will probably see relief when you get to 6 pills a week.....15 mgs. That's when most people see it but you need to build up slowly in case you have any reactions. It's hard to slow down but your body is telling you....SLOW DOWN. Listen.

On your hydrocodone(Vicodin), does it have 1 number on the pill or 2? If it has 2, then it is already combined with Tylenol. Let me know what your pill has stamped on it and I'll look it up. Don't need to harm your liver with too much Tylenol.

But please don't feel you need to apologize to ANYONE about feeling so lousy. No one wants to be sick. You did not choose this. Use what you need to feel comfortable and whine all you want. That's what these boards are for. We rant and rave here so we don't do so to our loved ones. Great place to vent!

It will take time but you will eventually find a good drug combo and possibly feel back to new. Unfortunetly, inflammatory arthritis isn't curable but it is manageable. You'll get there. And we're all here for the bad days.

gentle hugs................Jenny

 
Old 04-27-2009, 04:15 PM   #12
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Re: I need input about methotrex.. have questions

Quote:
Originally Posted by jennybyc View Post
I totally understand about taking care of one problem before another hits and getting overwhelmed. I'm at that point myself. And depression is not only a major problem for anyone with chronic pain, the same chemical reactions that are responsible for depression are involved with pain. So the anti-depressant does make sense for most people. I just went off the one I was on due to side effects. But I do see a therapist to help deal with the pain and the overwhelming problems.

You will probably see relief when you get to 6 pills a week.....15 mgs. That's when most people see it but you need to build up slowly in case you have any reactions. It's hard to slow down but your body is telling you....SLOW DOWN. Listen.

On your hydrocodone(Vicodin), does it have 1 number on the pill or 2? If it has 2, then it is already combined with Tylenol. Let me know what your pill has stamped on it and I'll look it up. Don't need to harm your liver with too much Tylenol.

But please don't feel you need to apologize to ANYONE about feeling so lousy. No one wants to be sick. You did not choose this. Use what you need to feel comfortable and whine all you want. That's what these boards are for. We rant and rave here so we don't do so to our loved ones. Great place to vent!

It will take time but you will eventually find a good drug combo and possibly feel back to new. Unfortunetly, inflammatory arthritis isn't curable but it is manageable. You'll get there. And we're all here for the bad days.

gentle hugs................Jenny

Well... I called my rheumatologist today, explained how severe the joint pain was since I started the MTX and also about my red calves, puffed up feet and she called me back and told me the rheumatologist told me to stop taking the MTX. Said I'm having a severe reaction to it. Told me to take nothing but the extended release Tylenol and the 5/500 hydrocodones.. which he said its ok for me to take 1 and 1/2, which is what I am already doing.

Who knew those reactions were allergic or even a severe reaction? I could certainly not find that stated like that anywhere. So I guess I can't take MTX... which is supposed to be the best, first drug of choice.

Now what?

So I go to see him this Friday and he's going to present me with other treatment options. I HOPE its not back to Prednisone.

Ideas about other treatments to save my joints?

 
Old 04-27-2009, 06:36 PM   #13
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Re: I need input about methotrex.. have questions

There are tons of new treatments for arthritis but your doc will have to decide which way to go with treatment as you are already sensitive to one drug. Sounds like it wasn't an allergy but an adverse reaction. And your hydrocodone had Tylenol in it...that' s why I asked.

Wait and see your doc. Some are more conservative than others so he has to decide which way to go. Have you been on Plaquenil? That has very few side effects but takes a long time to work. It's another first line drug. But he might opt to go straight to the heavy duty drugs like Enbrel. It's his call.

Either way, I'll be here if you have any questions.

gentle hugs.............JennyB

 
Old 05-10-2009, 03:08 PM   #14
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Re: I need input about methotrex.. have questions

This is definitely cruel disease; leaving with severe case of RA is not easy at all. I was on Meth for 8 month and had to stop, b/s it was not relieve at all, but was making me very ill:nausea, hair loss, terrible fatigue, depression, rapid weight loss - and after all not pain or inflammation relieve.
After this I was on Predn. and Enbrel - never worked for me either. I felt so bad that all this money were spent on me, who never got any relieve,meanwile someone else who can't pay $550.00 for one shot could try and get some relieve of symptoms... I return my unused shots back to the Pharmacy and asked to give to someone who can't afford them, I hope it will be used in a right way...

Now I am trying Orencia; I am full of hope, but not sure if I am the lucky one since so many people don't get good results with it either...
We all are very different and our problems are different too. Makes a big difference what extend of the disease you have; some people may have severe case (like I do) some people may have mild case of Ra...
But I am trying to stay positive, try to stay hopeful - no other way to leave in our situation.
Wish you all the best and please have a better days ahead of you...
((((( ))))))

 
Old 05-15-2009, 05:48 PM   #15
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Re: I need input about methotrex.. have questions

Hi,an update on my methotrexate treatment. My doc split the dose to 10 mg on sat and wed with folate on sun ,leucovorin on mon and folate on thursday. My blood tests have shown that there has been no adverse reaction with my liver and kidneys and at the latest review he told me that my blood work on inflamation has dropped by 80% ,so the meth is definitely doing what it is supposed to do. But in the last couple of weeks I have been in agony particularly with left shoulder and arm. I have periheral neuropathy in both feet and left hand ,he suspected my pain was from the neuropathy more than from the ra . I started on lyrica last night and after one dose my pain level has nearly halved . I will keep the dose as low as possible ,he gave be a build up regime to 500mg daily but he said to stop at whatever dose helped. It is the first time in a couple of years that I have fealt that there was some light at the end of the tunnel. Best wishes to all .Ron.

 
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