Pain and methotrexate.: How long does it usually... - PMRGCAuk

PMRGCAuk
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Pain and methotrexate.

How long does it usually take for methotrexate to bring pain down? I’m just struggling all the time without the Actemra, that I was on for over a year. I refuse to go back to double digits prednisone. As long as I’m just in pain without any life threatening stuff, I will not go above the 7ngs that I came up to when taken off Actemra. This disease is from hell. I had fibromyalgia fir 36 years but It was a walk in the park compared to this. I do follow an anti inflammatory diet and almost never eat sugar, gluten or grains. I stay thin and walk a bit. I do use a bit of honey in my tea. I was also given a script for Zoloft which I started today. I’m also very depressed but I believe the Zoloft could help the pain as well as the depression. Any suggestions for relief, but please no higher dose of prednisone. 😥

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Hi Aleish

How long have you been on Methotrexate & at what dose?

MrsN

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Just started. On lowest dose possible. Two on one day a week.

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Hi Aleish

They keep you in a low dose for the first couple of weeks & then increase it if all is well. It certainly takes three months for it to be fully effective but you will gradually notice changes.

Mine was stopped in August last year & for the first four or five weeks l went along much the same but by mid September l was missing it’s effects & ultimately my Pred has had to be increased, my CRP was raised to confirm it!

Suet has also wrote about feeling the effects which you may find interesting.

Good Luck 🍀

MrsN

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Hi Aleish,

It’s my understanding that methotrexate suppresses the immune system but does not act as an anti inflammatory agent. The inflammation causes the pain. fm

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Then I'm sorry but I can't really help you I fear. Pred is the mainstay of management of PMR, with it it is possible to have a decent quality of life but you have to take enough even with Actemra, methotrexate or leflunomide on board as well.

Methotrexate doesn't replace pred - it may mean you can manage on a lower dose but there are no guarantees - there aren't even guarantees with Actemra. But you DO need to try a higher dose of pred to see what dose you need before refusing to take more. It may be you only need 1 or 2mg to achieve freedom from pain. It may be you will need more - but without trying you won't know and you could be missing the view because you refuse to turn around. You can stop, or at least go back to 7mg, quite quickly if you don't stay at the higher dose for too long.

If you need more than you are willing to take then in some ways you might just as well not take any at all - if you aren't taking enough to mop up all the daily dose of new inflammation then it builds up until there is enough to cause symptoms, just as a dripping tap will fill any size container eventually. This presence of unmanaged inflammation in your body probably IS causing damage - inflamed blood vessels are more likely to develop atherosclerosis and lead to stroke and other cardiovascular problems. Longterm low leel inflammation increases the risk of developing cancers of various sorts. It may increase the risk of peripheral vascular disease and untreated PMR is 7 times more likely to progress to GCA than if you are on enough pred. If that happens your choice is stark: take high dose pred (40mg and more, up to 80mg is common) or risk losing your sight. And in that case - when one eye is gone it is gone and there is a 50/50 chance of the second eye going despite prompt treatment with very high dose pred. No side effect of pred is as bad as the ultimate side effect of GCA. But it isn't as simple as pred bad, no pred good.

Untreated PMR causes pain - as you already know. Long term that results in immobility - weight gain, isolation, depression are just some of the consequences of that. Loss of independence, osteoporosis are others. I know what I'm talking about - I had 5 years of PMR without pred. 15mg of pred gave me my life back within 6 hours. Then I realised just how much effect PMR had had on me and how isolated I had become. If I couldn't drive to the door I couldn't go there. I almost could not toilet myself. I stomped downstairs like a toddler and crawled up on hands and knees. I've been on pred for over 9 years, a lot of the time at above 10mg, I have no identifiable adverse effects and I lead a pretty normal life, there are some things I can't do but they are things others don't do anyway, like skiing! I did ski for some years though.

If you have read this far - thank you. But try looking at this from a different perspective - you might turn a corner and find something you didn't allow for.

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Been as high as 60. Will never go on more then I need to stay safe. Rather have pain then all the terrible side effects. On for two years and was good with Actemra and able to come down to 2 mgs prednisone. Unfortunately it almost killed me. I’m just curious to know how long it takes for the methotrexate to give pain relief . Fortunately I got rid of the claudication, double vision , sore scalp symptoms. The pain and stomach issues are unrelentless. My goal is to be free from prednisone ASAP. I understand if the methotrexate works, it is a possibility. I am very well aware that if I go to 15 mgs prednisone then pain leaves me. I also had very high blood pressure, angina and major hair loss. I prefer the pain . Prednisone could cause me diabetes or a stroke. My eyesight is safe and my labs are better.

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PMR does NOT require 60mg. And there is no answer to your question - if what you have is PMR then methotrexate doesn't give pain relief - that is what I was trying to convey. It MAY change the way the body processes the pred and potentiate the effect of the pred so a slightly lower dose works. But it isn't a pain-reliever in PMR. Pred does that.

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I have GCA/PMR. The end result is pain relief. I think we have a semantics problem here. In any event some members have told me it takes up to three months at least.

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Don't confuse how mtx works in RA and as a steroid sparer. Not the same thing at all. Not semantics, mechanism of action.

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I took methotrexate for 8months it did not help with pain at all now back on pred .

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I’m sorry to hear that. How much prednisone are you on and what is your diagnosis?

The Actemra helps the GCA. I really miss it. I feel it also kept my all over

body pain down.

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I have pmr had it for over 4years now was on pred but soon as I got under 5mg I’d flare dr sent me to a rheumy who said to stop pred and started me on methotrexate I had 8months of misery he totally ignored what I was telling him in the end a few weeks ago he said stop the methotrexate and go back on pred and referred me back to my GP thank goodness started back on 15mg now on7.5 mg so all going ok

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Good to hear you are back on track.

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Thank you I wish you well

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I must disagree with you about the dose. I could not chew or see properly until I was dosed to to 60 mgs prednisone. Also there are many patients on much higher doses of prednisone. I’m surprised you don’t know that. My claudication lasted a long time and I was not dosed down until I could chew without crying.

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I have been talking about PMR - not GCA. I was talking about the dose required to manage the PMR symptoms which is all that you have mentioned at this stage. If you want to risk loss of vision through GCA that is your decision.

I will not respond again since you obviously think I don't know what I am talking about.

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I certainly don’t want to upset you. I thought you posted that after I posted I had both diseases. Sorry.

My GCA symptoms seem to be in remission. My eyes are fine and no claudication or sore scalp. Unless the GCA symptoms resurface I don’t need to go higher on prednisone.

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PMR can be a symptom of GCA - if you want pain relief from that, you still need enough pred. Nothing there has changed.

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Hi Aleish. If you look at some of my previous posts you will see that methotrexate has helped me. The dose you are on at the moment is very low and will probably be increased once it is established that you can tolerate it. I am now on 15mg once a week (6 tablets) and I found that it kicks in about 10 weeks after starting it. Good luck and hope you will be pain free soon.

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Sounds encouraging. Are also on prednisone?

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Yes 8 mgs currently. Reducing really slowly.

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Suet, Do you see a light at the end of the tunnel?

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To be honest, no I don’t.

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I’m sorry to hear that.

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Hi Aleish,

It's a shame that you can't continue Actemra if it was working for you. Is that because of Medicare policy or some other reason? I wish methotrexate worked as well as doctors seem to think it does. I can't honestly say that is true and I won't talk about some of the side effects from methotrexate. Prednisone isn't always that great either but other options are limited. Actemra does seem to have some promise but relapse when stopped seems to occur. Sorry, I'm not much help but I wish you well. Maybe you could copy what you posted and send it to your doctor.

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I could if blownmy intestines up with the dividiculitis that it gave me. My cholesterol and triglycerides were both 360. I cannot ever go on it again. Very high blood sugar also.

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Good to know ... thank-you. I also take Actemra but hopefully not too long. So far, the every other week injection seems to help somewhat.

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It generally takes about 3 months before the methotrexate starts working. I was on it for a year and it did help some with the pain. I noticed how much it was helping after I stopped it. The problems I had with it were; the side effects (hair falling out and mouth sores) and I felt they really rushed me to get off of the pred. which led to a major flare that I can't seems to recover from 1 year later. The Zoloft may help with the pain. I am trying Xanax to see if it will help settle pain down and help me stabilize a little. I have a really bad back, fibro. and PMR. The triple whammy of pain syndromes. I agree with what others have said. You can't just 'determine' that you are going to take less pred. it just doesn't work that way.

Good Luck

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I’m on what my doc puts me on.

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On MTX I reduced from 18mg to 7.5mg using one of the Slow Methods of reducing, 1mg per month until 10mg then by 0.5mg to 7.5mg when l had to stop MTX for Surgery & Chemo but recommenced when the PMR started again 18months later.

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Maybe, you could take a tad more prednisone while waiting for the methotrexate to work. Tell your doctor first-- just to let them know. I usually feel OK at 7 mg but better at 10 mg.

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I do labs end of week and when they go back to doc we will talk about my meds.

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Can I ask if you have PMR or GCA or both?

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Both.

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You sound like me. Fibromyalgia for 33 years then recently diagnosed with PMR. I use the term "walk in the park" also when I compare the 2 diseases. My rheumatologist is waiting til May to put me on Methotrexate instead of Prednisone since I had such a bad reaction to it . I had no quality of life. Right now I'm on Celebrex and Cymbalta. The Celebrex was only helping a bit (and I am taking the highest dose). It's day 4 of Cymbalta and, fingers crossed, the combination will help. If I can handle the side effects, in 2 weeks I double the dose. Don't misunderstand, the rheumatologist admits that prednisone is the best course, but sometimes it's better to try something else first.

Good luck and I hope you find relief soon

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I had to smile when I saw how we describe the illness in the same way. Are you in the states? I live in SE coast of Florida. This is so much worse then Fibromyalgia and I sometimes think that fibromyalgia is a precursor to PMR and then PMR being left untreated for so many years because we still think it’s fibromyalgia. So untreated PMR turns into GCA. I’m a pack rack when it comes to blood labs and I have started looking back at them. I found sed rates of 30 over 20 years ago. When I’m up to it I will try and log all the pertinent tests and see if there are labs that the might indicate the Fibromyalgia was early PMR.

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I live in Oregon. I've been wondering the same thing about fibro being a precursor. I've noticed alot of people also have PMR. 17 years ago I had the best rheumatologist for over 15 years. Then he retired about the same time we got transferred to a small southern coastal town far away from ANY specialists. The town we lived in was also a revolving door for internists on their way to someplace better. I had a new doctor every 3 to 6 months who would mess with my medications, didn't even know how to pronounce another auto immune disease I had called Sjogrens. So after about 5 years, I started travelling 120 miles to a new internist (who I still have today). But no rheumatologist yet. So forward 17 years after my excellent rheumatologist retired and I knew something was terribly wrong, my internist did the full exam, x Ray's, blood work and sent me to him with the diagnosis. Why am I giving you this long story? Because, for all of the years I was seeing this internist and mentioned my RA, he was only treating me for fibro. Everytime I saw a new coastal doctor (between my former rheumatologist and my now internist) something got dropped from my files! Bloodwork, surgeries, diagnosis etc. I wish I had kept my own records over the years. You can be sure I'm doing that now! I'm being thorough (I hope) with what I need to do. I have an appointment with an ophthalmologist on Friday, because I'm also having symptoms of GCA and my rheumatologist says I have a lot of symptoms of myosthinia gravis.

I apologize for the long text, but I appreciate getting ad much info as I can from others to hopefully help me and hopefully I can help someone else out. I hope things get better for you soon, Aleish ❣

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There really is no reason why fibro should be a precursor to PMR - they are two totally different disease mechanisms: PMR is inflammatory, fibro is a problem with pain perception. There are people who have had ME/CFS prior to PMR - and there could be a possible link there.

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I did the Myasthenia Gravis workup before the vasculitis diagnosis and obviously I did not have MG. I asked this doc, who was at U of Miami, Jackson Memorial, where to go next and he had no clue. I went back on

line and figured out my own diagnosis and then new who to see for a proper workup.

Please don’t be concerned about writing too much. That’s why we are all here. We need answers.

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Reading back on this text I sent you, Aleish, it doesn't sound like I have a new rheumatologist. I also live in a big city now where it makes seeing a doctor just a little bit easier. 😉

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What reaction to prednisone did you have which makes a dangerous drug like celebrex preferable, or methotrexate which doesn't help PMR pain?

I've just gone back and read some of your earlier posts. I note that you were on a much higher dose of pred years ago and for rather a long time. This is not the way PMR is treated, and in GCA the high dose is only at the beginning to save eyesight, and a taper is started as soon as possible. I really do think it's the lesser of two evils if you are looking at being treated with drugs like celebrex, cymbalta and methotrexate instead. That trio is unlikely to give you the relief that a moderate level of pred will, and all of them come with side effects, some rather serious.

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I had weight gain (understandable(, a horrible acne that broke out all over body, moon face, insomnia, hot flashes, and what I can only describe as manic episodes. It eventually made my symptoms worse.

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I have been on Metho with 10 mg of prednisone for 3 weeks now and it is really helping. The PMR diagnosis is in question--Fibro and RA are up for grabs at the moment. Tommorrow I decrease the pred to 7 mgs as per my rhuemy. I must say thta it has already been amazing at helping with pain but it certainly wasn't an overnight occurance. Depression is a huge part--How is your B-12? and have they suggested folic acid with the mexo?

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I use folate. I forget my b-12 level but I try and use it but always feel like the sublingual gives me a headache. The rheumatologist did not suggest but. maybe I will look into a script for the injections.

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