Methotrexate: Reumy wants me off prednisolone as it... - LUPUS UK

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Methotrexate

Jeffscott69 profile image

Reumy wants me off prednisolone as it masks too much to see what's going on,will methotrexate help with the joint pain?,iv to get bloods taken ev 3wks when on this drug,bit worried what it does to me.x

26 Replies

Even in shot firm, it's hard on your stomach. I would be doubled over in pain yet not be able to move to call an ambulance. Was found more than once in the floor crying, unable to move.

Hi jeffscott

Tough your having to come off Predniolone, hope your Rheumy suggested doing it slowly?.

Methotrexate should help with the joint pain, it's used for that!.

Good luckX

Wishing you all the best with this. And thanks for including this explanation for why rheumatology want you off prednisolone. Over the years I've heard all sorts of explanations for why Drs are especially reluctant to let any newly-diagnosed patient stay on daily pred for long, and also why Drs are now so v keen to get patients who have been taking daily pred long-term off pred asap. In my experience, these explanations are mainly to do with pred's side effects

Prednisolone's various side effects are well know to us...after all, the medical establishment has had over 5 decades to learn about these side effects, just as we've had decades to experience these side effects and their long term repercussions. But we've also had a chance to discover the huge advantages of taking prednisolone

in my case of early onset immunodeficiency + infant onset lupus, it seems to me that if I look really hard at what matters to my Drs most, the BIGGEST reason I've been given for only being on daily pred as part of a taper taken during a flare, is the very reason your Drs are giving you: prednisolone masks so much about the way our versions of lupus behave, that it's v hard for our Drs to understand the dynamics of our individual versions of lupus + any overlaying multi system conditions we're managing.

Treatment now is increasingly about the individual and their unique version of immune system dysfunction. Time will tell just how the evolution of treatment with myco, metho etc etc evolves...e.g. when & to what extent Drs will be saying similar things about this generation of meds the sort of stuff they're saying now about pred...including that meds like metho, myco etc mask too much to see what's going on....I don't mean to be defeatist about this, but I like to experience the great benefits of my meds with my eyes as wide open as poss. After all, another thing all my Drs emphasise is the importance of risk-benefit awareness in all treatment plans

Hope you'll let us know how you get on

Take care

Hi. Methotrxate is widely used and a better choice for joint pains than other similar drugs. I have been taking it for nearly 18 months and have tolerated it well although some people report some nausea with the tablets. You only take it weekly with some folic acid 3 days later. It's true you will need your bloods checking - fortnightly to start off and then monthly. You should also keep alcohol intake down to 4-5 units a week which is no bad thing anyway I guess. My worries about starting the drug proved to be exaggerated and I've found it to be fine. Best wishes

Hi :) Im starting on Methotrexate next week .. Ive been told my bloods will be taken every week when given the medication .. My Consultant said its best to try it as Im in agony with Flares and nothing is working .. my joints are inflamed and have swelling .. she said it will help with joint pain and inflammation. You will have Xrays done (mines this Wed) to check your lungs and chest and they keep checks on your kidneys etc with weekly bloods ... First course is Thursday so I will let you know as Ive inflammation of the stomach :/ which I believe is the Lupus doing it .. Kind regards to you .. x

Hi ive been on it 5 years now, its an immunesuppressant,so it supresses ur immune system so it stop fighting you,its also great for joints and pain,its taken once a week I take mine Mondays at bed time as it can make u sicky, u do have to take folic acid twice a week but not on the day u take ur metho, u should have u lung test first as this can cause breathlessness, and ull find u have ur bloods taken every week for tje first month then every 3 months after, u are give a booklet which is how ur bloods are monitored, ur Dr or consultant completes this and is ur chemist id doing there job rite tjey should ask to see ur booklet before they dispense ur metho,are u on hydroxychloroquine to??? Hope ive helped

Yes I'm on hydroxychloroquine,feel it has helped with the fatigue.

Elle-26 profile image
Elle-26 in reply to kittykat68

Thank you kittykat68, yes Im on hydroxychloroquine -x- This is what I hope for .. :) x

Your Rheumy is right. I assume you are on a steroid. Steroids have other issues that can happen - osteo, moon face, weight gain. I have ITP along with SLE, and my hematologist tried a massive dose of steroids once. Sure, it raised my platelet count to about 100,000, but in 4 weeks, it was down to the 40's again. I told him I would never take them again. I took 40 pills and they hurt my stomach even with Prilosec. Better off steroids than on. They do "mask."

Elle-26 profile image
Elle-26 in reply to tennissenior

I was on steroids last summer but was taken off them as my weight went up rapidly and caused pressure on my joints .. from someone who was 64 kg and then 84.2 kg after steroid treatment :( Im now 80kg and dropping so I hope this treatment doesnt cause weight gain .. Ive been hardly eating since stomach problems -x- Find out today as bloods and Xray comes back when I see the Consultant this afternoon -x-

Hi, Ive been on methotrexate now for three months. I am now beginning to feel the real benefit from them - it takes about the three months before you feel the full effects/benefits if they are going to work.

I did feel nauseated and still do on and off, but my GP gave me anti nausea tablets which work a treat. I usually take one an hour before taking the methotrexate and then as and when needed, especially for the few of days after taking the methotrexate.

Again I get bloods taken every two weeks and was told by my GP , that the bloods would need to be stable over six consecutive readings before I'd be moved on to monthly bloods. But apart from the nausea feeling I've had no other side effects. I don't think there is any need to be concerned when you think of the damage lupus can do to your system - greater damage in my opinion, than methotrexate. All the best and hope it works for you. If it doesn't suit you then there are other tablets they can give similar to methotrexate that works better of some people.

Elle-26 profile image
Elle-26 in reply to bennett

Thank you so much Bennett x

Hi I have been on methotrexate 20mg weekly for about 10 years, last few I have been injecting it. no side effects. I have been able to reduce prednisone to maintenance dose of 7.5mg daily.

for last 3weeks have had an infection in my leg and had to stop methotrexate as on antibiotics. I have noticed my joints are stiff sore to touch and very painful. I also have 4weekly infusions of tocxzillumab which with the methotrexate keep me fairly mobile.

I know methotrexate is a powerful drug, used in chemotherapy, so your Consultant would not give it if he/she thought it would not benefit. It is a pain having to have your bloods done every 4weeks, but the benefits outweigh this. If you are concerned speak to your rheumy team or GP.

You can also get more info from ARC on line.

Good luck, hope it works for you

Elle-26 profile image
Elle-26 in reply to Rudeforth66

Thank you Rudeforth66 x

I took it for 7 years without any problems and it did help. The only issue I had was with alcohol. I used to swell up after even one drink, so had to go tee total. Good luck.

Elle-26 profile image
Elle-26 in reply to lupie46

Thank you lupie46 :) x

Ive been on mtx for 8 weeks now. Hydroxy hasn't helped but i still have to take it alongside, apparently they work better together. The mtx sounds scary. I was really worried that i would be ill and need time off work and i have 2 young children who are hard work, but actually i feel fine. Its started to reduce my pain and stiffness. Not completely...im not sure it will ever do that but its helped. Just make sure you keep up with your blood tests. It hasnt been anywhere near as bad as i had imagined. I hope this helps.

I felt it took2mthS for hydroxychloroquine to work,was just taken 5mg prednisolone for months,actually lost half a stone,my sons are 24 and 21,be very hard for you as your kids still young,felt great wi steroid,got sinus infection again,had 4 ops for this,see ent surgeon mon,reumy said she not ruling out weganers,I'm bit worried,if off work again before oct iv to go down capability route,re need my job,my husb and I divorced ,feel line manager making me ill,re stressing me out,I recognise wen stressed im very sore.,had my lung X-ray,wed,I start methotoxate mon.x

Liesel profile image
Liesel in reply to Jeffscott69

Still interested to find out what your illness is,

Liesel

Elle-26 profile image
Elle-26 in reply to tazzydevil

Thank you tazzydevil x

Glad I have read all these responses as possibly starting methotrexate in September. I need to be off steroids and this is the next choice as I have tried mycophenolate and azathioprine and neither agreed with my stomach. Was hoping to do rituximab but protein count too low.

I have been on Methotrexate injections for some time.It does help with joint pains but,it also lowers the immune system so,I have just experienced this.My hair has thinned dramatically as has my weight but,I can move without being in agony.Of course,we are all affected differently so,do check with your consultant.

Hi

I am on 22.5 mg. I find I have found taking this with hydroxychloriquine has let me have a near normal life. I also take citalopram , vitamin D and magnesium and I have very few side effects. I was on I'm steroid injections until they got my symptoms under control and where increasing my dose but my last injection was about 9 months ago.

I'm not symptom free but I don't take pain killers as I can bare the few twinges i am left with. The pain is much better in my joints and muscles and my bloods are improving.

It's really been worth going on it. I take the mtx at night as I found I got quite tired and it could effect the stomach. I don't get stomach pain or feel sick, I need to be close to the loo which means trying to run up stairs when I'm at work and hope no one is there before me. (Obviously a number of issues with that - going up stairs, moving fast from sitting, communal toilets).

I haven't stopped alcohol altogether but never have it the day I take mtx and always take my folate a few days later.

I would say it's worth a try. As you say, they monitor you carefully with bloods and slowly titrate the dose up.

By the way I have lost a good amount of weight since the steroids have stopped too.

Good luck

Hi

Just to add. Thanks to these meds I'm off for an hour walk over the local field with my 3 dogs. That wouldn't of happened before I would of opted for the short walk. I will come back and ache like I've done an hours aerobics but it goes and I can do it thanks to these meds.

Elle-26 profile image
Elle-26 in reply to Whathappned

Wow! Now thats something to hope for :) Thank you for sharing this Whathappened x

Hi

It's not all the time and you still have to pace yourself - which I haven't done recently and today I feel terrible but on the whole it works.

Try to stay positive and feel it will work and expect bad times too.

But on the whole life is good.

When you are I'll know it will get better

Xxxx

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