Methotrexate and Prednisone : I’m wondering if any of... - NRAS

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Methotrexate and Prednisone

BonnieT profile image
60 Replies

I’m wondering if any of you are taking methotrexate and prednisone. If so, for how long. My doctor doesn’t want me to continue with the prednisone because long term use can cause other problems. I’m 72. Should I reall need to be worrying about long term use? Also, anyone with blurry vision while on methotrexate? Thank you.

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BonnieT profile image
BonnieT
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60 Replies
AgedCrone profile image
AgedCrone

You have a caring doctor who is trying to help you....I reckon Pred is the drug from hell.

In time you could possibly get all sorts of side effects from it, & it will be much harder to stop when you have been on it for a while.

Once the Mtx is working fully it should be possible to stop the Pred & still

be comfortable.....which is what your doctor is suggesting.

I was on Mtx without Pred for 7 years (It didn't agree with me at all......for which I am now very grateful) ) & I had no blurry vision. Have you been checked for cataracts.....most people in their 70's do have them?

BonnieT profile image
BonnieT in reply to AgedCrone

Agedcrone. I know I replied to your post but I don’t see it. I indicated that I know I have a caring doctor and respect her wishes. I thank you for your input. It helps to hear from others in the same situation. Thank you so much for your response.

AgedCrone profile image
AgedCrone in reply to BonnieT

I think this site is having a nervous breakdown this weekend.

I just read a post...went to reply & a 5 year old post appeared from someone I have had no Contact with.

Let's hope Support at HU sort things tomorrow.

ruth_p profile image
ruth_p

I was on both as a teenager and you really don’t want to stay on the pred too long. It caused me to get cataracts at 17/18 and to need my hips replaced at 25 and 26, as well as massive weight gain and moon face. AgedCrone is right it is an evil drug lol, it’s just a shame they make us feel better when they work.

BonnieT profile image
BonnieT in reply to ruth_p

So sorry to hear of your problems with it. And you’re right, it works so well it’s a shame it causes such side effects.

helixhelix profile image
helixhelix

Sure you should think about long term use at 72, you have years and years ahead of you. In fact possibly even more important that you look after your bones at your age. Pred can weaken bones and make things like hip fractures more possible - which is the absolute last thing you need.

BonnieT profile image
BonnieT in reply to helixhelix

Thank you, helixhelix. I am deathly afraid of falls and I don’t need additional problems. I will stop looking for reasons to take the prednisone.

Simba1992 profile image
Simba1992

What dose of pred are you on? Were you newly diagnosed? Have been reading about pred lately since was forced to take it to stop flare and have found interesting information both on the ill effects and good effects. Taking pred longterm even in small doses seems to have adverse effects whereas short term in the beginning of RA together with mtx show good results with less erosion. There are also ways to minimize side effects and make weaning off easier. For example taking pred alternate day does not cause adrenal supression or cuhingoid side effects. Unfortunately the risk of osteoporosis still remains. Taking pred at 2 o'clock at night also gives less side effects. It's not easy to choose meds, all have their downsides.

in reply to Simba1992

Interesting read peoples, I have noticed since they added prednisone to my daily diet that I do not get up at night to use the bathroom. Has anyone else noticed this?

BonnieT profile image
BonnieT in reply to

Yes. I noticed that too.

BonnieT profile image
BonnieT in reply to Simba1992

Yes. I’m newly diagnosed and took it in the beginning, weaned off, started methotrexate, had flare, back on, now off. Still increasing methotrexate and do see a bit of improvement. I have a cousin a few years older than me who takes prednisone for his pain as needed which seems pretty often. His doctor has never tried any other drugs on him. He has periodic blood tests and has been doing this since 2000.

helixhelix profile image
helixhelix in reply to BonnieT

"His" pain? Women are more prone to osteoporosis, and something like 3 times more women suffer from hip fracture than men. (don't quote me, but it's a lot more). Your cousin is your cousin, and his doctor is his doctor - all entirely different!

BonnieT profile image
BonnieT in reply to helixhelix

Thank you. Understood.

Evaflo10s profile image
Evaflo10s

Hi , I’m on 20mg methoxetrate injections and 17.5 mg prednisolone daily . Only recently came down from 20mg prednisolone which I’ve been on since December last year .

I have blurry vision also but my nurse says it’s because I have a very active disease which is still uncontrolled .

They don’t want me to be on the amount I’m on now but I’m suffering with just the small drop in mgs .

I couldn’t move without it and as a single parent of 3 I need to be able to get away from them 😊.

Il worry about the consequences later , I need to live and move for now .

BonnieT profile image
BonnieT in reply to Evaflo10s

Hoping all will work out for you. Difficult enough being a single parent without RA making everything so much worse.

Yogi-bear123 profile image
Yogi-bear123 in reply to Evaflo10s

Know how u feel...having children to look after and be as well as possible for them makes u do whatever u can do. I do think that trying to counter the side effects of the steroids helps...even if it’s marginal,better than nothing! U don’t say how long you have been on the methotrexate? Sounds like u might need to try something else.....good luck

Evaflo10s profile image
Evaflo10s in reply to Yogi-bear123

Thank you 😊

. I’ve been on MTX since February . We know it’s not doing much except helping with the stiffness .

Have also had lef and ssz but couldn’t function on either of those .

We knew I’d need biologicals months ago as I have “horrendous” amount of joints involved and it’s so active .

Just got to get through 6 months of drugs for latent TB and then , hopefully , il be starting to get better .

Interestingly neither my consultant or nurse have ever said anything much about my steroids . Thank goodness for the people and Info on this site !

Yogi-bear123 profile image
Yogi-bear123 in reply to Evaflo10s

Ah ok. Took me a couple of years and failing all drugs( side effects were pretty bad) to get onto a biologic..and third rheumatologist to give the right .diagnoses. Steroids are a bit the devil u know ,they are a very “ dirty” drug. Biologics targeted and clean( ish!)...only u know how u feel and what u need to function....🙂

Evaflo10s profile image
Evaflo10s in reply to Yogi-bear123

Used to be cigarettes and alcohol but they really don’t like that answer 😁

Mmrr profile image
Mmrr

BonnireT, yes I'm on MTX and prednisone. The plan by my now retired rheumatologist was to stablise MTX, then, reduce prednisone. My new rheumatologist wants me off prednisone before MTX is stabilised...I had to reduce MTX due to bowel toxicity, and just about manage to tolerate 12.5 mgs by injection weekly. But we are now not sure what gastric and bowel and generalised fatigue is being caused by ? MTX or prednisone taper. I'm taking the prednisone taper slower than instructed and managing OK, except for the muddle of what is causing what.

BonnieT profile image
BonnieT in reply to Mmrr

All so very difficult. I worry about the kidney and bowel thing. Stay strong.

Amy_Lee profile image
Amy_Lee

Hi BonnieT,

I was using both at the start. About 6 months after that, my rheumy wanted me to stop prednisolone and he added Arava for me. Yes, I started to have very bad vision since I was on all these medication.

Amy

BonnieT profile image
BonnieT in reply to Amy_Lee

My rheumy only had me on prednisone for a couple of months. I’m now on methotrexate for about three months without it. I want to say I think it’s helping but stressed about another flare popping up out of nowhere. It seems most docs have us on similar programs.

Mmrr profile image
Mmrr in reply to BonnieT

It is so difficult at times, but hopefully things will stabilise.

BonnieT profile image
BonnieT in reply to Amy_Lee

Thank you for your response Amy. Every bit of info helps.

nomoreheels profile image
nomoreheels

Hiya BonnieT. I'm on MTX & pred, 9 years MTX, 5 years pred. I have osteopenia/borderline osteoporosis & have DEXA scans every two years. The last 2 scans have shown no changes in my bone density, in fact my fracture risk has improved slightly, which I attribute to 3 things... diet (including dairy), supplementing with Adcal-D3 & exercise. I want to stop pred, have asked to do so for 4 years, as I believe my RD should preferably be brought under control by DMARDs (anti-TNF's/biologics/JAK inhibitor if appropriate) rather than combining with long term pred. It just seems a backward way of treating, corticosteroids were used for RD years ago before the advent of DMARDs, fine then as they were pretty much the only option. My Rheumy & I will be discussing tapering off pred at my next appointment at the end of the year. Even though I've managed to reduce it to 2mg it will need to be a long taper.

So, in your position, I would heed your Rheumy's advice, I'm 58 but I don't think your age should be a deciding factor, 72 is no age anymore & the risks of fracture & other unwanted commonly known side effects are too high if you've been on pred long term. Given RD itself can also reduce bone density you don't want to possibly double the risk if you can be controlled without pred & with DMARDs, MTX in your (& my) case. Look at it this way maybe, if you sustained a broken arm, would you be able to manage, how would it affect your daily life? Used as a short term therapy to bring a flare under control is a different matter, this is how they were prescribed for me with my previous Consultants. Just my opinion of course, you're best discussing your concerns with your Rheumy, he's the one who knows your history & disease or osteo status.

I don't have blurry vision on MTX so can't help you there I'm afraid, again something to discuss with your Rheumy, as you should with any side effect really, otherwise how is he to know, he'll think all is well when in truth it isn't. Have you had your eyes tested recently? If not it might be prudent to get them just checked out at your local optician.

I hope this helps & you can come to some understanding with your Rheumy.

BonnieT profile image
BonnieT in reply to nomoreheels

I respect your opinions and contributions to my questions. Thank you. I’m presuming nomoreheels means you can’t wear high heels anymore? I haven’t been able to for a number of years now and I do so miss them at times. Thank you.

nomoreheels profile image
nomoreheels in reply to BonnieT

You're welcome. My username isn't accurate any more, you're not the first to comment on it, I've had to explain many times! It was chosen when I first joined, when I couldn't wear heels, but RD has given me quite a few changes to my feet which now means my Podiatrist has recommended I wear wedges or a block heel. Everyone knows me by my name though so I've never changed it. 😊

Yogi-bear123 profile image
Yogi-bear123 in reply to nomoreheels

5 years of Pred...what was your highest dose and for how long? Interesting about your dexa scans being o.k. ( making me a little more hopeful!.... drink almond milk by the gallon) I’ve refused to take any of the bone drugs as not sure my bod could take anymore medication atm! ...would be very happy on 2 mg...in fact my doc said that if I can eventually get one of the biologics to work I will probably be on 2-5 mg for life....

BonnieT profile image
BonnieT in reply to Yogi-bear123

Sorry for my delay. Getting up to look at the bottle was too much. Finally stopped being lazy. (There is pain involved) I started with prednisone in February. The highest dose was 20 mg which I took for two weeks, then 15 for two weeks, then 10, then 5. After which I came off only to flare a week later. Then I was back on. Have been off for about a month now. Only on MTX. 18 mg a week. I have days of nausea, fatigue, inability to think clearly which may cost me my job. Except for my legs which have peripheral neuropathy in addition to the RA, the all-over pain is less. I’m hoping and praying.

You’ve been on prednisone a long time as is my cousin, 15 years. He says he couldn’t function without it but only takes as he needs to get around.

BonnieT profile image
BonnieT in reply to nomoreheels

Thank you nomoreheels! I’ve been off the prednisone for about three weeks now and will only use for flares.

HappykindaGal profile image
HappykindaGal

I was on Methotrexate and Pred for two and a half years. Reducing from 5mg made it impossible for me to function. I've added Sulphasalazine now for 3 months. Although, I'm mega unhappy with taking so many potent drugs (as is my GP actually), for the second time of trying, I'm off the Pred. Came off 3 weeks ago. Have the aches reappeared - yes, but not to a huge extent although yesterday was not good and I feel I partially ruined a day out with my friends (they're too kind to agree!). Whilst on Pred, my blood pressure soared and I had palpitations which have stopped now.

Yes, they made life so much easier and now I'm working on getting my weight down significantly. Useless doing it alone, so I have a PT/nutritionist chivvying me along!!

Almost forgot, blurred vision - yes, me too :(

Coming off Pred? First time I tried, I dropped the last 3mg at once which didn't work, this time, I alternated days of 1 mg and that seemed to work.

Lots of luck!

BonnieT profile image
BonnieT in reply to HappykindaGal

Thank you so much for your response. I’m lost at times.

MandiS profile image
MandiS

Hi I was on predisilone and metho for 9 months last year this year been back on the pred for last 3 months with metho I am 52 every time I try and reduce pred I cease up on10 mg daily which Rheumy wants me to continue with for the time being also on hydroxchloroquinine . I would love to come off but need to be able to work I still flare even on steroids but at least I can move. I think it depends on each individual and I think your Dr knows to be on steroids long term is not good as my Rheumy told me they can take up to 6 months for your body to get back to normal after stopping them. Take care

BonnieT profile image
BonnieT in reply to MandiS

Thank you MandiS. I appreciate your input. Pain is an awful way to live. I hope something changes for everyone and soon.

LadyJan profile image
LadyJan

Bonnie t.

I have been in predicting for 12 years...max 10ml but been on 5ml for at least 3 years, plus Mtx. CRP remains high tho and enbrel lowered it to 32 but does nothing for pain. I am in limbo, pain in hands, wrist and foot. On codeine, co codermol, paracetamol depending on how I am coping. Bloods today so we'll see what that brings.

Yes a few blurry times. I am 75. Life is becoming a bit of a struggle.

Lady Jan

BonnieT profile image
BonnieT in reply to LadyJan

Thank you. Thankful for this blog where we can share our stories.

Yogi-bear123 profile image
Yogi-bear123

Have been on a mixture of steroid injections and pills over the last 3 years. Currently on a changeover of drugs hoping this new one will work...so on 20 mg Pred. I’m 57 and got a 13 year old son. Osteopenia but also have dexa scans every year to monitor. I eat pretty much no sugar as Pred metabolises it in a different( not in a good way) I am still on constant pain relief as my body is pretty much affected across 5he board . The Pred makes life bareable for me and also able to walk my 3 dogs... very conscious of working on strengthening my bones with excercise and food to counter effect the side effects and .look forward to 5he day when I can come down again off Pred. But sometimes for me it Is a necessity!!! Good luck.

Pange63 profile image
Pange63

Hi Bonnie

I started on Pred two years ago at the age of 53 to treat PMR. I was diagnosed with RA In June and have started on methotrexate. My rheumatologist is keen for me to come off pred. I am currently taking 2 mg a day and we hope that once the methotrexate embeds I can come off pred. Now I am on 2 mg I realise that the pred was very effective at masking the pain but I too have had side effects. 3.5 stone weight gain, muscle wastage , puffy face and glaucoma/cataracts so I am really keen to come off it. I would say the pred will give you a lot of relief from pain but do aim to treat it as a short term solution as the side effects are unpleasant. I am looking forward to getting back to health in the next few months. I am having eye surgery in October and have started to notice the bloating from pred is reducing. I am now looking to get back to swimming and yoga classes and am taking more care with my diet by eating anti inflammatory foods! Hope that helps.

FRAIiLT profile image
FRAIiLT

I was just diagnosed with RA at 52 and am on 14mg of Metho and 10 Mg of Prednisone. Has anybody tried smoking weed? Diet? These comments, while appreciated and genuinely welcomed are kind of horrifying. It is a frightful prospect to think there are no other options than Methotrexate and Steroids, man made synthetic drugs. I can't help but think that nature would not be so cruel. There is this program I saw on Amazon Prime that dealt with Inflammation from a different approach. amazon.com/Inflame-Me-Rever... / google.com/search?q=marijua...

Stephs311 profile image
Stephs311 in reply to FRAIiLT

FRAILT,

I am in Pain Management so MJ is not available to me. A friend of mine uses medical marijuana for her RA in conjunction with diet, exercise and a biologic. Unfortunately I dont think diet and natural remedies alone will help prevent joint damage. I know some foods irritate some people making inflammation worse, you could try one of the anti inflammatory diets. Good luck finding a solution. These autoimmune diseases are not for the faint of heart, it takes A LOT of trial and error to find the treatment that works best for you.

Yogi-bear123 profile image
Yogi-bear123 in reply to FRAIiLT

My pharmacist told me to try medical marijuana for pain as a friend of hers who has m.s said that it has transformed his life. U can’t buy a high enough grade here but guessing now u could apply after the recent ruling? I’m not sure but I might have a chat with my gp( that will be interesting!)...I think food helps ,maybe with inflammation ....maybe not,but it’s not going to hurt cutting out the crap and making your body as strong as it can be! My digestive system is fucked on steroids,so really have to work hard on my diet!!!! Will improve as I come down on my dosage........

Maggiemae58 profile image
Maggiemae58 in reply to FRAIiLT

Frailt I am on Methotrexate 20mg and weening off sulfasalazine. I’ve cut out all dairy and sugar..even sugar from fruit is high. Although I have raspberry and strawberry which are lower in sugar than most. No potato, rice or wheat flour. Right now my RA is in remission and I do believe change in diet is the reason. It may sound strict but not having the pain is my reward. Fingers crossed it stays this way.

BonnieT profile image
BonnieT in reply to Maggiemae58

This sounds like a gluten free diet. I have tried it and it does seem to help. I have too great a desire for bread to stick with it not knowing for sure it really is what’s helping.

FRAIiLT profile image
FRAIiLT in reply to BonnieT

I totally understand about the bread. :)

Maggiemae58 profile image
Maggiemae58 in reply to BonnieT

Sorry to hear that Bonnie but I would do anything not to have this pain. So worth the try for me and feel so much better RA wise. Hope you find something that works for you.

FRAIiLT profile image
FRAIiLT in reply to Maggiemae58

Thanks for that. I can really see where what we put into our body is so critical.

Maggiemae58 profile image
Maggiemae58 in reply to FRAIiLT

I’ve read and listened to Clint Paddison who cured his RA by diet. Truly amazing. His number on start to attacking this disease is cutting out dairy. If you get s chance google his name and listen to Afew of his podcast.

DeeDB185 profile image
DeeDB185 in reply to Maggiemae58

You have to pay for his program, so if the bottom line is eliminate Dairy what else is there to do ?

Maggiemae58 profile image
Maggiemae58 in reply to DeeDB185

No the podcast are free where he explains the basic idea. I never purchased it. Just got info from his podcast.

Stephs311 profile image
Stephs311

Hi Bonnie,

Long term prednisone can cause a plethora of health problems. I use it for severe flares and used it before I had a definitive diagnosis from my Rheumatologist. My Rheumatologist prescribed Methotrexate and Prednisone, I couldn't tolerate Methotrexate. The side effects for ME were awful. I am now taking Humira and seem to have few side effects (just injection site reaction, headache and itching). I still use Prednisone a week to 10 days in duration as needed. I hope you're able to get sorted soon, GL!

BonnieT profile image
BonnieT in reply to Stephs311

I went through breast cancer Stage 1 a few years ago. I went through three months of radiation therapy and then to 5-year chemo pill. I tried two of them and was too sick to continue taking it as I was 24-7 care giver to my mom at the time and couldn’t even get out of bed to feed her. They never offered methotrexate back then. I am tolerating it ok so far. My rheumy has provided me with a prescription of prednisone to use in case of flare. Thank you for your response, Stephs :)

tootsiebootsie profile image
tootsiebootsie

Hi Bonnie T. I'm Bonnie D. when I was first diagnosed with RA, I took methotrexate and prednisone. my sister introduced me to turmeric. it took a while to get in my system, but it finally worked. I take two every night. I still keep prednisone on hand just in case I get a bad flareup. Thank God it's all been good. Turmeric seems to be working for me. once a week I take 5 methotrexate pills. Hope you find something that works for you.

BonnieT profile image
BonnieT in reply to tootsiebootsie

Hi, Bonnie D. My son has been after me to try turmeric even before I was diagnosed with RA. I bought the spice to cook with and didn’t care too much for the taste. I see it is now in pill form with the vitamins at my grocery store. I think I’ll get it next time I’m shopping. Thank you. Hopefully it will help me, too. :(

Stephs311 profile image
Stephs311 in reply to BonnieT

I drink a coffee with turmeric and vitamins, cant taste it!

tootsiebootsie profile image
tootsiebootsie in reply to BonnieT

hi bonnie T. good for you. yes try it, but give it a few months to get in your system. Also research Tumeric. organicindiausa.com. This is where I buy mine. Prayers for you

BonnieT profile image
BonnieT in reply to tootsiebootsie

🙏 and to you, too!

Debkimly50 profile image
Debkimly50

Everyone pretty much said the same things as I would. Prdisone is a wonder drug but long term too many side affects. The only good thing I found was when my face got puffy my wrinkles didn’t show. I have some on hand in case I have a bad flare. Methotrexate plaquinil and humara keeps me able to move.

DeeDB185 profile image
DeeDB185

Prednisone works wonders but is a DEADLY drug. It causes a host of problems such as osteoporosis, diabetes and other things. I have blurry vision if I use my cell phone for reading texts... I was on prednisone for approx 4 months and weaned myself off it as soon as I started the methatrexate. My dr wanted me to take both meds for 2 months but I took my chances, weaned off and doing well.

singlecrochet profile image
singlecrochet

blurrying vision may be due to RA, not the MTX. Needs to be reported to your Rheumatologist.

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