Methotrexate and Prednisone: Hi All--I have a question... - NRAS

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Methotrexate and Prednisone

mrdiggs profile image
58 Replies

Hi All--I have a question for everyone . I have been on both these drugs for 4 1/2 to 5 yrs.I have never been completely off the Prednisone in that time. I have taken various doses depending on what's going on , but never completely off. I'm wondering if anyone else has been on Prednisone for that long a period of time in conjunction with whatever other drug they are taking for their RA ? Also went off the Methotrexate for 4 months and of course had a nasty flare up so back on it again and losing hair like mad.It doesn't completely take away the aches and soreness but it really helps as far as debilitating pain. Look forward to hearing from all of you out there and what your experiences have been. Keep the faith and keep on trucking -onward and upward is my attempt at a motto---------THE GIMP

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helixhelix profile image
helixhelix

I started just on MTX and short courses of prednisone and the regular steroid shots. However my rheumatologist had the view that this wasn't a sustainable long term treatment plan, so I was stepped up to triple therapy. Which works well for me and I'm generally in remission and have been for last 5 years or so. Has this ever been suggested as an option for you?

mrdiggs profile image
mrdiggs in reply to helixhelix

Thanks for the reply. No, my Dr. has never suggested therapy of any kind and has never suggested coming off the Prednisone . I have at times worked myself down to 2 mgs. per day and with flare up dosage has gone up to 20 mgs. Right now I'm taking 5 mgs. per day and 15 mgs of MTX per week. I'm slightly worried bec. somehow I have developed a tear in my right ankle tendon which seems very strange bec. I have been an athlete all my life- a competitve singles ice skater and professionally taught for many years. I never had any ankle problems of any kind and did nothing to sustain this injury. Have been fitted for an Arizona brace which they suspect I will have to wear for the rest of my life.My concern is if it happened to the right ankle it could happen to my left. Somewhere I read that Prednisone can cause tendon tears so you can see my concern.The only other treatment for this is a rather involved, long surgery with a rather long recoup or a fusion which I will never consider.And unfortunately the bones on the top of my foot are in really nasty shape from the RA. The right knee is involved with almost bone on bone and a lot of arthritis. That's why I call myself the Gimp-LOL. However , love to play golf so I'm going to have to figure out a way to make this work--. Can you explain your comment on therapy.I haven't heard anything about this. Would greatly appreciate. Thanks again and stay well.-

Eiram50 profile image
Eiram50 in reply to helixhelix

Excuse my ignorance HH but can I ask, what constitutes “triple therapy?” I’ve never fully understood.

Marie

Karen77 profile image
Karen77 in reply to Eiram50

I believe triple therapy is Methotrexate, Hydroxychloroquine (Plaquenil) and Sulfasalazine.

Eiram50 profile image
Eiram50 in reply to Karen77

Why just those three?

Karen77 profile image
Karen77 in reply to Eiram50

Well, triple suggests just three ;)

I'm pretty sure when I was first diagnosed and researching possible medications, that it's a pretty standard treatment. Rheumatologists often start with MTX and hope that will work. When it doesn't they try combining it with something else. At some point, I guess they discovered that those three are effective together.

Eiram50 profile image
Eiram50 in reply to Karen77

So it wouldn’t be for example, methotrexate, leflunomide and arcoxia, or a biologic with two of them? Confuses me?!

Karen77 profile image
Karen77 in reply to Eiram50

If you're talking "Triple Therapy," then it's those three.

I suppose three of any DMARD/Biologic combo could technical also be considered a triple therapy.

Eiram50 profile image
Eiram50 in reply to Karen77

That’s my confusion, I guess as my thinking would’ve been any three as opposed to a specific three?

Thanks karen

helixhelix profile image
helixhelix in reply to Eiram50

As I've read, triple therapy applies to three traditional DMARDs - not combinations with biologics. The anchor drug is usually MTX or Lef, and then usually hydroxy & Sulpha.

it's just a shorthand for standard treatment pathways. I'm on triple therapy plus 5 other drugs not octotherapy!

Eiram50 profile image
Eiram50 in reply to helixhelix

Haha- thank you HH

NanaFifi profile image
NanaFifi in reply to Karen77

I take prednisolone, hydroxychloroquine and in more recent years mtx but have never heard of triple therapy?

Karen77 profile image
Karen77 in reply to NanaFifi

medscape.com/viewarticle/80...

Cat111 profile image
Cat111

I've been on methotrexate and prednisone now for 2 years been slowly reducing prednisone. Got it down to 5mg now the plan is to get off it.

NanaFifi profile image
NanaFifi in reply to Cat111

Good luck with that!

helixhelix profile image
helixhelix

Are you in UK, or elsewhere? As procedures do vary a bit.

However, a fairly standard approach in the UK is to start people on one traditional drug such as Methotrexate at diagnosis, plus steroid treatment as a short term approach to calm things down until the longer acting drugs start working. The steroids are then phased out.

However if a single drug doesn't do the trick, then you are stepped up and one drug (combination therapy) or two (triple therapy) more drugs added.

And if that doesn't work and your disease is still out of control then you may be proposed biologic drugs.

The regular monitoring of blood results, and changes in disease activity score will guide the doctors as to what's appropriate and when to make changes.

But this is a simplified theoretical version, as many individual variations in practice. But generally people are only kept on steroids long term as a last resort when nothing else will work.

mrdiggs profile image
mrdiggs in reply to helixhelix

I can't thank you enough for this info.I'm in Wilmington, Delaware, USA.- I haven't heard anything close to this approach so will definitely be looking into it.Thank you for such a speedy response-greatly appreciated. Please stay in touch and I wish you continued success in your remission- may it last forever-----------The Gimp

Kathies profile image
Kathies in reply to mrdiggs

Hi, I'm in the U.K. Prescribed mtx with hydroxychloroquin for 8 years with one or two steroid shots, then switched to leflunomide with hxq a couple of years ago, again with one steroid injection. Neither my gp or consultant want to prescribe steroids for anything other than a last resort. My consultant told me early on to expect changes to the drug regime as the course of the disease changes and that new drugs and research is continuing to make amazing improvement to the control of this awful disease. I have monthly blood tests to check inflammation levels and anything else that might be affected. Apart from the fatigue that wipes me out every afternoon I do very well on the combination of dmards. Good luck with your journey.

Marycullen profile image
Marycullen in reply to mrdiggs

I live I. NC and I did the same as UK. Started on methotrexate and then prednisone and then Remicade. Rey common down here.

Mathaircuig profile image
Mathaircuig in reply to helixhelix

works like this in Ireland too.

mrdiggs profile image
mrdiggs

I think that's great. I'm hoping Dr. and I can come up with a better plan then I have right now. I think he just considers me staying on this forever and I really don't like that plan.Considering I've been on this stuff for 4 1/2 to 5 yrs, both MTX and Prednisone. I think we really need to see if the MTX is really working all that well. Have gone off the MTX twice with real flare ups and no end in sight ,but never off the Prednisone. I still get swelling or aches and pains from time to time in varying parts of my body.It seems to like to move around.I will say so far I haven't had the debilitating pain I had when it started.And that is a very great blessing. All of these meds have good points and bad. Can't say I'm a great fan of the Methotrexate. Have lost well over half my hair, sleep pattern is a mess and get eye irritations and dry, dry skin in my ears that really itches ,plus the famous moon face But then I hear what some of these wonderful people in these blogs are going through and I consider myself lucky. Please let me know how you make out when you come off the Prednisone and I wish you the best of luck.Here's to your success------------------the gimp

PaulaE profile image
PaulaE in reply to mrdiggs

Hello.

My mum has been on MXT and prednisolone for over two years now. 20mg MXT weekly and we have managed to get down to an odd combination of 2.5mg for eight days then 5mg for the next day. Mum still has nasty flares but , I think due to her age, the Consultant seems to accept continuing with prednisolone. Mum would love to be able to come off it due to other side effects but despite trying, we just don’t seem to be able to reduce further. Wishing you the best of luck. Paula.

AgedCrone profile image
AgedCrone

Hasn't your doctor ( I presume you mean a rheumatologist not a GP?) suggested changing from Mtx to another Dmard? You seem to have been on meds that aren't working for quite a while?

Personally I think Prednisolone is the drug from hell......I would definitely ask your doctor to have a rethink....with a view to weaning you off it.

If he doesn't come up with anything suitable, I'd change doctors.

mrdiggs profile image
mrdiggs in reply to AgedCrone

I'm beginning to think my RA Dr. is falling far behind with solutions after hearing from a lot of great people telling me about their treatments, none of which have ever been discussed with me. He is associated with a very good hospital but of late doesn't seem to be terribly interested in my case. For instance, I"ve had a very swollen right ankle for months which he kept saying was gout. It didn't hurt the same way gout usually does but he was very definite about it. Went on this crazy diet which did absolutely nothing so I finally said I wanted an x-ray and MRI. Turned out I had a tear in my right ankle tendon which showed up in the MRI. Now will probably have to wear this Arizona brace for the rest of my life if I don't want to good through extensive surgery or a fusion. Neither of those sound appealing to me. Will give him a little more time to see what he can come up with and if he shows any more interest in finding some alternatives, then it's on to the next one. Isn't life grand ??-LOL. Thanks for your suggestions, I wish you the best. Keep in touch and best of luck------------The Gimp

nomoreheels profile image
nomoreheels

I've been on MTX 8 years & a steroid for 4.5 years, most of the time deflazacort (3mg) as that was what I was taking when I moved back to the UK from living abroad. I've been taking prednisone 8 months due to the fact I was starting a taper & as the lowest dose deflazacort is 6mg with only one score in the tablet to reduce to 3mg I obviously couldn't do a safe, long taper, the dose wouldn't have been accurate enough. So, I changed to pred, initially 2.5mg, & I got down to 2mg but the other DMARD I was on with MTX, leflunomide, was halted due to a rare side effect & until tests came back, this meant I had to stop the pred taper. I'm now permanently off LEF following repeat tests & still on 2mg pred until my Rheumy appointment in May.

I had previously tried 2 different bisphosphonates, intended to protect me against possible bone loss from taking steroids, also a daily calcium/Vitamin D supplement, has this ever been discussed with you? I've also had biennial DEXA scans as I have osteopenia borderline osteoporosis, I think each are pretty commonly done/taken if on steroids for any length of time.

Just as an aside, do you know what gimp means in the UK?! It might be worth a check. 😳😱

helixhelix profile image
helixhelix in reply to nomoreheels

Doesn't it just mean someone who walks with a limp? Slightly derogatory, but less so than the other terms used for people with disabilities. Haven't really heard it used since I was a kid, but does it have other meanings now? I can never keep up!

nomoreheels profile image
nomoreheels in reply to helixhelix

I've not heard that before, it means some thing else entirely which is why I was slightly taken aback when I saw it on another post then giggled realising mrdiggs is in the US. Surely I'm not alone in being startled?! Anyone?

helixhelix profile image
helixhelix in reply to nomoreheels

Now I'm curious! So googled.....ah ha....not something I've come across before in life, books, or film!

nomoreheels profile image
nomoreheels in reply to helixhelix

Me neither, or to clarify I only know through channel hopping at silly o'clock pre amitriptyline!

mrdiggs profile image
mrdiggs

Hi Nom---don't have any idea what it means but from your tone it doesn't sound good----LOL. I only call myself that bec. now have a tear in the right ankle tendon and almost bone on bone with a lot of arthritis in my right knee. Have a brace on the ankle and one on my knee. Look like the walking wounded-LOL. Can't go up and down step like a normal person but go one step at a time and side ways step. Walking looks a bit disjointed as you can imagine , but still moving. Love to play golf so trying to figure out new stance and transfer of weight. Should be interesting once spring comes--which can't be too soon as our weather has been brutal this winter.My Dr. has never ordered a bone density test for me so think that is going to be my first question when I next walk through his door. Also not on any supplements except Folic Acid. Thanks for your response, really appreciate hearing from everyone. Hope all goes well for you and keep in touch. Stay strong-----------The US Gimp--

nomoreheels profile image
nomoreheels in reply to mrdiggs

No, & what's equally surprising is I've never heard the word used to describe someone in the context you're using it in! I checked & it does say it's North American origin.

I think you need to sit with your Rheumy & ask just what his forward plan is for you & if there are protection or prevention measures you should be taking having been on steroids long term. Are you taking enough folic acid I wonder, with you saying you've hair loss, if you're not replacing enough it could help. Here in the UK we can take 5mg 6 days, just not MTX day which is what I take. Also, & mine won't be anywhere near as bad as yours, because I have ankle tendonitis, but have you asked about repair surgery? It's just I thought it was a reasonably common op, once more conservative measure have proven unhelpful, check online for peroneal tendon rupture surgery, see if it comes up with what it entails. Years ago I ruptured my Achilles tendon but fortunately having it in a cast for 6 weeks solved that, which is why I questioned it, from when I was doing my research for my options. Is it not terribly swollen, I know it must be painful so you can't live with it just being that way. If you have asked & been told it's not an option I would ask again.

Jesnaskah profile image
Jesnaskah

Hi there!

I'm really sorry to hear about what you have been going through! Definitely get a little pushy with your rheumatologist... You have 3 other DMARD options! Hence, the idea of adding another one or 2 to the mix (triple therapy) along with MTX.

I'm no expert but I've heard that with some individuals, MTX starts to lose its affect after taking it for about a year, but then again there are some who remain in remission while still on it... So it varies. But you very well may be the type who no longer benefits from it. But you definitely have other options to try, if not add to your regimen.

I currently am taking only Prednisone. It makes me feel good, although yes, I've got the moon face and try to watch what I eat so I don't bloat up too quickly. I was doing quite well, even tapered down to 6.5 mg, but got some distressing news 2 weeks ago and ever since then been in a bad flare. Mentally, I'm over it, just hoping my body will follow soon.

I was on MTX for 2 months, lost a ton of hair. One of my rheumatologists was like hey you have other DMARDS you can try, just stop MTX. So I did. She was so lackadaisical about it. Like, eh no biggie. So I tried 2 others. They didn't work out for me... So for now... Just gonna do this Prednisone thing while I experiment with diet and naturopath chinese doctors treatment.

I'm wishing you the best. Definitely ask for a bone density exam. It should've been done by now. 5 years on steroids is no joke, and you definitely don't want to have more injuries!

Lainey61163 profile image
Lainey61163

Hi , I’ve bin on Methotrexate & Steroids & plaquenell for about a month and I just had to stop the Methotrexate because my liver was hurting so I’m very scared of a flare, the plaqunell really helps and the steroids I stoped right after New Years because I found I could not sleep when I took them .. it’s so hard taking these meds but sometimes it’s the only relief.. I found when I juicing and eating vegan it really really helps the fight off the inflammation... good luck

helenlw7 profile image
helenlw7

I have been on mtx for about ten years and pred for pretty much all of that time. I have a bit of a warning about long term use of prednisolone that I wasn’t warned about at the beginning. I’ve tried reducing the dose several times, but when I get down to 5mg a day my joints become really painful and breathing worsens. (I also have lung disease and uncontrolled asthma.) I was diagnosed with adrenal insufficiency in Feb 2017, and will need to take 7. 5 mg of pred a day.

melissa6140 profile image
melissa6140

I have been on and off prednisone for two years now. But I started the something I can't remember, then methotrexate, then xljanz now i have been on enbrel. None have worked that well and affect my liver if taken by pill. Sometimes the flare ups are as bad as when I first got it can't hold a drink or stand up and walk. But enbrel isn't working either it seems like I have been on it for two months and can't seem to lower the prenisone that much. Doctor says if it still isn't working by the time I go back I might have to do the iv thing. But I get so tired the prednisone doesn't affect my sleeping like others, without it I sleep alot when the other drug isn't working. But I do hate the weight gain you get on it had a flare up around thanksgiving and made gingerbread cookies because i was on a high dose of prednisone I ate most of them. But anyway my doctors main goal it to try and find something where it works and I don't need the prednisone.

Beviejon1 profile image
Beviejon1

I have been on low dose prednisone for 24 years along with other RA drugs.

Kai-- profile image
Kai--

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Bit on triple therapy, mrdiggs 🐕 (& Beldar 🐈 ): healthunlocked.com/nras/pos... .

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If your rhuematologist 👨‍⚕️ isn’t terribly interested (or ‘up to snuff’) 5 years (?) 😧 in [no matter how good the hospital 🏥 he’s associated with] & if you’ve the ability/ resources to find a more suitable rhuem.👨‍⚕️ why waste valuable ‘healing time’ ⏳⌛️ patiently waiting for your current 👨‍⚕️ to ‘catch up’? 😳 🤔

If he’s specifically/narrowly trained & ‘set in his ways’ (methodology), do you think he’ll ‘wake up’ 😴 😳 & re-evaluate his methods/ solutions for you (your particular case) by your next visit?! 🤔 🤯 😔

[Merely my goofy 🤪 layman’s opinion, if your 👨‍⚕️ isn’t advising a multi-pronged approach (lifestyle, foods, meds, etc.), then find one who understands 😌 👩‍🏫 🤓 it (a multi-pronged approach) or who at least is receptive to tackling this complex disease in a more ‘wholistic’, complex, nuanced way. 🤔💭 ]

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Aside: The huge stateside healthcare organisation Kaiser Permanente encourage their millions of clients/ patients to adopt plant-based foods 🌿🍃 ( healthunlocked.com/nras/pos... , healthunlocked.com/nras/pos... ) to improve their overall health.

That (knowledge of KP’s dietary recommendation) may be a ‘litmus test’ for any potential rheums. and/ or future medics? 🤔 If they’ve no awareness of this fundamental dietary (🌿🍃) approach, their time-intensive 👨‍🏫 , labour-intensive 👩‍🔬 , & cost-intensive 💰 educational training 👩‍🎓 / degrees 📜 , will be lacking a foundational cornerstone 🔲 to rebuilding 🏗 good health — especially the potential for improving from a diseased state. 😳 🤔

.

It’s your life lovely stateside, figure skating 💃 ⛸⛸ self , Gimpy 😌. Your medics 👩‍⚕️👨‍⚕️ aren’t living in your body 🚶‍♀️. 😯 😳 [Maybe the 13th bite-size thought 💭 ( healthunlocked.com/cure-art... ) is apropos here? 🤔💭 ]

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Please 🙏 , kindly do everything within your hands ✋😇🤚 (your sphere 🔮 of influence ) to help yourself, to educate yourself 👩‍🏫 even further, mrdiggs 🐕 . No one is as vested in you’re well being 😌 as you (& your beloveds 🤵 🐕 🐈 ) are. 😌 🙏 ☺️

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"Crazy diets" 🤪 aren’t a component of a sensible lifetime ‘solution’. There’s abundant sensible dietary ( healthunlocked.com/nras/pos... , healthunlocked.com/nras/pos... ) & lifestyle ( healthunlocked.com/nras/pos.... , healthunlocked.com/nras/pos... ) approaches that actually influence/ improve wellness for many, many people. 👨‍👩‍👧‍👦👨‍👩‍👦‍👦👨‍👩‍👧‍👧

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Read 📖 , read 📄 , read 📚 👓 till your eyes bleed . . . 😭 . . . 🤣 🤪 🙃

There’s abundant 📚, quality ⭐️ , substantive 💎 information freely 🆓 available to help set us on a healing/ improving course ⛳️🏌️‍♀️. 🤗

Again ( healthunlocked.com/nras/pos... ), wishing you the very best, mrdiggs 🐕 (aka ‘The Gimp’). 😌 🙏 🍀 🌺 🌞

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Aside: Bit more on Methotrexate: healthunlocked.com/nras/pos...

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Kai-- profile image
Kai-- in reply to Kai--

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Additionally:

If this helps at all, mrdiggs, recently listened to podcast ( paddisonprogram.com/stacy-g... ) where gal (‘Stacy’) went from 60mg 😳 of prednisone down to 5mg. 😯

Quite a feat 👣 & may be of interest? 🤔

Wishing you the very best, mrdiggs 🐕 (aka ‘The Gimp’). 😌 🙏 🍀 🌺 🌞

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m.youtube.com/watch?v=hZSpr...

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[Also posted at Libbywtl3 ’s ‘Getting off prednisolone after 12 years’: healthunlocked.com/nras/pos...]

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LadyJan profile image
LadyJan

I have been on Prednisone for 11 years mainly 5-7.5mg but up to 10mg in bad times. Methotrexate too but for 3 years to now, had previously had 3yrs some years ago but liver rebelled. Obviously side effects of pred..easy bruising, imusuppresed. Feel ok but does not do much for pain. Have arthritis in hands, wrists and shoulder. How much is osteoporosis not sure. Spec treats me as seronegative Ra. Ladyjan

Jesnaskah profile image
Jesnaskah in reply to LadyJan

ladyjan...just curious, if you feel like the pred isnt helping your pain, why continue to take it?

Nyreedw profile image
Nyreedw

That's not good. The standard Nice guidelines are a combination of meds from day one. I too was on triple therapy, mtx sulphasalazine and plaquenil. That was 20 years ago. I'm now on humira and mtx for past 4 years. My rheumy doesn't like using pred unless absolutely necessary,it's more about getting meds right. I've only had one short course at start, as struggling to get meds right and they don't work for me. Look up info about treatments and good luck.

Connie1566 profile image
Connie1566

I have PsA and have been on prednisone for almost 3 years. I too have been on varying dosages depending on flares, as low as 2 mg and am currently on 6mg (past 6 months). I could not tolerate methotrexate - side effects no matter what I did. I also take diclofenac /Voltaren 75mg SR 2x/week. I wish I could decrease my pred, but I have not been able to do that without inflammation & pain in my tendons.

My Rheumy and I have discussed biologics. Currently we agree to maintain the current dosage of pred versus trying something new ...

Liggle profile image
Liggle

Hello I have been on Prednisone in various doses for 9 years had to come of Methotrexate had so many sores and just felt awful my hair feel out too tried it three times now, never going to try it again , I’m having a spinal injection on Wednesday, just praying it relieve some of the pain , nobody unless they have got R/Athritus understand the pain,,because it dose not show like a broken arm , I hope Methrexate works for you many call it the wonder drug , thinking of you

I was on prednisone at first. When I was diagnosed with RA, they prescribed Methotrexate in pill form. The pills didnt work well, so now Im on 25mg shots. I give myself a shot once a week. Sometimes I'm stiff but otherwise I feel great. The pills made me tired, sleepy, blurry eyed, and memory loss. Shots are the best for me. I haven't taken prednisone since the diagnosis.

MagicalMarjieXx profile image
MagicalMarjieXx

Hello Warriors,

My Father took Prednisolone for over 35 years to help him breath, but one of his side affects was that it softened his bones and his foot arches became extremly painful as they collasped. recently I have been told that prednesolone ( sorry spelling ) is to be a short term fix as it can have long term damage & shorten your lifespan...

Well my old Dad died at the grand age of 94 !!!

Peace out

MajicalmarjXx

lindafranko profile image
lindafranko

Hi mrdiggs - Just a comment about long term prednisone use: I have been on prednisone for almost 33 years. Initially at 15 mg now down to 4 mg daily. I didn't start this because of my RA though but rather for a kidney transplant. The long term use has affected my skin the most - easily bruised and aging more quickly. I'm 68 but my skin looks like someone in their 80's. I can deal with that though. Definitely check bone density if you're going to stay on the prednisone. Good luck to you -

autismmom14 profile image
autismmom14

Folic Acid helps with hairloss I am on MTX, folic acid and on and off prednisone

DC56 profile image
DC56

I’ve been on methotrexate for about 20 years . I’m on 10mg methotrexate weekly and I’ve been on pred since 1987 when my Rheumatoid Arthritis started different amounts of course starting on 30 mgs down to 5mgs daily now obviously I’ve had countless different drugs to go with them 🦋

Debkimly profile image
Debkimly

I am in NY and I started with methotrexate and then they added plaqunil. After needing shoulder replacement they added humara. I tried going off the methotrexate but my joints acted up. I also hate the hair loss.

DC56 profile image
DC56 in reply to Debkimly

I’ve been lucky I’ve had no hair loss but I’ve had methotrexate poisoning having to leave off the methotrexate was worse though 💕

MargaretStirling profile image
MargaretStirling

I cannot help you with these issues you have I was on methotrexate for 2 year pen then went on to tablet form but unfortunately my immune dropped dangerously low that they were stopped. That over 6 months ago I still am on Hydroxchloroquine and lidocaine medicated plasters they do take the edge of the pain but of course it's only a stop gap. I don't like steroid tablets they would be my last resort I have osteoporosis in my spine have had bone cement twice long term steroids could be bad

mrdiggs profile image
mrdiggs

This has been a real eye opener for me. I don't think I ever realized how many people have to deal with this disease in its many forms.I'm beginning to think the UK is far ahead of how most Drs. in the US deal with their patients and what is generally prescribed as treatment. I have to thank everyone for their contributions , advise and kind words. It is very nice to have people who understand what you are going through to talk to and their far reaching knowledge to pass on. It gives one a lot to think on and helps in forming questions for their Drs. and possible future treatment. This is a really great group and I do believe a "Real Band of Brothers". Keep up the good fight and keep in touch. I wish you all well---The Gimp

Brier profile image
Brier

I have been on both of these drugs since1990 .I recently got off of methotrexate and boy was i wrong to do that.had a really bad flare,so I went back on the injections,not the pills .right now i'm doing pretty good with methotrexate and prednisone.was on plaquenil with these two but now im off because it was so expensive ,has gone up1000% in price because of demand

NanaFifi profile image
NanaFifi

Hi mrdiggs, I have been taking prednisolone for over 30 years, a massive dose to start with! I have tried many times to come off them but I always flare up if I go below 5mg so my Rheumatologist has agreed that we just leave me on them, after all 5mg is a very low dose. I’ve been on Methotrexate for several years and like you took a break for a wee while but experienced a massive flare up!

I’ve had no major side effects from steroids, I have thinning of the skin but that’s only caused a problem once when I had a nasty fall and docs couldn’t stitch my shin because skin was too fragile. I would have had no quality of life if I hadn’t been on prednisolone all these years - it’s worked for me.

Elmo2345 profile image
Elmo2345

DItto. I've been through all the DMARD's and have almost worked my way through all the TNF's which just about killed me and Prednisone has been my constant for 5 years now. I've done dual therapy but not triple nor would I given my previous results with dual therapy. I operate a cattle ranch and walk 3 to 5 miles a day around the property when I can. Your prednisone dosing is about the same as mine. Sometimes I can work down to 1 or 2 mg a day then a weather front will blow in and i'm back to 10 to 15 mg for a few days then 5 etc etc. Before all of this I was exceptionally healthy even at 52. Since I started the RA drugs I've been through full body rashes to include the sinus and throat (Enbrel) and have spent a few weeks on the cardiac floor thanks to Humira. Methotrexate gives me more sores than Folic acid can fix.

Kai-- profile image
Kai-- in reply to Elmo2345

.

Although ‘Lor’ 👱‍♀️ ( healthunlocked.com/nras/pos... ) is years younger, what she has to say may be of interest, Elmo2345? 🤔 [Awful lot of insight/ wisdom 🦉 packed into those youthful years of living.]

Also, in the reply above (in this post) about our rheumatologist 👩‍⚕️ (& us as patients 🧟‍♂️ ) implementing a multi-pronged approach (lifestyle, foods, meds, etc.) may be something to consider in light of your experience? That is, tackling this complex disease in a more ‘wholistic’, complex, nuanced way? 🤔

Supplemental thoughts if interested: healthunlocked.com/nras/pos... . (Scroll toward bottom of page to "Merely ‘thinking aloud’ 🤔💭 thoughts 🗣💬 tossed out to the universe 🌌 .")

Wishing you the very best, Elmo2345. 🙏 🍀 🌺 🌞

Aside: If your interested in male 🙋‍♂️ experiences (rather than (or in addition to) female 🙋‍♀️ experiences), I’ll add those references. ☺️ [Off hand, we’ve 2 right here on NRAS forum, andyswarbs 🙋‍♂️ & Shaun94 🙋‍♂️.]

.

mrdiggs profile image
mrdiggs in reply to Kai--

Hi K- Believe it or not I'm a female and only go by Mr. Diggs as that is my 14 yr. old Pitbull -the love of our lives- sweetest rescue you'd ever want to meet-loves everyone and everything. Right now he's getting around better than I am-----LOL. Snowing here so not as hale and hardy as I would like. Turned 72 today and still above ground so figure I'm ahead of the game. Have always been a big consumer of veggies, over the years have been very active w/ the exception of this winter. Between the cold temps, rain, sleet and snow and now tendon tear in right ankle and knee bone on bone w. arthritis have curtailed physical activities. Spring can't come soon enough.Come hell or high waters I'm playing golf even if I have to play standing on one foot this Spring -LOL. Thanks for the info-will look into it-Keep up the good fight, feel well---- Mr. Diggs- the gimp-Otherwise known as Pam

Kai-- profile image
Kai-- in reply to mrdiggs

.

Yes, mrdiggs/ Pam, I know you’re a lady 💃 ⛸ & ‘Mr. Diggs’ is your 4-legged 🐕 boy. 👍👍

No worries. 😌

The Reply (directly above) was to ‘Elmo2345’, if that helps clarify any confusion?? 🤔

.

Very glad to hear you’re up & about on your 7️⃣2️⃣nd birthday! 🍰 🎁 🎂

Birthday congratulations, Pam! 🎈 🎉 ✨ 🤗

Yes indeed, another year ‘above ground’ & another Spring to golf ⛳️ 🏌️‍♀️ — 1-footed 👟 or 2-footed 👟👟.

Hang in there, Spring is on it’s way 🌷 🌸 🌼 counting down the days 📅 📆 . . .

Hope you, beloved Mr. Diggs 🐕 , & Beldar 🐈 can stay cuddly, snuggly warm 🔥 🧤🧣 until Spring arrives. 😌 🙏

Keep taking good care, ‘The Gimp’/ mrdiggs/ Pam. 😌 🙏 🍀 🌺 🌞

.

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