After 2+ years on Prednisone for PMR I have recently tapered off with the DSNS method. As I reduced below 5mg the aches and pains slowly seeped back, and although tolerable I continued to taper down. I figured like many others I would never be pain free. A month later rheumatologist diagnosed Seronenegative RA and wants me to start MTX. I’m already on Prolia injections for Osteoporosis so not sure about mixing those two drugs. Anyway, I’m open to your thoughts on
1. Keep off the pred and start MTX
2. Go back on low dose of pred e.g. 5mg for about a week to see if the pain reduces then immediately stop.
The reason I would stop the pred after a week is to see what happens with the pain level. Is this a safe option? My pain level is tolerable, I can move around, I’m not on any walking aids, I can still do everything I used to with limitations, and some days are worse than others but if it’s RA I’m aware it will only get worse as more damage is done. The rheumatologist would be horrified with option 2, as he feels it is definitely RA so need the MTX as soon as possible, to stop the progression but if low dose pred helps the pain, would this be a better option long term than MTX? And does pred stop the progression of RA?
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Why are you reluctant to take MTX? Personally it’s been a great drug for me and I wouldn’t be without it.
And if you already have osteoporosis wouldn’t continuing on pred increase the risks of this getting worse? That’s something I’d want to avoid myself. We are all different, but I can't imagine ever wanting to choose pred over MTX! I would have to be forced by my doctor to do that.
MTX is a disease modifying drug, so it actually slows the disease process. Sometimes when the disease is fully controlled you can slowly reduce the dose. Pred just controls the inflammation that is one symptom of the disease, and if the disease gets more and more active you need to take more and more of it, which increases the risks of long term side effects more and more.
You need to think not just about how you are now, but how you will be 10 years in the future.
I AM ON BOTH PREDNISONE AND MTX AND HAVE BEEN FOR THE PAST 7 YRS.HAVE TRIED COMING OFF OF EACH AT ONE TIME OR ANOTHER BUT WITHOUT ANY SUCCESS. I HAVE ALWAYS ENDED UP WITH A FLARE UP AND BACK ON THEM AGAIN.AT LEAST FOR ME THESE DRUGS ALL HAVE SIDE AFFECTS TO SOME DEGREE BUT WITHOUT THEM LIFE ISN'T MUCH FUN AND RATHER PAINFUL TO SAY THE LEAST.FOR ME JUST TAKING MTX WOULD NOT BE ENOUGH, I NEED TO TAKE IT IN COMBINATION WITH THE PREDNISONE. YOU JUST NEED TO FIND OUT WHAT WORKS BEST FOR YOU THROUGH TRIAL AND ERROR WITH YOUR DR.'S HELP. IT REALLY IS HARD TRYING TO FIGURE ALL THIS STUFF OUT AS EACH PERSON REACTS DIFFERENTLY AND WE DON'T ALL FIT INTO THE SAME LITTLE BOX. BEST OF LUCK AND KEEP THE FAITH THERE IS LIGHT AT THE END OF THE TUNNEL----LOL.
Pred just masks the pain......it is a drug most people want off it asap.
0n the other hand Mtx is a Disease Modifying Drug......& does just that modifies the affect RA has on your joints....the sooner a Dmard is taken the sooner your joints are protected....which is surely what we all want?
Knowing that & also knowing that your rheumatologist would be horrified at your idea of experimenting with prescription drugs.....I don’t understand how you could possibly consider refusing Mtx but want to take Pred?
I think I’d take your doctor’s advice.
After all......Rheumatologists train for many years and I think the majority of people coping well with RA do take their advice.Once the joint damage occurs there is no chance to start over.
Drug from hell as far as I’m concerned..trouble is - it’s cheap, works fast & when newly diagnosed anything that eases the pain immediately becomes your best friend.
Sadly for some it is the only answer .....I’m certain most people on it long term fervently wish they had been able to take a different path.
Thank goodness my first rheumy didn’t like it either....so I was never encouraged to take it....when I did get it prescribed years later I had a very bad reaction...so thankfully I didn’t need to rely on it.
Over what period of time have you taken “every Dmard & almost every Biologic”?
Sadly, once you take Prednisolone over a long period....accepting coming off it is a big, big struggle........you can read on here the side effects it can have.
Have you thought of changing rheumatologists.....that can often help put you on a different path?
Nothing has worked! No TNF biological, No I-6 biological, no JAK biological, no methotrexate!
There is no way in hell I will even touch the one that destroys every B-Cell. Those drugs are used MAINLY to treat leukemia!!
Thankfully, I don't have leukemia or lymphoma yet (which by the way the other biologicals CAN cause!)
Yes, I am thinking of changing doctors! Last month I asked him to compare my wrist and hand & shoulder xrays from when this whole endless flare thing started way back in Dec 2018 to see if there was damage since biologicals did not work.
He looked though his computer and said opps we never took any!
So he sent me in the xray room to take the first sets of xrays ever! I will ask about the results when I go back the 17th of this month.
I would definitely change your rheumatologist. To have as many drugs as you say you have had in 2 years seems quite a lot in such a short time.
I don’t think I have had that many in ten times as long.
Thankfully I have only ever had two rheumatologists since 1999,& thank goodness both were sparing with the number of drugs they prescribed.
To allay your fears about Biologic infusions that destroy Bcells....incidentally the cells do regenerate..... the dose used for certain cancers & lymphomas is many, many times stronger & given much more often, than used for RA. I have already had cancer,& the infusion drug I am on is one of only two recommended for someone previously having had cancer.
I’d ask around & see if you can get a recommendation for another rheumatologist....preferably one who takes more time to let a drug take effect.
You seem to have tried a lot of meds in a short space of time, some of them take months to work. Was your rheumy not giving each of them each enough time to work I wonder? maybe it’s time to see someone else for a second opinion. I hope you get some success.
He switched at the end of the 4th month when NO results in "inflammation" blood tests changed.
Many "inflammation" markers actually got worse or side effects to much to handle!
He has been trying to get me off the predisone desperately because I am having a really bad time with it, but it is the ONLY thing so far that allows me to get to work!
I think my body has had enough of biologicals and is making me much more WORSE.
I am supposed to go back the 17th of this month for a 5th IV Infusion of Actemra, which by the way is doing nothing except NOW needing to wear a freaking pee pad because every time I take a step, pee leaks out. This all started when I started the Actemra!
And more frosting to the cake, needed to have Sinus Surgery Aug 30th (with general anesthesia and the whole operating room experience) because the Humira gave me Fungus in my Sinuses!
Freaking fungus was actually growing & living inside my face!
Want to hear more?
Have not had to shave my legs or armpits in 9 months! What does that tell ya... my hair stopped growing and why my long hair has actually broken off up to the bottom of my ears!
And not only do I need high blood pressure meds & Lastix meds for extreme ankle swelling I now have to wear pee pads & fair hair pieces?
Come on now...Enough!!!
My body is REJECTING whatever is being pumped in.
I am telling him...NO MORE BIOLOGICALS!
I have been researching for months and months on other ways to help instead of biologicals & prednisone!
I will start fresh and rid my body of these toxins. If he does not agree and refuses to help me try a new way, I am out of there!
It's my body and it knows something is severely wrong!!
They may work for some and that is great, but my body is not liking any of it!
Well I really hope you find some alternatives that work for you, I really do 😔 It can be a very long journey but most of us get there or nearly there in the end. x
Since I posted I have had a Doppler scan of my wrists and hands, this was undertaken by a different rheumatologist. They are riddled with RA and I have bone erosion already. Now that I understand what MTX is and what it does I do feel I will need to start this to stop the progression. Prednisone won’t do that. Pred was amazing to stop the pain of PMA and GCA but it won’t stop the progression of RA. So...damned if I do and damned if I don’t, but I don’t think I have much of a choice now.
Methotrexate can be a wonderful drug ....it gave me my life back for seven years .....okay then it did stop working and I went onto a biologic which is still working well for me. There is light at the end of the tunnel for most of us-but we have to take the journey to get there .It can be long and painful and unpleasant but once you are there you are so glad you took that.
What is it they say? No pain no gain.
Having had RA for 20 + years I have very very little joint damage and I just thank my lucky stars I had a rheumatologist who led me through the maze of DMARD’s and then on to biologics....without Pred.
Do listen to your rheumatologist .....you are living proof that relying on prednisolone because it takes away the pain, but leaves you with damaged joints.... is not the way to go.
If you really, really can’t face taking Mtx ask if your rheumie will prescribe something different. I am convinced that anxiety about taking a drug that you don’t really want to take can cause side effects that are nothing to do with the drug.
Totally agree. First being told had to inject (pre loaded pen) Methotrexate was daunting being needle phobic. Having to be at hospital every Friday morning 8am for 1st 12 weeks to overcome fear of holding a pen before learning to inject. Gosh so proud I Persevered.
Still have problems when needing to have bloods taken but needs to be done.
Stay with it, talk to your Rheumatology nurse if having any anxieties.
It paid off, I'm now fine with the pre filled injections. Having to get up before 6am leaving by 7 for the drive rush hour was well worth every effort.
Troygirl are you sure it was the mtx that made you lose all your body hair such a long time after stopping taking it? Have you had other investigations into possible causes, you sound very stressed out in your replies I’m wondering if this has something to do with it. I hope you find some answers soon x
I am stressed because the past ten months have been a living hell with the side effects from ALL the RA drugs.
Of course I had it investigated! I asked my My RA doctor to take blood tests and he said all my "regular" levels are perfectly normal.
The answers are to stop pumping my body full of stuff it is clearly rejecting!
I see him the 17th for my 5th infusion of Actemra. There will be no no infusions that are clearly not working.
I want him to think outside the box, since he keeps telling me I am a unique RA patient.
I obviously am not a by the book patient like so many others that are successful with their very first try, 2nd try and even 3rd try!
I would like to stop by the book treatments, since they obviously do not work on me, and try other things.
After months and months of medical research & listening from other people who are struggling like me on these blogs, This is my plan:
To get off the prednisone totally because my wrists are in a constant state of flare, every single day for 10 months, my plan is going to be to stop infusions and request a 6 month to a year course of Minocycline.
Why not? None of the high powered RA drugs tried so far has worked.
For inflammation and to combat damage to joints I will Take Real CBD oil (with lowest possible THC levels) but the highest levels of active cannabinoid & Terpenoids
And another plant based treatment, Tripterygium wilfordii (thunder god vine) along with Tumeric, & Fish Oil suppements
For pain instead of the dreaded prednisone be able to reduce it down from the current 10 to 0 and just take 800mg of motrin
That is my plan and if he will not agree to continue seeing me, well it will be adios!
My regular Dr (GP) can prescribe the antibiotic and the rest of prednisone I will need until I can be off it completely!
Have you discussed this with your rheumatologist did he have anything by way of explanation?
Mtx has been around for at least 25 + years and I’m sure if something as serious as that had been reported as a side effect there will be something written about it somewhere and I’m sure rheumatologists would know about it.
I was on MTX for seven years and re-read the PIL quite a few times when I had unusual occurrences and I don’t remember seeing anything about permanently damaging hair follicles.
How long ago were you diagnosed with RA? Maybe as I have suggested before a different Rheumatologist might be the answer......we all have our ups & downs but with help they usually get sorted in the end.
Maybe talking to somebody would help you de-stress & feel able to start off with less angst with a new rheumy?
Well sure looks like I had side effects! There are tons of people who had to stop Methotrexate because of side effects.
For some not all.
I am going to see him the 17th. I am done with biologicals & all the other crap being injected & pumped into me. And yes, I discuss it every single time! This time I want to use my time to go over all the months and months of lab/blood results. We have never discussed THEM.
If you could ever see me, you would agree!
Worse off now than ever before I started with this doctor and this diagnosis.
Really worse off!!
How the heck can someone be flaring in wrists & shoulders for TEN MONTHS straight?
Even my grandson who is 18 and sees me suffering week after week says something is not right and time to get a new doctor!
If you have had such poor results with your present doctor for so long......don’t you think it really does seem time for a change? Your grandson may be right.
I meant talk to someone other than the Rheumatologist who has not been too successful in treating you....there are good counsellors out there who may be able to guide you to a different doctor.
Thank you! Yes. If he will not work with me on new ideas on the 17th it may be time to go!
Actually, my Dentist suggested I go to a major city like New York or Boston to find a really good RA dr!
Imagine that. My dentist! I go every 3 months for cleaning & a check so he knows what I have been going through and could see each change for the worse with my hair and body and my teeth!
Even they have been affected by all these RA drugs and weakening my teeth & gums as well to the point were one broke in half and I needed a crown last week!!
But to have side effects a year after stopping a med would make me look at some other reason. It’s not I don’t believe you but that’s quite a reaction 😔 I would be pee’d off too.
Flares can be lengthy especially when first diagnosed. It was years before I had any relief from meds, constant debilitating flares. I hope you find something to work for you soon Troygirl and I look forward to you letting us know you are getting some relief x
I hear you Troygirl, I was there too and it’s debilitating and I did find something that helped eventually but it took a very long time. You are not alone, that’s the good thing about this group, we have all been there to varying degrees.
Please don't be fearful of MTX, it can really make life so much easier, your joints too! No creaky, slow motion movements. You now know that prednisolone doesn't treat RD even if it can make life easier at difficult periods, I think that's really how it should be used. I've been on steroids 6 years now, only low dose, but I’d much prefer it was DMARDs alone that was keeping me on the straight & narrow.
We're here if you need to ask any more questions, need support or just to grumble away at. ☺️
Agree HH..but I think a lot more could manage without long term Pred if we had enough rheumatologists who had enough time to really consider drugs to suit individuals....not just dole out Pred as the ‘Go To’ drug for all.
Like you I started this journey diagnosed with PMR and prednisolone, Now have RA. I struggled to get rid of Pred after being given MTX but have very little joint damage so MTX worked
I get the steroid injections for a bad flare much easier than trying to reduce tablets for me. Osteoporosis seems to have stopped getting worse.
I am now 8 years on since it all started , no steroids for ages which I believe is a good outcome.
Thank you so much to all of you, let me just say your support is so comforting. I am probably overthinking things, worried about the “what might happen” with the meds rather than the actual disease. And you have all put it in perspective, which I was struggling to do. Coming off the Prednisone was such a big thing, and so I was horrified with the thought of MTX and it’s possible side effects. The pred was bad enough. My rheumatologist did say that MTX is not as bad a drug as pred. It’s just that my blood tests for a long time now show no more inflammation, my CRP and ESR levels are within the normal range now and there are no RA factors present. I’d just hate to be taking MTX if it’s not rheumatoid,... could it be another type of arthritis perhaps. Side effects of Prolia can be aching joints, stiffness and tiredness as well. I wish I could eliminate everything else it could be first, or have more tests to confirm RA.
But you did say that you are starting to feel aches and pains again? So it’s not nothing... i would say that most rheumies would be reluctant to prescribe anyone MTX unless they felt it was necessary. Yes docs can hand out pred like smarties, but they don’t do that with MTX.
Having been on both, I'd opt for the mtx. Its not easy, can have unpleasant side effects but it helped me a lot. Pred can have negative effects, It predicted type 2 diabetes for me, and I found that a quite small dose will increase my blood sugar levels.
On mtx they'll monitor you carefully. So its worth giving it a good go.
I started on Pred for a few month because it was thought I had PMR however I was difinitively diagnosed with RA (I was s-neg RA). The diagnosis came when I had knee surgery and tissue was biopsied. My doctors continued me on Prednisone for a few months while I was started on MTX. I was weened off of Prednisone and the MTX is working wonderfully. The transition from dual meds to just MTX was very smooth. I have been able to reduce the MTX dosage from 20mg to 12.5mg and it is still working with almost no side effects. Whatever happens, I hope you find the relief you need and deserve.
Pred is an anti inflammatory, will not slow progression but will thin bones and skin. MTX or other DMARD essential to slow progression and therefore joint damage. Hubby only ever taken MTX , been on it around ten years. Sees a Rheumy about every two years, can't tell he has RA and he's 69 - infatigable!
I have been playing the game of getting off Pred for around 5 years. Thanks to MTX I have got to 1.5mg Pred. Once I have got rid of this chesty blasted cough that everyone in are part of the country seems to have I am going to make the last push to get off Pred.
Have to agree with helixhelix MTX is a superb drug. It has given me my life back! No wonder the consultants call it the 'gold standard'.
From what i have read and what my consultant has told me it's better to be on MTX then 5mg of Pred when you think about side effects longer term of Pred.
Please please folk no digs at me re I am doing wonderfully well on Pred and have been taking it for a long time. I am expressing a personal opinion. And from the consultant to me "we need to do our best and get you off steroids'.
I know MTX can sound scary to people, but it’s been around for soooo long, doc’s are well aware of its safety and all of my highly respected docs have told me it’s very safe. All drugs have risks, but my impression is, pred will DEFINITELY eventually do damage whereas the risks of that happening with MTX are very low. Your blood will be monitored if your numbers are off, they will stop the drug and adjust dosage. Been on it 5 years and it helps my RA. There are some side effects for me but they are liveable. Main thing, don’t be too scared of it.
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