Can I take my prednisone again on MTX?

[OneLove2019]

Okay so I have been off prednisone for a few weeks and now on MTX completely and it sucks. I am aching again, bolated andnasueated. I felt great on steroids and I am tempted to get back on them --is that possible while I am taking methotrexate? I Mean, I was on them when I started MTX but had to taper off... I just can't deal with how I am feeling off the steroids.

[Penguintaz]

Hello

So the reason you had to taper off the steroids is because of the steroids themselves. The reason: long term use of them can damage your health and put you at risk of developing steroid induced Diabetes. Ideally our Rheumy's would want us on zero mg but for some they will forever need a low dose.

They are there to help if you are struggling, double check with the Dr in charge of your health but maybe go on a low dose for a bit like 5mg to see if this helps and if not then try 10mg. I would be reluctant to recommend taking any higher than 20mg without a Dr okaying it.

The only exception would be if your Dr said something like "don't go back on steroids".

Hope this helped X

[OneLove2019 in reply to Penguintaz]

Thank you--I'm already testing a 5 mg which I took tonight...

[Penguintaz in reply to OneLove2019]

Fingers crossed that it helps X

[OneLove2019 in reply to Penguintaz]

Appreciate that

[OneLove2019 in reply to Penguintaz]

So far so good, the rash on my face even seems to be going down...

[Krazykat26 in reply to OneLove2019]

Best to take steroids in the morning otherwise they can cause sleep disturbance xx

[OneLove2019 in reply to Krazykat26]

With food? I usually do but one day I actually forgot to do so and felt okay...

[Krazykat26 in reply to OneLove2019]

I take mine in the morning with a glass of goats milk n then have food about an hour or two afterwards..I've found that works best with me. Xx

[OneLove2019 in reply to Krazykat26]

Thank You

[miccika1 in reply to OneLove2019]

Tonight? Usually you want to take them in the morning, to align w natural steroid production.

[OneLove2019 in reply to miccika1]

Saw my Rheumy on the 23rd, she prescribed the injection but for some reason, my pharmacy had to order what they called the TB syringes (they were out), so I took the oral again (I dose on Thursdays). She said the injections may help with side effects. She also prescribed 1 mg maintenance doses of prednisone 4 xs a day. Been taking 2 in the morning 2 in the afternoon since then, as I find doing it this way seem to help me "go" for some reason.

[PMRpro]

Many people on the PMRGCA forum take both - as a lot of doctors have this theory that mtx lets patients reduce their pred further and even get off it. It doesn't always as you have found.

Quality of life is all in chronic illness and at low doses and with appropriate lifestyle changes there is no reason why the so-called adverse effects should occur. In particular, steroid induced diabetes is perfectly avoidable by cutting carbs, especially processed and simple carbs. I've been on pred for over 9 years, heading for 10 years now, much of the time at above 10mg and have no identifiable steroid effects - except my a/i disorder is well managed and I have a good life. If you can manage well at 5mg pred - it probably has fewer adverse effects if you go about it right than mtx does. I found it utterly awful - and stopped after a month

[OneLove2019 in reply to PMRpro]

I am so glad I am not the only one having this particular kind of issue as so many claim good results with MTX. I find the worst of the symptoms happens a day or so AFTER I do the 8 pill dose. Hubby stays home with me to help with the kids and works from home because I am just useless. I just sleep, feel like I am going to pass out or wake up weak, nauseated and shaky. It's awful. Good to know some have been able to use steroids longer term as this gives me hope. I feel human again on them. Would go up to no more than 10 , see how it goes in the next few days. What do you suggest is a good diet on the meds? I have taken to eating berries, fish, chicken--sometimes we make smoothies and wraps with avocado.

[PMRpro in reply to OneLove2019]

On the PMRGCA forum we tell people to cut carbs drastically - especially processed ones which also cuts salt which can also lead to weight gain because of fluid retention. The carb reduction also minimises the risk of developing steroid-induced diabetes. You don't have to cut carbs altogether - everyone is different and some can eat carbs and not gain weight, what I'm saying is that weight gain is NOT inevitable! That diet sounds good to me

You will have a choice of other drugs to try probably, for me there is pred or nothing. But if mtx is making you feel so ill you can't function - it isn't for you. I know lots of people take it on Fridays so they have the weekend to get over the "mtx-flu" effect and be able to go to work on Monday. That's no life - and you can't life the rest of your life like that. I think really it is a case of if mtx is good - it is good, when it is bad, it is horrid!

Do talk to your doctors about it as soon as you can. They won't be happy about longer term pred but maybe you have one who accepts that long term low dose pred is not as bad as they have been taught. They do exist.

[OneLove2019 in reply to PMRpro]

Yeah, my Rheumy is open-minded in some areas, strict in others. I will toss it at her and see what she says because I don't think I can do this without the steroids. Thank you so very much for your all your detailed input!!! *mega hugs*

[Mimi1900 in reply to OneLove2019]

One issue no one has mentioned is that long term steroid use can cause osteoporosis. I have read that you should try not to take more than 7.5 mg a day long term. Also, I think EULAR just came out with all Lupus patients should be on hydroxychloroquine (plaquenil) even if using methotrexate. In US this seems to have been standard of care for greater than 10 years at least in North East based on my experience. Also if prescribed methotrexate I was also prescribed folic acid to take daily to help ameliorate side effects of methotrexate.

[OneLove2019 in reply to Mimi1900]

Yeah, I take folic acid as well, is hydroxychloroquine (Plaquenil) good for autoimmune vasculitis? Currently trying 5 mg prednisone was thinking upping to 10 but may reconsider with some of the issues mentioned.

[KayHimm in reply to PMRpro]

So interesting and positive for many of us, particularly if you have a rheumatologist who hates steroids as much as mine does. Would really appreciate it if you could share the newer studies that show low dose prednisone is not as previously thought. K

[PMRpro in reply to KayHimm]

Articles about the study that are free to air:

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

and the reference is at the bottom of at least one of them

[KayHimm in reply to PMRpro]

This information is hugely important to my argument. You made my day! Kay

[OneLove2019 in reply to KayHimm]

Thanks so much guys for all the info...

[OneLove2019 in reply to PMRpro]

So glad for this--the prednisone seems to balance off the sfx of MTX I am experiencing, like rash and nasuea-- she wants me to phase off but every time I do some of the worst effects pop back up.

[Hidden]

Don't have Lupus, I have RA Sjogren's and Vasculitis. I take MTX 7.5mg and Pred 4mg Rheumy prescribed them. Also have Leflunomide.

[OneLove2019 in reply to Hidden]

I also have a vasculitis (sarcoidosis) afflicting lungs, heart, liver. MTX 2.5 and when I was on prednisone it was 40... I am gonna take 5 mg the pred this week and see how it does me. thank you guys so much.

[OneLove2019]

Yep methotrexate...MTX can be if okay if you take it as directed. Whenever my hubby goes to pick it up the pharmacist has to read off a script telling him to ensure I take it all on one day..or else *cue ominous music* Seems it can increase toxicity effects if you take it over long periods of time. It's given in low does for certain autoimmune disorders and it is supposed to be a replacement for steriods--so far it succccks. LOL

[hummerbird]

Hi OneLove, I live in the states. I also take MTX along with 5mgs of Prednisone. I know you are not doing well with the MTX pills. Neither did I. I couldn't stomach them or the 2 day effects afterwards. So my rheumy had me do the shots. It was a night and day difference for me. I didn't get sick or have the after effects. I still take the 5mg Prednisone. The Prednisone quiets down the skin rashes and inflammation I get. It also helps when my body gets stressed or sick. I then up the Prednisone (usually up to 20mgs) for a few days until things calm down. For now these things are working for me. I couldn't do Plaquenil. BTW you only do one shot a week so it's not that bad. And you are right that MTX is very toxic and taking it everyday can kill you!!!

[OneLove2019 in reply to hummerbird]

Oh my gosh, you are my mirror image. I got a horrid rash on my nose, around my lips, on my chin a little on my arms but not as bad as my face. Someone else was telling me to ask about the shots! Think I may do that too. Is it a self injector do you have to go into the office for the shots?

[Joy_1]

Hi

What dose of MTX do you take?

I have spent around 5 years trying to get off steroids. It was not until I hit 20mg MTX that I managed to get below 5mg Pred. I'm now at 1.5mg Pred and feeling pretty good as my adrenals have kicked back in are making lots of lovely cortisol which means I have lots more energy.

It's also meant that I have been able to drop my HCQ from 400 to 200mg.

So the upshot is that it may be the dose of MTX is your tipping point, it certainly was for me.

Good luck

Joy

[OneLove2019 in reply to Joy_1]

Ah and thanks again Joy.

[OneLove2019]

currently, I take 2.5 per dose of 8 per day. When I first started I was taking 40 mg of pred a day too. Phased down to zero and just can't fucntion. Dosed Thursday but already feeling a bit better taking the 0.5 mg prednisone. I see my Rheumy on the 23rd so maybe I can talk to her about how the 0.5 pred helps and see if she can balance that with the MTX dose, thank you :-). Also, I heard that the injection is better than oral? I may also ask about that option.

[Joy_1 in reply to OneLove2019]

So it sounds like you are on 20mg MTX - the same as me, if you are taking 2.5 x 8 tablets a day.

I certainly struggled being on 15mg MTX orally with horrendous nausea and my gut was not too happy either. So I moved across to jabs. It made a big difference. Not perfect but a huge improvement in the side effects.

My mother-in-laws neightbour had to hit 25mg MTX before she could get off steroids. I understand that is the max dose they like to give us. But then she had no side effects at all from the MTX and only needs 1 folate tablet a week. I'm not saying it is right for us all, the pros and cons need to be weighed up as of course there is liver and kidney function to take into account. I certainly know my consultant would not be happy with me hitting this dose even though so far my liver + kidneys are fine.

As others have said it maybe that you may have to take a 'maintenance dose' of Pred.

It's all about balance I guess.

[OneLove2019 in reply to Joy_1]

Thank you, I will most certainly look into the injections and asking about a maintenance dose. I appreciate the response Joy!

[OneLove2019]

Do you find 2.5 is enough for your symptoms? Is it that low because you have to take it long term?

[OneLove2019]

Good point!

[PMRpro]

I didn't say it did - BUT it DOES cause steroid induced diabetes which is a definition.

[PMRpro]

There is a link: pred causes the liver to release random spikes of glucose into the blood, whether you have diabetes or not at the outset. That increased amount of glucose leads to a risk in the Hba1c and random raised BS levels - nothing to do with ability to produce insulin or insulin resistance.

It is a third aspect - and the reason the term steroid-induced diabetes is used. Cutting the intake of carbs reduces the average level of BS again, the Hba1c falls and you need never get to the diabetes range.

[OneLove2019 in reply to PMRpro]

You have both given me "food" for thought, get it, "food..." LOL... erhm. Anyhoo. so how does one cut carbs completely? I already have a few food allergies such as corn, soy, peanut and wheat. Potato and rice was the ghe few things I still could eat. I like baked potatoes as a diet food for instance...am I relegated to only to drinking berry smoothies and eating soups for life? Sounds depressing.

[PMRpro in reply to OneLove2019]

Cut processed carbs - stuff made of flour and sold in a packet basically. Potatoes, rice, pasta, root vegetables should be out, above ground veg, salads are in, restrict fruit. Doesn't have to be no carb, just much lower carb.

[OneLove2019 in reply to PMRpro]

Wow. Not much left for me though, given my food allergies.

[KayHimm in reply to OneLove2019]

Doctors vary in how they tell you cut to the carbs and how much. I am pre-diabetic and see a young endocrinologist for thyroid issues. In addition to what Pro said, she has me on 30 carbs a meal. It helps to have the target. For the most part it has kept my A1C in the normal range, but it has sneaked up on occasions — discouraging. She says to exercise more. 🏋🏻‍♂️🤸🏼‍♀️

[PMRpro]

And the point then is that there is an excess of insulin left because the spike of BG isn;t followed by a sustained higher level of carbs as th result of a meal. The excess insulin leads to the deposition of any glucose as fat. THAT is why you gain weight when on pred...

[OneLove2019]

Yeah, I went back, getting on the injection and now 4 mg of prednisone in 1 mg tablets daily...seems to be effective in the short time I have been on it.