Prep for adding methotrexate or any other DMARD and experience with adjusting pred dose down

[Wallysma]

Hi all. Since I am having trouble getting below 20 mg of pred after 7 months (I have been on roller coaster not straight 20 that whole time. 23, 20, 15, 10, 12, 15, 22.25, 20, 17.25. and now 20. My symptoms have been the worst the past few days. Hence back to 20.I will take.my.fose for tomorrow at midnight.when I take another med to see if the change in time might help. We'll see.t

My rheumy is not happy about the pred at all. She has me on a two week reduction 22.5 to 20 to 17.25 to 25 to 10. If I can't get to 10 in time I have to add the other med.

I really don't want to. I tried methatexate for my first RA flare and did not make it a week. I got two infections right away and had the breathing side effect

So my doc changed my meds and all was well with the RA.

SO: what do I need to do before I start these meds. Tests if I remember right? It was 2015 so I can't remember. If you took any of them what was your experience and how did you reduce the pred? I thought I read that it's 6 weeks or do before the meds make a difference so does that mean the reduction of the dose is delayed? Were you able to reduce quickly or.....anything you want to share will help me.

I dont want to.go on them..I just have a bad feeling about it for some reason but I don't seem to have a choice.

Thank you everyone. Be well.

[SheffieldJane]

There is quite a bit about Methotrexate I the FAQs section of this site. I share your concerns though. What other meds have you been offered?

[Wallysma in reply to SheffieldJane]

Hi They are pushing lefludomide...or to try methotrexate again if I want I think. I am torn because it might be right but I have this gut feeling which has served me well in the past. So....and if it takes a long time to work....well. sorry I am not sleeping much at all probably should have more coffee! I will check out the info I just like to hear from people's experiences it helps a lot. This is all exhausting. thanks

[Wallysma in reply to Wallysma]

I forgot to add that I have been on placquenil for 30 yrs for sjogrens. My dose doubled in 2015 and we added 3 pred for RA. It controlled it. I was wondering if takingb3 placquenil might help...since it's a DMARD but....have to ask. It might not be strong enough. Thanks.

[Alebeau in reply to Wallysma]

I started Leflunomide on September 25 2021 and was stuck at 10 mg Prednisone before that.I have been able to reduce successfully since then and am now at 5.5 mg

I still reduce very slowly at .5 mg every month or two depending on bloodwork for ESR and CRP.

[Wallysma in reply to Alebeau]

Thanks for responding. That is good to hear. Any side affects? It makes sense to still take it slow. I am glad you are getting a good result. Thank you.

[Alebeau in reply to Wallysma]

Yes unfortunately there are side effects and I will be asking my rheumatologist tomorrow about reducing the dose or just stop it all together. There was dizziness for months but the worst symptom for me is numbness in my hands and feet. I am at the breaking point for tolerance - upon research of leflunomide I see that nerve damage in hands and feet can be permanent 😳

It's a tough decision and I didn't like starting this drug but I was taking way too long to reduce the pred after 4 years.

Good luck, mybe you wouldn't suffer those things but be cautious.

[Wallysma in reply to Alebeau]

I appreciate the info. I already feel lightheaded and am having issues with my hands and feet and legs being really swollen and feeling a bit off....so I will mention that to my doc. Hang in there...I am sorry you think you need to go off the thing that seemed to help. But I hope it goes well if you go off it. please take care. Be well.

[Alebeau in reply to Wallysma]

Thank-you for your kindness.I hope it goes well gor you too. 🤞

[PMRCanada]

If may be that your taper is the cause of your inability to get down to 10mg. Dropping from 20 to 15 and 10 with only 2 weeks between is not something I would have been able to accomplish. I learned this when my first rheumy instructed me to drop 15mg down to 10mg in one go. Instant flare and back up to 15mg for 6 weeks. My next taper went 15, 13.75, 12.5, 11, 10, 9.5, 9mg with 4 weeks between drops. Got stuck at 9 for over a year despite multiple unsuccessful attempts to drop to 8.5mg. So I started MTX in Jan of this year with some success.

As already asked, what other medications have they suggested you try given your difficult time with MTX?

[Wallysma in reply to PMRCanada]

Hi. Lefludomide. But when I read about it it sounded worse than methotrexate. Yes...I blame the way the pred was handled from the beginning and no explanation of how PMR works. So I just followed the schedule. Then things got out of hand and I was told to go up a smidge....then the roller coaster began. Finally back up to 22.5 worked but the rheumy lost her mind....so she told me I needed to start reducing. 20 worked ok

17.25 did not. Here we are. I might be fighting the thing that could work. So I figured come to those that have taught me so much. Help me know what I need to do or what should happen.

[PMR2011 in reply to Wallysma]

I felt the same about Toxcilazumab as the literature makes it sound awful. However it worked out very well for me! I am off all other meds and taking TCZ every other week. If you think about it, if Pred were just invented the package insert would be horrific! It may be worth a closer look, or a try since you can stop it immediately. You have a very complicated medical situation which makes these decisions hard as it’s a real balancing act.

[Wallysma in reply to PMR2011]

Yes....I know what you mean. That's why I said I know it could help...and I will most likely end up on it. My experience with methatrexate in 2015 was not the best...but it was not horrible. I just stopped it. But I think because I have felt so sick since spring it's unsettling. It makes me feel like it could go sideways. But I just need to.talk through my concerns with the PA. Thanks again. Please take care.

[Bcol]

Hi, that seems a very quick initial set of reductions to me, it took me around 32 weeks to get from 20mg down to 10mg. I think you need to get back to where things were under control, stay there for a few weeks and then taper down slowly using one of DL's tapering plans, but not starting a taper if you are still suffering symptoms. I really can't see a 22.5mg to 10mg reduction in eight weeks is practical or sensible, but I guess you are limited in options if that is what she is insisting on.

[Wallysma in reply to Bcol]

Yes...I actually did that but once I got down to 17.25 things hit a wall. Yes if the doc controls the meds you don't have a lot of options. So I figure do what I need to do to feel better about the DMARD or....not sure what else. Lol.

[singingloud in reply to Wallysma]

You can find another doctor. I finally went to Mayo Clinic in Wisconsin where they confirmed PMR not RA and that I was being told to taper too quickly.

Let that rheumatologist go and about to do the same with the second one who thinks I should be over with PMR since it’s been over three years.

Where do you live?

[Wallysma in reply to singingloud]

I live in Delaware In Seaford...so one of the small towns inland from the beaches....maybe 45 mins or so inland. There are issues with docs here...not enough for the growth. I moved here about a year and a half ago. Because I am in the south...Salisbury MD is close. I go there.for my pain doctor. I need to look again. But I think PMR is a tough one to find....obviously. I guess I could call and ask... so how do you feel about PMR and prednisone??

[singingloud in reply to Wallysma]

by the sounds of your symptoms you need to be seen sooner than later for GCA. You may just have to go to the ER. I find the USA doctors are pretty clueless. I live in Michigan. My PA is better informed. Don’t wait too long!

[Wallysma in reply to singingloud]

Thank you.. actually my head is better today..it's my neck being more stiff. I took my pred at midnight and while my pain is bad the stiffness was a lot less. But I am keeping an eye on the GCA symptoms. Scares the hell out of me!

[MrsNails]

Hi l have written about MTX at length in FAQ’s

l’ll add you a link - remember everyone is different & everyone’s experience is different…..

healthunlocked.com/pmrgcauk...

MrsN

[Wallysma in reply to MrsNails]

Thank you MrsNails!! I known it's all individual for sure...but it helps to hear from other's experiences. Be well.

[MrsNails in reply to Wallysma]

it wasn’t easy for me but l has no choice the PMR was out of control & the side effects were causing me harm….

[PMRpro Ambassador]

"I got two infections right away and had the breathing side effect"

In that case, she shouldn't insist on MTX again.

Like MTX, when leflunomide works, it works pretty well but it doesn't work for everyone. Like all of the things with PMR, everyone is different. I trial found it worked well - but I am suspicious of a trial that found it was wonderful for 21 out of 23 recruits!! It can have unpleasant side effects - but you have to try to find out. One friend who takes it and a low dose of pred said she felt the LEF "kick in" and she felt different.

Plaquenil is obviously not helping much! Again, it helps some people, there have been a couple on the forum who are on it and off pred.

Whatever it is - you have to try the to find out if it works for you.

[Wallysma in reply to PMRpro]

Yes, thanks. I hear you. On the placquenil I was thinking increasing the dose might help....since it did with the RA. But you are probably right. Thank you.

[PMRpro Ambassador in reply to Wallysma]

How much plaquenil are you on? If it is 2x400mg I think that is the usual dose and more isn;t likely to make much difference.

[Wallysma in reply to PMRpro]

Hey....zI am on 2 X 200 per day. It was a thought...but I have not asked the doc yet. Didn't know if anyone had experience with it.

[PMRpro Ambassador in reply to Wallysma]

I think one person is on it alone - there are a few

[Wallysma in reply to PMRpro]

Ok thanks. I need to look up dosing. And raise it with doc. I figure it couldn't hurt....might help...but what do I know..Lol

[Wallysma]

These are my concerns. I know the.pred is affecting me in not wonderful ways....so. It's hard to know what's best.

[Wallysma]

As I read your reply I realized why I go for opinions and experience. I collect the info and let it all marinate. I used to do this when I was writing fundraising grants. It's just my process. I do like to know both. But I have found that people present the info differently. I do know that no one knows what will happen if I take this med. My fears around it are from the info I read (on reputable websites). It helps to hear good and bad stories though. One thing it does is when someone has something go wrong it can act as a warning for my own experience possibly. It can also give me hope that all will be ok. Good luck with the surgery....if you in the end think it's the way to go. It's so hard to know what's best with this stuff. I know my brain is fried right now...lol. take good care...and be well.

[Amber1414]

I say 1-get another opinion! The small changes you are making don't make that big of a difference at all in the whole scheme of things. Once you reduce you need to let you body adjust for 3-4 weeks before reducing to avoid going into shock. Once you decide it's ok to reduce, only reduce by 10% at a time. After seeing what methotrexate did to my husband with his RA, there is no way I would have taken it. My doctor wouldn't want me to take it either.

I looked back through but didn't see your age. Maybe you need to slow down and not be about the rush to get off the drugs, that's not the goal. The long term goal for sure but you need to learn your body, what the pains are so you can identify them. Maybe it isn't JUST PMR. Maybe there is something else going on and you are getting a generalization because it is easier for them. Where do you live? Do you get worse at certain times more than others or are you bad all of the time?

I think you might get answers from this group sometimes that satisfy your needs more so than your doctor has even dealt with. Keep your chin up and don't give up or in! You aren't going to die by taking Prednisone for a year or 2 if you need it. Let it do it's job. The ultimate goal is 5 mg or less but if that means you can't move or get out of bed or are throbbing, is it worth it?

Good luck and please don't hesitate to reach out! Amber

[Wallysma]

Hi Amber...thanks for replying. The only reason I am doing the prednisone dance of the seven veils is because of originally no experience or knowledge of PMR and a rheumy who didn't mention the management of PMR and gave me a schedule after diagnosis of what to take and when. Also because I do have several other things going on fibromyalgia, sjogrens disease and RA, hashimoto's, and osteo arthritis. BUT I have dealt with all of those except the RA since the 90's and have a pretty good feel for them and treatments that work ok. The one good thing about PMR is the pain is pretty specific....and most of the pain is in places that are "new" to me. Because my hands were involved in the beginning and were THE worst I had assumed this was my second RA flare. The first was 2015 and luckily for me increased placquenil and 3 mg of pred controlled it. I am having a lot of side effects from the pred for sure ....I hate how I feel and look. And I would imagine those side affects make the PMR worse. But my body is not staying put once things improve. So.a few days ago I went up and waited to see what happened but just now I could not brush my hair...my arms would not work. So it's clear 20 isn't working. I was at 17.25 and thought it was going to be ok...but.I was wrong. I have been all over the map on dosing but mostly 15 to 23 most of the time.

I am going to the best rheumy around

..you ask anyone and you get her name. But I don't think after reading here that it matters how great. It's all about the pred. She and I had not seen each other for 2 months...I had to cancel an appt and then she did. During that time I went to PMR school (here) and learned a lot and started over on the pred and tried to learn what was w/d versus flare symptoms. So when I saw her she assumed I would be much lower but....she freaked. She told me I was going to die. We came to an agreement of sorts for me to reduce and it was going along ok but I can say I am not doing well even with an increase in dose. So she has me working with her PA who I met with last month and like so I am going to call her today. But she is going to want me on lefludomide. So I don't know. It's a bit scary actually. But it could also be the answer....I am smart enough to know that. But I just have a feeling. I need to talk through my concerns with the PA. I also want labs done. Some of my immune markers are off but I think she said it's the pred. I need to ask again about that. So I could look for another doc and will but it takes a long time to get in to docs here. I feel so ill this morning.

Thanks for your feedback and concern and support. This place.has saved me with info and support. I just moved here a year and a half ago but have been sick most of it so I have not developed a support system. It's hard to be kind of isolated and be in a house I love that need my attention but I can't do it. But PMRpro will be happy to know I am not pushing, I am not doing much. I can't.

Ok take care of yourself....be well.

[PMRpro Ambassador in reply to Wallysma]

"I am going to the best rheumy around ... you ask anyone and you get her name."

As a rheumatologist possibly, not arguing about that. But she obviously doesn't understand that PMR is NOT an arthritis, it is a vasculitis and it plays by different rules. DL has just quoted the guidelines to someone - only the first two lines are about a recommended fixed taper - the rest is about how adjustments must be made for individual cases.

[Wallysma in reply to PMRpro]

Yes....I know. I get it. I am in a fight here. But I need to.try to find someone who is good at PMR how? And here there are limits.in docs. But I also need to do something now things are going in the wrong direction. So I think regardless if I all today or try to get in, the answer will partly be lefludomide not sure what she will say about pred dose. If I go that route....I imagine they have to do blood work before I take thst med at minimum. X-rays or MRI would that give us info? Thank you to you and DL for hanging in with me. I thought I turned the corner. 🤔

Mickie

[PMRpro Ambassador in reply to Wallysma]

No, I doubt imaging would show much. No - rheumatologists are what you need, haematologists do blood things. Yes, there is blood work to do before starting leflunomide and ongoing. You just need to look around for other rheumies on your plan - you have more freedom than most patients in the UK. But you need someone who will listen, work with you and not repeat the same mistakes again and again.

[Wallysma in reply to PMRpro]

I think the key is she will want me on the DMARD for sure so I need to see what she.proposes after that in relation to the pred. So what dose does she propose now as I go get the labs and the new script...and then what will the reduction look like after I start the new med. I can look for other docs at the same time.

[DorsetLady PMRGCAuk volunteer in reply to Wallysma]

As mentioned by PMRpro-see this link -

healthunlocked.com/pmrgcauk...

[Wallysma in reply to DorsetLady]

Thank you. We started out ok for the first two doses then that was it. What other doctor's deal with vasculitis?? Type I mean. Hemotologist?

[DorsetLady PMRGCAuk volunteer in reply to Wallysma]

In UK it’s usually Rheumatologist initially -who then consult with others on specific areas -

Specialists who treat vasculitis include: Joint and autoimmune disease doctors (rheumatologists) 

Brain and nervous system doctors (neurologists)

 Eye doctors (ophthalmologists

Not sure in US, more seem to get involved…

[Wallysma in reply to DorsetLady]

I would say rheumatologist. I.saw a hemotologist after my first visit with the rheumy because of one of my labs but it ended up being nothing. So since I already dealt with him I thought maybe....but he really deals with cancer. Just a thought. Ok. Thank.you, DL.

[Appledore6]

Hi I have always really struggled to reduce my prednisolone over the past 5 years with P.M.R. until this year. I stopped eating all carbs and and processed food. The tapering has become so much easier. I have reduced from 10mg to 5mg in 10 months which for me is amazing. No flares or problems apart from odd days of extreme tiredness that has passed quickly. The change in diet was very difficult at first but my health and markers all improved very quickly. Good Luck

[Wallysma in reply to Appledore6]

Thank you for letting me know. I am trying to get there now actually and have reduced my carbs but still need to figure it out more to fully get there. I had done that several years ago so I know I can get there. It's great to hear your experience though. Thanks You take care of yourself. Good luck. Be well.

[Bhiros]

I also did not want to start methotrexate. Alas, I hit a plateau at 10mg. needed to go on methotrexate. now at 5 mg