decreasing by 2.5mg weekly

[gtate1914]

I'm at 50 mg pred... again. Has anyone here reduced weekly by 2.5 mg from high dosage and what has been your experience? I know we're all different, but just wondering how successful you've been at this rate.

[gtate1914]

And I might add that I've just taken my 6th methotrexate dosage which I truly detest and may quit because of GERD and the mouth ulcers that are coming with it. Plus the extra susceptibilty to infections.

[PMRpro Ambassador in reply to gtate1914]

If you have mouth ulcers you need more folic acid - that's why you should be taking it. For me the killer was fatigue that made PMR look in its infancy! Four weeks were awful - this week I have flown to S Korea - couldn't have coped with that 2 weeks ago!

[gtate1914 in reply to PMRpro]

I am taking folic acid 1 mg/day. I mentioned these sores to my rheumy but was not offered any suggestions as to what to do except I should be taking the antibiotic Bactrim. I've rinsed my mouth with colloidal silver and it went away. I'm supposed to up the dosage of MTX to 15 mg this week. Maybe I need to up the dosage of folic acid also. I need to investigate this further. Thanks.

[PMRpro Ambassador in reply to gtate1914]

Everyone is different and some patients need up to 5mg per DAY to avoid the side effects. But I set my tolerance level pretty low - and the overall itching, headache for 3 days, almost diarrhoea that made me unwilling to be far from a toilet and the fatigue say "No way Jose..."

[gtate1914 in reply to PMRpro]

Just spoke with rheumy, doubling my folic acid to 2 mg/day 7 days a week.

[PMRpro Ambassador in reply to gtate1914]

That's a start - though I do wonder if a single larger dose may work better. Don't know - just wondering...

[Hidden in reply to gtate1914]

Hi

I’m on Methotrexate 20mg & take 5mg Folic Acid on the other six days.

Do you drink plenty of water after you take the MTX?

Mrs N 🥂

PS Sorry l didn’t know what GERD was, I’ve just looked it up! So ideally you’d be better on MTX Injections as then it doesn’t affect the digestive tract at all.

[gtate1914 in reply to Hidden]

And you're also saying that you take folic acid 5mg EACH day? How is the mtx working for you? Are you seeing any benefits in reducing? Do you self-inject?

My rheumy wants to attribute all side effects to the prednisone as she knows I didn't want to take the mtx. I do agree pred could be the cause of many of them but mtx is not guilt-free either. But I do think the pred did cause my 6 hour marathon of GERD last night.... immediately after taking, it started.

Yes, I do drink plenty of water.

[Hidden in reply to gtate1914]

Hi

Yes, I take 5mg Folic Acid each day except MXT day.

I still take it in tablet form, although l was offered the injections as l suffered nausea for a while but eventually that passed.

This is the second time I’ve been on MXT as it had to be stopped for Surgery.

I was originally prescribed it to help me reduce my Pred from 18mg which it did.

I chose to go back on it when my PMR Symptoms reappeared after my Surgery & Chemo. I did get as low as 5mg l am currently on 7mg but this is more to do with the effects of the Pred on my Adrenal System & Fatigue rather than the PMR which is pretty much under control.

If you have any other questions please ask. I have written up My Experience with MXT which l can always forward to you if you’d like to read it.

Best Wishes

Mrs N 💅🏼

[gtate1914 in reply to Hidden]

Yes, I would be interested in your mtx experience. Thanks.

So evidently 5 mg folic acid per day is not affecting the benefit you are experiencing with mtx. I'm thinking that is what I need to do.

Are you self-injecting the mtx or taking tablets? I'm supposed to take 6 tablets beginning this week, 2.5mg each, have been taking 5 each week.

[gtate1914 in reply to gtate1914]

I should add that 5mg may not be the amount I should take but will discuss it with rheumy and slowly increase to see the effect....

[Hidden in reply to gtate1914]

Hi

Yes 5mg Folic Acid & 20mg MXT Tablets.

I’ll send you my Experience with MXT in a Private Maessage, it was written over 12months ago so my dose is different now.

Hope it helps

Mrs N 💅🏼

[PMRpro Ambassador in reply to Hidden]

I'd like a read of that too - have you posted it before?

[Hidden in reply to PMRpro]

Yes, l can send it to you x

[Hidden in reply to PMRpro]

My experience with Methotrexate

I'd been on Prednisolone for a couple of years but could never get below 11mgs while I was working, so l decided to retire early to see if I could get the dose lower.

Following my Retirement I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone & could barely walk without getting out of breath, my BP was through the roof & my resting pulse rate was 100+ so there really was no choice but to try it!

I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.

At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.

I came down 1mg per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.

For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October 2016 I'm now at 7mg; l have been down to 5mg but have varied between 5mg -> 7.5mg

Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.

That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.

It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.

If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, there’s no need to wean off it.

Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days at 5mg but other people have differing protocols.

If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the bottom the page.

Best Wishes & Good Luck 🍀

Mrs N

[SheffieldJane]

I do not have experience of the high doses ( touch wood) I don’t think I’d cope very well. So I can’t answer the specifics of your question. I just want to send my commiserations to you. I know you were told that your GCA symptoms didn’t have to be gone, when you began a taper, by your doctors.

All I can say is hmmm! and here you are back at 50 again. Perhaps smaller drops might suit you better as you say that you are sensitive to them. At least your sight is safe, good luck.

[Hidden]

Hi gtate1914, I started at 60mg and my Rheumy had me tapering by 5 mg, every 2 weeks.

This ended up being to aggressive for me and when I got to 45mg, I thought I'd die. I had to go back up to 80mg to get relief! Dropping 2.5 at a such a high dose of 50, sounds reasonable... but maybe weekly is too frequently. I'm wondering if every two weeks would be better?

[gtate1914]

You may have a point. I was just thinking about this very thing this evening. Maybe even 10 or 12 days would be better than weekly, after all, I've only started 50 mg on Monday. I'm afraid of running into trouble by going too fast, even at 2.5. I know I've been at the high dose too long, but may be asking for trouble.... I'm sorry you had to go back up to 80 after getting down to 45. So how long did it take you to get back down after having to go up?

[DorsetLady PMRGCAuk volunteer]

Would say that 2.5mg weekly is too fast. Plus if you reduce every week you are unlikely to know when you go below the level you actually need, it can take that long for a flare to manifest itself. Much better to try every two weeks. Personally I’d advocate every 4 weeks, but I know many doctors prefer 2.

I think you’ve read my reply when I said I reduced 5mg about every 4th week - you are trying to taper 10mg over the same time, and even though you are on MTX it’s obviously still too fast for you.

[SnazzyD]

Hello, you might be reducing the size of steps but not necessarily the reduction over a given period. This might be fine for some, but you sound like a person for whom it isn’t. I found 5mg from 40mg was a bit rough and 2.5mg better so I did that from 30mg. I certainly got niggles in the temple during reduction, especially in the biopsy scar but they settled and I never did reduce faster than 2.5mg in 2 weeks. If the pain was in the biopsy scar or the TMJ joint, I ignored it because I eventually realised those bits sang their own song. Working out what’s what takes time and makes for a stressful experience until you learn your body’s messages, being tempted along the way to hurry it up because it’s horrible being marinaded in Pred. The fatigue will be par for the course; I felt horribly weak and tired at these doses and you have Methotrexate on top. Mamici1 has worn the T-shirt in terms of being desperate to reduce (I don’t blame her) but getting burned and having to go back up. You also have that difficult task of doing what feels right for your body but having the docs telling you to go faster. I remember hoping for a definitive answer but really got the only answer, “it depends on you”, which is exasperating because all we want is some certainty in this blasted game.

[Berylholley in reply to SnazzyD]

I have similar symptoms and I have just started to taper from 40mg down to 35mg. I am going to try 2.5mg every 4 weeks as I have already had a nasty lower back muscles problem when doctor told me to reduce on the 12th day after I started the 40mg in May.

[Sho-Sho]

I agree with Dorset Lady - from experience 2.5mg fortnightly is a sensible slow reduction. I started on 60 and was told to reduce in far too big steps by the hospital rheumatologist and had to go up again, I took a second opinion and she put me back onto 2.5. Your body seems to cope with it much better and I'm sure reduces the chances of getting a flare.

Good luck.

[gtate1914]

As an ancient proverbs states "when there is no skillful direction, the people fall, but there is success through many advisers."

I truly appreciate your advice and real life experiences. I want to proceed cautiously, having been on that fast track before with disastrous results. Of course I didn't know any better, but the consequences are the same.....

[gtate1914]

Both my rheumy and gp want me to taper 2.5mg after being on 50mg for only 8 days, they feel it's crucial I get down as quickly as possible, been too high dose too long. My inflammation markers are excellent, almost undetectable. Doing labs every 2 wks to check it. I don't think the disease will get me, it'll be the "cure", prednisone and mtx.

[PMRpro Ambassador]

After 9 years of meeting people with GCA and PMR in the forums I think I can truthfully say that any size of reduction done weekly is a daft idea! Your body never comes to rest and is struggling to cope with the changing dose all the time.

That is why I worked out the idea of the Dead Slow and Nearly Stop approach, extending on the experiences of a couple of other patients. You challenge your body with the new dose only one day at a time and go back to "normal" in between. A lot of people manage the bigger step of 5mg or even 10mg spread out like that over a month without the agonies of steroid withdrawal. It may not suit everyone - but I have heard of few failures with it.

I don't care what any doctor tells me - it is the changes in dose that make tapering more difficult. Make them minimal or compensate in another way - your patients won't have flares or not know whether it is steroid withdrawal or a flare when symptoms reappear. After all - how many doctors have walked in our shoes?

[gtate1914 in reply to PMRpro]

I believe that has been my problem, not knowing what is steroid w/d or a flare. Usually around day 9-11. So far day 7 on 50mg and doing "ok". Rheumy and GP are adamant to taper weekly or every 8,9 days. Am so unsure of what to do. They are telling me what can happen since I've been on high dose so long, esp. if I start vomiting blood.... am having more pains in back and chest..... yeah, they have me worried.