I am tired of this thing

[dcampbell]

I was diagnosed with PMR in July of 2016. Pred worked perfectly - within 18 hours I was pain free. Prior to this condition I had lost 65 lbs. The pain before I was diagnosed (about 6 weeks) and then the Pred (20 mg a day to start) gave me an insatiable appetite- so some of the weight has come back on. I have weaned down to 7.5 mg a day- and the pain in back- only in my legs, knees and hips- upper body is totally pain free. I am also on methotrexate- 30 mg a week. The plan with the dr. was to wean off the Pred and only have metho- and that worked when I was at 10mg of Pred. Should I go back up to 10 and wean off more gradually- like down to 9 and then 8.. instead of from 10 to 7.5? I have always had low Vitamin D- so I have been taking D3 - 400 units a day- I am trying to find out how much I should take of the Vitamin D- as I think that this has been low for a long time. Thanks for any help.

[Hidden]

Hi

I'm on Methotrexate 20mg per week & Prednisolone; I came down in 1mg drops from 10-9-8 then from there in 0.5mg as per my Consultants instructions, I currently sit at 6.5mg but there is no plan for the Methotrexate to replace the Prednisolone, I was started on the MXT to help reduce my Pred from 18mg

I take Calcichew-D3 twice a day so that's 800IU per day. I had my Vitamin D levels done about three years ago & my Consultant put me on additional High Dose Vitamin D in capsule form for a month.

Perhaps it might be worth having your levels checked & see if you need additional or not & check with your GP what dose you should be on?

Best Wishes

Mrs N

[PMRpro Ambassador]

I'm sorry - but I fail to understand why doctors insist on telling patients that methotrexate will replace pred in PMR. It doesn't. It MAY help people manage on a lower dose of pred (or not) - that isn't the same. If it replaced pred they would use it instead. They don't.

You need your blood vit D level checked. When you know what it is, then you can make a decision about what dose of vit D makes sense. If your blood level is very low you need considerably more than 400 IU, that is barely enough to maintain the level never mind increase it if it is low. My husband had a vit D level in single figures - he's been on 25,000 IU per week, nearly 10 times what you are taking. My vit D level was OK last time it was checked. I take 800 IU per day all the time and occasionally take an extra 10,000 IU.

[Lochy in reply to PMRpro]

I see I'm heading in the methotrexate direction but interested to know what happens once you do manage to reduce the pred dose? Does the methotrexate stop or do you have to continue with both indefinitely? Is it better to be on methotrexate instead of pred? I'm not sure I understand what the methotrexate actually does. I'm seeing my rheumatoid next month and want to be prepared!

[1602 in reply to Lochy]

as I'm on both am interested in any replies to this especially as I'm not too convinced the met is doing any good

[Hidden in reply to Lochy]

Hi, I'd been on 20mg of Prednisolone for far too long & it was causing me other issues such as shortness of breath, high blood pressure & a very high pulse rate so my GP felt I needed intervention & sent me to see another Rheumatologist, who put me on Methotrexate & I tapered down from 18mg to 7mg without much trouble, 1mg per month using the Slow Taper, the MXT took some adjusting too (nausea) but it did what it was prescribed for, it had to be stopped because unfortunately I needed surgery followed by Chemotherapy.

Six months after the Chemo my PMR starting showing its signs & symptoms again, as I'd been quite settled at 5mg, so with my GP's agreement I went back to 7.5mg with a re-referral to my Rheumatologist. She rang me immediately & after some discussion started me back on Methotrexate again, as I did not want to start heading upwards again to high dose Prednisolone to try keep my symptoms in check.

I'm back now at 6.5mg which I'm staying on while l go on holiday or even longer if I need to.

It's prescribed as a steroid sparer to in effect make the steroid work better at a lower dose. It worked for me but doesn't for everyone.

There are a couple of people on here who've had a bad experience with it but I can only say it worked for me & in fact it's time for me to take it now!

Best Wishes

Mrs N

[Lochy in reply to Hidden]

Thanks that is useful to know. I have heard the side effects can be bad for some but everyone's different. My GP and rheumatologist are more concerned with me on 20mg of pred for too long - I had to return to 20mg before Christmas from 17mg - and the effects of high steroid dose. I'm concerned about the other drug options but it's so difficult to be confident or assertive with your doctors as we all feel they are the experts!

[Hidden]

Lochy

I can reply in a bit more detail later, having guests now for a Birthday Lunch

Mrs N

[Hidden in reply to Hidden]

Morning Lochy

As promised, a bit more on my journey with Methotrexate:

Following bloods tests & a Chest X-ray I started on 10mg for 2 weeks, then up to 20mg, it's taken weekly with Folic Acid on the other six days (some have a slightly different regime with the Folic Acid) Consultants preference l think. You also have monthly blood tests to ensure it's not causing any issues.

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 an antiemetic, kept my food simple & within a couple of weeks or so the nausea passed.

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

As I mentioned in my other post l'm back on it again & it was by choice. My experience overall wasn't too bad or I wouldn't have asked to go back on it, I'm sure!

Other people have not had a good experience on it, making them quite ill but sometimes you get to a point where you have to make difficult choices!

If you have anything you'd like to ask me specifically use the Private Message Box at the top of the page (two speech bubbles) l'm not having the daily newsletter while I'm away but any PM's I'll still be notified off. I may not answer straight away due to time zone & availability of WiFi.

Good Luck with your decision 🍀

Mrs N x

[SusanEleven]

I've been on the Vitamin D bandwagon since 1996. That was the year docs were pushing me to try Fosamax bisphosphonate bone meds which hit the market here in 1995. I said no way, I won't take a drug that new because in 10 years someone will say "oops" we found out it's not so great.

I asked for a Vitamin D test instead. My line of thinking was simple: many folks in my family have lousy bones and after reading about Vit D I thought maybe it's an issue in my family. My test came back in the "severe deficiency" range. I was prescribed pills of 50,000 IU and my levels barely changed. Back then the prescription version was D2, which gave me a quick rise in my D level that dropped back to deficiency range very quickly. I dug up a research study that said D3 was SO much better and my doctor said ok, let's switch. Ah, the innocent 1990s :>)

After experimenting with dosage my endocrinologist and I settled on my taking 4000 IU of D3 per day year-round. Yes, four thousand. It's what my body requires to stay in the normal range for Vitamin D. Crazy. I just use the D3 that I can buy in the local drugstore or supermarket.

The test name here in the US is a 25-hydroxy vitamin D blood test. My endo checks it once or twice a year to make sure everything is good. So I'd say blood testing is good because otherwise it's just guessing.