Hello! I am new to this forum. Recently diagnosed with PMR (severe) and RA (very mild).

[cmb02]

Dr did give me Methotrexate (which has not helped) and 1 week only of prednisone which was 99% helpful, but no refills, and wants to follow up in March. I don't understand why he is treating RA aggressively and not PMR.

[SheffieldJane]

Me neither. This is not the treatment protocol for PMR which is a start dose of 15 mgs Prednisone until the inflammation is dealt with and a slow taper to find the lowest possible dose that controls symptoms. Please look at our FAQs section. Welcome to the site. Be sure to tell the doctor that the corticoid treatment has worked and you need further prescriptions. Failing this, you need a doctor who understands the condition.

[Bcol]

Good morning Cmb02 and welcome to the forum. As SJ has already said, that treatment is certainly not the normal protocol for for PMR which would normally be a starting dose of 15-25mg of Pred for a few weeks to get things under control and then the start of a slow taper down. If you have the time then reading the FAQ's is a good place to start with finding out more about this long term systemic disease, which many of us had never heard of before diagnosis.

[Constance13]

So sorry you have had to join our “club”! HU is a wonderful set of people who deal with diverse illnesses.I have very aggressive PMR and equally aggressive RA. Your doctor is unbelievable!😬 You proved to him that Pred worked beautifully and he won’t let you have the only thing that will help!!!

Doctors - even specialists say PMR lasts roughly two years. There are people on this forum who have had it over 10 years (me included). It does usually go into remission but how long each patient will have it no-one knows.

The RA is something else - it is usually excessively painful and is not curable.

Try to find another doctor. Look up the Mayo clinic info about PMR/GCA.

Good luck! 🍀🍀🍀

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

As others have said, your doctor obviously doesn’t understand PMR, perhaps you should have a look at this so at least you do -

healthunlocked.com/pmrgcauk...

And as suggested, find more advice from US site to present to your doctor

[PMRpro Ambassador]

It is possible he thinks that it isn't PMR in the sense most of us think of it but a polymyalgic presentation of RA. PMR isn't the disease - it is the name given to a set of symptoms which can have a range of underlying causes, RA being one.

What are his grounds for saying RA? Blood tests or imaging? And why severe PMR? If you got that sort of relief with a week of pred, it seems unkind to leave you weeks without pain relief. You don't say how recently the diagnosis was made - but MTX sometimes takes up to 6 months to show a significant result. He may be of the persuasion that MTX also works for PMR and is preferable to long term pred.

Have you told him about your outstanding response to pred? What dose did he start you on?

[cmb02 in reply to PMRpro]

Thanks for the insite! I was diagnosed with RA in Jan 22 after blood test results were off the charts. I was started on 10mg per week of Methotrexate. I've only been on 2 months! When he did give me Prednisone it was 4mg and it helped 90%. I do have a follow up visit in March with repeat blood tests. Interesting view of PMR being underlying condition of RA. It seemed that once he found out mom had RA, his focus was only on that. I did see his online diagnosis which is Malagia and RA. I am going with a lot of questions to be answered. Thank you so very much!

[DorsetLady PMRGCAuk volunteer in reply to cmb02]

4mg is a very low dose to show such an improvement for PMR…..usual starting dose is anything from 12.5mg to 25mg, norm being 15mg. Be interesting to see what comes up at next appointment.

[PMRpro Ambassador in reply to cmb02]

Is that right - 4mg pred? Or is it a typo?

[cmb02 in reply to PMRpro]

Box says 4mg!

[PMRpro Ambassador in reply to cmb02]

Yes - but how many tablets at a time?

[cmb02 in reply to PMRpro]

Winds down for 6 days onlyDay 1 , 6 pills @24mg, Day 2 5pills, etc.

[PMRpro Ambassador in reply to cmb02]

Oh right - a steroid taper. Fat lot of use that is in PMR except for diagnostic purposes to see if what you have responds to pred. Hope he is prepared to let you have more ongoing - but probably 15 or 20 may be enough to start at.

[Nextoneplease]

I’ve only ever seen boxes of 5mg, 2.5mg and 1mg…..but perhaps it’s different in the States?

If they are definitely 4mg tablets, are you meant to take more than one at a time I wonder? A typical starting dose in the UK would be about 15mg, but that’s without other meds like MTX…

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Prednisone as apposed to Prednisolone…..Latter UK, former US and some other countries…

In UK, Prednisolone also comes in 10mg and 20mg Also once 25mg - been there!

[Nextoneplease in reply to DorsetLady]

Ah I see - thank you x

[Pawscat11 in reply to Nextoneplease]

In Spain I have boxes of 30mg 20mg 15mg 10mg 5mg and 2.5 mg but no 1mg sadly

[Nextoneplease in reply to Pawscat11]

Must be difficult having no 1mg Pawscat11 🤔

When I was on 40mg they told me to take 8x5mg but that was no problem.. x

[DorsetLady PMRGCAuk volunteer in reply to Pawscat11]

You can cut 2.5mg so long as plain white tablets…

[Pawscat11 in reply to DorsetLady]

Yes and I do but they are small so if I ever( seems like it will never happen) get to small doses I cant do 0.5 reduction only 1.25

[PMRpro Ambassador in reply to Pawscat11]

That's where the slowed tapers come in. Dead Slow and Nearly Stop was partly developed to allow people on enteric coated pred to manage to reduce more easily. At the time there were no 1mg tablets, just 5 and 2.5. and enteric coated can't be cut. A lot of people manage a small amount of plain pred but others can't.

[PMRpro Ambassador in reply to Nextoneplease]

Medrol/methyl prednisolone comes in 4mg tablets - equivalent to 5mg pred

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Stand corrected -ta

[cmb02 in reply to PMRpro]

Thanks, did not understand the difference!

[Nextoneplease in reply to PMRpro]

Ah, that makes sense - thanks 😊

[piglette]

I am so sorry you have been diagnosed with both RA and PMR. How rotten. What is the name of the medicine on the 4mg box? Have you been given Folic Acid to take with the Methotrexate?

[cmb02 in reply to piglette]

4mg of prednisolone. 1st day 6 pills, 2nd day 5 pills, etc. Only 1 week of this which helps by the second day!Methotrexate 10mg 1 x week.

No Folic acid.

On 3/20 I have a follow up visit with new labs. Hope that most of my concerns get cleared up..

[Nextoneplease in reply to cmb02]

Thanks for this. An interesting regimen….evidently not yet meant to be long term. Glad it’s giving you relief in the interim and will be interested in how it goes xx

[PMRpro Ambassador in reply to cmb02]

Methotrexate and NO folic acid? What's he playing at?

[piglette in reply to cmb02]

Sounds mad to me. Normally you do not reduce for three or four weeks after starting pred not the day after.

[cmb02 in reply to piglette]

I just found out that prednisolone (that I am on) is different than prednisone. I didn't know..

[PMRpro Ambassador in reply to cmb02]

Not that different - prednisone must be processed in the liver to produce prednisolone which is the active form of the drug and the dose is exactly the same, a 1:1 equivalent. The only difference is that plain prednisolone is in the system and effective in an hour, prednisone takes a couple of hours to start working.

[Plains in reply to cmb02]

Hi sorry you are going through this. It sounds like your doctor is not very well informed. You must take folic acid with metx

[SapoKiko in reply to cmb02]

This sounds like a prescription for someone with an upper respiratory infection, I would suggest this doctor does not understand PMR. Anyway welcome to the forum, I am relatively new here too, lots of helpful information and very supportive people!

[singingloud]

Can you tell us your lab test numbers for sediment rate, crp and rheumatoid factor? And did you see a general practitioner or a rheumatologist who gave you the prescription?

[bonmaine]

What is it with rheumys? I was misdiagnosed with RA by rheumy # 1, who was incompetent in so many ways. Been "fighting" with r#2 for almost a year who is unwilling to accept that I have Pmr and treat me accordingly. Been very frustrating. Dbld the MTX which gave me frequent disabling malaise FINALLY I got him to give me 10mgs of Pred along with a script for MTX . I started the Pred and I feel so much better, I did not take the MTX and he doesn't know this yet. Ought to be an interesting office visit next month.

TY to all on this site. I am in the US. The site has been SO MUCH more helpful than my R. I had a Dr. once who said that if you want to know whats wrong with yr patient, ask them.

Interesting that there seems to be so many patients who are unhappy with their R.

[SapoKiko in reply to bonmaine]

Agreed - there seems to be such a general sense of arrogance with physicians - if you find one who is actually willing to LISTEN it is a godsend. I'm lucky enough to be working with such a fellow as my rheumy, he wants ME to have the biggest role in managing my treatment. My body after all, right?

[Blomps]

Hi there, I was diagnosed with PMR in 2018 and ended up on 50mg Predisnolone as I was having Temporal problems to. Reduced as soon as possible but ran into more Temporal problems. Back up to 40mg Preds and Methotrexate tablets 15mg, which did not agree with me. I now give myself a 20mg Methotrexate injection once a week and now after several ups, down to 17.5 Preds tapering 1/1.5 every 2 weeks. So far so good but after 4 years of ups and downs not very confident of end result, but a day at a time I'm OK. Biggest problem for me is the effect Steroids have on my type 2 Diabetes.

I got it under control without any meds until PMR struck since then figures are nearly uncontrollable even with tablets and Humolin injections. Life goes on and I am grateful for all the help I get. Graeme

[MrsNails]

I’ve been away for the weekend - have you checked in with your Prescribing Doctor's Secretary re the Pred as it maybe an oversight on his part or he may have just wanted you to have a weeks course (which isn’t usual) but l’d check in to be sure.