Worried about tapering from 40mg

[Broseley]

I saw the rheumy today for the first time. I have been on 40mg pred for a month after starting on 15mg which got rid of all my PMR symptoms but not quite the headache. He wants to drop me to 30mg from tomorrow for a month, then to 25mg for 2 weeks then 20 mg for a month and so on. This, from what I've read here, sounds a bit quick. Would it be reasonable to ignore him and do a 5mg drop from tomorrow instead? I did a search on here but tapering plans given here are all for below 10mg doses.

[jinasc]

If I have read your profile correct they diagnosed PMR in June this year and put you on a low dose of pred. Then revised it after GCA symptoms appeared and now you have both.

The rule normally is a drop of no more than 10% at a time when on higher doses. If you have both then he is asking for a big drop. Personally my Rheumy never asked me to drop more than 10% at a time.

By the time I got to 10mg, tapering plans devised by patients came along and one DSNS was subjected to a small trial and was successful. I do have the article in question.

Other will be along shortly.

You do seem to not be getting along with your Rheumy or am I wrong?

[Broseley in reply to jinasc]

Thanks rheumy was nice I just wanted to ask him lots of questions. I don't trust anyone these days. I developed symptoms of PMR in June but not diagnosed till late August, put on 15mg pred. GP sent me for further assessment after 2 weeks of headache in September. Results came back today, biopsy was normal but rheumy says they're still treating it as GCA though i've had no eye problems, just headache and stiff jaw and ESR and CRP over 55. Please excuse my brevity I'm on my phone and a hopeless typer on it so it takes me ages.

[jinasc in reply to Broseley]

"I don't trust anyone these days".

Is this lack of trust because you were not diagnosed quickly?

If so, you are not alone in not been diagnosed quickly, some people have not been diagnosed for well over 2 or three years. I do know for sure that one person who posts on here it took 5 years. There will be more.

That was one of the main reasons that this charity PMR & GCA UK was set up to raise awareness, support and more research. You might like to take a look at this:

healthunlocked.com/pmrgcauk....

[Broseley in reply to jinasc]

Thank you. It took about a month, but misdiagnosis was by a locum...No, I have had plenty of experiences where my own research has paid big dividends, rather than trusting a so called expert, even if it's a tradesman. So I always do my own research these days then make my own mind up.

[DorsetLady PMRGCAuk volunteer]

Personally I would go to 35mg for 2 weeks, and then - provided it is okay - try the second 5mg to 30mg. You will still have done it in his timescale.

You may be able to continue at 2 weekly intervals until you get to 20mg, but just make really sure you are okay…..if not, tgen stay longer….but let him know, and why.

For info this was mine….different scenario hence the long time on 80/60 , which probably meant I could do 40-30 without a problem, but gives you an idea -

80mg - 2 weeks

60mg - 8 weeks

55mg - 2 weeks

50mg - 3 weeks

40mg - 2 weeks

30mg - 3 weeks

25mg - 4 weeks

20mg - 5 weeks

17.5mg - 4 weeks

[Boss302Fan in reply to DorsetLady]

Interesting. No GCA symptoms but mine was:

80 mg - 2 days

60 mg - 4 weeks

50 mg - 4 weeks

40 mg - 4 weeks

35 mg - 4 weeks

30 mg - 4 weeks

25 mg - 4 weeks

20 mg - 4 weeks

17.5 mg - 3 weeks

15 mg - 3 weeks

12.5 mg - 3 weeks

10 mg - 4 weeks and 1 mg drops/weeks thereafter.

Had a couple of flares. NICE approach until about 30mg then I found this website and the taper you posted. I tried sticking with the drops but used your 5 wks instead of 4 weeks. Had a Flare at the drop to 15mg and

Modified my schedule and drops. The rheumy thinks I’ve had more flares than I really did…I wonder what gave him that idea?🤔😂

[DorsetLady PMRGCAuk volunteer in reply to Boss302Fan]

Glad to hear you’re going along as well as you are…we have to do what’s good for us as an individual…unfortunately as we know some doctors don’t like that.

I was on steroids for a total of 4.5years… maybe could have got off quicker, but that’s just conjecture. All I know that because of the issues I had pre diagnosis I wasn’t prepared to take risks and lose sight in remaining eye. The fact that I never flared, in my mind, justifies my taper.

Just for interest, I only saw a rheumatologist twice, at 7 and 9 months into treatment, the remainder was overseen by 2 different GPs.

[Broseley in reply to DorsetLady]

Thanks Dorset Lady. Your GP sounds switched on then, or did you manage mostly on your own?

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Unfortunately my original GP wasn’t switched on at all initially… she misdiagnosed me for 18 months which is why I lost sight in right eye.

But once diagnosed by Ophthamologist, she certainly found out as much as she could…..and we planned things together. She was naturally very cautious understandably, so no rushing at any time.

About 18 months after diagnosis I changed surgeries, and that GP was very experienced and sensible, I was on about 13 or 14mg by then, and apart from the odd phone call really left me to taper in my own way…

[Broseley in reply to DorsetLady]

That sounds horrendous, but a better ending to it all. Thanks again for all your help.

[Boss302Fan in reply to DorsetLady]

Saw my GP once within 2 wks of leaving the ER, and she got me an appt at the same time with a Rheumy practice a week after her appt. Rheumy has been seeing me about every 3 mos since. Blood workup 2 wks prior to each visit. I had him include Ca twice and it looked fine so stopped bothering with it. Same with D, it was low first time, I had brought it up the 2nd by almost doubling my intake of D3

[Sharitone]

I was told to go down to 30mg after a month each on 60,50,40mg, but was given a concession to take 35mg half-way through that month. It did help with side effects, etc

[Broseley]

Thanks, what side effects should I expect please? Rheumy didn't say.

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

For side effects of Pred see Information in box - you won’t get all, but you may get some of the common ones

Side effects of reducing - or steroid withdrawal - see this post for info of how to decide if it’s withdrawal or a flare -

healthunlocked.com/pmrgcauk...

[Broseley in reply to DorsetLady]

Thanks, call me dim, maybe it's withdrawal, but I can't find any information in a box, and the link to withdrawal symptoms from the post no longer works!

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

Should do, it’s in blue writing…have linked again (works for me)..

healthunlocked.com/pmrgcauk...

….if it doesn’t, then go to FAQs and look for -

Flare or withdrawal?

[Broseley in reply to DorsetLady]

Thanks, found the one called Flare or Withdrawal. It's the link to the side effects one that doesn't work, from PMRPro' pinned post, is that the information box you meant?

[DorsetLady PMRGCAuk volunteer in reply to Broseley]

The side effects of Pred are listed in the Patient Information Leaflet (PIL) in your tablet box… I didn’t give a link for that although you can find online

[Broseley in reply to DorsetLady]

Oh, sorry, I thought you were referring to this site. Yes I have read the leaflet, it talks about signs mainly but not so much symptoms such as feeling hyper.

[PMRpro Ambassador in reply to Broseley]

According to the lists there are over 80 potential side effects. However, no-one gets them all and many get none or next to none! And I can say from personal experience that some of them happen with PMR without ever having taking a tablet of pred!

[Boss302Fan in reply to PMRpro]

My side effects were:

*Hyperactive until less than 20mg. Like being on a caffeine high.

*Elevated ocular pressure in left eye successfully managed with 0.5% timolol maleate eye drops 2x/d. This will probably be stopped in Nov.

*Elevated blood pressure - successfully managed with Metoprolol succinate ER 25mg tablet daily.

*Borderline osteopenia managing with 800mg Ca / 200mg Mg / 3,400 IU D3 / 100mcg K2 (I say managing as I only know for certain that my Vit D levels are good. Dexascan to be scheduled before end of this year).

Preexisting conditions already taking medicine before PMR with no apparent change in conditions, ie., still being successfully managed at dosage before pred.

GERD. & High Cholesterol

[Broseley in reply to Boss302Fan]

That's interesting. I have felt hyper too, even on my initial dose of 15mg, now just gone from 40 to 30. I've also felt my heart thumping and pulse in my head. My blood pressure is 177 over 80. I'm already on BP tablets. My eyes have felt like they have high pressure. Rheumy did not comment on any of this and when I said I was worried about my BP he said it would come down with tapering. He did advise me to pay a visit to the opticians. Bloods taken to measure ESR, CRP, HbA1c, LFT, FBC but not Vit D. No results yet. Osteopenia diagnosed in June (before PMR diagnosis) and I'm on 1000mg calcium, 1100UI D3 and 37mcg K2. Not prescribed by him or GP who don't believe K2 is helpful. No Mg as don't believe that helps either. Sounds like your health team are more on the ball!

[Boss302Fan]

I’m more or less my own health team. Upon review of my supplements my GP told me to stop Vit E (which was a blend of tocopherols & tocotrienols most important fractions) and Vit K. I told her I disagreed with her reasoning but would give up the E but not the K2 and my reasoning. That she accepted.

My Rheumy I think is pretty young but it’s hard to tell as he’s Indian and they tend to always look younger than they actually are, that said I put him in his mid 30s. Nice guy but I think his forte is RA not PMR. I brought him hardcopies of some of the papers I came across. He doesn’t give me much grief, we butted heads a few times, usually I’d say Ok and went home and did my own this. He ask at my visit why I wasn’t on target and I’d say I had a minor flare. But now he’s been going along with my approach. Like I said I just feel out of touch with my adrenals since I’ve only had two passing mild nausea episodes that lasted about 15 min each that I assuming is due to adrenals. I’ve read the patient has to be prepared to deal with mild symptoms but at the same time be prepared to respond to a serious deficiency. I’m not prepared at all! Hopefully that can be resolved before end of this year.