Tapering Pred

[Horizon12]

A little concerned about how my PMR is being monitored. I was diagnosed on 14/14/2018 by having a blood test, put on 30 mg pred for a couple of weeks then 20 mg and am tapering now, down to 10 mg. All through this time I have not had my bloods taken and not seen the Dr. When I made an appointment in May I was told to taper on my own and listen to my body. I am a nurse and have knowledge of PMR where I have looked after patients, but I still feel this is a little strange.

[DorsetLady PMRGCAuk volunteer]

Yes it is!

With PMR your GP can look after you if he feels confident in doing so, you don’t necessarily need to see a Rheumy, but you do need to be monitored and advised. Do you think it’s because you are a nurse and he expects you to know more than you do? Whatever, it’s not good enough.

I know many don’t have regular bloods tests, but early days you really need to - to enable you (and your GP) to gauge how things are progressing. Plus it gives you a baseline for the future.

You are obviously sensible enough to react if your symptoms return, but you should still be given guidelines and not left to get on with it!

I guess you haven’t had any significant problems (although I note 4 months ago you increased Pred) or you would have pushed to see GP, but from now on you may find a bit more difficult.

In the lack of any ‘professional” advice I would suggest you only reduce by 0.5mg on a monthly basis from now on (provided you feel okay to do so). And certainly consider using a slower taper - there are a few about. Once you get a bit lower the adrenals will need to kick back in and many find that a very difficult time with fatigue.

I fear you may more assistance from your work colleagues in future if the fatigue hits in, so please keep them in the loop, and don’t try and be a hero! As a nurse you are already, so if you need help please ask for it!

[Horizon12 in reply to DorsetLady]

Thank-you for your reply. My work mates are very good, I often need 10 minutes rest at work when the chronic fatigue takes over. This they understand. Was thinking of tapering 0.5 mg a month and see how I get on. I did have a flare up 4 months ago, went to the Drs and they advised an increase to 15 mg after a few days I was still in a lot of pain so upped it myself to 20 mg. That worked.

[piglette in reply to Horizon12]

I found I was able to reduce 1mg over 10mg and then .5mg after that. My rheumie wanted me to reduce 5mg at a time over 10mg, total disaster.

[Mary63]

Having looked at your previous posts it seems you have had some slightly strange advice from your GP up until May. Very quick taper and then up and down in dose quite a bit.

I only see my GP about every 6 or 9 months, and only then at my request...never hers. I have had no blood tests for over two years, but as I feel pretty well, I am not over bothered. I (also a nurse) am not super impressed by this.

BUT she does let me do what I like re tapering now, whereas before she was taking me too fast, and I flared and had to back up to 15mg.

I now taper following the advice on this forum, but would go and see my GP if anything seemed untoward.

So what should you do? Maybe just book an appt every few months to check in? Or if you don’t feel well.

Diagnosed Jan 2016. Now on 7mg trying(again) to taper DSNS to 6.5mg. Waiting for adrenals to kick back in.

[Horizon12 in reply to Mary63]

Thank-you for your reply. Do you suffer from chronic fatigue and if so how do you cope with it? Will see how the tapering goes and if I need to will make an appointment with my GP.

[PMRpro Ambassador]

14/14?????? Is that a new calendar

I have never really had blood tests - my ESR and CRP were never out of normal range so no doctors ever took up on them. In fact they have been high for me at 16-ish when my normal is in low single figures. And the blood markers don't really mean a lot once you are on pred unless you also have symptoms. They tend to lag behind and in some people don't rise at all when on pred. So being told you should listen to your body is not entirely crackers.

But you should be having Hba1c and BP checked. And just general things. But 3 or 6 monthly is probably fine for that.

[Horizon12 in reply to PMRpro]

OK will do that thank-you for your reply

[piglette]

I never really saw my GP except when she first started her job to say hello. I saw her again two years later, as I had sciatica. I just organise my own blood tests when I fancy having them. I am a bit of a nerd and have all sorts! No one has complained. I was diagnosed by a rheumie who I packed in fairly quickly as he became a bit touchy feely.

[Horizon12 in reply to piglette]

That rheumie was not very proffesional , I would have reported that. (sorry can't spell).

[piglette in reply to Horizon12]

I did tell my GP who said she had never heard of that happening before.

[PMRCanada]

I’ve been diagnosed since May 1/18 and saw a Rheumy every 2 months, comprehensive blood work at the beginning to check for diabetes, RA, ESR, CRP and such. Sent for bone density scan for baseline, and saw optometrist as well.

Now under care of my of my GP, monthly blood work for blood glucose/sugar level, ESR, and CRP (my CRP does go up and down with inflammation fluctuations). Will see him every 2 months to check blood pressure, weight, give updates on tapering progress (following my own taper), discuss chronic knee issues.

He said should I develop GCA symptoms or if I have real difficult tapering he will refer me to a Rheumy of my choice (he also has a recommendation). He will repeat bone density scan in one year.

This works well for me thus far. Hope you are able to taper at a rate that works for you and your symptoms and you get more supervision if need be. Keep us updated.

[aladymo in reply to PMRCanada]

Great rapport and care.

[Mary63]

Hello Horizon 12. In response to your question do I suffer from chronic fatigue? For the first 20 months or so,,,,yes,.. I dis mention to my GP and she did blood tests for anaemia, which were ok. She seemed surprised I was tired! But by then I had been in touch with this forum for a while and knew it was part of the package.

I am hesitant to say that in the least few months fatigue has been better ( I still count spoons and am careful) but whenever I slowly try 6.5 from 7, fatigue kicks back in after a while.

I am presuming this is due to adrenals. I am plucking up courage to begin that taper again to 6.5 and hope it will be less of a problem.

I wish you well.

[JulieR2]

Hi there I did originally see my GP every three months and had bloods every 6 weeks. I think this is important to monitor the impact on other areas as well as PMR. I have had to start taking statins as my cholesterol went up and I couldn’t get it back down. You should also have had a referral to your occupational health team so that reasonable adjustments could be made at work. Given the shortage of GPS I now see the practise nurse and pharmacist at the surgery for routine monitoring. Good luck

[joat in reply to JulieR2]

I found your cholesteral going up and could not get it down interesting. Mine rose quite a lot, mentioned it to GP who would not discuss it as I had said I did not want statins because I had read they do not make a difference to over 75`s. How did you try to reduce the cholesterol before taking statins?

[JulieR2 in reply to joat]

Hi there tried usual

Low fat diets, porridge and benecol. My GP wrote to the lipid clinic consultant who advised on balance I should take them. There is a familiar history too. There is so much conflicting advice out there it blows my mind😀

[joat in reply to JulieR2]

Thank you. I have porridge and will try Benecol. Unfortunately the GP refuses to do a blood test which I wanted as the last one was a prick in the fingure at a supermarket and I wonder how accurate it was.

[JulieR2 in reply to joat]

Your GP sounds a nightmare. If you work in the NHS try your occupational health team.

[Constance13 in reply to joat]

Mine did, from 348 to162 in just a couple of months. I’m 79!

[gifford7 in reply to joat]

Atorvastatin[Lipitor] works great for me and I'm over 75. When I was on 10mg my total cholesterol was 164. After my GCA induced stroke I am on 40mg atorvastatin and total cholesterol is 108. [Stroke victims are usually put on 80mg atorvastatin[max dose]].

In my case 40mg is sufficient as verified by a new lipid test. [LDL=48, HDL=50, TG=45,

TOTAL=108]. [my prednisone dose presently 10mg pred]

[Horizon12]

Wow, where do you live? That is very impressive.

[painteratheart]

How did you manage starting on 30 mg and lowering to 20 mg within 2 weeks? That's a huge drop so quickly. Then to 10 as quickly. I started on 15 the end of February and am now at 9. Hasn't been too bad cause I have done so 1/2 mg at a time. My doctor advised reducing no more than 1 mg per month and only if I felt that I could handle that. So far, so good.

[yogabonnie]

Seems very fast. I started at 15 NOV 2017 and now.. 1 year later.. - 1 month at 8. (was at 7 but got costochondritis and upped to 8)... think that is a very fast taper. Deadslow nearly stop method on this forum seems to work well for most. ! I want to be off the prednisone but I dread a flare more than my desire to get off. ! It's all so tricky isn't it!

[Daisychain12 in reply to yogabonnie]

Yes it sure is. It’s a real dilemma xxx

[Telian]

Good advice has already been said but I would add seeing a Rheumie at least once to get the correct diagnosis is sensible, you shouldn't be left to your own devices plus it will give you the confidence you need. Once that's all in place you can be managed by your GP or in your case you!! Symptoms do mean more than blood results so listen to your body. I had regular blood tests initially, I have GCA and PMR, they're twice annually now unless I'm unwell my GP will ask for them. I always have them taken prior to a Rheumie appointment. ATB.

[Daisychain12 in reply to Telian]

You always impress me, the way you manage your condition xxx

[Telian in reply to Daisychain12]

Think I was gifted with patience like no other....sometimes good sometimes bad. xxx

[Daisychain12]

Oh gosh if I listened to my body I would be in despair. I have to constantly jolly it along with self talk. It seems terribly irresponsible to say that to a patient even one with a medical background. You deserve the same guidance and support as everyone else darling. Fight for that. Xxxx

[kulina]

Two years into my diagnosis and I see the Rheumy every 3 months and get blood work done too. How else would you know if you need to reduce?

[piglette in reply to kulina]

I just reduce when I am pain free and feel good. I have had four rheumies and only one was any good. Only one of them made any suggestions regarding reducing. I am not seeing any rheumies at all now. I only have PMR and not GCA though.