Update, grief over friend and tapering

[Mstiles]

Thank you so much everyone for your kind messages about my friend. She’s been moved to a rehab facility and is making some very slow progress. Can’t talk or breathe on her own yet.

Please excuse this long message!

I texted my rheumy yesterday about my stress and symptoms and my friend, and I asked to pause and slow the tapering for now.

She replied today:

“I’m sorry about your friend and the stress you’re going through. You can slow the prednisone taper. Hopefully we can make progress with lower prednisone dose over the next few months due to associated side effects “.

“You should be on 8 mg a day now. “

“You can reduce by 1mg every 6 weeks.”

I saw her 4 weeks ago when I had started tapering from 10 to 9. I started having trouble half way through. I stopped tapering in week 3 of the 4 week taper and went back to 10. I’ve been at 10 for the past week. So there’s a problem if she thinks I should be at 8 now. It’s only been a month since I saw her. That would be a reduction of 2mg in a month.

I asked her if I could taper by .5 instead of 1mg. She still wants me to taper by 1. mg, but extended the time period to 6 weeks.

She had wanted me to be at 5.mg when I see her again in the middle of May. That’s only 3 months from now to go from 10 where I am now to 5, seems impossible and stressful to me.

Maybe she isn’t being as rigid as I’m interpreting her but this is really stressing me out and I don’t need more stress!

Should I message her back that it’s only been a month since I saw her and that I couldn’t have gone down from 10 to 8 mg in that time? Or just let this go. Maybe she’s just so busy she doesn’t know it’s only been a month

Should I go back now to where I was in the taper, week three, without starting the taper all over again? I will have been back up to 10 for a week on Friday. I’m still having some pain but Tylenol usually, not always helps.

I don’t want to make this whole thing worse by causing unnecessary conflict but I don’t want to worry myself sick for three months until I see her again and I’m not where she wants me to be.

I’m having poor vision from a worsening cataract that’s also stressful, difficult to read or draw. My escapes.

Thanks forum friends. I’m grateful for this forum.

[Constance13]

Sorry about your friend. Hope she makes progress soon.

Many of us on here (including me) ignore our rheumies and go to our doctors for advice. I was told, by a professor of a rheumatology clinic, 5 years ago that my PMR was in remission and I should be off pred within 4 months. I was on 8mg at the time!!

I was still in pain and couldn't understand why. I was lucky enough to find this forum and got masses of advice.

During the next five years my ESR and CRP went up and down like a yo-yo. Even now they are not under the norm. Luckily I have a great doctor who allows me to "treat myself".

[Mstiles in reply to Constance13]

You are so lucky to have a doctor like this!

[DorsetLady PMRGCAuk volunteer]

Hi,

I should be a bit selective about what you read -

First paragraph agrees you can slow down taper.

Third paragraph states 1mg every 6 weeks - you could make that in 2 stages of 0.5mg at 3 weeks each. Perhaps you wouldn’t feel so pressurised that way - and it’s still achievable.

Second paragraph - what second paragraph ? Although it does only say “should be” not you are at 8mg.

Just do your own thing for now, and if you can’t get down exactly as she wants, well too bad.

You’re a person, not a machine.

[Mstiles in reply to DorsetLady]

I took the worst possible interpretation of course.

I’m having more pain and may have to call her. I’m still at 10mg having stopped tapering.

[HeronNS in reply to Mstiles]

If you have enough pred, why not just leave things be for a while and do what is best for you.

[DorsetLady PMRGCAuk volunteer in reply to Mstiles]

More pain - definitely no reduction. Too bad if it’s not to her liking. As Heron says you have to do what’s best for you - providing you have enough pills.

[Blearyeyed]

She has got her adding up wrong.

However , her attitude does seem to be more flexible by giving you 1 mg Taper per 6 weeks , this would also allow you to reduce in 0.5 mg steps during those weeks.

She knows the situation and seemed understanding of it but still hopeful of you attempting to get were she would like you to be if you can cope with it.

Her goal is 5 mg based on her incorrect figures when you clear this up at your next appointment she will realise that that was not achievable.

From what you have written she seems more hopeful of a Taper rather than expecting you to be there because she is aware of your Trauma Stress.

Most importantly , she didn't suggest that you need to keep tapering during this month when you would be better waiting until you feel more control of your feelings and symptoms. So you have flexibility to look after your other needs first before Tapering again and the added Stress you are feeling about Tapering you can actually put to one side , as long as you Relax with the idea that you Taper again when you are ready .

Keep a good Diary of when you do try to Taper and by how much .

Also keep a record of how your symptoms and Pain are even while not in a Taper this will prove to the Rheumatologist why you may have had slower progress.

Make sure you note you had started from 10 mg not 8 mg when you began .

You can then rest more about this too , as you can clear up this mistake in the numbers when you go to the appointment in May and discuss how you are doing.

She knows what's going on , she is prepared .

This is just on if those times when Life won't fit into the Timetable.

Now you just need to put aside the Taper worry and concentrate on making the whole you feel better and repair from your current Trauma so that you can be confident and calm to start a Taper when you are able to do it.

Good luck and take care xx

[Mstiles in reply to Blearyeyed]

Thank you Blearyeyed

I’m having more pain so I stopped tapering and went back to 10. This is where I was at our appointment a month ago. I may have to call her about it which I’m dreading.

[Blearyeyed in reply to Mstiles]

If some of the worry that is adding to your Tension and Pain is because you are not comfortable carrying on at your own pace from 10 mg without telling your Specialist you may feel more confident in yourself to call . You could tell her you were concerned that she had misheard that you were on 8 mg when you were on 10 , and that you were still feeling anxious about the fact that you may not be down to the dose she expects .

She will probably just repeat what was said before and tell you to slow down and that she hopes you get to a particular dose by May.

I would personally just leave it and decide in myself that I can only do what my body allows and need a Taper break for a few more weeks until I get over my current Trauma.

I'd then go at my own pace and by deciding to do so I would relax on my decision , that would help reduce the Tension and I'd probably get further than I would have done by thinking I had to reach certain doses.

I'd just choose to then tell the full story in May and work on it with them from there , even if I was still stuck on 10.

But you really do need to do what will make the next few months easier for you .

Take care and let us know how you go , hugs xx

[Mstiles in reply to Blearyeyed]

Thanks B, knowing me if I just carry on at my own pace I would be constantly worrying about what she will say at the next appointment. But I’m scared to talk to her, I’m chicken! I seem to be paralyzed to choose what to do. Too much other stress going on and I just want to crawl in bed and not deal with any of it. I’m feeling overwhelmed.

[Blearyeyed in reply to Mstiles]

I completely understand , you worry about what to do but feel a bit too stressed or a bit scared to stand your ground on the phone , but you feel you should phone , it can be a vicious circle.

Do you have an email for your Rheumatologist Secretary?

You could ring and just ask for that saying you need to send some info through to them.

Then you could choose to write a message to be passed on , reminding them of your current Trauma and that you wanted to remind them that you were at 10 mg at the last appointment not at 8. Add in that you will be trying to Taper as requested but have taken on board their advice to slow the drops down to each 6 weeks to help you cope with your current Trauma , closing you could say ..... you hope you will have managed to taper as much as possible by the next appointment but if you are still suffering with Tapering and Stress issues you will value any extra advice they can give you at your next appointment in .......

This eases off the pressure for you without having the stress of speaking on the phone . They will leave it until the next appointment , usually just asking the Secretary to send back an email saying they received your email and thank you for the update. They will know what point you are at so most importantly you can feel more relieved that you have got things out in the open , but you also know the pressure is taken off you .

Then you can taper when you are ready and concentrate more on trying to feel better in yourself in the next few weeks without this playing on your mind. The "Chicken " or " Fatigue" email strategy is one that I have used myself so you will be in good company !

Take care and try and give yourself a little love , you deserve it xxx

[Mstiles in reply to Blearyeyed]

Love your advice, thank you B, for understanding the dilemma. I can message my doctor through the company patient portal which is what I did. I guess it’s roured to a physicians assistant and then to the doctor. She then replied about slowing the taper.

Yes I don’t have “phone courage” to stand my ground right now.

Thank you for phrasing a great response. 💖

[PMRpro Ambassador]

If it were me I would do one of two things: I would email her with exactly what you have told us with the conclusion of "I will do my best but will not force anything" or I would keep notes in the meantime and when you get there just present her with the situation. Fait accompli.

But you say "she had wanted" - that has been supplanted, you are not expected to get from 10 to 5mg in that sort of time. Even if you wanted to it is unlikely you could. Stop worrying about it.

[Mstiles in reply to PMRpro]

Thanks PMRpro. I’m still deciding what to do. I’m having more pain, and more stress has been added on.

What, me worry? Ha, If only.

I obtained a medical cannibis card and am trying a mild tincture to help this. So far definately helping my sleep and a bit calming during the day at this low dose.

I’m still at 10mg where I was a month ago when I saw her. I went back to 10 halfway through when I started having symptoms.

[Jackoh]

Agree with everyone else. Forget the timetable imposed and just do your best in the tapering field. You’re starting at 10 mg . If your body didn’t tolerate 1 mg drop do your .5 mg drop. Do that over your 3 week period ( I.e1mg every 6 weeks) and move on when you can to your next .5mg drop. Perhaps record how you are each day pain wise on scale of 1-10 to present to her to show that you have taken this seriously. You can only do what your body allows you to do . Unfortunately your body not your Rheumatologist decides on the rate you can reduce. I find if I don’t feel confident about reducing it often doesn’t work and the last thing you want to do is to yo yo the dose that makes matters worse.

Glad that there is some improvement with your friend. X

[Mstiles in reply to Jackoh]

Thank you for the kind words about my friend Jackoh.

I’m getting more and more behind what she wanted as I’m still at 10mg where I was a month ago when I saw her. I started tapering to 9 and was halfway through the taper when I started having pain and so went back to 10. I’m trying to decide what to do now.

[Jackoh]

If you’re ok on 10mg you could try going down by a half mg on one of the tapering plans, they are posted separately on here. At least you will be moving in the right direction. I think no matter what you do you won’t be where your rheumy wants you to be when you next see her. You can’t do this with brute force and positivity to push through at all costs. It doesn’t work that way. It also causes stress if you feel you’ve got to get to a certain point at a certain time. You can only do your best and slowly reduce when you can. If that doesn’t please her- then it doesn’t please her. Just do what your body and your PMR will allow you to do, otherwise you could end up much higher. When do you see her next? As suggested by PMRpro you could email her and pre warn her that this is what you’re doing and why. All the best xx

[Mstiles in reply to Jackoh]

Thanks Jackoh

I see her in May again.

No way I can be at 5. By then. I’m still at 10. And still have pain.

[PMRpro Ambassador in reply to Mstiles]

Then you shouldn't be heading for 5 should you? At what dose ARE you (relatively) pain-free?

[Mstiles in reply to PMRpro]

At 10 where I was a month ago when I saw the rheumy. Then I started tapering soon after and ran into trouble the third week of the 5 week taper.

I went back to 10 and have been on it for 3 weeks now.

[PMRpro Ambassador in reply to Mstiles]

Then that is where you need to be for now. There are some very good rheumies who tell patients not to try to reduce in winter or when under stress.