Advice please

[Cyclegirl54]

Hi, I am now on week two of 6 mg, using Dorset Lady’s taper schedule. Thank you, it’s a great approach for me. I have acquired painful elbow joints recently. It’s the push /pull motion that aggravates (and probably all other movements too!) and it is really sore on awakening. My sore thumb earlier in the year is ‘oesto arthritis in the Carpometacarpal joint ‘ , I hope my elbows aren’t going the same way! I’m just wondering whether to speak to my Gp or just apply the Volterol!

Hope everyone is keeping safe and not going too stir crazy🌸🌸

[Grammy80]

I'm a GCA-er but I am on Dorset Lady's taper also, week two going from 8mg to 6mg because I couldn't get 1mg in the states. It has helped me because I just couldn't seem to get past 8 ...and I'm feeling good.

I do feel aches and pains but...I will be 80 in just a few months so...if they bother me too much I take a Tylenol.

Probably one of the other gals with PMR can be more specific....I just thought I would wish you well since we are sharing the same taper....💖

[Cyclegirl54 in reply to Grammy80]

Hi Grammy, I’m a GCA and PMR’r ( originally diagnosed) although at a last rheumy appointment in March, I’m now more Fibromyalgia due to lack of inflammatory markers ( at the start and now!) I got prescribed Amytrptaline which has improved my sleep no end! I’m just glad I haven’t had a pounding head for some time !

My arms do ache if I overdo things and I have acquired painful elbows. At least I can ignore the Hoover! 🌸

[PMRpro Ambassador in reply to Cyclegirl54]

"I’m now more Fibromyalgia due to lack of inflammatory markers ( at the start and now!)"

Lack of inflammatory markers does not translate to the symptoms being fibro instead of PMR. 20% of PMR cases don't have markers outside normal range - which doesn't mean that they aren't raised for them - but the symptoms respond to pred. And THAT is the differentiating factor ...

[Cyclegirl54 in reply to PMRpro]

Yes, I totally agree with you. It came as quite a surprise. The rheumy grudgingly said that I was to get in touch if I experienced any flare ups and not just ditch the pred in a week! It wasn’t my usual rheumy . Anyways , I’ve just continued with the DL taper and apart from the sore thumb and now the dodgy elbow, things have been ok. Hope you’re doing ok yourself 🌸

[Grammy80 in reply to Cyclegirl54]

There you go....there is blessing somewhere in almost everything!!

[Heron82 in reply to Grammy80]

The rheumy I see is now dilberating a fibromyalgia and trigeminal nerve pain diagnosis and has prescribed pregabalin. However after 2 weeks I am still waking at 4 with temple headaches and still wake up with muscle pain and stiffness in my legs and when I walk there is a lot of resistance and I walk much more slowly than I used to. The pred of a morning resolves the headache. Dose reduction from 22.5mg to 20 mg resulted in recurrence of PMR symptoms so have reduced to 21mg instead and will reduce in 1 mg amounts from now onwards. Keeping fit though by walking over 10,000 each day. Sitting makes the stiffness worse.

[PMRpro Ambassador in reply to Heron82]

I'd ask him to account for the pain being relieved by pred if he is suggesting fibro.

[Heron82 in reply to PMRpro]

Yep, I've already done this. Been told I can ask questions but not question him.

[tangocharlie in reply to Heron82]

Wtf? How dare they! get a different rheumy!

[PMRpro Ambassador in reply to Heron82]

I'm with tangocharlie.

"But I thought fibromyalgia is a neurological problem, not an inflammatory one so wouldn't respond to pred ..." Is a question and questioning the situation not him personally. But utterly arrogant - modern emphasis is on the importance of shared management.

[Jackoh in reply to Heron82]

😱😱😡x

[Constance13 in reply to Heron82]

What?? What sort of doctor is he? Ooooh I could spit when I hear this sort of thing!🤨

[Heron82 in reply to Constance13]

I trust him and can't face the rigmarole of finding a new consultant.

[Hildalew in reply to Grammy80]

Hi Grammy, (feels slightly odd calling you Grammy - I passed the 80 milestone in March) You mention that you can't get Pred in 1 mg form and so are tapering in 2mg steps.

From everything I have read on here, the next two steps may be very difficult.

I am guessing that your current 'pills' are capsules which you can't split. Is there someone around who could help you do some more research for 1mg tablets in the states?

Just in case the PMR pains return - Tylenol and other 'standard' painkillers won't be able to give you any relief. - Only Pred can relieve PMR pain.

[PMRpro Ambassador in reply to Hildalew]

Grammy is on Medrol, methyl prednisolone. The smallest tablet made is 2mg.

[Hildalew in reply to PMRpro]

Oh thank you. Another foot-in-mouth classic.

And another 'blessing' (that I can get 1mg Pred) to add to my list.

[PMRpro Ambassador in reply to Hildalew]

I was on Medrol for some months - horrible experience!!!!!

[Grammy80 in reply to PMRpro]

Yes...and I can't even get the 2mg! No problem splitting the 4 however...so far so good on DL's tapering plan. xo

[PMRpro Ambassador in reply to Grammy80]

Ooops - forgot that! Or thought you'd finally managed ...

[Grammy80 in reply to PMRpro]

No oops! necessary....you recall so much about everyone~! xo💖

[Grammy80 in reply to Hildalew]

Thanks, Hildalew~! You can call me Marilyn.....I appreciate your expressing concern. I'm a GCA-er and prednisone just didn't work for me...but the prednisolone did. I agree...I found out the hard way that a 2mg drop is too much, I had a flare that cost my some clarity in my right eye. Thanks to the folks on this forum I'm tapering slower and over a longer period of time.

I don't know how you feel but at my age, my goal is to maximize my days...and feel as good as I can. I'm not pushing to be on zero mg. If that is what happens fine...but being cheerful and joyful ...not hurting...is my goal. I want to be able to smile~!! Most all of us do....I'm so thankful for all these folks....what a different journey it would have been. I take the Forum's common sense to my doctors and they listen.....💖

[Wraysbury in reply to Grammy80]

Hi is Dorset lady’s reduction different from DSNS method please

[Grammy80 in reply to Wraysbury]

I'm not sure...but she will see this and let you know~!!!

[PMRpro Ambassador in reply to Wraysbury]

Yes. All the different methods are here:

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

Hi,

Could try the volterol or Flexiseq (jinacs swears by it, although it takes time to work). Or even paracetamol (okay with Pred) for a few days.

If no better, I might be inclined to put a halt on taper for a few weeks, then try again. By then you hopefully should have worked out whether PMR or non-PMR.

Take care.

[Cyclegirl54 in reply to DorsetLady]

Hi DL,

Sound advice as usual- thank you.

Hope all ok in your neck of the woods🌸

[DorsetLady PMRGCAuk volunteer in reply to Cyclegirl54]

Yes thanks.

Stayed with son & family last weekend for Father’s Day in “my bubble”.

Managed to get a walk along Preston beach wall this morning - but didn’t stay about- too many people! Have to stick to village I think.

[Cyclegirl54 in reply to DorsetLady]

Yes, I’ve been staying local and probably will continue to do so as I feel very worried about mingling ! 🌸🌸

[SnazzyD]

So you mean actually in the joint or very close just below the knobbly bits?

[Cyclegirl54 in reply to SnazzyD]

Sort of in between the two uppermost knobbles and above the third when my arm is palm down, if that makes sense.🌸

[SnazzyD in reply to Cyclegirl54]

Nope, don’t understand.

[Cyclegirl54 in reply to SnazzyD]

😀I never am good at describing awkward pain locations! In between the knobbles and the area around!

[Constance13 in reply to Cyclegirl54]

😂😂😂

[SnazzyD in reply to Cyclegirl54]

You mean where the bones join together inside? Blind leading the blind here.

[Bridge31]

I’m on the last week of 6 and I’ve noticed the same thing in my arms and elbows but it’s not painful enough to put me off starting on 5.5 next week. Lifting even fairly light objects it’s noticeable and hanging out and fetching in the washing I’m thinking to myself “ how can that make my arms ache so much ? “ but it does.

[PMRpro Ambassador in reply to Bridge31]

If you are aching with 6mg I would delay the next 1/2mg drop for a few weeks and see if it settles down. If 6mg is barely enough - 5,5mg almost certainly won't be at present.