Bad day

[polymy]

I am in such a mess this morning. Could hardly use my hands and such awful pain in my shoulders upper arms lower back and hips. Feet and toes were painful too. Had some visual disturbance which has now gone. Have had pmr for two years. Am on pred 5mg and have been doing ok until a week ago. So fed up and feeling sick as well. The rheumy dept at my hospital does not inspire me with confidence. If I ring the helpline it takes them two days to get back to me and sometimes they don't. I have never messed with my pred dose by myself but am seriously considering going up to 7.5 mg without medical say so just to relieve the pain. It's now midday and it has improved a bit since this morning but I can only rest as everything causes me pain. Thank you for listening. I am so low.

[SusyTe]

Oh you poor thing, Poly! I think I would also be tempted to up my dose - you sound so low and in so much pain, bless you. Sending you gentle virtual hugs. xxxxx

[polymy in reply to SusyTe]

Thank you Suzy. It's nice to know others understand. Liz.

[SusyTe in reply to polymy]

You are not alone, Liz - hang in there. xx

[polymy in reply to SusyTe]

Thanks Suzy.

[Hidden]

Hi polymy

I'm so sorry you feel so awful 💐do you ever have your blood taken to check your CRP or ESR levels?

Maybe, if you have a sleep this afternoon, then ring the Unit & tell them how awful you feel. If you've never increased your own dose before, I would recommend you get the go ahead from the Team first as most of us who do tweak our Meds have had PMR a long time & have our Consultants say so to do it.

To go from 5mg to 7.5mg is a 50% increase, how long have you been on 5mg?

I do hope you feel better soon

Mrs N x

[polymy in reply to Hidden]

Have been on 5mg for 6 weeks. I have been told to reduce by. 1mg a month and was intending to start on 4 mg next week. Have just had a blood test this morning but unfortunately it's only liver and kidney function and not inflammatory markers. I think you are right and I will ring the unit for help. Thank you for your wise words. Liz.

[Hidden in reply to polymy]

Ah that's a pity but not to worry, I think a bit of advice is called for & they may request inflammatory markers.

Also, once this episode has passed & you think about reducing again, from 5mg I'd be inclined to only drop by 0.5mg each time because as a % 5mg to 4mg is 20% & it's too big a drop, l'm going down by 0.5mg & have just gone from 7mg to 6.5mg so slowly goes it from 5mg. Drs & Consultants are much happier once we reach that magic 5mg l think mine was going to give me a Gold Star ⭐️

I think talking it through with someone who understands helps & maybe even an OTC painkiller might not go amiss with a nice cup of tea & a lie on the bed with some nice music, that's what I'm doing now, between packing my husbands suitcase!

Take Care & let us know how you get on

Mrs N 🌺

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Do hope you're packing yours as well😉 Or is there something you're not telling us!

Take care,

[Hidden in reply to DorsetLady]

I'm doing mine tomorrow, see what I can sneak in Terry's case 😂 I'm happier once he's sorted! 🚢

We have a deal, he pays, I pack!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Sounds good to me! Enjoy yourselves.

[polymy in reply to Hidden]

Hi Mrs N. have rung the unit and asked them to return my call. Have taken both tramadol and paracetamol and a couple of ibuprofen after lunch. Not quite as bad now but my wrists and fingers are very sore. Is it normal for hands and feet to be involved in pmr? Thanks again everyone. X

[Hidden in reply to polymy]

Hi, no not really heard anyone say anything about hands & feet.

Be careful with combining too many pain killers as that combination may make you feel unwell.

I see you have an appointment with your GP on Friday so l hope you can get some answers as there maybe something else going on & as PMRpro says if you have any more headaches or visual disturbances you need checking out for GCA.

Let us know how you get on.

Best Wishes 🌺

[polymy in reply to Hidden]

Will let you know. Yes I do wonder about gca but am not sure whether the pain is constant or how severe. Maybe someone can tell me??

[HeronNS in reply to polymy]

Polymy, a number of people have posted here and on the Patient forum about pain in hands and feet. I have it from time to time, although I've tended to blame it on osteoarthritis, but now I'm beginning to wonder. If I remember correctly the others posting were also, as you and I are, at a relatively low dose.

Resting sounds like the right thing to do. I went to a program at my local library yesterday where we learned about self-compassion, and strategies to help us look after our own psychological wellbeing. The presenter's guided meditations, or visualizations, put more than one of us into a state of, not exactly sleep, suspended animation??? Wonderful experience. Look after yourself!

[polymy in reply to HeronNS]

Thank you for that. Good to know there is such help around. Liz.

[Rokerman in reply to polymy]

Hi Polymy - yes! I can confirm my own symptoms after reducing from 20mg a year ago to 7mg currently. Most mornings my hands/fingers are the only bits that hurt - can't make a clenched fist/comfortably hold a pen or steering-wheel until about 10:30-11:00am. Very annoying as I'm still working......

Hope things improve for you soon

[polymy in reply to Rokerman]

That is reassuring. My hands are the worst thing. Can't drive until dinner time. Have bought a water boiler as often can't lift the kettle to get a hot drink. Often my feet are too sore to walk far. This is a lovely forum. So pleased I found you. XX

[Rokerman in reply to polymy]

Sore feet has been one thing I haven't had - so far.......!

However - filling a kettle one-handed has been a problem for some time - pretty feeble for a bloke(!) - getting much better in the last few weeks tho'. xx

[PMRpro Ambassador in reply to Rokerman]

I have a pull-out tap. I take the tap to the kettle...

[dinhal in reply to polymy]

Hi,

I can relate and it is really really awful.

I have been on 12.5 prednisone for a month after complaining to my dr about how I felt for a long time. I finally found this through mayo clinic

And yes, my hands and wrists and shoulders hurt terribly.

When I started the prednisone it really helped.

Good luck.

[jes46 in reply to polymy]

I think you might want to go more slowly, more like .5 less per month. I got down to 2 mg but had another flare so now am back on 5mg where i plan to stay for at least 1 month as I'm feeling better. Hope u do too!

[PMRpro Ambassador]

You really sound as if you are having a flare due to an increase in disease activity so it is likely you need a bit more.

But the visual disturbance and nausea bit does worry me. If it happens again please don't ignore it as GCA can happen at any time - even after a couple of years. I don't know where you live but in the Yorkshire Ambulance Service the paramedics have been trained to recognise possible GCA and take patients to hospital if there is any ground to suspect it.

[polymy in reply to PMRpro]

I must admit the nausea headache and eye disturbance worries me too but it isn't constant. Only in the morning. I think the cpr and esr are probably sky high again. My gp is a gem and will be helpful on Fri. Thanks again.

[PMRpro Ambassador in reply to polymy]

One of the things said about the eye disturbances is "double vision, especially in the morning on waking or after a nap during the daytime"

[Marlenec]

So sorry you are in such pain, and also so low. I cannot offer you any medical help like so many on this site but please take their advice. Keep believing you will get there and you will. Hope you soon feel better.

Marlene x

[polymy in reply to Marlenec]

Thank our Marlene. It helps to know that you are not alone. X

[steffiegirl]

Poly........Oh blimey, your poor thing. Take comfort in the knowledge that there's people out there (meaning the internet) like all us that have replied. There's nothing worse than feeling ill and being in pain and thinking you're the only one.

If I were you I would up my pred anyway. It won't hurt. But you really need medical attention and NOW. Are you in the States ?

What is wrong with you anyway ?......I mean what was your diagnosis last time you saw a doctor ?

Steffie

[polymy in reply to steffiegirl]

Hi Stefanie. I am in the U.K. And live alone. I was first diagnosed with pmr but when it flared every time th e steroids reduced my gp sent me to rheumatology. They diagnosed ? Polymyalgic onset RA. They scanned my hands and found no sign of RA only OA. Back to pmr. Things are complicated as I also have a degree of heart failure and have a pacemaker/defibrillator in situ. Also have the osteoarthritis. I'm not quite so bad this morning and will see my gp at 9 tomorrow morning. Thank you for your support. Liz

[Janll]

I've been reading all the replies and thinking what a caring community this is. I'm wondering, polymy, whether you have changed anything from your ordinary diet or supplements. I read on this forum yesterday that I shouldn't be taking Vit. D at the same time as my pred. I've been struggling with continued pain even while taking the steroids. Well, I stopped taking the Vit D yesterday morning and my day was very different. Even GOOD supplements can mix badly with certain drugs. This may not be your case at all but then again, I thought I was going fine until I wasn't. I hope your appointment on Friday is extremely helpful.

Bless you today, Jan x

[Rokerman in reply to Janll]

Jan - Vit D ? I missed that post - D'you mean not to take Vit D at the same time of day as Pred (must admit I shovel all mine in just to get it done/so I don't forget!), tho' I delay calcium by a couple of hours.

Best Wishes

[Janll in reply to Rokerman]

Yes, someone mentioned it yesterday and I have been struggling quite a long time. I started adding Vit D several months ago as it helps with 'the blues', and like you I just took all the meds and supplements excluding Calcium, all at one time in the morning. Vit D evidently decreases the effectiveness of steroids if taken together. Shame I had to learn this after months of struggling but better late than never. 😏

[Rokerman in reply to Janll]

Well - that's a surprise to me! Good job we've got this forum, eh?!

Best Wishes

[PMRpro Ambassador in reply to Janll]

It's a surprise to me too! I can't find anything about vit D interfering with steroids and vice versa, just the calcium thing and most of us take a combined supplement anyway.

I wonder if there is something in the supplement you are using that is causing the problem?

[Janll in reply to PMRpro]

I read about it yesterday on the forum so acted upon it. The Vit D I take is on its own. I'm not taking any other supplements with my morning cocktail of Pred and Omeprozole, ( taking Thyroxine 30 minutes before any food or meds) I will continue this way for awhile and see if I improve. My body isn't too happy at the moment still. Are there any foods that disagree with steroids? Perhaps I will ask the forum in general about foods.

[PMRpro Ambassador in reply to Janll]

Everyone is different as I keep saying - but no, I can't think of any with a reputation.

[Jackoh]

Hard when you live on your own and have PMR with all the add ons. Do hope you are feeling a little better today. Let us know how you get on on Friday .

[polymy in reply to Jackoh]

Hi Jacko. Yes it's not easy when you are alone. I'm feeling a little bit better today. The pain is still there but maybe it will improve as the day goes on. Thank you for caring. Liz.