My hands hurt

[Myhandshurt]

After waiting five minths, the referral was accepted and I'm going to see Rheumatology for the first time tomorrow. What questions should I be asking? Still no definite diagnosis, yet my GP believes PMR. I've been on 20 prednisone since June and really want to get off.

[Hidden]

Morning,

Make a bullet point list of how things started, tests or bloods GP has carried out. Have you tried to reduce the Pred? As five months on 20mg is not the usual protocol.

Are you in the UK?

MrsN

[Myhandshurt in reply to Hidden]

I'm in NZ. It's been a long wait for the first appt. I was healthy and normal iprior to going on holiday in May to see family in the States. Upon return at end of May, my hands started swelling, neck and shoulder sore. I thought my sore hands were due to pulling/lifting suitcase and the sore neck due to sleeping sitting up on the long flight. Within two weeks the soreness went up my arms, my shoulder s, and then down my body. More muscle ache than joints. Within two days I could not move, roll over in bed, not dress myself or turn on shower. I was an absolute wreck. My GP retired at this time, so I saw a new GP, who prescribed Prednisone. Within three days I was mobile like magic. Long story short, I'm finally seeing the rheumatologist at hospital tomorrow.

[Hidden in reply to Myhandshurt]

That’s a good history, can you print that out to take it with you?

[Myhandshurt in reply to Hidden]

Yes. I've done a bullet point list in prep for the appt. Not sure what to expect and what to ask. I feel I'm walking in to the appt blind.

[Hidden in reply to Myhandshurt]

Are you going on your own?

I went to see a new Rheumatologist’s earlier this year & have quite a history, he asked me to tell him my story & l explained it came in two parts, the original diagnosis & why l was being re-referred.

I had the bullet points so l told my story in order & for that he was very grateful.

Don’t worry, he’ll ask questions & you have all your info to hand.

Good Luck 🍀

Let us know later how you get on.

MrsN

[Myhandshurt in reply to Hidden]

Thanks so much for your care and concern.

I have a very strong friend coming with me, to help clarify and remember what's said. The fatigue is ever present, due to side effects of Prednisone. Waking at 1.30 am until 3.30 or 4. And the cravings for food! OMG. I've gained a kg each month 😟. I'm 66 yrs and working full time. Hoping for an actual diagnosis and a treatment plan to taper the Prednisone. Not sure what other meds may be available.

[Hidden in reply to Myhandshurt]

Always good to have a friend to help remember everything, we can/do have Copy Letters from Consultant which is very helpful, mine make great reading 😉

Look forward to an update later.

MrsN

[PMRpro Ambassador]

It is all very well being able to suspect PMR and know that pred is the answer to the pain - but you then need to know about the next step, with or without a specialist opinion. Your GP should have had you reducing slowly and carefully since the first month, you should be well on the way to 10mg by now even if you haven't quite got there.

I hope your rheumy appointment is fruitful - all you need to do is provide the info and hope he listens. I'm glad you are taking a friend - I hope they take notes.

[Myhandshurt in reply to PMRpro]

Excellent meeting with the Consultant, who thoroughly explained my options. Start tapering tomorrow, even days 20, odd days 15. In two weeks time if all goes well, I drop again. I'll see the Rheumatology nurse in a monthly with new x-rays and bloods. At three months I see the Consultant again, having tapered as low as possible the week prior so he can see my true symptoms not marked by the Prednisone.

I was a bit concerned with a taper more than 1 mg. And dropping down every fortnight seems fast. Advice? I felt very comfortable with the Consultant.

I've changed GPs, to one that listens to me 😃.

[PMRpro Ambassador in reply to Myhandshurt]

He wants to see you without the putative PMR being managed with pred. I don't like that way of reducing personally - too confusing for the body - but to get to a lower dose for him to be able to get a clearer view it is probably OK and you will have to accept the downsides. Why does he want "new" x-rays?

[Myhandshurt in reply to PMRpro]

I appreciate your advice, thanks. Simple answer to x-rays - feet and hands were not xrayed previously. I'll see how I go at first meeting with rheumatology nurse. So far I'm ok. Very keen to get off the steroids. Early days 😁

[Peep44]

Hi. I'm in NZ too. Did you go private or public?

[Myhandshurt in reply to Peep44]

Public as I have no health insurance

[PoisonedinAus]

Prednisone is a shit drug. Yes it helps but causes so.many other side effects. .I was on 50mg for.a year.

[PMRpro Ambassador in reply to PoisonedinAus]

It is a life-saving drug for many - possibly even for you. You were on a very high dose for a very long time - but for most people that is not the case and you really cannot extrapolate your experience to others. For most of us the side effects are not impossible to live with since most can be managed or avoided when you know how.

[PoisonedinAus in reply to PMRpro]

Please.let me.know how to control side effects! With more drugs?

[PMRpro Ambassador in reply to PoisonedinAus]

Then post asking for help - but until you tell us what your side effects are, we can't make any suggestions. And no, not always with other medications.

[FoCoLady]

I use a nice CBD cream to relieve arthritus in my hands...also I have found that very low sugar intake (85% sugar free) and staying away from gluten (85% gluten free) have eased aches and pains.

[Myhandshurt in reply to FoCoLady]

I'm in New Zealand. What is a CBD cream?

[FoCoLady]

Oh, sorry! It is the NON-THC part of the cannabis/marijuana plant. It is used for various health modalities. It is legal here but maybe not there?