Thanks to the advice and information I got here I have now transferred to the rheumatology dept of my local hospital. I saw a young lady doctor who seems to understand PMR. She was very grateful for all the printouts of my blood tests and scans which I had printed and brought with me from the Private sector. She has told me to stay off MTX for now. She is prescribing pred for the moment but will do another blood test in 4 eeeks and see me again then. She really listened. She examined me - I have arthritis in my knees and hips but as she says, at my age, and at my level of mobility and fitness, that is not a problem. I also have access to the Nurse Helpline and the OT and physio as part of it. I am now on 6 mg a day. I have noticed since I went down from 7mg I wake up in the morning with very stiff and painful hands! They get better as the day goes on so I guess it is the PMR. I have also, following what I read on here, started a low carb diet to see if I can prevent the blood sugars from rising to the point of diabetes. So I feel a bit more in control. Thank to everyone on this site!
Update: Thanks to the advice and information I got... - PMRGCAuk
Update
Thank you for your post, this is reassuring to me as a newbie. I have been let down by a GP this morning and feel there is more help and common sense on this site. I feel like a small boat that is being blown and tossed by the wind in a very large sea.
I remember feeling just like that 2 years ago when I was first diagnosed with GCA and LVV. You will feel better. There are many ups and downs but generally you will feel a bit more relaxed about everything. Hang on in there and learn to ride the bad times. Take care.
Thats good, you got a quick enough referral. Dont mind me asking, how did you get Actemra for PMR? is it not usually only GCA? Hope you dont mind me asking. I also am in Dublin and have to start with a new Rheumy next month as my other one retired. If i didnt need knee hyaluronic injections i dont think id bother as i dont see the point. Good luck with your new team.
Glad to know that there is someone else in Dublin with PMR on this site! I was put on Actemera by the private Consultant I saw. I knew nothing about it. When I started reducing the steroids, the pain returned to some extent, so he decided that the Actemera was not working. Then he put me on Methotrexate which I found very hard on my stomach. When I told him about that, he prescribed Kytril which is an anti-nausea medication, but I had really sever diarrhoea on the MTX. I had to stop it when I was having a procedure under anaesthetic, and I felt a lot better, so the new doctor suggested that I not take it as some people are very sensitive to MTX.
Its a minefield really!! Side effects are hard to deal with, you end up going round in circles. My brother attends James's hospital and only gets great treatment. They really look after him. Mine is private, like you were doing and sometimes i want to just scream at them!! I suppose its getting the right medic at the right time. Its good you might be on a better path now that will help you.
I really think it is worth asking the GP to refer you to the hospital clinic. St James's seems to be brilliant. I would have liked to go there but I was told by them to go to Beaumont as I live on that side. Having been to the clinic, I am very impressed. I had to wait for the appointment but it was worth it.
Ooh, im not over that side eithet. I have been going to PO'C in Beaumount, he has referred me to a new person in the Bons as he retired. I havent met her yet. Natasha Jordan. Im a bit of a mess at the moment so afraid to rock the boat, back surgery that osteoporosis needs to be stabilised for too, honestly dont know how i ended up in this mess!! You dont know that rheumy do you by any chance? I believe we are vert badly off for rheumies here now!! My first rheumy 8 years ago was a woman in the bons, a disaster.
I don't know her. I was in Paul O Connell's public clinic years ago for arthritis in my hands, and then osteoporosis after cancer treatment. He discharged me shortly after that. Don't know why! Since then I haven't seen a rheumatologist until now.
Ah right! Best of luck. Thank you for getting back to me. Hope you get some decent pain relief.
I hope you get some help from the new lady! Good luck!
Good to hear about new Rheumy…
Hands could be Carpal Tunnel Syndrome - often accompanies PMR.
Hopefully Bcol will respond, he had/hand similar issues.
Thank you! That could be it all right! I keep getting pins and needles in my hands and the pain in the morning is quite disabling.
This might give bit more info -
I take it you are in Ireland, not NI? That is an impressively speedy referral and you seem to have landed with a good one.
Which fingers are affected with the tingling in your hands?
In the left hand all the fingers are painful and stiff and the outside of the wrist is painful,. They loosen up as the day goes on, especially if I go for a walk and swing my arms. The pain in the right hand is in the thumb joint just under the thumb. This morning having read the HSE website about Carpal Tunnel Syndrome, that you kindly sent me the link to, I took some paracetamol and that has helped a lot. The fingers still hurt but I can move them and close my fist. So thank you!
The left hand sounds more than CTS, it usually affects from thumb to middle finger. The others are supplied by the ulnar nerve, I'd check with the GP.
I was told I had carpal tunnel many years ago. In those days I think some gps guessed and got away with it. Pain went right up to the shoulders, but doctor said it started in the wrist. Think I saw a consultant, injections, possibly steroids, it eventually went. This is a bit vague, as it was long before I had my RA diagnosis from QA Rheumatology (brilliant team). I never got to see the RA team until the RA flared up, any joint that might move! On metho, now and good care, care handed back to gp, bad move, then at my request, sorted by QA, the proper experts in this area. If on metho trexate you need regular blood tests , gp decided they knew better, 5 month gap while I begged for a test - so no they didn't.
Actually, I just realised that the index finer in my right hand is also affected.
How wonderful you have found a compassionate doctor. " She listened." It's so simple, so important, and not that common. This site is a lifesaver. Be kind to yourself and taper slowly.💞
As I reduced pred my osteoarthritis, especially in my hands, became a lot worse. I was told that pred does help OA (though it is never a drug prescribed for it), & that the pred was masking the progression of the OA. The OA has continued to get worse as I taper, but also as I get older, of course! The stiffness & pain of OA in 5hegands is usually felt more first thing in the morning, then wears off. So, it could be OA, & not PMR?? Just a thought!
Good morning FV. Coincidentally I read this post and DL's comments just as I was getting ready to see the doctor about my CTS and hands/wrists.
My CTS really began to show when I had got down to 5.0mg of Pred, however this was in the middle of the pandemic, so surgery was not any sort of option at that time. CTS can be caused by inflammation which puts pressure on the nerve in the Carpal Tunnel, and it often can/does accompany PMR and other immune diseases, so after a conversation/chat with my doc we decided that I would go back up to 10.0mg and then see what happened. It worked and at that level of Pred disappeared altogether. It didn't reappear until I had got down to 2.5mg and as I was tapering on 0.5mg every five weeks I had many weeks/months without problems. I've now been on the waiting list for surgery on both wrists/hands for a few months.
You may find wearing a splint at night-time helps and mine is now at the stage where I often have to wear them during the day as well. You may also find that particular activities trigger it off/make it worse and when you identify these you can make life a little easier.
If you can get a doctor's appointment, then there are various tests they can do, and they may suggest a steroid injection in the wrist to try and reduce any inflammation around the nerve. Think mine is long past that stage.
I saw the doc today as I have been getting extra pain across my right hand, palm and fingers which doesn't respond to pain killers, which really knocks out it being my OA, but may be a sign that it's PMR starting to reappear or even RA or one of the other arthritis's. I'm having full bloods done tomorrow to see if anything "interesting" shows up and then we will decide where to go from there.
This will be my first bloods for over four years without any Pred input. Four and bit weeks off it, which as the doc remarked this morning would possibly fit in very well with when the extra problems on my hand started.
First F2F with these doctors and very impressed with this morning's appointment, rang yesterday afternoon and appointment at 10:00 this morning.
Thank you for responding. Very interesting and useful information. I will pursue this with my GP immediately, based on all the contributions here and I will look out a splint. Last night that pain in my hands had spread up to both shoulders. This morning I woke up with no pain or stiffness in the hands but pain in the right shoulder. So confusing but it sounds as if the PMR does not like my being on 6 mg of pred! The mystery goes on!
Pain from mine can also travel up my arms, it's a weird feeling. Also lose almost all feeling in fingertips and strength in fingers.
Update on Rheumatologist Appointment
Update to anyone interested
Immunosuppressed
Update: from Cleveland Clinic
Update re / hospital / PET scan, has any one else been in this situation.... and what would you do
