Would you class this scenario as effectively managed?

[Sunshinereturns]

Hi everyone, I always get good advice on here and my rheumatology nurse, whose number I was so delighted to get, is not returning my calls.

I have RA and pallendromic rheumatism and this ruined my year last year with short burst near constant episodes of intense pain. I got a new rheumatologist who upped me to top dose methotrexate plus etoricoxib and amitripylene for pain management.

A couple of months on I am pain-free and I am grateful for this every day. However a stiffness in all the fingers of both hands has developed as a constant, starting late afternoon, awful overnight and wears off after a bit in the morning.

Compared to what I was like, this is nothing. But I’m worried that this is progressive and I should be asking for additional medication to stop it getting worse. The pallendromic rheumatism is now controlled, thank god. But the RA has taken root in my hands and I don’t want to ignore this and let it get worse if medication could present this.

I’m wondering if a) I should just be grateful I’m no longer in pain and accept the stiffness (I can’t make a fist, sometimes nothing like it) as part of the deal or b) try somehow to get back to the rheumatologist to get further meds to prevent this worsening.

I’m aware too a lot of people reading this stiff fingers is the least of their worries. I just want to protect my future as much as possible. Many thanks.

[Connie49]

I too had quite severe finger problems as a result of RA and OA, so my Rheumatologist arranged for me to see a specialist RA Occupational Therapist. She gave me specific hand exercises that were hugely beneficial in terms of finger mobility and pain control. You will find similar exercises on Versus Arthritis’ website that are simple to do, and hopefully effective. Best wishes.

[sylvi]

I can no longer make a fist on my right hand due to the swelling and i doubt there is anything you can do about it. Sorry to say that. xxxxx

[Boxerlady]

I think that you should report it to your team and ask if there's anything that can be done rather than just assuming that you need to accept it. I've found that my team have always reacted to my concerns and tried to improve things even though my problems seem small in comparison to those others have to contend with; you shouldn't be hesitant to push for the best YOU can be rather than comparing yourself to others. The RA occupational therapist helped me with exercises, compression gloves and wrist braces but my nurses and consultant have also continued to tweak my medication to try to improve things. Hopefully they would be as helpful to all their patients but I think that it helps that I'm still working and my work requires good hand dexterity and I suspect that they're encouraged to enable people to keep working so emphasising that aspect could help...

[Chris_O]

Hi. I’ve had RA for sometime now and some of the first indications were stiff joints. I had a really bad time with my RH arm ( ruptured tendon ) and for some time was unable to use my RH hand ( couldn’t grasp things like toothbrush etc), but after physio and various splints it’s nearly back to normal. My LH hand is unable to make a fist, but I’ve found that after doing exercise the finger joints ease up and definitely improve.

Chris_0

[----54]

I agree that it’s best to keep your providers informed and also let them know if other symptoms arise. (I know of someone whose stiff hands were dismissed for quite sometime before they sought a second opinion and ultimately had labs that pointed to a form of scleroderma.) Everyone is different, but I also think that if it’s important to you, it’s worth the fight and time to regain flexibility and strength all while listening to your body and being gentle but persistent. As someone said, there are stretches we can do. Take care!

[oldtimer2]

Please keep your rheumatology team informed - they need to know what's happening, or they will think that you're fine. It does suggest that some inflammation is happening in your hands. An ultra-sound might be the best way of finding out about that, if your blood tests are not showing any inflammation signs?

[nomoreheels]

I understand your concerns, because I have the same problem. Mine is advanced OA, no cartilage left in any of my DIP joints, & have been offered replacements when the pain in such I can't cope any more. I'm getting near to that point so really should do something about it as the waiting list is sure to be long. As I say though with mine it's the joint nearest the nail, & sometimes my PIP joints but not as damaged. If your problem is in your PIP joints (or mid bone) or MCP joints (nearest wrist), then it needs reporting.

I'm also on MTX, etoricoxib & amitriptyline so we have that commonality, I’m also taking other pain relief specifically for OA.

I was referred to Occupational Therapy who gave me helpful hand exercises & wrist splints which weren't much use at the time but were when I had a return of carpal tunnel.

Hot wax helps, as does keeping my hands warm & compression gloves. Pernaton gel is safe to use with NSAIDs as it's made from green lipped mussel not anti inflammatories. I do use diclofenac gel 2.32% but that was ok'd by my Rheumy as that is an anti inflammatory, we're usually advised not to use that in addition to oral NSAIDs. These are only temporary measures though but may help ease your pain all the same.

[Kazwilks]

Hi Sun I know everyone reacts differently to medication but methotrexate did not work for me. I was in constant pain still having loads of flare ups while taking methotrexate. I now am on Benepali injections and have been for 3yrs, it's like I've never had RA, I do get the odd niggle to remind me it's still there, unfortunately while going through the rigmarole of been prescribed other meds to add with methotrexate to see if any helped my left hand is now badly damaged. I can't straighten my fingers on my left hand. It's entirely your call but in personal experience taking Dmards does not stop the stiffness. I wish I could of been able to have biological drugs straight away as I honestly feel my left hand could of been saved if this was the case. I know it's down to cost and probably worse now NHS is in dire straights but if I were you I would push for biological drugs. I now lead a very normal life, apart from my bladder but that's a different matter lol I wish you well and hope the stiffness does not progress

[Sunshinereturns]

This is so helpful, thank you

[Leics]

If it was me I would keep on at rheumatology until they assess you properly. If that means an appointment to occupational health that’s their call. Don’t put up with something that you know isn’t right. We are all different but if my hands weren’t working properly I would seek advice at the minimum from either your GP but probably more likely rheumatology.

[Paisley58]

For what it's worth I think contact your Rheumy team and see what they can do. I think seeing a hand therapist is useful. I can't make a first, get trigger finger, swelling and stiffness. However, I do find doing the exercises a help, even if it's just for a few hours, I'm grateful. Also find resting splints useful with a heat pad in the evenings helps with the pain.Wishing you all the best 🤞🙏

[Deeb1764]

my consult says do the various hand exercises to strengthen and now doing shoulder ones. Plus I wear compression gloves at night and this has been helping too.