End of my tether…..

[Sjhoney]

Hi all,

I’m feeling a bit desperate and frustrated at the moment. I started biologics about 5wks ago and after a sinus infection I’m feeling ok.

The thing is I’m getting really bad pain in my shoulders, upper arms and hands. It’s much worse at night so I’m not getting a proper nights sleep. I’ve spoken to the rheumy nurse, then the gp then back to rheumy nurse. Nothing I take is helping and I’m left wondering what on earth to do next.

Has anyone experienced this pain, and if so what did you do about it, what helped etc?

Thanks, Sarah x

[wishbone]

I've had the same sort of thing off and on for several years....currently on! In my case I think it's RA rather than meds is the problem as it's got worse since I stopped taking Baricitinib 4 weeks ago. It's a dreadful condition as you've unfortunately found out. My pain and stiffness is worse after getting up in the mornings. Resting my arms does help, but that's difficult to do for any length of time for obvious reasons. Besides the usual pain relief etc, a prescription gel called Fenbid Forte Ibuprofen does help my shoulders a bit. Putting the slightest pressure on them is painful hence trying to get a decent night's sleep is nigh on impossible. When sitting in my armchair I find folding a cushion to support the bottom of my back and putting one of those horseshoe pillow supports around my neck helps keep pressure off my shoulders. Make sure the horseshoe is made of fairly firm foam or whatever for decent support. I do similar in bed but it's more difficult as I tend to move around when asleep. Hope this helps. In my case I'm hoping restarting Baricitinib tomorrow will bring some relief before too long.

[Sjhoney in reply to wishbone]

Hi, I’ve had this for about the past 6mths, before I started new meds. I’ve been given steroids which have really helped but they seem reluctant to prescribe more. I just need some respite as it’s relentless. Yours in pain 😩

[wishbone in reply to Sjhoney]

You're probably suffering more than me by the sound. My shoulders, arms and hands have been worse than they currently are, which is bad enough, when I stopped meds for what must have been getting on 10 weeks following a nasty hip infection around 5 years ago. No steroids then due to infection risk and none now for the same reason, though the risk is probably lower. I hope you get some relief soon

[wishbone in reply to Sjhoney]

Sorry, I misread and thought it was after starting new meds.

[allanah]

Can you chat to your gp about better pain relief. Mine was quite the expert at moving to different meds depending on my pain level , and I did get increased steroids too until the RA meds kicked in. Feel for you, it's very hard x

[Sjhoney in reply to allanah]

I’d be more than happy to take steroids but not been offered. I get a blood test tomorrow so hopefully that’ll get things started 🙄

[allanah in reply to Sjhoney]

Good luck lovely xx hope it goes well xx

[Sjhoney in reply to allanah]

Ta x

[Sheila_G]

Hi. I get most of my probkems in shoulders and hands but it is usualky when I have overdone things. I can't help with the biologics as I don't take them. I put ibuprofen gel on shoulders and heat pads. Sometimes it works sometimes not. If they are too bad and I can't sleep my rheumy gives me an injection. I would telephone them and ask their advice.

[Sjhoney in reply to Sheila_G]

I’ve spoken to them twice in the past fortnight. I was advised to take paracetamol but it’s really not making any difference. I’m getting a blood test today and I’m almost hoping my CRP is high something is done about it! It’s so incredibly wearying ☹️

[Tatiana13]

I have the same problem with shoulders hands and wrist and disturbed nights , they put me on biologics and after 14 weeks there was some improvements but sadly I had covid and had to stop meds and now back to square one , hoping to restart in a few weeks fingers crossed. Keep positive there is always a light no matter how dim at the end of the tunnel

[Sjhoney in reply to Tatiana13]

So sorry to hear that. It does seem to be one step forward and two back ☹️

[Biofreak]

Steroid injection in both shoulders may help but you would have to discuss with Rheumatology after your blood test. Your biological treatment is still in it's relatively early stages so may not yet be fully effective. My rheumatolgist suggested a combination of 2 Paracetamol and 1x Naproxen when I had breakthrough pain.

[Sjhoney in reply to Biofreak]

Yes I’ve been taking that combo but nothing seems to help at night. X

[Blodynhaul]

Hi sjhoney, really feel for you, as it sounds just like me. I have the same thing - chronically extremely painful fingers/hands/wrists & shoulders & upper arms (soft tissue/muscular agony). Like you, in bed is awful and first half of the day. Can't lift arms or turn without agony. Hands seem permanently bad now. I'm in between meds, not had one that has worked this year, about to go on a JAK. I've now had 3 weeks of steroids (5 week course) and although some improvement thankfully so I can go to bed, still very painful. WIthout this partial relief from steroids I can' sleep or go to bed as such agony. I take codeine daily too. When not on steroids taking ibuprofen, which would help a bit after a few hours, but not much. Got oramorph from GP too - but can't say it helped at all either! I've asked my rheumy if the soft tissue agony in arms & all round shoulders, plus the 'broken bones' pain in my hands & wrists, is all the RA, or if somethings else like a myalgia or neurological cause, but she is supposed to phone me, so don't know yet. I feel it's assumed once you have something with a name, like RA, doctors don't always look at other causes as well. Like you, at my wit's end with it ! so not sure what to suggest to help! If either of us find a cure or relief, we can let each other know!

[Sjhoney in reply to Blodynhaul]

Hi, yes it’s as if you have RA so you can’t have anything else! And of course everything is taking ages just now. I can cope ok during the day but I find nights pretty unbearable. And because I know I’m going to be sore I get a bit angsty beforehand.

What’s JAK btw?

S x

[Blodynhaul in reply to Sjhoney]

Thanks Sjhoney. Really feel for you! x JAK-inhibitors, they're the latest therapy, like DMARD targeting the immune system. Here's a few words on them: they seem to be used when other DMARDS & Biologics haven't worked nras.org.uk/resource/jak-in...

[Shresworld]

Myself also the pain in my shoulders and hands things are getting worse. I was on simponi and doing much better then i got covid and discontinued simponi and been in so much pain. I'm going in for a rituxan infusion on the 28th i hope it helps 🙏 Its my first time commenting my name is Sheri I like in Arizona.

[Carolsos]

I am on biological Humeria and I am in constant pain, my shoulders, my armpits and neck, so much pain. I am seeing my consultant on Thursday. I asked can I have a steroid shot a few months ago but they said no as waiting to see if this drug has worked! I have been on it since August 9 th. I am not as bad as in September, but am in pain a lot, I think it's working, but not as good as mtx. I am having a flare at the moment so nothing is helping yet! Good luck get everything sorted out and I hope you get some strong pain relief soon.

[Sjhoney in reply to Carolsos]

Did you have the pain before the drug?

[Carolsos]

Yes

[Sjhoney in reply to Carolsos]

Oh right. Same here but I had a few courses of steroids which took care of it.Are you taking any pain killers?

[Carolsos]

Yes I am on codeine 2 tablets 3 times a day if needed, naproxen 2 a day if needed. I am on lefluomid, hdyro. I sometimes take paracetamol. I also use ibuprofen gel is I am desperate. I have a lot of hot showers as I cannot get out the bath if I get in! I came of mtx before I started this biological drug. I was off it for 3 months and I could not move and then it took 3 months for this to kick in, but am finding it's not strong enough! I see my consultant on Thursday and am hoping to get a shot to help me.

[Sjhoney in reply to Carolsos]

That’s a lot of drugs! Really hope you get it sorted x

[Zara0123]

You probably need something stronger then paracetamol. My nurse told me paracetamol was not strong enough to control RA pain. I was prescribed co- codamol but I was afraid to take it as it's a stronger painkiller. Since taking co- codamol I am better. I am on Mtx as well so the two together has helped a lot. I use to get really bad shoulder and neck pain. I could barely move my shoulders and neck but after starting Mtx and co-codamol that has gone.