The daily struggle

[Someonesmother]

So I did the three weeks of prednisone, stopped it last Thursday and now, Monday night here, I am in a world of pain and can hardly walk again. I guess the enbrel really has stopped working. So three weeks until I see the Rheumy and I guess I suffer until then, falling asleep at work, being in excruciating pain, hardly able to walk, with my hands locking in to claws at night and so painful I can hardly press down on the keyboard to type. Anyone got any thoughts on what I can do for my hands at night apart from sleeping with them tucked flat underneath me like I have been?

[sylvi]

Have you any splints you can put thwm in darling.xxxxx

[Someonesmother in reply to sylvi]

No I don't even know what they are. I will google it. Do they stop them from turning in to claws? So painful and then trying to unfurl my fingers eeekkk

[sylvi in reply to Someonesmother]

Go to your chemist or pharmacy and ask for finger splints that will help you short term.xxxxx

[Someonesmother in reply to sylvi]

Yes I have a very good pharmacist I wil go and have a chat to her, thanks Sylvi

[earthwitch in reply to Someonesmother]

Ideally, you need to get an OT to custom make a night splint for you. They mould them around your hand from a plastic stuff that they heat and goes hard when it cools.

[Someonesmother in reply to earthwitch]

wow I bet that costs a bomb! I guess I won't be getting them then.

[Amy_Lee]

Dear poor Someonesmother,

I can feel the pain that you mentioned here. Have you got the approval from your rheumathologist before you stopped the medicine? RA patient cannot simply stop any medicine unless the rheumathologist approve it. Also RA patient should not simply take any supplement unless recommended by the rheumathologist.

Are you on any medication now? I hope you will get well soon.

[Someonesmother in reply to Amy_Lee]

Yes they told me to take prednisone for three weeks then stop. I am still taking the enbrel until I see them in mid August. I just don;t think it is doing anything for me now apart from making me even more tired the day I take it and I am getting bad pains in my legs for two two days after I take it ,and the RA pain and fatigue is back with a vengeance.

[Amy_Lee in reply to Someonesmother]

Call your rheumathologist and tell him or her how much you suffer after stopping the prednisone. They need to know the response to try something else on you. Not all RA patients have the same treatment, it depends very much on how your body responds to the medicine, therefore you need to keep your rheumathologist informed of your condition.

[marie66 in reply to Amy_Lee]

I agree. I've been on prednisone at 15mgs since March, I tapered to 10 in May and then 7.5 June. Now alternate days 7.5 & 5mgs been told if pain or swelling increase put it back up.

Hope you get some relief. M x

[Someonesmother in reply to marie66]

I was on it for a couple of years but developed Cushing syndrome so had to come off it. I can take it in short bursts but not long term any more

[Someonesmother in reply to Amy_Lee]

I will email them but I really wasn't told anything much apart from to take it for three weeks then stop.

[Chez1 in reply to Someonesmother]

I have been on it for 4 weeks 6 a day and then reduced to 5 for 3 days 4 for 3 days etc until finished at end of July.

[Someonesmother in reply to Chez1]

I was on low dose 5mg for a couple of years but had to come off once I started enbrel and also because I had put on so much weight and had cushings syndrome. They don't like me to be on it for long periods but I don't think I am going to have much choice this time

[Chez1 in reply to Someonesmother]

At the moment wish I was still on higher dose as hands are aching again but then according to consultant pain will not come back - think he is wrong

[Someonesmother in reply to Chez1]

Yes I love it when you are told what your body will do and then it behaves exactly the opposite. Enbrel never helped much with pain for me but was great for fatigue and it is not even doing that any more. It is like I take nothing at all

[orchidcass]

Oh hun i feel your pain... literally! Ibe used melted wax on my hands that's really helped, braces would help prevent you "clawing" and under the circumstances maybe a maintenance dose of steroids till you can be changed over...I know it's not ideal but it usually helps with the need to continue on regardless! Hope you get some relief soon hun. So sad when a drug fails, even worse when it has benefited you, that glimmer of hope always seems to get snuffed out. Hugs x

[Someonesmother in reply to orchidcass]

It never really helped with the pain but was fantastic for the fatigue and I could actually cope working full time. Now I am struggling to get through each day. The hand thing is new and I suppose I will have to wait until I see the rheumy to find out what he suggests

[allanah]

Call the Rheumy helpline , can't see why you would sto steroids before another drug Kicks in?

You are glaring do maybe they need to see you sooner and get a systemic injection, well st least that's what I get !

Also ask yo be referred to OT they give you lovely big resting night splints which really help when you are flaring.

Remember your pain meds and hot or cold packs!

But act today and phone the hospital !! Mwah x

[Someonesmother in reply to allanah]

We don't have a helpline here. All I can do is email the rheumy nurse and see what she suggests. The system is so underfunded here that every appointment is triple booked and you sit and wait for up to 6 hours to see the rheumy, so no hope of getting an early appt. They also don't do systemic steroid injections here. I asked early on in this horror journey and they looked at me like I had two heads hahaha. We also don't have free physio here you have to pay for it and any thing you may need, so not really affordable on an ongoing basis. When I fractured my heel it cost me several hundred dollars for about 6 appts with the physio.

[allanah in reply to Someonesmother]

Travel to another hospital. They sound pants!

[Someonesmother in reply to allanah]

It is the same all over here and only two where I live. The one I go to is the main hospital for my city and the surrounding regions so they are over worked and understaffed. Rheumatology is not on anyone's radar so doesn't get funded and has more money taken away each budget. feel like starting a campaign to get it on the politicians radars. I feel so sorry for the staff they work such long hours and neglect their families to try and help everyone. All I can do is send an email so that they know what is going on when I go see them mid August.

[allanah in reply to Someonesmother]

You need to go to your MP surgery and tell them how bad it is. Quote the protocols , eg 12 week referral but the Patient is the centre of treatment and no Patient should be left in pain.

Nras will back you up with papers etc but yes go . The treatment is ridiculously bad .

If I phone my doc I get a reply before 4 pm that dsy.

It's ridiculous you are left suffering and wrong .

Nras what's your advice??

[allanah in reply to allanah]

Ah just remember you are abroad? But would still go to your politician and complain anout the pain aspect , doesn't sound like good medical practice to me X

[Someonesmother in reply to allanah]

Yes I live in Oz. The rheumy wants to help but he is one man with a two registrars to service thousands of patients. They are so overworked it is ludicrous. My next appt is at 1pm but I doubt I will get in much before about 5 or 6pm. that is how bad it is. I need to start with the local gov't and expand my petitioning.

[allanah in reply to Someonesmother]

I'll sign it !

[Ali_H]

Hi,

Sorry I can't give much advice other that to back to Dr or theumy department and getting referee to an occupational therapist to get hand splints. I wear soft ones when typing and doing things like making beds etc to protect my thumb joints. Splints come in very different shapes and forms to help us and the OTs are best place to assess you for the correct ones.

I hope things pick up for you soon

Ali

[Someonesmother in reply to Ali_H]

Thanks Ali_H. We don;t have that option here, I live on Australia. I have to see one privately and it costs $$$$$. I am going to have to do something though because laying on my hands is not really an option and when I do the shoulder I had operated on in Feb becomes very painful because of the odd position. hahahah

[marie66]

Are you using splints? I couldn't cope with pain without them. M x

[Someonesmother in reply to marie66]

No and as this is a new symptom I haven;t seen anyone about them yet.

[Ali_H]

Hi,

Replied in a new post as I couldn't get a picture to paste into here... I hope that's OK

Ali

[Someonesmother in reply to Ali_H]

Ok I will check it out.

[Someonesmother in reply to Ali_H]

Oh my gosh just looked them up and the cheapest ones I can buy online are $140 each. ouch I don;t think I will be getting hand splints for a very long time.

[smithfield]

Ask for a referral to hand therapy, they will provide splints for you as well as assessing you for other aids which may be of use. If you do not have a hand therapy dept.in your area, occupational therapy can also supply them.

Hope you get something soon.

[Someonesmother in reply to smithfield]

Thanks Smithfield. I live in Oz so we don;t seem to have those things here so I have discovered. It is a user pays system here and I can;t really afford more physio or the splints. I looked up the cheapest ones and they are $140 each

[smithfield in reply to Someonesmother]

What a shame I cannot post you some over.

We sometimes take the NHS for granted here, but it is there when we need it. It is awful you are in such pain but cannot afford the treatment, so frustrating.

[Someonesmother in reply to smithfield]

Our government is going towards the US system so it will be even worse. They are to start charging for scans, xrays and pathology. Once they do that I will no longer be doing monthly blood tests or getting any more diagnostic investigation done as it will be too costly. Health care for the wealthy

[Hidden]

I recently went to a talk given by our wonderful OT and she was asked just this question about hands clawing at night. She said that if you can't get proper splints try bundling up a sock, putting it into the palm of your hand and lightly bandaging it in place. This stops the fingers clawing tightly.

Hearing how people have to cope in other countries really makes me appreciate our NHS even more. I hope you find something that helps you.

Sue

[Someonesmother in reply to Hidden]

Thanks Sue

I think I might try that. Wonder if it will work of I use a rolled up sock and use another one on the outside to hold it in place. I will give it a go