I cant take this pain much more

Chinup

Hi, I really do not know what to do any more, I have PA and have only been taking steroids on and off since april, I recieved my letter yesterday to say My prescription is being set up for my humira injections, now have to wait for nurse to ring up to arrange delivery and date for nurse to come out and show me how to inject. When doc has put me on steroids I have been on 40mg a day and you would never know I had something wrong, I have been on steroids from the consultant who only put me on 5mg a day for two weeks the then 2.5 for two weeks, I have been on these for 9 weeks with one week break, when i had my last appointment at the hospital for my assesment for humira last month I could hardly walk as both my knees are so bad, I told them I cant go on like this, thats when they put me on the 5mg again. they do not work for me at such a low dose, i work full time and the only way i can walk is to shuffle, I then come home and have a family to cater for. I dont know what to do any more on top of the sleepness nights.

dachshund

Hi Chinup
i wish i could help you i'm sure some one will come a long soon who will know what to say and be able to help you.
i have oa and i dont know anything about ra.
take care.
joan xx

barbara12

Hi Chinup
You should not be left to suffer like this my love, you must get an emergency appointment either with your rheumy or at least your GP.
I do hope you get to see someone very soon.
Please let us know how you get on.
Sending you lots Hugs (((((((())))))
Love
Barbara x

dorcas

Hello chinup

I can see why you feel the way you do about the reduction in steroids if the PA isn't at all under control and is having such a big impact on your life. :roll:

I wondered what other meds you are on / been on? eg...anti-inflammatories, pain meds etc that would help tide you over while you wait to start the Humira.

I was on Humira in combination with Mtx... is that what they are planning for you.?

I've had PA for 15yrs but never been on oral steroids :? and there are wide variations of treatments depending on your consultant's preferences and your individual needs. The treatment I've had (which may or may not be appropriate for you) has been anti-inflams, pain meds and amatriptyline for help with nerve pain and to help me sleep.

I continued with the pain meds and amatriptyline when my rheummy introduced the combination of Humira and Mtx.... so they are not mutually exclusive!

Perhaps you need to go see your own doc and ask about what else could be prescribed for you. :?: doesn't seem fair that you are suffering so if there may be alternatives that could be given to relieve your pain while you wait to start the anti tnfs.

There are a few of us on the forum who have PA and I'm sure others will be along to offer advice and support too.

Iris xx

Bookseverywhere

Chinup, Sorry to hear about the pain you are in. Steroids are very much a double-edged sword. When I was first diagnosed, I was put on steroids and the dose was increased bit by bit until I was on 30mg a day, with all the associated side effects. When the doctors tried reducing it, the pain increased and once it was down below 10, I could hardly move.

The problem seems to be that there are different medications that work for different people (at least that's what I've been told). But you really shouldn't have to put up with that much pain. When mine got really bad, I just increased my dose of steroids and told the doctor next time I saw him what I had done. But of course steroids do have unfortunate side effects.

Working with such pain is, I know, horrendous.

Do look after yourself.

Best wishes,
Kevin.

Chinup

Hi

Thanks for your replys, I was diognosed 2 years ago, I have been sulfazine which did not agree with me and mtx was thae last drug i was on, the sulf brought my whole body out in a rash, and the mtx affected my liver so had to stop, I take Parcetmal every four hours and ibruofen every eight hours, on top of the steroids, none of this really helps or takes away the pain completly. I would welcome anything for a nights sleep,
My Knees are so swollen they feel they will give way and the pain in the back of them is so bad, it also feels like i have perm cramp in my calves, I have pain in other joints but kneees worse, my mouth is constantly dry and i have been given spary and gell for this, i can no longer enjoy food i used too, as my mouth is so sensitive, Iris what does the amatriptyline do, I will keep you all updated and thanks for listening, I know im not the only one who has this and wish you all well. x

MissKat

Hi Chinup,

Very brave to keep on working through this, I've stopped working for the time being... so I think you're tremendously brave to be working and to be looking after your family. Remember to look after yourself too...

Hugs x MissKat

dorcas

Hi chinup,

Amatriptyline is an older type anti -depressant but is useful for some of us arther people and is one of the drugs rheummys' use to help with nerve pain and sleep problems.

There are quite a few of us here in the forum who have been prescribed amatriptyline, but there are other drugs too... so it depends on what your rheummy or doc thinks might be best for you. It is definitely worth asking about

Have you ever had joint injections? your knees sound so painful!
There are also heavier analgesics that might help you keep on top of the pain. I take co-dydramol and tramadol prescribed by my rheummy . If the paracetamol and ibuprofen aren't keeping the pain at bay then perhaps you could ask your doc about more effective pain relief too.

I do hope you get some additional support/ meds to reduce your pain and to help you get a decent night's sleep.

keep in touch and let us know how you are!

iris xx

chris7

Hi chinup

Sorry I can't advise at all but just wanted to call in with a hope that you are at least getting some sleep tonight. You really have your hands full to cope with it all, on top of the family and work. :shock: Hope you can get a bit of a break and some help soon and support soon. You do have my sympathy. I leave a few gentle hugs (((( ))))
Chris

tonymohan

Hi Chinup
Boy! Do you remind me of myself in the early years of my affliction? I had to work throughout, sometimes with my knees almost imobilised with strapping and support bandages. My wife used to say I waddled like a duck. Even then at one or two points during the day I would have to go and lie down in the back of my van to try to get a respite from the un-remitting pain. Sitting was little help at the time.
I am a Builder 65 and suffered the misery of acute arthritis in both knees for nearly 13 years after rupturing my tendons and ligaments at work. Arthritis quickly followed the injury and destroyed the cartilage protecting the joints.... I was abandoned by Local Doctors and Hospital Specialists to a life of taking pain killers which was all they offered me in spite of my not being able to take them for more than 4 days without my stomach lining almost being removed. One Consultant wanted me to” Come back when it's worse" another said “Come back when you’re older we’ll see if we can’t do something for you then”
I have since spent 10 years researching and developing a topical cream remedy for myself aimed at assisting the Body’s Own Cellular Messaging and Functioning. It has helped me regenerate both medial menisci, refurbish the synovial fluid and proteoglycans (the cartilage matrix shock absorbers) and renew the injured tendons and ligaments in both knees. I now have fully functioning knee joints and no pain at all when walking or even when climbing and descending stairs and ladders. It’s great to get back on the balls of your feet to go downstairs again.
It feels like it’s been a long journey for me but I hope it’s not too long before you are better.
Best wishes
Tony

tjt6768

tonymohan wrote:

Hi Chinup
Boy! Do you remind me of myself in the early years of my affliction? I had to work throughout, sometimes with my knees almost imobilised with strapping and support bandages. My wife used to say I waddled like a duck. Even then at one or two points during the day I would have to go and lie down in the back of my van to try to get a respite from the un-remitting pain. Sitting was little help at the time.
I am a Builder 65 and suffered the misery of acute arthritis in both knees for nearly 13 years after rupturing my tendons and ligaments at work. Arthritis quickly followed the injury and destroyed the cartilage protecting the joints.... I was abandoned by Local Doctors and Hospital Specialists to a life of taking pain killers which was all they offered me in spite of my not being able to take them for more than 4 days without my stomach lining almost being removed. One Consultant wanted me to” Come back when it's worse" another said “Come back when you’re older we’ll see if we can’t do something for you then”
I have since spent 10 years researching and developing a topical cream remedy for myself aimed at assisting the Body’s Own Cellular Messaging and Functioning. It has helped me regenerate both medial menisci, refurbish the synovial fluid and proteoglycans (the cartilage matrix shock absorbers) and renew the injured tendons and ligaments in both knees. I now have fully functioning knee joints and no pain at all when walking or even when climbing and descending stairs and ladders. It’s great to get back on the balls of your feet to go downstairs again.
It feels like it’s been a long journey for me but I hope it’s not too long before you are better.
Best wishes
Tony

Can you tell us more about this cream Tony? I've had knee problems since having osteo-chondritis at about 14, now 42 with osteo A in both. Just had steroid injections in them both friday, not had them before, I know it's not a solution and at the minute they're still a little stiff and sore (think it's to do with all the scar tissue from the ops over the yrs) but I think I am starting to get a 'normal' feeling in my knees, hope it lasts!
The cream you mentioned sounds very intreuging though..

Nice to meet you by the way

Tony

tjt6768

PS, Chinup, sorry, I didn't mean to hijack your thread, and I really hope that you are ok and actually managing to get that well deserved sleep..

Tony

dreamdaisy

Hi chinup, I hope things are improving for you. Like you I have PA, but unlike you I am on more than oral steroids. Currently I take humira, meth, sulph, naproxen and oral steroids (I am now down to 10mg per day and grinding to a halt). For pain relief I take co-codamol (every-day use), then I have tramadol 50mg for the more uncomfortable times, slow-release tramadol for when I flare (which I do, with nauseating regularlty) and oromorph for when I need a little pink cloud upon which to float. That is absolutely my last resort, tho and I haven't gone that far in quite a while. One does adjust to the pain, eventually. Oh, I began PA in April 1997, but wasn't accurately diagnosed until October 2006.

You are on pitifully weak pain relief, you do need something with clout. I know that you have tried sulph and meth, what about leflunomide or cyclosporin? I don't know if they could be used in conjunction with the humira, but they are further options. An anti-inflammatory such as naproxen could also help with the pain and swelling, and one should also take a stomach protector too, to guard against ulcers etc. I sincerely hope the humira works better for you than it does me. How bad is your psoriasis? I have very little, in my case I think that is down to the sulphasalazine, and for that I am thankful. Have you ever had your knees drained? It isn't a pleasant experience but it does shift the extra liquid which one doesn't need! The most I had taken out of one joint was about 30mls, that made a huge difference! I wish you well. DD

hileena111

Hi Chinup,
Hope you are feeling a bit better....sorry I've got OA and you are getting answers from people a lot more qualified than me
Just wanted to send som {{{{{{{{ }}}}}}}}}}

Love
Hileena

frogmorton

Hi Chinup

I'm with DD here - something with some welly!!!!!!!

Get back down the docs armed with some support (whoever is most helpful) and if you need us some of us will hop in your pockets to help

Take care

Love

Toni xx

skezier

Hi Chinup,

people say that don't they... all the time... but its too helpful really..... well it is sometimes.

i know what its like to have to work when your in pain and so wish you didn't have to do as much as you are doing. is there anyway you can cut back a bit..... sorry one handed typing cus hurt my neck and shoulder.

the humira with a bit of luck will really help you but you also need better pain control and maybe better anti-inflammatories....

i agree with the others you need to get hold of someone in the team that are there to help you and get them to ... as my rumo put it... beef up your pin control.

i so hope you get a better night there. nice to meet you. Cris x

hi tony nice to meet you as well.

Chinup

Hi All you all so nice and helpfull, I hope you are all feeling ok today? Tony I would like some of that cream........ sounds fantastic. Well I got on the phone first thing this morning when I went to work, after a lot of phone calls and one stroppy receptionest I got a emergency appointment with my consultant, she is lovely and could see how much pain i am in by my face, I told her how I was feeling and what a weekend I have had, She looked at my knees and drained them, out of my worst knee 75ml plus more on the bed, she said it was the second most she has ever had to drain, you could see my knee shrinking, my other knee was not so bad only 35 ml, at the same time she injected steroids into both knees, she has also given me naproxen tabs 500mg x 2 aday. I then got home and my doctor rang me to see how i got on, and i have just had a call to say my humira is going to delevered next
monday 29th, and nurse should be out within a few days of that to go through injection, with me. Im going to take next couple of days of work and give my knees time to settle, once again thanks for all your support, and I wish you all well, i will be on site tomorrow im going to try and get some sleep, hugs to you all. xxx