Starting to struggle

[Penelopepitstoq1uk]

Hi I've been diagnosed for a couple of years now although I've struggled on medication, I'm waiting to go on adalimumab injection. I feel like even though I've felt rough on other meds waiting to start this I've felt as if I've crashed and burnt with Ra. I feel so bad joint wise and feel so down which I never have before. So sorry for post I'm quite a strong person but the pain is really getting to me x

[Blackberrywine]

Sorry to hear you are struggling. I can totally empathise. On going pain is so soul sapping. Can you get a steroid shot to tide you over until the injection?

I hope things get better for you very soon.

Best wishes.

[Madmusiclover]

The waiting is the worst. Much sympathy. Many on here get on well with that drug. Don’t give up hope. Xx and if it doesn’t work there are others to try.

[janmary]

many people on here will have experienced a phase such as you describe. The length of time waiting for a new treatment and then waiting for it to work is so frustrating - and painful, and you wonder if you’ll ever get back to a ‘normal’ life.

Hold on - perhaps ask for some interim steroids - things will get better

[Zip1]

I started on adalimumab injections last year and am much better. Pain is manageable and swelling under control. Still fatigued but that may be due to having no thyroid as well as RA! Look after yourself and as suggested by blackberrywine see if you can get a steroid shot in the meantime. I hope they work for you.

[cathie]

sorry to hear this. What is the prospect of you getting it? What is the delay?

[Penelopepitstoq1uk in reply to cathie]

I have no idea I saw consultant only about a month ago and nurse a couple of weeks ago x

[cathie in reply to Penelopepitstoq1uk]

I asked because in my 20+yr experience with RA that the waiting for decisions, treatment etc can be the worst. At least if you can find out why you're waiting that might help a bit, and make it easier to get a steroid sticking plaster.. Though that can be a problem if its difficult to stop them. Hope you get things sorted soon.

[Carolsos]

Ask for a steroid shot or some steroids tablets, it is always so very long waiting. I don't think the people that ask you to wait realise how much pain we suffer in-between waiting for new drugs! I think if they experienced it themselves they would hurry up! I have been I'm your shoes and I rang up for steroids and wouldn't take no as a answer. Really insist! Good luck. Take care.

[jojoishere]

Hi there,I'm also waiting to go on Adalimumab, and was diagnosed just over 2 years ago

Yes yes and yes. I've had all your emotions, and feel exactly the same. Drained by the pain. And side effects to other medications, been really down, but I'm really hoping this drug when I start it works for me, and in my head I've been planning what I'm going to do when I feel better, as in living my life again, I wish u well and hope it works for you, don't give up, might be the one,let me no how you get on take care

[Monkeysmum]

Hi, sorry to hear you are struggling currently. Just wanted to say don’t give yourself a hard time about the fact that you are feeling down currently. As you say, pain does get you down, but I have also realised that whenever my RA is active my mood seems to be suffer a great deal. From the reading I have done it seems this is not just a normal emotional reaction to pain, but also a chemical reaction in the brain caused by the inflammation in the body which itself leads to depressive symptoms. So it may be that as your new medication takes effect, and reduces that inflammation, that you find yourself back to the strong person that you feel you are normally. 🤗

[Penelopepitstoq1uk]

Thankyou all so very much I think I'll ring Ra nurses and ask for a steroid. You are all so amazing helping x

[Createsomething]

Hi Penelope pitstop...love your name!☺️ I'm writing this hoping you've picked up a lot since you wrote your post petal. I know how down we can get with RA symptoms, and I'm sending love ❤️ and healing thoughts with this message. I'm due to start a new med very soon, I think it's abatacept. The nurse said I have to have a period in-between the old drug and the new drug without taking anything (other than usual steriods) so I'm not looking forward to that. Did they say you needed to do the same? Let us know how you get on with the new med, and please stay strong. We should call ourselves RA Warriors because we have to battle this nasty condition every day, but we are a STRONG bunch💪💪🔥

[Deeb1764]

we all go thro phases of despair and lose the will to keep battling thro it all. New meds means another 13weeks to see if there is any improvement normally and that in itself can be soul destroying too.

I went thro a bad phase of life with RA and also non stop add ins of health issues and this was not where I thought I would be at 57!

I self referred to the Wren Project and 12 weeks later and 6 sessions of talk and rants I came out the other end more balanced.

Finding the drug regime that works for you is key but also even on pain days or bad days try to find something good to do as well. A walk round the garden, a podcast or some music just to get you in a slightly better place.

I bake and it takes all my energy but it’s creative for me and fairly fast too!

[smilelines]

It always bugs me when I read that depression is associated with RA because who wouldn't feel sad waiting around, in pain, for medicine. Plus, it is hard to keep a person's spirits up when treatment is so variable and a person never knows if something will work or hold unpleasant side effects. I know that my first instinct it to feel angry towards my sore body but I really try to send kind messages to my sore joints when I can. Take care and may you get that medication soon!

[Pluffmudgirl]

Hi Penelope ~ (((Hug))) I have been reading these blogs for a few months now and replying to you is my very first post. My situation is exactly the same as yours. I have been struggling with this disease for two years and am only just now starting to notice some positive progress with my treatment protocol. I am in the states so my medical access is very different. However, it seems the doctors don't move any faster when it comes to treatments. I am sero negative with only one marker being positive. (IgG) I do respond immediately to Prednisone and when I take it...the world is full of sunshine and joy. The ongoing pain and exhaustion is quite depressing. At least once a week I will crash and it is all I can do to get into bed and stay there for 10 hours. I started with Metx for about 4 months and then they added Hydroxychloroquine and Folic Acid. The Hydroxy gave me severe diarrhea and my dosage was eventually decreased. I think I was on those for at least 12 months before they added Humira. I was so frustrated it took 3 months before I actually received the medication. I have been on Humira for 12 weeks now and I believe I am about 50% improved with pain. I didn't notice any difference until after the 4th injection. The exhaustion is still present if I do too much ..but.. I am hopeful now. I see my Rheumy in August. I hope you will also see some improvement when you start Humira. (((Love and Hugs))

[Penelopepitstoq1uk]

Hi to to say thanks everyone. RA nurses have been brilliant got my bloods done yesterday and going for a steroid injection tomorrow. X