Morning all, hope you are all doing good. I know I know that's to much to ask but we have to dream don't we?
Anyway, last week I had my 3rd shot of Humira. My 2nd shot was the first I did alone and I pussy footed around like you wouldn't believe. This 3rd shot I decided I was just gonna do it without thinking about it. OMG I thought I had been darted by a vets gun or something so won't be in to much of a hurry next week I can tell you lol.
First bloods after 1st shot my CRP had come down to 17, WOW how good is that. Got bloods again next week so will see if it has stayed down. Unfortunately the pain is still rife. Not sure what to expect now, it might be taking the inflammation in my body down but not the pain. Back at rheumy next week so will see what they say.
On Saturday it was a beautiful sunny day and I really fancied a stroll (something I can't really do and rely on my scooter) Anyway hubby was at work so I thought I would try yo walk my lovely dogs, just around the block which would take about 10 mins max if you are able bodied. Well it took me 25mins and hurt like hell and that was just one dog. I couldn't leave the other dog out so I struggle around a smaller course to take her. By the time hubby was home at 3.30pm I could barely move and duely got told off by him for being so stupid. I won't be repeating the experience any time soon.
2 weeks ago I tried to reduce the pred. As I felt so much better in myself even though in pain I thought the Humira is working a little so I would reduce the pred like the nurse told me too. I was on 15mg daily, the nurse said to drop to 10mg. No way I thought that's to much in one go so I reduced to 12mg. Still to much I know but thought if the Humira really is working then I would be fine. I stuck it out for a week but gave up and went back up to the 15mg. So if the Humira has took my CRP down so much why can't I reduce the pred without any effects? Gonna stay on the 15mg for another week and then try to go to 14mg if I feel able. Should have listened to my own advice and done 1mg at a time.
Right , well that's me. Thought I would just catch up on here before my day begins lol. Now off to get dressed, eat and take the never ending tablet supply. You gotta laugh, or you would cry.
Keep smiling, you know you want to
Sue x
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Sue8
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Sue it takes months to reduce the steroids not in one week as i found out. The first attempt i did it in three weeks,the second time it took me three months or more. Sadly it seems i can't come off them at all. I am so sore and stiff off them. So i have accepted that i will be on them for the rest of my life. I am on 5mg now and that seems to help the pain problem a bit at least.xxxx
I can see that being me tbh. I am at rheumy next week so will see what my nurse says. Just sick of the moon face and the weight gain as I am not a thin lady as it is.
Tell me about it Sue. I am trying to lose weight at the moment. I am writing everything down so when i go to the obesity clinic i have proof that i am trying.Hugs darling.xxx
I told my nurse I had cut my portions down again and only have a small plate. And that it does not matter what I do the weight stays. She told me that as long as I am on steroids I won't be able to lose weight.
Dear Sue8, been feeling a bit down today and your post really made me laugh... the bit about injecting yourself feeling like you'd been injected by a vets gun! I can really relate to that as I'm on Humira and my husband injects for me. It really does sting a bit and I even on occasion have screamed out loud and my dog thinks my hubby is hurting me, so now we have to lock him out of the bedroom when it's time. Glad you are feeling a bit better although it sounds like you're still in some pain....I really hope you continue to improve over the next few weeks. Thank you for making me smile today - Pat x
aww bless you. What breed of dog do you have? I have 2 german shepherds but my boy Harley is a white long haired one and he helps get me out of bed on bad days along with my hubby. He is only 20 months old but he is huge. He beats my hubby upstairs every morning to wake me up, he's the best.
Hi Sue 8, your dogs sound like darlings. Yes..they do give you so much. On a bad day they're always there to make you feel better and cuddle you when you need them to. I get so much from my Jack Russell terrier cross whose called "Sonny''. He's a rescue dog and we've had him for just over a year now. He's really made a huge difference in our lives and has gone from being a very worried little chap to a very happy and settled one. I don't know how I'd manage having big dogs like yours! Does your house get a little crazy sometimes?Best Wishes Pat x
My house is always crazy lol. I am a mum of 8 with 4 grandkids and one on the way. Saying this only my 4 youngest live at home, my youngest only being 8yrs old and who I home educate. I did Home ed my soon to be 15yr old but he is now in a special school fit for his needs as he is on the autistic spectrum and dyslexic among other learning difficulties. Not sure how I would cope with the school run nowadays to be honest but we love home ed so that's how it is staying for now. As I type my dogs are running eachother around my large table after the same toy lol. My boy is winning. The other day I crashed with the RA and fell asleep on the sofa, not sure how long for but I awoke to my boy with his head under my arm trying to move me or just wake me up bless him. I was obviously to quiet for to long for him. He certainly was sent to me for a reason as I was diagnosed with RA only 1 month after getting him at 10 weeks old though we chose him at 5 weks old.
Good luck with your Humira Sue. Still early days yet re the pain. You have had six weeks if you've done your third Humira shot so there's lots of time for more improvement. You do seem to be going well though The Rheumatologist says it takes three months to show substantial effect and they wait fourth months normally to see how much more improvement. I had six months (I did a research programme for Abbott but also missed two due to colds, so it was extended, and it did some improvement to my ankles and shoulders and elbows .. but not enough for my worst bits .. hands and knees.) As the ESR still very raised at 67 (and I know steroid injections were responsible each time the ESR dropped) I have seen my Rheumy for the review, and advised to stop it and starting Rituximab soon. Done my last Humira clickpen. It is quite a noise when it clicks and agree it is a stinger but if ten seconds of pain is what one has to bear for a big turnaround for RA then ... count back from ten to one .. and it's done! I used to have a cup of tea and a little goodie or choc biccie at my side so I could be immediately distracted after! Not too naughty but it helped distract me after the stab! I didn't like the first clickpen my nurse did to me when I took Enbrel even though I think that is a much more gentle clickpen. Not as noisy either. It was just because I wanted to do it myself. I prefer to do these things. Understand though some people can't. Hoping you soon feel less pain, Sue and Humira is your wonderdrug! Neonkitty x
I was told bu my rheumy that if it is going to work I should notice pretty quickly and not the 3 months like MTX. So never know what to believe. After my 1st my CRP went down from 38 to 17. I suppose that could have been a fluke but got bloods again on Monday so will soon see. I was also told that if little or no improvement by 6 months they take it off me. Cost I assume (in UK) as I get it free. I still inject MTX weekly and take pred daily. I tried to reduce the pred 2 weeks ago but had to go back up in dose last week. I hate pred but what can you do? My son has AS and takes 15mg MTX tabs and Humira. he wants to change to Embrel but they won't let him, again it must be the cost and humira is working a little bit. But he is a nurse and wants a better drug. He is moving to the USA later this year as his wife is American so maybe he will have more luck getting what he wants via an insurance, I don't know.
I know unless there is a valid reason for having to stop an anti-TNF such as bad allergic reaction, or intolerance to other types of biologics, then you are supposed to only have one anti-TNF here in the UK, then change to something else like a B Cell blocker .. a different biologic approach .. according to NICE guidlelines. As I had troublesome site reactions with Enbrel I swapped to Humira after three months. It does sound as though your Humira is working already. I have never been allowed to take oral steroids. Just the hydrocortisone injections to buttock and joints. Oral steroids sound like friend and foe combined. Difficult to live with side effects but awful to not have them once you are used to the relief they bring. Fingers crossed (can just about still do that!!) for Humira for you. Neonkitty x
Injecting yourself does get easier. Did try not pushing the pen against me too hard but that hurts more and caused a little blister which went down in a few hours. Anyway best I found was pinching a bit of tummy gently pushing the pen against it firmly and plucking up courage to push the button. Never feel the needle going in but stings towards the end of the injection when I really want to pull it out early. Got used to it now after 2 years and the improvement in the RA for me is fantastic so persevere for a while yet.
My feet and ankles are swelling. Rheumy nurse thought it the pred but my GP says no it's the humira. Last nigh they were so bad and I had pain shooting up my left leg. They go down over night I assume as they are level with my body but up again as soon as I start walking around the house. Will see what rheumy nurse says on Tues.
I could not imagine doing the clickpen to the tummy and was strongly advised for both Humira and Enbrel clickpens to use the front top of the thigh as it is easier to lean over the leg and place the pen. I found to apply some gentle pressure helped and again was advised to do this so the liquid went right in. (To fire the pen to the tum makes me feel weak! Don't know why as I don't carry much excess flesh there? Maybe you have abs like Arnie Schwarzenegger Richard?! LOL.) Anyhow I no longer do these clickpens. Sue, I never felt anything bad with Humira at all. It just didn't do enough but felt something happening. Intrestingly ... my ankles have never been so skinny and unswollen since I started Humira so that is something .. the main thing actually .. but as I said .. not doing anything really for fingers or knees and ESR still high so have now stopped in readiness for Rituximab. You could still have success on Humira as you haven't been taking it too long. I do hope so. Keep positive. Hope you got some sound advice and help from your nurse. xx
just to let you all know that I went to see my nurse yesterday. After only one dose of Humira my CRP went from 38 to 17 but this month is back up to 27. This is still not as high as it has been though and my nurse and consultant are hopeful. However she didn't do my DAS as she said it is to early and ideally on 3 months from starting humira,.so I am booked in again for 6 weeks time to have my DAS done. She said she would expect my CRP to stay down around the 17 score by 3 months so will see. They still think it's the pred causing my swelling and my heavy headedness that I get. Monday I went down on dose by 1mg as anymore I can't cope with. I did suggest that all my pain was not all RA but possibly Fibro. She asked if I had fibro and I told her that I had mentioned it a couple of visits ago to the doc and he said yes definitely but it does not raise your bloods. Anyway my nurse said that it made sense if I had fibro as that's why I am struggling to reduce the pred. So perhaps in 6 weeks when she does my DAS she will also check for Fibro.
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The Rheumatologist says it takes three months to show substantial effect and they wait fourth months normally to see how much more improvement. I had six months (I did a research programme for Abbott but also missed two due to colds, so it was extended, and it did some improvement to my ankles and shoulders and elbows .. but not enough for my worst bits .. hands and knees.) As the ESR still very raised at 67 (and I know steroid injections were responsible each time the ESR dropped) I have seen my Rheumy for the review, and advised to stop it and starting Rituximab soon. Done my last Humira clickpen. It is quite a noise when it clicks and agree it is a stinger but if ten seconds of pain is what one has to bear for a big turnaround for RA then ... count back from ten to one .. and it's done! I used to have a cup of tea and a little goodie or choc biccie at my side so I could be immediately distracted after! 
Humira and ME
Newly diagnosed 
First Humira shot Wednesday
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