Hi just me again moaning I had rtx about 10 weeks ago shouldn’t I see something by now ? Stiffness and pain free? Or is this it is this what this disease is for the rest of my life? , I need a steroid jab Its the only thing we’re i get relief, should I give up the ghost on rtx and call it a day , will any drug ever work for me? I’ve had loads oral weekly injection and now rtx but I’m seeing no difference living in a constant flare up practically zero energy , I put one Xmas tree up yday and today I’m paying for it, it’s not normal, so does. Anyone care to comment on rtx am I one of them we’re nothing is going to cut it is anyone else had the same thing happen, so stubborn this disease depresses the life out of me , anyway moan over, is rtx a waiste of time for me ? Sorry about the misrable post, bring suz back with her positivity . X
When to give up on a drug : Hi just me again moaning I... - NRAS
When to give up on a drug
If I had 3 wishes and I could send them somewhere, I would wish on each of them to send everywhere! If RA could be healed with this one thing I would gather you all and sing sing sing!! 😄 X
Hello Vonnie.. sorry go hear this, was this your first cycle of Rituximab?
Little bird yea first infusion ! Any clue ?
Hi Vonnie..yeah don’t give up!!! I’ve just had my 4th cycle so still feeling a bit blurghhh. I was very much like you with the first cycle it didn’t kick in for ages and then I only got a small amount of relief but it was very good..no stiffness pain and more energy. The second cycle kicked in fairly quickly and had about 9 months relief, third cycle nearly a year..so hopefully a good result with this one too.
So don’t give up with it just yet it can take about 12 weeks to kick me but like I said with me it was more like 16! I don’t take methotrexate with it either but got a whole year I did not need any extra steroids or depo’s.
I have heard the more Rituximab infusions you have the longer the relief and I know someone who gets 18 months with it...so don’t give up just yet!
The thing with Rituximab as well we don’t get regular blood tests and the first check up is 3 months in .. so we don’t really know if our inflammation is reducing but can see and feel if it is?!
Good luck.. hang on In there 😊
I’m trying littlebird I think been so long with the steroid as well as waiting is just hard and with so much to do with Xmas as well, it’s just hard thanks anyway , x
Yes...it’s so hard waiting for a drug to start working! 😢. I’m remember ringing the hospital helpline in frustration thinking it was never going to work but then it did and hopefully it will for you too. Keep us updated 😊 xx
When do you next see Rheumy Von? They do normally say give it 3 months. It feels like we are wishing our days away, I know! I got up and emptied the dishwasher, Shattered! Can you imagine life without one...
Feb suz ages away I will have to ring the nurse team for a jab I will.be like super woman then. That’s all’s ever gets said wait and see been waiting near three years drains the life out of me suz, hubby my fish washers that’s is one job he can’t mess up. X
Jeez I know! If it's going to work it's worth the wait! But that game of snakes and ladders happens too often. Are you eating the medicinal mushrooms? I feel they are helping. Still tired though! X
I not eating mushrooms I like mine in a omelette I’ve never heard of them the on,y kind I know of is the magical ones and I don’t do them either I hear there great for depression but I don’t fancy been all trippy x
No, don't fancy that either. Have a look on a fairly recent thread of mine on medicinal mushrooms. They have weird names, look weird but taste divine 😁. Very good for the immune system. X
I seen a post of yous with the mushrooms can I cook them and we’re do I get them I will try anythink I’m at my limit now. X
How lucky are you
I am the dish washer ha ha🤣😂😂😂😂😃
Keeta that’s is one and only job so I think he gets of very lightly he is good tho . X
I am assuming your talking about mtx and if it is it can take up to three months to work. Also they might need to add something to the mix to go with it darling. Hugs.xxx
Syl rituximab I’ve had all the oral tablets plus mtx injection and weekly injection of benepali forgot the other injection name don’t work for me syl steroid work but the injection last for about 6 weeks then I’m back to square one it’s so stubborn syl don’t know what to do with it just have to live with it and chin up and all that. Just getting a view on what others have done if all fails 🧐
I wish there was a test to say which drug works. I took 7 years of trying dmards biologics combinations until tcz worked for me. My life changed dramatically. So if you feel ritux isn't helping talk to your doc again.
I found the one . You will too x patience is a virtue in this game as is being your own advocate as you have found out. Ax
7 Years ? Omg I’m going to ask for oral steroids I will have to,, Allanh my life changed I had to retire because I just couldn’t no more run around looking after sick people when I’m kind of not right myself. Glad you found your one but 7 years my god. X
It's really annoying waiting and hoping a drugs going to work, I was like that with Benepali it worked straight away then 4months down the line it just stopped working, I'm on Humira now and it's working thankfully apart from my hands which are swollen and sore so I'm waiting to go and get them injected xx
Pop benepali did that same thing to me I was delighted then bam it’s stopped I was gutted. Think I will give them a ring before the boils so at least I’m in some sort of shape for that x
Oh ha the hoils I mean x
Hey Vonnie. Oh absolutely no way should pain and stiffness be a way of life, or acceptable for us. ♥️.
Unfortunately though, the way many of our drugs work can take ages, and I mean ages to get into system and work 100%. Am now into my 5th Yr on rtx and mtx.. And I have to say.. I never get a hallelujah moment one morning (lol).. Like with kenilogs.. But I am well controlled.. Very well now, considering my 30+yrs of Having JIA. Hardly any stiffness etc, apart from my mechanical issues!.. But I did need steroid jabs every few months for the first Yr or so, to keep me OK while it kicked in.. So you are still really early days hun, I really wouldn't give up on it yet.. But definitely get some help with another jab.. God I LOVE kenilogs.. They get rid of all pain, give you energy, and I feel normal on a morning, not am like am fighting my way out of a fog lol. Get yourself a nice Xmas present haha!!
Really hope you feel better soon.. I know you will. ♥️
Jo xx
Ps. Am not saying it will take that long! I was stubborn to control! Xx
Mojo maybe this is it for me and this is my new normal and maybe I need to except this is the way it is and I willnver be quite the same as pre RA, I’m trying to go without steroids because I’ve been on them for 3 years near enough and it masks the disease itself it’s catch 22 the steroid will cause damage as well if I had one wish it would be to not have this but I do.mine is very stubborn as well 😘
Bless you hun. I guess my pre RA was so long ago I can't really remember, and yes we will never be the same. But the level of pain etc should be bearable, hopefully never unbearable.
Injections don't do anywhere as much damage as oral, which is why they are so often used in clinics now.. I have had osteoporosis since my 20s, due to the level of oral ones I took.. But the hospital are still happy to give me kenilog..
Steroids can stop the damage being Done to joints whilst your long term meds kick in, and you really must try to stop the damage, as no meds can turn back time once this happens..
Take care xx
Have you considered CBD oil?
projectcbd.org/about/herbal...
A great site to get started on your research.
It is helping me a great deal. Been taking it almost 2 1/2 months now.
That’s no ive not tried it it’s illegall here, your in the USA your probably in the states were it’s allowed. As it gone more expensive since it became a legal drug? My cousin had some for is motor neurone but he had it made for himself not the over the counter that you buy in the health shops, cost him around £300 a month, I can’t afford £300 a month and I wouldn’t have a clue how to grow for myself and we’re to start with it.
Isn't cbd oil legal in the UK? I assume that is where you are? Yes it is expensive, but some sites here in the US have an assistance program with up to 60% discount and they have sales, esp around the holidays. Perhaps that could also be the case in the UK? CBD oil does work. But it's tricky to find the right dosage.
I live in a state where marijuana is illegal but hemp is not and that is what my cbd oil is made from.
i don’t fully understand it but my cousin got is and mixed it with coconut cream he said the ones from the health shop are rubbish not enough in it to work not worth it you need the proper stuff but it expensive he did at first over use it end up not very well, once he got the right balance he was fine. X
Where do you live? CBD that's under 0.2% is legal in the UK and readily available in health food shops and online. I've been given some CBD oil chocolate for xmas.....
What's not yet legal are the THC and CBD mixes sold for medicinal uses, although I think there might be one that licensed for multiple sclerosis which is quite expensive.
What you mustn't do is try to grow it yourself, as that will be illegal.
Ha helix I can’t grow daffodil I would kill it , so I’ve no hope of growing anythink else that made me laugh I mustn’t grow the it myself, wish the uk would catch up tho it’s used for loads of things in other countries with good success but no not here, so behind backwards at times, I hate the big pharma, I’m fed up of taking toxic drugs that don’t seem to work, I don’t think a tiny amount what you get from the health shop will do it and I can’t afford £300 either so I’m stuck with the toxic drugs . Amen
I buy a 1200 mg salve from Lazarus Naturals here in the US, with a 60% discount which comes to $20 us for 2 ounces. It helps me a lot and no side effects. I have gca and pmr and feel it is helping me with my tapering of the pred and the headaches. Presently at 32.5 mg of pred. For the oral I take a tincture sublingually.
smoke the real stuff it works
I hate it! Messes up my head.
What is rtx
Rituximab, a biologic drug given by infusion in hospital every so often.
TCZ has been the best one for me not great but better.Rituximab did nothing for me but we are all different hope it it works soon for you x
hi had rtx without mtx 2 years ago it worked almost instantly for me but caused more damage to my lungs
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