new to the forum HELP!!!!

nickyr

Hello, sorry I havent used a forum before (bit computer illiterate as my children tell me!!). I am 46, i have got psoriatic arthritis and psoriasis and I am now having to choose which anti-tnf to help improve my symptoms.
My mum had the most severe of rheumatoid arthritis in the past and i ahve a desperate fear that I will end up in a situation like she did with no independence (although i know she was treated in the old destructive regime!!) I am really looking forward to being part of the forum and I hope that i can pick up some good advice to help me choose which medication would be best for me. I have recently lost 10kg through really hard work and refocusing on food and I am very aprehensive about starting anti-tnf which will make me put on weight. Any help, support and advice in relation to the anti-tnf with the minimum weight gain will be significantly helpful to me. Thank you so much in advance
Nickyr

stickywicket

Hello Nickyr. It’s good to meet you. Don’t worry about not using a forum before. I hadn’t either, in fact I still haven’t apart from this one. You’ll soon find your way around.

I’m sorry about the PsA and psoriasis. My Mum had psoriasis but mine is definitely RA, not that it makes much difference to the treatment. We’re all auto-immuners.

Please don’t think that your Mum’s experience will repeat itself in you. I’ve had over 50 years of this stuff and, believe me, things are much better now – meds, physio, operations, the lot.

You have done amazingly well to lose 10k and I’m sure that determination will be a huge asset in your battle with PsA. I wasn’t aware that anti-tnfs caused weight gain but I’ve not taken any as I still get by on DMARDS. We have quite a few anti-tnfers on here though and I’m sure they’ll be able to help.

Now then, you need to put all your computer literacy to work and re-post this on the Living With Arthritis forum where more people will see it. I’ll look forward to seeing you around. Good luck!

[Deleted User]

Hi,

Thread moved to LWA - more appropriate than Say Hello

Moderator
YEH

DebraKelly

Welcome,

I suffer from RA & very bad psoriasis on my scalp.

I use a cream called trimovate prescribed from the doctor which does help a lot.

I am on a combination of Meth by injection and Sulfa 6 times a day as well as steriod injections into my knee every 4 months.

This combination seems to work for me, but we are all different.

If you are really worried about getting RA, don't be, its not hireaditory, I am the only one in my family to get it!

But I would go and see your GP for some bloods tests which will tell you either way.

dreamdaisy

Hello Nickyr, it's nice to meet you and I hope we can help. We can't choose your anti TNF for you, that's a matter for discussion between you and your rheumatologist. I'm on my third one, humira, which is combined with injected meth and sulph gtablets. At the moment the PsA is well-controlled, it's my OA that is causing me the most grief.

Everyone reacts differently to the medications but the only thing that caused me to gain weight was steroid tablets. I lost a great deal when I weaned myself off them but it's increasing again purely due to stress - things aren't easy in Daisy Manor at the moment. I'll tackle it again when I'm feeling better about things which I hope will be soon. Well done on losing the ten kilos, that's a substantial amount and I hope you can keep it off. What meds are you currently taking? DD

tillytop

Hello and welcome!

As the others have said, really well done for losing all that weight! I'm dead impressed cos I know it can't have been easy. As for being new to using a forum - I'd never done it before I joined AC either but I feel like a complete "pro" now

Re anti-tnf - I am on my third biologic (Rituximab) after previously having both Infliximab and Humira and I have never heard of or experienced weight gain as a result. In fact, in my case, the first two (particularly Infliximab) made me feel so well, after many years of aggressive RA, that I was able to do so much more, cut back drastically on the steroids and the weight just fell off! My experience is exactly as DD says re the weight gain - of all the many meds I have take over the years, the steroids are the only ones which have resulted in weight gain.

As for which anti-tnf to choose - I'm not sure if, at the beginning, there is actually much to choose between them in terms of efficacy because, as with all the arthritis meds, everybody responds diffently. The key difference, in my view, is the method and frequency of administration. Some (like Infliximab) are given by infusion in hospital, others (like Enbrel and Humira) are self injected at home. I have experience of both and I have to say that I actually prefer the hospital infusions because of the close monitoring and support from the hospital staff and that fact that if I have questions or concerns they can be addressed there and then without having to wait for my next rheum appt. Forums like this one weren't around at that time either so I really benefitted from being able to meet up with others in a similar position. Although the self-injections were fine for me too, and easier because I didn't need to take time off work as I did for the infusions, I did feel very isolated and pretty much "left to get on with it" and when I did have some problems, I found it hard to get the help and advice I needed.

I hope that, when you doing get going on one of the biologics, that it helps you as much as they have helped me over the years.

Please do keep us posted.

Tillyxxx

villier

Hi Nickyr

Welome to the forum, sorry I can't help you with your condition as it is OA I have, you will be glad you have found this wonderful haven , I have not been here very long myself and have found it so comforting to know there are a lot of people here that can relate to how exactly you are feeling, there is always someone around to give advice not only about arthur as you can see on chit-chat there are lots of topics going on and lots of laughs too, hope to see you around............tc...........Marie x

valval

hi welcome from me as well i can not help as not this far along the meds trail but what ever you decide i am sure you will be ok as others have said being able to move better helps with weight good luck and call in often val

tjt6768

Just thought I would say hi too..
Hope that today ends up being a good one for ya

bubbadog

Hi, Welcome to Arthritis Care Forum!! I'm afraid I can't help with your condition but just wanted to welcome you and send a big (((HUG))).

nickyr

Dear Everyone thank you so much for all your wonderful and welcoming replies. I guess that sometimes you just have to "suck it and see" with regards to the anti-tnf hat you choose!! i just wish my rheum didnt ask me to choose. Does anyone have the infusion infliximab at home? I am a nurse myself (not that it makes it any easier whilst deciding which pathway to choose) in fact it sometimes makes it more difficult. If you have the infliximab in hospital how long does it take and do you feel ok afterwards?
Thank you, you dont realise just how much you are helping me
Nickyr x x

dreamdaisy

Infliximab is not a home-option med due to the way it's administered. My first infusion took about four hours, my second and third were quicker as they realised I could cope with it. It then stopped working so I was taken off it (but on reflection I wonder if it actually did stop working, I think now that my expectations were just too high). I loved having the infusions, it was a chance to sit in a very comfy chair and chat to people, drink tea, eat biccies and read. Heaven! I now play Nurses in my bathroom - it's nowhere near as much fun. DD

nickyr

Thanks Dreamdaisy, I did read in a magazine that they were doing a pilot in administering Infliximab infusions at home in Harrogate I think!! just wondered whether anyone had experienced that. Tea, biccies and a read sound positive to me as well.
Thank you
Nicky x

dreamdaisy

Ooooh - I haven't come across that! Thanks for telling me, I'll do some research so I'm better informed. DD

toady

Hi, just a couple of points about choosing anti-TNFs - I started last December, and a few things that helped decide me were; 1. Enbrel stays in the body for a shorter period than some of the others, which to me is a thing in its favour (if you have problems, or side effects, or need to come off it, it will be out of your system much quicker) 2. I did want to inject at home rather than go into hospital, v difficult for me to keep appointments. 3. the side effect list was slightly less scary than some! though that isn't an indication in itself, i'll clutch at any straw in that line!

I certainly haven't put on any weight, and I could do with some, so I can add to others saying it doesn't seem to have that effect.

I can pretty much say I haven't had any noticeable side effects in fact, though some minor things it's hard to attribute (could be the methotrexate or the RA or the anaemia..) but nothing at all that I know of. It worked for me by the morning after my first injection - I'd heard reports that it could, but was very surprised how unmistakeable the improvement was.

Good luck with what you decide.

lulubell69

hi and welcome
I've been on most drugs over the years for my RA and I have just about reached the end. Currently having infusions of tocilluzmab but not doing much. I agree with others, anti tnf's don't put weight on you however, in my case when I feel well I regain my appetite, therefore sometimes put a bit weight on.

Take care and keep us up to date
Les

Loulou11

Hi nickyr welcome to AC, I have RA and have had 3 TNF drugs inflixmab lasted for 10 wonderful years and gave my a new lease of life I managed to work full time and as I put it actually live not exist. When this stopped working they tried ritiximab but this didn't work and now I'm on humira, I think I was spoilt with the first TNF and sometimes expect to much. The only meds I have weight gain with is the steroids.

As I said welcome to the site I haven't been here that long myself but really find the common ground we all have refreshing.

Loulou

nickyr

Dear everyon ethank you for your wonderful support and very interesting posts. well i went to see the rheum nurse yesterday with a view to have my first assessment for anti-tnf's. i had my chest xray and test for hep B and we have decided on Humira, btw the nurse was lovely!!. I have to go back again in 4 weeks for my second assessment, to see if i meet the criteria, which i understand is part of the NICE guidance protocol. Meanwhile we disucssed that my hands and shoulder were very painful, the nurse said even though it is ridiculous, she couldnt give me a steroid injection as I may fulfil the criteria in 4 weeks time. SO basically she said that we have to make our patients get worse before they get better!!, so now got to wait realistically another 6 weeks before having the first injection.
I also have to be shown how to give the injection by a qualified nurse even though I ahve been a qualified nurse for 30 years and gave my methotrexate injections independently from the start. Hey i am just grateful that I am now this far and being negative drains energy anyway!!!!
hopefully by christmas I might start to feel better x x x :

stickywicket

That's something good to aim for. I hope so too. In the meantime stick with us as we do understand what it's like. We also understand the waiting game. It's all part and parcel of it. I hope your wait will soon be over.