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Date: 15.03.2011
From: davina

Subject: which anti Tnf?

Hi everyone hope you all well.

as you may of read in my other posts i've been having problems with the med, like methotrexate and plaquenil not working and sulfa not agreeing with me
so my doctor call me in as an emergency to discuss starting an anti tnf.

so wondering if you could tell me which drug you are on and how you have adjusted to it and side effects?
the choice is enbrel, remicade, cimzia or humira.

also my nurse thinks i may have osteoarthritis due to my knee and thumb pains. do RA and OA come together often.

thanks inadvance.
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Date: 16.03.2011
From: cathy

Subject: Re: which anti Tnf?

Hi Davina I had similar problems to you and i am now injecting Humira. I have been injecting for 3 months and so far i have had a few side affects which are not very nice but i just keep thinking that it takes time and my body is getting used to it.I have found it difficult to inject myself, i worry i will forget or if you get ill you can't take it and i don't have a pain threshold anymore so it hurts a bit. It is a big decision to make and my advice would be to research it fully beforehand. I have heard that RA can fade to OA? Hope this helps. Good luck.
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Date: 17.03.2011
From: davina

Subject: Re: which anti Tnf?

thanks for the info cathy, do u have OA?
i am so worried about injecting myself, i know they are like a pen but worried about the power of the injection.

take care
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Date: 17.03.2011
From: cathy

Subject: Re: which anti Tnf?

Hi Davina i don't have OA i have RA and AS but my mum had RA and it turned to OA, if that makes sense! I feel the same every time its due to inject myself. Its a big decision to make as it is such a powerful drug and i am yet to benefit from it. I think its worth a try if you don't like it you can stop. It does sting like a wasp sting and you can not see the needle as it has plastic round it. Hope this helps. Take care.
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Date: 18.03.2011
From: Ant

Subject: Re: which anti Tnf?

hi davina, i have been on enbrel for 6 months and it has changed my life!! from not being aable to get out of bed to now being able to exercise and ive just started the gym again! i started to notice difference after 4 days, i know this is quick and not everyone reacts like this but its been a miracle for me! The side effects can seem scary, but ive so far(touch wood) not had any, only one cold in 6 months, but my pain was so unbearable that the decision to try was easy! the injection does sting sometimes but take out fridge for 30 mins before and ul be just fine, i find outside middle thigh the best area and i have a needle phobia too!! just seen my rheumy today and she is so pleased that dont wanna see me for a year now!!!! hope this helps some?
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Date: 19.03.2011
From: kazzie

Subject: Re: which anti Tnf?

hi davina am a bit like ant but i have ra and oa and just waiting new hip but after lots of orter meds i am now on enbrel once a week injections and it worked ace for the first few weeks and i had a new lease of life as couldnt even get out of bed was so stiff and in pain then i think i overdid it so had a flare up for bout 3 weeks ,but now all settled down can say i feel much better and the drug is givin me a bit of normal life back and yes the needle not nice but its 10 seconds and its done and i was told about all side sffects but i didnt really have a choice as had no life ,i hope it works for you x
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Date: 20.03.2011
From: Arwyn

Subject: Re: which anti Tnf?

Hi My better half was eventually put onto Enbrel, and for 6 months was incident free and improving, but suddenly went into Renal failure, her parental aunt also suffered the same. There is no medical evidence of this occuring, but its happened twice very close to me. She is now on Azathioprine which is an anti rejection drug, i.e. another immunosuppresant, and is coping fine
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Date: 20.03.2011
From: davina

Subject: Re: which anti Tnf?

hi ant and kazzie thanks for your info and support.
i am still a little afraid but reading what people say about embral and the support i get from the company who supply it i'm more confident.

hi arwyn so sorry about your family and the renal failure hope they are ok now.
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Date: 20.03.2011
From: Arwyn

Subject: Re: which anti Tnf?

all now fine thanks, didn't mean to put a downer on enbrel, as Rhian was on the road to "recovery", hope you fare better, and I did mean a paternal aunt not parental !!!
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Date: 20.03.2011
From: jo

Subject: Re: which anti Tnf?

Hi. Something to make you smile ...... I used to inject Humira. The first time I did it (after halfway through injecting) I noticed an air bubble and went into panic mode!! I pushed the syringe in fully, then phoned their helpline worried that I had harmed myself!! lol Stupidly I thought the air bubble would enter my vein and have a dangerous effect! The person at the end of the phone reassured me with a sense of amusement. Dumb blonde me!!

Now, on a more serious note ..... Humira didn't work for me. I now go into hospital twice a year for infusions of Retuximab which seems to be working well! I'm also taking Lefluonomide, 3mg of prednisolone and ibuprofen daily.

I do think all these medications are trial and error and eventually you will find the right one for you. The medical team will monitor all your blood levels monthly so if anything does go wrong they will catch it early, ie my GP phoned me within 2 days of having a blood test to tell me to come off a certain drug as my liver enzymes werent agreeing with it.

Good luck and try not to worry too much xx
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Date: 22.03.2011
From: kazzie

Subject: Re: which anti Tnf?

hi arwyn thats scary that bout the renal failure as it runs in my family also and do worry bout things like that but i was getting were i couldnt even walk or get out of bed so felt like i had no choice ,but its still in the back of my mind all the time ,thats why i try to live my life full while am havin goodish days .is your better half doing ok x
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Date: 23.03.2011
From: Maz

Subject: Re: which anti Tnf?

Just re-read your original post & thought I may be able to shed some light on something, RA is not a follow-on from OA or vice versa ..

OA (osteo-arthritis)is a degeneration of a joint only due to wear & tear, RA (rheumatoid arthritis) is entirely different, so one has absolutely nothing to do with the other.
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Date: 23.03.2011
From: davina

Subject: Re: which anti Tnf?

oh thank you maz i was scared that was the case. hopefully i don't have oa too.
arwyn i understand what you mean and enbrel everyone reacts differently.
jo bless you lol, but could have been right and always good to check. also i'm sorry humira didn't work for, how do u feel now your on retuximab?
davina
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Date: 23.03.2011
From: Maz

Subject: Re: which anti Tnf?

Welcome Davina, It's all a matter of what kind of exercise you did not only when you were growing up but as an adult too etc. Think elite athlete, all that jarring from running for example will probably produce OA in the knees or ankles later in life but not necessarily! What you can do to help yourself if you think you may have OA is to start taking lots of glucosamine every day & building up the muscles around that area to take up the load!
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Date: 25.03.2011
From: Arwyn

Subject: Re: which anti Tnf?

Hi Kazzie, Rhian is doin' fine on the azathioprine, was actually doin well on the enbrel till the panic, even to the extent of starting to garden again, but still gets her bad days. I do feel however that we have our own parking space in Morriston Hosp.
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Date: 25.03.2011
From: Arwyn

Subject: Re: which anti Tnf?

Hi Jo, I would advise caution with the prednisolone, you're probably aware that its a steroid, and Rhian was on it, a larger dose but a shorter time whilst her kidneys were recovering,and the result, catarracts, a side effect of steroids, all medication it seems has a minor side effect whilst helping with other probs
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Date: 02.04.2011
From: Jonny

Subject: Re: which anti Tnf?

Hey guys - I've been on Enbrel for 3 months and WOAH what a life changing difference! Joint pain eased to almost nothing, swelling reduced drastically and fatigue has been lowered! All round feeling much much better. I had a chat with the Dr who treats me. She reassured me - shes very confident that in the coming years there will be more medication, better medication and it's very exciting times in the anti-tnf field. She even believes there will one day be a cure! I know this seems/sounds daft but I think she's right! One day we may have medications that really maybe great for everyone and will cure all almost seem like a cure! For now tho, we'll just have to deal with what we got. For me that's Enbrel and I'm so happy/lucky and thankful for it. Just think, if you lived in USA you'd have to pay! I know I wouldn't be able to afford it! What do you all think?
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Date: 03.04.2011
From: Tom H

Subject: Re: which anti Tnf?

I really want to go on Enbrel. Been on Meth for 6 months now and it's not doing much. Also I've been on a bit of a downer last 2 months and drinking too much which can't be helping.

Do you think I should request Enbrel to my rhemy next month?

Thanks
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Date: 04.04.2011
From: cookie

Subject: Re: which anti Tnf?

Hi tom i was on mtx then leuflonomide after neither of which suited me sickness hair loss etc they tried to persuade me to stay on them but i refused. My consultant sugested anti tnfs this was jan and i had my first assesment last week the second is on the 28th april these things certainly do seem to take time. Whats your esr and crp like? These are the indicators that they look at for this treatment. Defo worth asking about tho x
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Date: 05.04.2011
From: Nadia

Subject: Re: which anti Tnf?

Hello All
Very interesting reading all your notes and learnings. I am in Australia, diagnosed with Psoriatic Arthritis over 2 years ago, after having the skin condition psoriassis for 15 years.

Started with MTX & Pred, then added Leflunomine, but only minor improvement. Taking large folinic acid doses 5 days a week to counter MTX side effects (especially mouth / tounge ulcers)(Lurcovorin).

Embrel worked wonders for me mid last year, but only for10 weeks, but then the benefits reduced. When I was well I was able to garden, walk, do household chores and was really enjoying myself.

Am in middle of flare up right now, pain in knees prevent mobility, can't work as I can't concentrate or think properly.
- changed pain relief from Panadeine Forte to Tramadol,
- awaiting pred infusion this week to try and knock the pain on the head,
- changing MTX to injection instead of tablets to get a more reliable absorbtion,
- changing from Embrel to Humira to see if it makes any difference.

I've read Divina's notes on infusion, but would appreciate hearing from anyone who has experience in MTX injections or Pred infusions.
Many thanks
Nadia
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