Hi everyone, will be starting Enbrel and I am very nervous about these biologic drugs. Any feed back would be so welcome.

[whirlygirl]

Also on 25 mg. injectable methotrexate weekly. All of the RA drugs make me very nervous. Diagnosed one year ago with RA and psoriatic arthritis.

[lab-lover]

Hi Whirlygirl. I was on enbrel for about 6 months last year, it was the pen type injection,, which was fine. I didn't have any side effects from it. I felt that it did help me, but consult said that it did not work as much as she wanted.

I have just started another biologic, abatacept, so am Hoping I will get a good result. These drugs do sound scarey, and I was nervous in the beginning, which I think is a perfectly valid reaction, but, as I'm with everything else, there are always risks attached, but,, if they are making us feel better, and are stopping further damage,, then thats all good, in my opinion good luck x

[whirlygirl in reply to lab-lover]

Hi Lab-lover, Thank you so much for your input, it sure helps me to hear from others on this. I guess I am just having a hard time adjusting to the need of being on meds.Healthy all my life and was hit with this over night, so I am having some difficulty taking these meds. I really wish you well on the new drug and hope its the one for you. Thanks again

[Hidden]

Hello

I have Psoriatic Arthritis, had it now for over thirty years and done all the DMARD and started again on METAJET.

They were going to start me on biologics last year sadly I was concerned about them causing cancer, Now moved house and GP, my old GP was reluctant for me to go on these medications, He changed his mind when He knew I was changing surgery, so now if MTX injections do not take they will put -TNF

back on the table so will just have to wait and see. I a not that keen.

Now I am sixty three and they say the risk compounds, so the RA Nurse, the one I had before is also going back to the recommendation that I be considered for that treatment again. So will wait and see. I do not know how old you are as the risks are more when older and the medications can prove expensive, although going down in price now Interested too see how you get on

BOB

[whirlygirl in reply to Hidden]

Hi there, Like you, my concern is also cancer. I explained my fears to my Rhumy. He then told me my chances of cancer, heart etc were much more likely with untreated RA than with the biologics. I am 67 years old, healthy all my life and have always hated to even take an aspirin. I have had psoriasis since the age of 15, mostly on my legs. My Rhumy has had me on the othe drugs but I get side effects. Still on 25 mg injectable methotrexate ( hate needles LOL) I have been taking 20 mg of prednisone for flares and celebrex 200 mg. I will post to how the Enbrel is doing and how it affects me. First shot I know will be the hardest. The drug is expensive , but there is help if needed. I really appreciate hearing from you on this, I guess I need all the support I can get and I would so love to give that support back when needed. I will keep you posted on how I am doing on the Enbrel. Thank you so very much for replying, it helps.

[Hidden in reply to whirlygirl]

Hello whirlygirl

The whole problem with our problem it effects so much of our lives and those who are brave and marry us. They get lumbered with all the housework and heavy gardening

My pains and skin go periodic flares and now I feel that I have a good idea when it will happen, although pain is always like background music, it can get at you over time.

I am now on Metajet,10mg, celebrex 200mg, tramadol 2x4 50mg daily, amitryptalene 75mg Citalopram 20mg and statins etc. I also have a V tens machine.

Will be grateful to see how you get on

All the best, good luck

BOB

[denvajade in reply to whirlygirl]

hi Whirlygirl, you have had it bad to have psoriasis since 15, feel sad for you and wishing you all the best, I have whats called indicators of myeloma(bone marrow cancer) do you know if this could be caused by methotrexate? cheers

[whirlygirl in reply to denvajade]

Hi there, I feel very bad for you, its a scarey situation you are in. I don't know the answer to your question but all the ra drugs make me question this. This is my fear!! Please keep us up to date on your progress. I know we all care. Thank you so much for taking the time to answer me, I appreciate it very much. Keep us posted!!1

[francherry]

Hello whirlygirl, I am also starting Enbrel (on Monday) and very nervous about it. It's my fifth drug (I tried 3 DMARDs first) and second anti-TNF. In my case, I'ved already sustained bone erosions in multiple joints and have been told that my RA is aggressive and that there is no other option to reach remission. For a long time I was in denial about taking biologics because I don't tolerate drugs well but have gradually come round to taking them. I'm trying to see them as something positive that could transform my life & enable me to do things I can't currently do and not to dwell on potential side-effects too much. Easier said than done, I know. Good luck with starting it. Fran.

[whirlygirl in reply to francherry]

Hi there, I also have bone erosions and a anti-cpp of 250, makes me very nervous.I guess we can be nervous together about taking Enbrel lol.It helps to know I am not alone in feeling this way Like you, I figured this would just run its course and go away--denial--for sure. I know now that is not going to happen. Your outlook is awesome and I need to do the same. Good luck to you and thanks for the feed back, it helps immensely.Please keep us posted to how you are doing. We care.

[cathie]

They do monitor you v carefully when you're on anti tnf. I was on it for ten years then drs thought I was on remission, but it was just med induced remission. You need to be sure to have bloods monitored regularly and take whatever they say, like folic acid for methotrexate, but it would encourage anyone who is offered it to go for it.

[whirlygirl in reply to cathie]

Hi Cathie,I am being monitored and go faithfully for my blood tests.Did you have any side effects from the biologics? Have you ever achieved remission and been able to come off the drugs? Your encouragement sure helps me where the biologics are concerned,10 years on these are a long time. Thank you for answering my post and please take care.

[cathie in reply to whirlygirl]

I was on med induced remission for a long time. I'm off infliximab and methotrexate now but not doing well and am hoping they will try one of the newer anti tnfs again. Whatever do make them

Make any change .gradually. Only side effects were from methotrexate - the usual gut upset but that settled down eventually

[claireyj]

Hiya , I was exactly the same as you with all the meds I've had to take and like you my RA happened over night, before that I rarely took paracetamol ....! I tried the dmards alone but the RA is too aggressive and the only thing that relieved the flares and pain were steroid injections, so I'm now on the biologic Cimzia. I was terrified before taking it and at 43 with two young kids also really worried about the cancer and Ms risks but if I tell you it's changed my life I hope that will make you feel better :). I started Cimzia in Sept and it's literally given me my life back , we all have colds at the moment and I can say this is the first time I've had a few niggles but apart from that really it's been amazing. I swim at least 60 lengths twice a week , walk and run round after my kids last year I couldn't even get the downstairs. I do know I'm lucky and also that one day my body will probably not react as well to Cimzia but there are now a few biologics and my rhumi team would probably change it , I only wish more people could get on them as I strongly feel that the benefits out way the risks - please do not worry as Cathie said you will be monitored just keep up with the blood tests and think positive , good luck - lots of love Claire xx

[whirlygirl in reply to claireyj]

Hi Claireyj, you sound like an amazing person, very positive. You are so young and with 2 kids to chase after lol. Cancer is the biggest worry for me from these drugs (from the frying pan in to the fire ) so to speak. You are an inspiration and you do give me hope that things can get better. I have always been a busy and outdoorsy person, blessed with good health, this has been a shock to me. Still having trouble believing this has happened. Thank you for answering this post and I would like to send good luck and love back to you. Your input has helped me, thank you .

[wiliby]

Hi, my story very similar to clairyj. 2 kids, couldn't,t walk. Now work and very active. Only side effects I had was low white cell count however they stopped the methotrexate and I,m on enbrel alone and white cell count raised again.

No side effect, the worst thing as you say was the fear of taking it but I wouldn't,t change it for the world now. Has given me my life back. I was worried sick at first but as mentioned you will get monitored closely, now I don,t give it a second thought.

Wishing you lots of luck

[whirlygirl in reply to wiliby]

Hi there, another positive outlook, and oh how I need this lol. I cant imagine having small children to care for with this disease, it must be very hard. Is there any chance of you going in to remission and coming off the drugs. I am very curious about this. My daughter got this disease 2 years before I did, even though there is no sign of it in our family. She has been in remission and off drugs except for plaquenill and is running every day and going to the gym. She is a very positive person and only looks at the upside. I wish I could be like that right now, maybe I will get there lol. Thank you for the encouragement, it sure helps.You are a sunny person, you bring light. Thank you so much!!!

[jeanabelle]

Like some of the other on here, before going on bio's I could only shuffle, couldn't comb my hair or was myself, every movement was agony. I have been on Humira, Enbrel and Tocilimab. I had reactions to all of these.

Now I am on Abatacept and I am a new woman. I'm getting physio for the joints that aren't perminatly damaged and I can walk at a brisk rate these days. Still can't brunch the back of my head due to perminatly joint damage but I have nearly all my old energy back. I walk my two dogs in the park everyday now for about an hour.

Also I'm 64 now in April and I do understand the cancer fears but I am enjoying my life again and what happens will happen wether I worry about it or not. I'm taking advantage of what I have now......that's they way I look at it. All the best. XX

[whirlygirl in reply to jeanabelle]

Hi Jeanabelle, So happy you have found a drug that works for you and has given your life back to you. I hope I get those results to. I think your attitude is right on, worry solves nothing. I am learning this, so slowly. I see you are an animal lover, so am I. I have 2 strays I have taken in and I thank God for them every day. Love your outlook and keep living life to the fullest. I sure will , if and when I get that chance. Keep well and all the best to you!!!

[Susiej38]

I too am getting ready to start biologics and am on Methatrexate injections (20mg). For me, I am willing to try anything that will give me some quality of life. Right now my life seems to revolve around when I can take next pain pill and where pain will be from day to day. To me this is not living. I am 64 years old so that may affect my attitude somewhat. My niece who also has RA and is 38 years old is on MTX and biologics along with other meds lives a full life and does pretty much whatever she wants!

[whirlygirl in reply to Susiej38]

Hi Susiej38, Thanks for replying to my post. I wish you success on the biologic and really hope it works well for you.Your niece seems to be doing so well on these drugs, lets hope they work for us as well. Pain does take the joy out of life , for sure. I pray both of us get the joy back . Fingers crossed for both of us. Would be interested to hear how you are doing on the biologic.Good luck, my thoughts are with you!!!

[Wildschonau]

I have been on enbrel since October. It has been great and I am now in remission. I could feel the difference the very next day. I hope you have the same outcome.

[whirlygirl in reply to Wildschonau]

Hi, so happy to hear this.Takes some of the fear out of it for me.Hopefully, it will do the same for me.Thank you so much for letting me know this, it helps.I wish you continued success with this drug and hopefully , remission. Take care!!

[Susiej38]

Dear Whirlygirl,

Sounds like we are in a similar situation taking Injectable MTH, Pred, and getting ready to start biologics. Hope you have success! I would not want anyone to hurt with this disease, but knowing there are others with same fears and frustrations is keeping me going.

[whirlygirl in reply to Susiej38]

Hi Susiej38, you are right, this is an awful disease. Progress has sure been made but we need a lot more. We do seem to be at the same place with this disease. Knowing there are others in similar situations that we can reach out to for support, sure is a big help. I wish you success on this biologic, pray it works for you. I am always ready to listen if you need an ear. Take care, hugs!!

[denvajade]

thankyou whirlygirl, it is a worry and it is constantly with me as food is such an issue, all food affects me.

I have now stopped my injections to give me a break and see if that helps. thankyou again for responding

[whirlygirl in reply to denvajade]

Hi, yes it is a worry, but you hang in there, there are lots of us who care. You are in my prayers, stay positive and please keep us posted on how you are doing, hugs!!!

[Tessthomy]

Hi whirlybird, a bit of a late reply but I thought I'd tell you my story, I've also been on embrel for about 3 years and also mtx injectable (couldn't tolerTe pills) .. The mtx can still make me a bit nauseous but the pills were much worse..the embrel causes me no side effects. I think someone said above that their consultant said the side effects of RA are the same if not worse if you don't take the drugs.

I ride my horses most days and muck out everyday. I teach and play the piano, so there is hope and these drugs are pretty miraculous. Bite the bullet and get on them, they will give you your life back. Good luck and keep us posted TT x