Enbrel questions again, redundant i know! | Arthritis Information

I have now had 6 injections of enbrel. I was very reluctant to try it at first but finally stepped up tp the plate.

When I began I asked the nurse educator how I would know if it was working because my pain was almost non-existant. I did have swelling and redness.

Now I'm on both MTX and enbrel and my toes have have hurt consistently for 5 weeks.

I was just reading another post and realize I'm fortunate to have limited pain.

I've had site reactions I've come to terms with but I can't come to terms with the discomfort.

I'm not exercising at this point. I got off the treadmill recently and realized Id better give my toes a break.

I'm discouraged. I talked to my RD and asked her if I could take a short dose of low term prednisone. She said no with no expanation. I don't feel comfortable taking any higher dose because of some issues I have and I think that makes her angry. Actually her answer was that I have active disease but no suggestions for relief.

My next problem. My RD, although good, is very intimidating. Kind of a my way of the highway type of person. I dread calling her again and I dread trying to find another RD.

I'm thinking about just doing a week of prednisone asI have some left over or do you think this is a bad idea without her consent?

I t seems quite ironic I should have a flare just as I was starting Enbrel but I quess it's possible.

I'm disappointed and confused and don't really feel I have the support of my doctor.

I decided to start enbrel to stop the progression of the disease and to do whar the doctor had been suggesting.

I got worse instead of better and I've read such favorable results.

Any encouragement and input would be appreciated. Thanks.

Dotty,

You are likely going to have to deal with this disease for a very long time, if not all your life. It's important to have an RD that you feel comfortable talking to. Sometimes, a patient and a doctor just aren't a good mix. I suggest that you find another RD.

I would also be concerned about going to a doctor that would do nothing to give me some relief. When I have an occasional flare, my RD always gives me a short run of prednisone. He wouldn't want me taking it all the time if I can help it, but he has no problem with the occasional use of it. He also gives me Lortab to take on an as needed basis. If my RD did nothing to give me any relief, I think I'd feel he had no compassion.

I really hope you feel better soon.

kweenb2010-01-09 07:10:59Thanks so much for your reply.

I'm sure some of the problems with my RD are generated by me but by the same token I've had good relationships with other physicians so I know it can be done.

I really appreciate your feedback.

I think I'm going to call with my concerns again on Monday and perhaps try to determine my next move partially based on her response.

Boy I wish the Enbrel had kicked in, then I would be able to put this off for a while!

Thanks again.

Hi Dotty! It may be that the Enbrel just needs more time to work. When I first started Enbrel, my RD said to give it up to 3 months. I wouldn't take the prednisone on my own, you may have some red flag on your labs your un-talkative RD didn't share! I would start a search for another RD and I doubt very much your relationship with this person is your fault!

Can you go to your PCP, explain you are in the midst of searching for a new RD and ask about a dose of prednisone to get you through your flare?

Best to you Dotty, and don't give up!

I was also told that it could take 3 monthsI really appreciate your replies. My RD is will ing to prescribe prednisone, but I only feel comfortable taking it in a very low dose, 5 milligrams, due to some other health issues I have.

I think that's why she may have said no to my low dose request. I certainly feel I have valid reason for concern.

I am going to to work on my courage and try to call her tomorrow as my toes are pretty uncomfortable.

I do feel I may have to make a change, my options in my area are pretty limited but I ned to feel comfortable with my doctor as well as my feet!

I'm worried about the swelling and every morning I hope the enbrel has started to work.

Thanks again for your kind replies.

I agree that looking for a new Rd. You need to be working together

and feel comfortable with talking to your Rd.

Also have you tried soaking your feet in epsom salts?

I do that and it helps alot with the pain and swelling.

Hope you start feeling better.

Dotty,

What about some anti-inflammatories? They only take the edge off for me, but any little bit helps.

I just eanted to dlarify the prednisone issue. My doctor will prescribe pred but likes to start at higher dosages and taper down.

The concerns about pred were were mine not hers. I have some issues and I only feel comfortable taking no more than 5 milligrams of pred. She really doesn't agree with this.

Now I am thinking about seeing my podiatrist. I have tendonitis, which has taken a back seat to my swollen toes. I'm think an injection might not not only help my tendonitis but also my toes.

When I first presented I had very swollen hands. I had bursitis as well. I received a injection which not only helped my shoulder but really helped my hands foe a few days.

I think I'm taking myself much too seriously, but I would would really like my feet to feel better! As I'm sure everyone would!

Maybe she's adverse to pred as it might mask the progress of the enbrel, not that there is any yet.

Thanks again. I know my problems are minor compared to most of yours so I really appreciate your considerate responses.

I've been taking mobic, switched to Aleve and think I will go back to mobic.

Dotty,

A burst-and-taper would be better than the 5 milligrams. Can I ask what your concerns are with the burst-and-taper of prednisone? My RD doesn't see a problem with it as long as I don't do it very often.

I have had some problems with insomnia. I've read that high does of pred can really worsen this so I worry.I don't experience the normal side effects that a lot of people do. I even lose weight when I'm on it and I know a lot of people gain. It doesn't cause insomnia for me either. Maybe you wouldn't experience insomnia. If you do, you could also think about taking something for insomnia during the time that you're on the burst-and-taper. Just a thought. My doctor returned my call and was very helpful and kind. She said enbrel could take up to 4 months to be effective.

She is calling in a prescription for prednisone. 10 milligrams for 2 weeks, 7.5 for 2 weeks, 5 for 2 weeks and off.

I asked her if she would be mad if I didnt have the courage not to do it and she said no, just tell them so it could be noted in the chart.

She offerd pain medication which I declined for now.

She definitely said not go for walks , use the treadmill, etc. as that would strain my joints.

She suggested I do continue to exercise though. I'm a bit stumped as to what to do any advice would be appreciated.

Kweeb, I appreciate your input, I thought it was very helpful.

So, I'm happy with my doctor again, that makes me feel much better.

Dotty,

I'm so glad you are happy with your doc. It's so important.

I tried Curves once and it just about killed me. I told my RD and he suggested swimming. I joined the local Y and swim three times a week. I love it and I think it really helps.

Copyright ArthritisInsight.com