Hello all,
I haven't posted much but I am here everyday, at least twice a day reading everyone's post. I just had to reach out tonight, I feel bad. Since comming down with ra I have not had but a few good days. Everyone talks about having a flare, will i guess i have had one since day 1. Enbrel and humira did not work at all. I am starting remicade on Monday. My doc up my pred to 20 mg and I can't hardly stand to be me
Sandra
Hi Trinity,trinity 2005,
Took me over a year to get below 20 mgs of prednisone. I also take 25 mgs of methotrexate and 50 mgs of enbrel and am changing to humira next week (scarey, scared).
They will find the right mix for you, some of us are just difficult patients. I used to be discouraged and is just another side effect of RA. When you start feeling better it will feel so good. As everyone always says, "The sun will come out tomorrow, bet your bottom dollar that tomorrow will be better than today". Some tomorrows just take longer to get here.
LEV
Hi, Sandra
I could really identify with your post -- lots of similarities there, although I am not nearly as bad off as you are. I also came down with RA in about October of 2006 and have just steadily worsened. Its been in my hands and feet and gets a little bit worst all along (certainly no better). Sometimes it feels like rats are chewing my finger joints!
But I can still walk and use my hands. I started on Methotrexate 12.5 mg and Prednisone 10 mg in January. I went back in March to the RD and I could tell he was a little disappointed in my progress, or lack of progress. So I went on Enbrel and went back in a month. I couldn't tell any difference from the Enbrel so he switched me to Humira and I have just started it. Looks like it might not do any good either.
About your pain -- I also take Norco 10/325 and they really only take the edge off the pain. For me it works better if I take it along with a couple of coated aspirin. Usually 1/2 or 1 Norco and 2 aspirin to get going in the morning along with the Prednisone and Folic Acid. I didn't realize the aspirin helped so much until I ran out of it one day.
My brother has a bad back & other problems and every now and then he lends me a Methadone tablet. This truly cuts the pain entirely for me. (And there is no tylenol in it--I'm not sure all that tylenol we're getting in pain pills is that good for us.) I'll take it at night and the pain is still gone well into the next day. Just a thought that you might want to discuss with your doctor.
I feel really bad that you are having such a bad time. I know how easy it is to get really depressed with this disease. I find myself wondering about building a wheelchair ramp or if my doorways are wide enough...and I am still walking just fine! My doc increased my Effexor FX anti-depressant to 150 mg and that helps offset the depression.
The tiredness really gets to me; some days I have slept 12-14 hours.
Anyway, I am rambling on....Good luck & I hope you'll have some better days ahead.
Sorry you're feeling so bad..it sounds awful. Though not as extreme as what you described, I also had a lousy first year with my RA. It wasn't constant but the flares were pretty frequent. I remember once my shoulders hurt so bad I could barely use my arms. I made the mistake of sitting in a recliner with my feet up..then couldn't get out. I finally managed to roll out, but the pain was so bad I was sweating and almost threw up. It was terrifying thinking I might spend the rest of my life like that. After that first year, however, things got better quickly. It took over 6 months but the MTX finally started working at a dose of 20mg per week. The change was pretty dramatic. Since then I've done pretty well...for almost 5 years now...on Humira now. So don't give up hope. A lot of people have had similar experiences where the first year was the worst but eventually they were able to find meds that helped them improve dramatically.
Good luck!
Alan
Hi, my thoughts are with you as all the other's have said. It takes a long time to sort out these meds, so don't give up hope! depression is understandable 'we lose our lives' as we knew them. You have children that are just starting out their lives and doing exciting things, my gosh, I know you will be better soon. I'm taking remicade now, and people keep telling me ....be patient , it will work. But, I don't know....good luck, (as I'm typing this a mocking bird is singing to me outside my patio window , I live in California), sarah,Sandra.....I'm real sorry to hear you're having such a hard time. Don't give up.....you can do it.
Hang in there.
Sorry to hear you are having such a hard time. I am hoping the remicade works for you and you start feeling better soon.
Lev....what are you scared about with starting the humira? Like Alan, I have had great results with humira. Like the enbrel, keep it in the fridge. Warm it to room temp before you inject and that seems to help the burning a little bit. I take mine out of the fridge, take a shower, and then go inject. You can go to the huimira website and get an info kit sent to you about it. It is free. Remember, this has to build up in your system and it may take a few shots to see any noticeable difference if it works for you. If you can, do the quick inject pens. It is over in like 5 seconds. And they are much easier to use than a regular syringe.
Trinity, Wanted to let you know that Remicade has given me a life. It's taken almost a year but I think we've finally reached the right combination of dosages for Remicade and MXT. I've felt better this week than I've felt in almost 3 years. Yes, my flare was 3 years long and I've gone from 35mg of Pred. to 10 mg. and will be continuing to taper to 7.5 mg. this summer. I have damage pain and have to take pain meds, my knees are waiting replacements, but I feel good.
Remicade may be the magic for you. I hope so. Take care and keep us posted.
Hi Trinity - my thoughts are with you. I've had RA for 17 yrs and am having a bad flare now aswell. The best drug I've taken which gave me 8yrs remission was good old gold injections. Unfortunately they've lost their efficacy now and I've run out of things to try. Biologics only seem to work for 2 out of 3 people and Humira didn't work for me either. Have you tried other drugs before the biologics. They say if you fail one biologic another is less likely to work. Methotrexate did nothing for me nor did Placquenil but Gold did and I felt like a new person so its just a matter of finding out what works for you. Its such a long frustrating process.Hi Trinity, I am another one who has constant flares, can never seem to get my ESR under control, have been on pred for 7 years straight, have tried most meds including biologics, but I am complicated and have allergies or intolerances to most things including Enbrel and Humira, Imuran, Gold, Penicillamine, Plaquenil, sulfasalazine, even MTX but I have to keep persevering with that one as its the least contrary of them all. Currently on 12.5, building up slowly since March 1st, so far just hair loss, mouth ulcers and diarrheoa. You will find the right combination but with all those meds out there and all of us are ill with varying degrees of RA, it must be hard for the Drs too. Make sure you have a good GP that you can really talk to, it took me a while to find one and I would follow her anywhere not to lose her, she looks after me better than any Rheumy or pain specialist. Best of luck, don't lose heart, it will be a battle but a helpful family and understanding friends will really help and of course us. Lots of luck to you Janie.I have tried Plaquenil, I broke out into a very funky rash. I am on 15 mg methotrezate I really don't feel like does nothing for me. The Enbrel did nothing and same with Humira. I asked my rd about failing one biologic why try another "Tnf". He said that all people are different and one might work with one person and not another. I am really not excited about starting Remicade. My rd said that I won''t be jumping through hoops anytime soon. I am going to mention that the norco for pain is not working. I am not sure what is next on the pain mangement ladder can someone give me a direction into what to ask for? I do have a great gp. She listens to me and really tries to help. Thank you for all of your great responses, i had a warm fuzzy moment. I haven't had one of those for along time.
Sandra
Have you been on Arava. It worked for me except for the bowel problems which made me stop it after 3 yrs. My rheumatologist says if you fail 1 tnf you have about a 30% chance of another one working. Maybe you should talk to him about trying another immune suppressant with the Remicade. Methotrexate seems to be the in drug but it did nothing for me but Gold and Arava did. Its all so depressing.Thank you
grammaskittles,
The reason i am a little apprehensive about changing from enbrel to humira is because just before posting my post that you asked about, i had just went to the AI humira board and after reading everones coments, i felt that humira would turn me into a pimple and boil ogre with red blotches. Also, i really had no bad effects from the enbrel after getting past the initial headaches that went away after the second month. Any way, i will make the change next week. Oh, the other thing is that i don't think that humira releaves the fatigue as enbrel does. Really, they could call enbrel the happy RA drug.
LEV
How did you get on at your appointment today.Trinity,
I'm sorry you're having a rough time. You're a little bit like me. It's been almost a year since I was diagnosed and I've felt bad for so long that I don't remember what it feels like to feel good! Humira didn't work for me either. I just had my second dose of Remicade. So far I think I'm not as tired as before, but that's it. My RD was disapointed that it didn't help even after the first dose. He said 70% of people feel results after the first one. I was taking sulfasalazine along with it but starting getting sick to my stomach after I started Remicade, so I stopped. I've just started Arava and hopefully this will be the combination to do the trick.
I've had a bone spur in my heel for a year so I had to stop fitness walking, I've gained weight because of that, and now my knees are giving me trouble! Then there's menopause....I could go on but I won't bore you any longer. Hang in there. It's got to get better. You just have to keep trying until you find what works for you. Good Luck!
I felt like Humira really gave me energy that I hadn't had in years. In fact it was the first sign for me that it was working. The fatigue was the first thing that was helped my Humira. The pain was helped a few weeks later.
We're all different though. What works for one might not work for another.
Lev....no I don't think it will turn you into a boil lol. But I can understand your worries with injection site reactions. Humira is a little different from enbrel but works in the same way. Does that kinda make sense? I know for my daughter it will be enbrel they treat her with and not humira. So it is somewhat different. I think you are right about the fatigue issue tho. That is the last thing I have to shake to get rid of this dang flare that I have had.
Give it a chance. If you have to go to remicade then ya gotta go there. But try not to burn a bridge that you haven't crossed yet.
Keep us posted on how you are doing on it when you start. Remember, this is another one of the wonderful drugs that has to build up in our systems before it starts to work.
lev
Try not to worry. My skin is better with humira than it was on remicade and I didn't get the headache I had with both remicade and enbrel.
The only complaints I have is that it really stings for a couple of minutes, and I think I'm going to need it weekly rather than every 2 weeks.
Been on 4 months with 8 doses so far.
Hi Everyone,
I had my first infusion of Remicade on Monday. My rd started me at 400 instead of the usual 325. He also put me on 50mcg of Fentanyl Transdermal system for the pain. He said that my joints are very swollen and hot. I really hope that the Remicade works for me. The patches for pain work very well. I have had some break thru pain took a norco for that. The itching from the patch is very irritating I want to claw my skin off, but I took some allergy pills for that and I am doing very well
Sandra
I am so glad that you are doing better and not in pain!!!!! Please keep us posted on how the remicade is working for you. If I could cross my fingers today I would!!!