Dear folks, as we know we need to reduce the stress in our lives, but lately I've been really stressed over this disease attacking me and what meds to take to make my life livable. The doctor is on vacation, so I can't get help there. I've been 'told' to get off of the prednison, but when I try to reduce it I hurt!, the methotrexate didn't help yesterday and ,in fact, made me feel WORSE--better later, don't know if the expensive and complicated "infusion' of Remicade is helping??? So, everyday I wonder ,How am I going to deal with the stiffness? How much prednisone? How little? I know others who write on this board feel the same way--very confused! If anyone has any suggestions please respond as I'm feeling really 'bugged' today. love ya, sarah
Who told you to get off the pred? The doc? How fast are you reducing it? How much or how little pred depends on you and you alone. It is different for everyone. But please do not be reducing it unless you are under orders from your doc and following a tapering schedule that he has written for you. We do not produce enough corticosteroids in our bodies on our own (they take care if inflammation in the body) so that is why we often need pred and often why it is difficult to wean off. It is also dangerous to wean off unless it is supervised by a physician.
Sometimes the mtx will make you feel icky after you take it for a bit. Are you injecting or on the pills? Please do not forget this is a chemotherapy medication and bound to have those kind of side effects. It can take anywhere from 2 weeks to 12 weeks for any of these medications to work.
Dealing with the stiffness is kind of individual. Hot showers, hot baths (if you have someone to help you in and out of the tub), if you live where it is still a bit chilly a heated blankie (love love love mine), heating pads, hot rice packs, I have this neat thing called a bed buddy I stick in the microwave and heat up, getting up every morning a little earlier than normal to work some of the stiffness out before getting your day started, a little yoga helps (check with doc first), and other things my morning brain can't think of that other people here will lol.
Have patience hun. Sometimes it takes trying a couple different combos of meds to get it right. That is completely normal.
Patience is the word. I know everyone tells you to get off of the prednisone, and yes, you should, but reducing or quiting it all together must be monitored by your doctor. If you have it, use it. Don't suffer needlessly. Let your doc know that you are not getting relief from the meds you are taking. I've found that a lot of people feel kinda yucky after starting Mtx.
To be totally honest with you, if you've had 3 infusions and you're not feeling any better, Remicade may not be the way to go. Every one I know has felt much better after the 3rd infusion. I myself, felt like a new person after my 2nd infusion. I don't want to scare you and of course, everyone is different.
I know it's hard to do while you're hurting but try to be patient. You will get to feeling better.
I was on pred until the meds made it possible to taper off - when I did taper off I did it very very slowly. Don't rush going off the pred and ask your rheumy for his advice. Pred can really help you keep the inflammation down so the meds can do their thing - so don't worry much about tapering off the pred till the meds do their thing. Hugs and good vibes.Hurts - Patience is definitely the word, no matter which RA drugs you're taking. MTX, for example and as many have said, can take months and months to win the battle over RA and is claimed to be successful in 8 out of 10 cases. Pretty good odds. Of course, these days they often prescribe a second drug to go along with MTX which can increase the success rate.
I agree with the above comments re coming off pred. It must be done slowly, under doctors supervision.
So hang in there, you'll get the benefit of the modern drugs one way or another, sooner or later. As for the pain...when mine lessened to bearable levels I found it hard to remember the "bad old days" when my RA was raging. So, good luck, I know there are times when you think it will never end but you have a very good chance that it will. Des.
I just had this conversation with a friend last night. I'm very confused over this whole process. I'm the type of person that sees a challenge/issue, comes up with a plan and fixes it. I can't with this and that's a hard pill to swallow.
I'm going today for my 3rd appt. with the rheumy. I'm on MTX and Prednisone, and have been doing acupuncture. I've had 24 acupuncture appts. at each visit, out of pocket. I can't continue to do that but I wanted to try anything to get my life back. I have been on MTX for 2 months, and don't see any difference. I had the relief from the prednisone, added the other in along with acupuncture and no change. I'm on 15 mg MTX, and 10 mg. Prednisone.
I've been told over and over, patience.... I'm trying. Some days I have a big smile on my face and can pretend everything is okay. I push myself to continue "life". Other days, like yesterday, i wanted to be in bed with the covers over my head and just cry. i didn't do that, went to work and went out for a pedicure and dinner with a friend. But really, it is so hard to understand this disease. I feel like a big ol' jerk when I whine or cry. I hate losing control of my own body or my emotions. So, bottom line Sarah....I'm with you on this one. (((Debrakay))) I am so sorry you are having a hard time. RA is such a beast that is hard to tame. Have you talked to your RD about adding a biologic to the mtx? I started out with mtx, plaquenil, and pred. No results. Then we added Humira and I was actually able to tame the beast for a while. Until I got sick and did the roller coaster of on meds off meds all fall and winter. Now that I have been steady on the meds again, I am regaining my strength and returning to daily life and daily functions. It's a slow process, but I'm getting there.
Please don't feel like a jerk when you cry. It is perfectly normal. I have been officially diagnosed with RA for almost 14 years now and have had ups and many downs with it. IT IS OK TO CRY!!! We are grieving the loss of our previously normal active I am in control of my body and life. We do not have that anymore and it is a whole lot even for the strongest person to deal with. I can't tell you how many times I broke down over last fall/winter because the RA was out of control. And I am by nature a very strong patient person. I just flipped out because I have a simple head cold and the thought of going off meds again makes me want to go hide under a rock somewhere. But I don't need to it's going away thank goodness. But I still had to have that moment of breaking down. We go thru so much physically with RA, that sometimes it is forgotten that a chronic illness also has a very emotional side to it. Unfortunately, sometimes all we can say to people is hang in there. I really wish there was more we can say and do besides I understand where you are coming from but please hang in there.