What a trip this has been! Yesterday I saw my rheumatologist and here’s what happened. He wrote out how I’m to wean off of the minimum 70mgs of prednisone each day. He frankly said I will definitely have severe complications which could lead to a premature death if I don’t get the prednisone down to under 10mgs a day. He put me back on methotrexate and folic acid, and added an anti-inflammatory to my long list of meds. He’s hoping I won’t have to take so much Motrin for pain while taking the anti-inflammatory. I’m starting a very easy exercise program come Monday to try to encourage weight loss along with decreasing the prednisone. I haven’t been able to exercise in so long because of the pain. But, I’m going to get moving, if only for five minutes to start. The nurse asked me my weight. I told her. When she left the room I got on the scale and was fifteen pounds heavier than the last time I weighed myself. That was a reality check. I’m cutting back on carbs as well. The doctor said he’s confident he can get me feeling better and not to give up as I’m currently bedridden for the most part. I pray this chemical cocktail I’m taking helps me so that I’m able to do more, especially because I have a 7-year old. Well, that’s my update, just wanted to share. Thanks.
I hope this works well for you. When I first started my exercise routine it was for a min at a time lol. It really helped and I am still doing it today after I gradually worked my way up to 30 min
Congratulations! I’ll only be doing a minute at a time myself. But, it’s better than nothing!
Thank you, Ann. Much appreciated.
I'm trying to get back into the gym again, and you're right a minute is better than nothing. I feel so much better when I'm exercising..... I hope you will too.
Thank you. It’s tough because I’m in so much pain and I’m overweight. So, I hope I don’t have a heart attack. That’s why I have to start slowly and not overdo it. It sounds good today. Let’s see if I can actually do it tomorrow.
Good for you Kim! Sounds like you're on the right track starting slow with exercise. I do it in increments since I have such low tolerance and my body is in a weakened state from being inactive for so long. Lowering my carbs also helped lower my pain levels. Bonus. :') I get bored with most exercises, but I bought a cellerciser rebounder and I use that every day because I actually enjoy it. Feels like fun to me. Find something you like and you'll stick to it.
I’m in a similar situation. I started on the tread mill last month. At first I could do about 2 and 1/2 minutes. I’m up to five minutes twice per day and not wanting to cry when I’m done. I’m off prednisone now, so I’m hoping for a little weight loss. My husband and I joined weight watchers. I’ve lost 5 pounds, he’s lost 20. It’s frustrating in the extreme, but 5 pounds is 5 pounds. Sorry I ramble, my point is that the tiny changes can have an impact over time. You can do it. Just baby steps, and don’t give up.
Thank you for the encouragement. I understand how frustrating it can be when your spouse can lose weight so quickly. My husband is trim, as is my son. But, I’m hoping with motivation and encouragement I can begin to lose weight. It’s going to be a long haul, but anything is going to be better than the status quo. I admire anyone with this disease who does any kind of exercise. I know it will be difficult. I’m also planning on cutting back on my carbs starting tomorrow when I start the tread climber. (I had pasta for lunch today to get it out of my system.) I’m trying not to be overwhelmed with how much I have to lose, etc. I just want to focus on small goals. I’m nervous about failing. I just have to do what I can and try not to think it’s not good enough.
Hi, I can totally relate to how you are feeling ! Been there done that! My doctor told me that he wants me to stop taking it . Oh no!! Is what I told him No that will not be going on -Stop!no ! But we agreeded on 2days of the week to take the prednisone out of a 7 day week! Sound good for me, I have been on the same meds since day one of Lupus ,Feb.2011 along with the same doctor , and to stop! That won’t happen not in this life time. The reason he says , is he don’t want the kidney to become weak /demaged , I understand that because my Lupus was in the early stage and now it is under control , but to stop, naw that’s not happening, well hope that you feel just a little better to know that you are not alone…Beverly L.
Thanks Beverly.
Would you believe I started getting sick yesterday and today have a full blown cold?! I’ve been coughing, sore throat, my ears hurt, my nose is stuffed up… I just feel horrible. I was supposed to start exercising today, but I can only lie here feeling miserable. I’m drinking a hot, natural remedy to help with my throat and symptoms. But I guess this will just have to run it’s course. I’m so disappointed because I wanted to start today with a bang.
your doctor is a good one!! he is 100% right that pred or steroids will kill you!
I have severe pain, many things wrong with my joints due to RA and have other arthritis in other areas plus other things that can cause great pain just on their own. The thing about pain is that not moving actually causes you more pain. Study after study shows this over and over. I get it when you are hurting this is the last thing you want to do but you will feel better.
Since you are bedridden you might check out this game to help bedridden people get moving again. It is called SUPERBETTER...just search for superbetter.org and should pop up. The woman behind it was bedridden herself and devised this game to help herself and others! You can watch her talks on TED Talks online if you like...her name is on superbetter site. Plus, you might check out people who helped her as they have some great sites that i found have a great deal of information about pain and how it works in our brain. Plus how to deal with it.
Pred itself is going to be one of the main causes for your pain and discomfort. People do not realize this till they get off of it. Plus it is going to take a very long time to get it out of your body at those high numbers. A shot takes 6 months...that is one cort shot in a joint.
Have you had bone density test recently, last year? You should have one asap as your bones might be ready to snap...and you really need to start walking at least to help get some weight bearing on them to build bone back up a bit.
If you have any critters...ask your vet about how long one of them is expected to live if taking pred pills daily. That might really give you the push to and determination to make it through weaning off period. You are going to feel worse because your body has become dependant on your pills. So just be prepared and realize that sooner you do this, better you will feel and longer you will live....you want to see grandbabies? !!
It can be done, i do not nor have i take pred pills regularly for my lupus. I rest in flares as needed. I did work at pt most of my life. Not saying it is easy but it can be done. i did use metho and a biologic now. Even the side effects on them worry me. metho did help...really slowed my ra down.
I sincerely hope you heard your doctor, if not for your family sake. You might tell them so they can help you along through the next few months which are going to be hard. Be your cheering team maybe, or friends?
I help cheer you along if you need it!! i rather have you live as healthy long life and get out and see this beautiful world of ours...than bed ridden and on drugs that can shorten your life radically. GOOD LUCK !! i will be praying and believing in you!!
just even get out of bed and walk a bit if you can..even with a cold after few days you should be able too. You might consider getting a small dog that make you get out and walk it daily!! or even kitty...my friend walks his house cat on leash outside daily! In a large city so it is safer for the kitty.
I really would like to see you get better and live long!! like that for all of us, including myself. reading about heart attacks in women today..yikes. won't go there but just at times you feel gee..we have all this inflammation already...are we doomed?
Then i think of women before me with lupus...and most lived till their 70's and much longer...they rarely were on pred pills and really older did not even have metho or motrin till they were in their late 50's. Yet, they still had great lives! I hope this encourages you!! sorry you have the cold....just do what you can take care and really wish you the best
Thank you so much. I appreciate the support. I need the encouragement from people who really understand what it’s like to live with chronic illness. I’m trying to start a support group where I love for people with chronic illness. I’m working with my rheumatologist and local hospital to make this happen. I feel it will also help me as well. I believe everything you’re saying. I read a lot and know I need to get moving, thus the resolution to get on the tread climber. I’m just aggravated that I have a cold now! But, it will pass and I am going to get moving and off the prednisone.
Ann, I can appreciate what you’re going through. I, too, love going in the pool. I’m sorry you can’t do that at the moment. It’s sometimes hard for me to keep the faith. But, people like you who encourage me are truly a blessing. Thank you for the cheers. The Christmas tree is down. I’m hoping the tread climber will be in it’s place when I go for it. I also need to learn how to adjust it. Ugh.
Just getting to read this now. Wow that’s a lot of stuff you are going through. …and even more info here to take in. It’s a little scary, but you are going in the right direction.
You can count me in , I’ll be on your support team. Grace
Thanks, Grace. I need all the support I can get.
Hi Ann A! that sound good to be able to go to sleep/bed before 1:00am. I've been trying to do that also -sometimes it works and other times am in the bed and can't sleep . Ha!Ha! How are you doing ? am okay , just can't shake this headache for the last couple of days -smile ....Beverly L.
Ha!Ha! that is funny- LOL yes that is something that i try to tell people who really don't know the pain we have and what it makes us with LUPUS just want to die !!!! not in reality . My saying that i tell people & my doctor when the pain is really bad , i'i just want to cut that part of my body off and go to the grave and get a new body part to replace my own - Ha!Ha! yes the looks are crazy but for a moment it really sounds good to me Well hope that soon you feel better ! smile talk with you later ...Beverly L.
I like SMART. Good to keep in mind. I’m really sick with a cold that only makes matters worse. I just want to wake up feeling better.