checking in... nasal and mouth sores / methotrexate / restarting prednisone / brenda's wheelchair

[Guest guest]

Hi everyone

I hope everyone is having a good day. Happy birthday to everyone that I've missed being away, and welcome to all the newbies. I'm sure you've already found what a wonderful group of people we have here!!

It's been a few weeks (maybe longer) since I've been able to post. I just have NOT been feeling well, like lots of you. Aside from all the aches and pains, I've been experiencing overall weakness more than I was before. I have been in so much pain lately that it's painful to lay down to sleep. Soon as I get comfortable enough to sleep, my shoulders or hips start hurting so bad I have to turn. Then it starts on the other side. Even getting around with the wheelchair is totally exhausting. I used to have a decent amount of upper body strength that compensated for my lower extremity weakness, but lately just getting around my house is so taxing on me. This has been going on this bad for maybe two months, so my rheumy finally took me today.

She's putting me back on the prednisone (I came off in December because of the damage it has done to my skin and the weight gain) and I have to go back to her on the 29th. She said if I can tell her I am feeling dramatically better with the prednisone, she will put me on the methotrexate. I expressed my concern with this because I really haven't read good things about it from most of the people here, but she said we have to weigh the benefits versus how I am doing right now. She said that this is the first time that she was able to with out a doubt say that she feels joint swelling... she says it is difficult because of my weight. So she ordered, gosh, a ton of blood work, we're talking 13 vials!! and xrays of my knees to see how the arthritis has progressed. She also is interested in seeing if the miacalcin for the osteoporosis is helping any. She says she still isn't convinced that I don't have MS, so in three weeks she may be ordering another spinal :(

The sores I have in my mouth and nose are just horrible. I have more on my trunk as well, but not such a big deal, I put some desitin on it and they aren't as bad... for the nose ones I mix up some prescriptions from my dermatologist (Vytone and Bactroban) with some Blistex and neosporin. Takes some time to mix them, but it helps a lot! But I haven't been able to come up with something for those ones in my mouth! Blah! They are so bad right now it's like I bit into hot pizza and burnt the roof of my mouth and the blisters spread everywhere Anyone have a concoction for them? My rheumy said we may try some steroid mouthwash if they don't get better with the prednisone. My dermatologist said I could technically use the mixture I use for my nose in my mouth, but gads, that might not taste too good! I just use the Cepacol throat lozenges to numb them, they help a lot to make me more comfortable, but do nothing to help heal the sores.

Oh, I read over the side effects of the methotrexate that I think sent a link for. One of the side effects that might actually work in my favor, it lowers your white blood cells. This would be good for me, my white blood cells are sometimes in the 30,000s because my body thinks it is fighting off an infection and it responds by increasing them. They have talked about putting me on chemo to lower them, but maybe this will help. I'm just not looking forward to the nausea, it seems like I take compazine or zofran like candy at times as it is.

, I really hope you can get things worked out with your chair and harness, I'd be stuck--just plain old stuck--if I lost mine. And what a frigging jerk that insurance person was to say that you don't need the harness since you don't have a chair. Do these people not realize that when we call them we are usually under a great deal of stress as it is, and to say something like that just adds to it?!! How can they expect us to "live as stress-free as possible" when it's people in our service that stress us out so much? Argghhh... Do you have a second chair that you can use in the meantime? I wish I lived closer, I have two right now, my second one is upstairs and I try to get around up there with a walker when I can. I'd be able to spare it while you figured something else out, but it's probably not feasible to send it to you from Philly! :-)

Well, I hope everyone will soon be touched with some warm healing light... and we start experiencing less painful days!

Take care!Chell

[Guest guest]

Hi . I use a mixture of Benadryl and Mylanta for my mouth.

When it's really bad the doc adds Nystatin liquid to the mix. Be

sure none of this interferes with whatever else you are on...but it

works for me.

Hope you feel better soon.

Jerri