[Pamatha]

I have been a member for a little while. Just not introduced myself. I think that a I made one post when I was having some trouble a when I first joined. I have been struggling with lupus for a while. Been in a little bit of denial, thinking that there had to be some quick fix to this, but see now that there is not but there is hope for remission. It seems like just when I get to feeling better the doctors say, OK, lets weene you off of your prednisone. I take a ton of other meds as well but the prednisone is the one drug that seems to help and when I taper below 10 mg everything seems to break loose? I absolutely hate the side affects of prednisone. I have gained weight, have a fat pad on the back of my neck and on the sides of my neck by my collar bone. This whole thing is really beginning to make me mad. I have been struggling for 3 years now and I am become very frustrated with the cycle that I seem to be in. I do not seem to go more than 2-3 months without flares. Lately there have been times that I have looked at my meds and say to myself, "what is the point they don't seem to work very well?". I had lost 65 pounds and walked 4 miles everyday before I got sick. I had a life and cannot figure out what caused this, how it happened, what did I do? I see from this site that I am not the only one out there with this problem which is really sad but gives me a little strength in knowing I am not alone or crazy.

 

[Katharine]

Hello Pam and welcome

I'm sorry to hear that you are in such a frustrating cycle and I'm afraid I really don't have any great suggestions on that. Reading your post, I could have written it myself...I'm in pretty much the same boat.

I do know that things can and will get better but sometimes it does seem so far off. I think also that you can go a certain time before you run out of that happy denial. I'm at that stage now and I need to do something to make myself feel better. My way of doing something is simply to get a second opinion from another rheumy especially concerning some specific treatment options for tendon issues. I'm going soon and even if it is only to confrim that my treatment is on track and that I just have to keep plugging away then that, in itself, will be reassuring for me.

hugs to you :hug:

Katharine

 

[KarolH]

Hi Pam,

Welcome and so glad you decided to introduce yourself. I am sorry that your having a tough time right now and I can understand that your mad and frustrated. Life can really throw us some curve balls.

I do hope the meds work for you and that you get on with feeling better. Know that your not alone in the battle for remission. Are you working or able to be home and take time to rest and relax?

I see your from Iowa, beautiful country out there I hear. Never been, maybe someday. Anyway, you will find much needed support here from a great group of people. I call this place my home away from home. The support and knowledge I have recieved here is invaluable.

Come join us in the chat room sometime. I do hope to get to know you better and keep your chin up. Let us know how you get along moving forward.

 

[onetay]

Pam,
You are never alone with anything but it is hard to imagine someone having the same problems as you when it comes to lupus. It is a daily if not an hourly struggle just to act somewhat normal. Welcome to the site and a new place to get support from others just like you and some even worse. I like that this seems more like a community of people rather than a site. I hope to see you in chat sometime and compare notes lol. I hope you are feeling well and doing well.

 

[Maia]

Hello from another Iowan

I have heard from many others who report that 10mg being the tipping point for setting off an increase in symptoms/pain. So you're definitely not alone there... I am fortunate to have not been on prednisone for more than 5 months and will continue to be grateful for that. The 10mg or higher is the dose that helps with my symptoms when I'm in a bad flare too.

Have you tried seeking out a second opinion from another rheumatologist on medication management and seeing if perhaps some other lupus medication could be added/tried that may help you get off the prednisone? Sometimes a fresh set of eyes can see something that has been overlooked by someone else.

Also realize that many people will suffer for a few weeks from a drop in prednisone but if you hold on then it gets better and eventually you can get another drop in later.

 

[spellbinder]

greetings and salutations

hi pam

welcome to our sandbox. i can't add much more than what has been said, but i do agree that maybe you should either talk with your current rheumy or get a second opinion on your medication treatment plan. i personally haven't been on pred for years, but i do take a boat load of other things.

hope you start feeling better soon, we are all here for you to lean on, there is a wealth of information here to help.

feel better and take care :hello:

 

[lazylegs]

Hi Pamatha,

I am sorry to hear you are going through such a difficult time right now :hug:

Dealing with a chronic disease is a real struggle. Looking in the mirror and seeing a stranger staring back doesn't help your self esteem either. You have to try to remember you are still the same wonderful person inside as you were before.

I hope things turn around for you soon.

Take care,
Lazylegs

 

[iksyfaye]

Hi,
I, too hope you feel better soon. I have not taken pred, just recently diagnosed and started on Plaquenil...I can, however relate to the denial...I am not only driving myself batty, but probably hubby too...saying I am not sure I really have any of it... I ordered and just received the book on Lupus and on Sjogren's, and I just keep taking it step by step...Take Care,
I