Do any of you become panicked when you feel a flare coming on? I do. I’m always in pain but every couple months I go through 4-5 weeks of extra weird awful pains. I get anxiety over it and probably make it worse for myself but it’s so hard to control. I’ve been trying to get a hold of my primary and rheumo but neither are available the past few holiday weeks. My primary is the one who writes RX for any pain meds (but you all know from a prior post he doesn’t like that I’m on it) but he doesn’t want to be involved in any decisions with my lupus either so I don’t know what to do with that. My rheumo doesn’t have any appointments until February even for urgent stuff. So frustrating I feel I’m going cry and I’m so tired of this rollarcoaster. I know most of you know this story well! I just needed to share to people that understand. I feel the doctors are ‘fed up’ with me and don’t know how to help me. Do I ask for prednisone? Any other suggestions I can ask the doctor if I actually get to see one? I’m on Plaquenil and Wellbutrin and set to start benlysta (spell?) in February research study. I’m thankful I finally know what’s wrong with me but so frustrated because I can’t seem to get stable and maybe I never will. Ugh. Thanks for listening.
Well Benlysta is known to be particularly effective in controlling pain in those that it works for- it may take a few months but may be your godsend- good luck!!
So sorry to hear you are going through so much! I have only been on this "roller coaster" since March and its been a crazy one. I am thankful to have such a great doctor who is always listening and willing to do anything to make me be able to get out of the bed. I am on prednisone and I HATE it! They are doing all they can to get me off of it. I now have gained more weight, have high blood pressure and cataracts. It also has lowered my immune system making it easier for me to catch the flu which led to a 3 day hospital stay on Christmas. The next thing my doctors is worried is me coming diabetic. So I would try and avoid it at all costs! They are thinking about trying methotrexate to try and get me off of the prednisone! Hope you start feeling better soon and can get seen to get things figured out! :D
I'm sorry you're going through all this... I know I went through a roller coaster of emotions when I was first diagnosed, and tired of getting another pill, and will this work or not, will I ever feel better??? I have to take responsibility for myself, and eat right, and exercise and watch the caffeine, and rest - but not too long or too late or I won't sleep well at night. I never did any of that before I had lupus. But it is what it is, and accepting is part of managing the symptoms for me. I think its understandable to have anxiety over this, and just telling us about it is a step forward for you. Perhaps something to help with the anxiety, may help reduce the pain as well... If you're not having luck with your doctor, maybe its time to look for a different one that is more helpful for you?
Dear Trisha--- call your rheumatologist's office and ask to speak to him. If HE'S BUSY ASK HIS NURSE TO HAVE HIM RETURN YOUR CALL. You are in pain and suffering. You may require prednisone or anti-inflammatory med like motrin...it depends on how high your sed rat and C-reactive protein levels are. You can have lab work done that tells you and your MD if you are having a flare. Be your own best advocate. Sandy
I use to suffer through it, but now I call in a request a Medrol Dosepak. I just can not afford to not be able to work. It also seems to shorten the flare and if I’m lucky… Stops it. Good luck, and remember the squeaky wheel gets the grease, be a pest, don’t suffer through it.
As much as I don't want to be on prednisone long term, when my rheum tries to wean me off (which would leave me on Plaquenil only), I get to a point where the weird and awful pain starts and weird symptoms (dizziness, BP all over the place) to return with a vengeance. I re-start the prednisosne and everything calms down. Maybe ask your doctor if you can try it to see if it helps? At least until you start the study meds?
If your rheumatologist makes you wait this long even for urgent care you need to look for a more accommodating rheumatologist immediately for your overall health and well being.
This may help you for some preventative measures for the future. I do quarterly preventative approaches for my lupus that have really been more helpful than the meds alone. Such as body cleansing every quarter and I changed my daily diet as well removing all meats. After much research it would be best to remove as many meat byproducts as well but I haven’t been able to do so. Saunas help if used consistently as a preventative approach. Stretching, yoga and massages help for prevention as well. And 8 glasses of water daily. The concept is to not adding extra toxins to your your body and release as many harmful ones naturally as possible.
Thank you all for your ideas and kindness. I’m going to called demand to see the rheumy this week and I’m going to start looking for a new primary. I just hate having to tell my story over and over to new doctors and trying to build the trusting relationship, etc. I always get the lecture about my medicine and pay the $50 co-pay for them to say, “I’ll defer to the rheumotologist.” Then why do I have to see you?! Argh! My husband and a few people here on the board have reminded me though- I pay the doctor to help me and I deserve him/her to care and respond to my pain, etc. I try so hard to be the compliant, nice patient, thinking at least my care won’t get worse, but really it hasn’t gotten me very far in treating my issues and feeling cared for.
Steroids make me nervous due to the bloating/weight gain but with all this constant inflammation, I’m sure some permanent damage is being done. Anyways, thank you all for listening and caring to respond to me!
Any doctor who can't see you - especially in an urgent situation (my rheumatologist has an option that asks if you are in pain right now hit this option) - is not worth paying or seeing. Instead of thinking of how much time you have to spend telling other doctors your story over and over again, think of how much time you are wasting/suffering by telling your story to who doesn't listen or care. I agree with Tiffani. Demand to talk to your rheumatologist and go there in person if you have to do that to talk to the doctor or his nurse. If it's an office problem with making appts (as office staff can be horrendous), demand to speak to the office manager - and put it in writing in an email or fax - putting things in writing makes a difference...if they don't care about your needs, they care about their professional liability insurance. Any doctor who makes you feel inferior or doesn't have time for you shouldn't be your doctor. It means they are not listening or caring for your needs. As for prednisone, I've been on that before and it helps but I don't want to be on it if I don't have to be. That is a decision between you and your doctor. Don't ask them to put you on a medicine. Tell them you want it and if they don't want you on it, have them tell you exactly why and in layman's terms. The time you spend searching for and finding a new doctor (s) will be worth it. I've been in your shoes - there are other doctors/specialists out there. It's your body and your life that is affected. It IS a PAIN finding a new doctor - b/c it might take a few doctors. Your primary should be more like a "captain of the ship" and should try to help lead you in the right direction. Good luck!
I am sorry about how you get scared. Is having lupus fairly new for you? I think none of us likes getting sick...i recently did a very bad way and know even though now i am okay...if i push it at all for next few months, bam! it will happen again. So i try to live normally, just go very slow and rest more as i need too.
But getting anxiety does not help for you or the pain. Are you using any NSAIDS for the pain? I think your doctor is wise about pain meds..an excellent article about how doctors and dentists have prescribed vicodin like antibiotics were done in the past, instead of using nsaids for the pain, like motrin which will handle most dental work( including root canals) out patient surgeries etc. Only pain meds are now affecting our brains, making us more sensitive to pain.
Anyways...you might consider seeing a therapist about the anxiety...you want someone that knows how to help desensitize you for it. Not using drugs...just makes it worse. Hopefully they can give you some skills or even just talking about what worse that happens and how you can deal with it.
I personally, do not call my doctors when i flare. No reason too since i know what to do and what to watch out for. If you are feeling scared as to worried about what to watch for, you might ask your doctor regarding the signs...might help to calm you down.
I hope you think about why you are stressing and then either talk to your doctor about the fear or see a therapist to help you. Also, i have anything you need in the house at all times for when i get sick...that way you do not need to see them. No way i can go in when i am bad sick so i need to be prepared instead...this might be a good rule for you as well. Plus help you feel more in control. I wish you the best and hope you are feeling better soon.
So sorry you are suffering so much. Sometimes our emotional level rises and falls with the flares. I have Prednisone in a few varying levels that my Dr.s have provided for me to use or not use as necessary. I have been fortunate in my Dr.s because they DO consider me as someone responsible enough to know when TO and when NOT to use the Prednisone. I am also on Plaquenil...and several other meds. I do not panic when I know a flare is coming on...but I go get annoyed and aggravated and frustrated. Perhaps you could be on something dealing with anxiety other than Wellbutrin...like Paxil? I am no expert...but the anxiety may cause your to feel panicked.? Sometimes the Dr.s do act as if they are fed up or don't know exactly how to help...and I figure that may be as frustrating to them...as feeling a flare coming on is to me...so I try to be reasonably understanding about their momentary attitude shifts. I know they see people who are in MUCH worse shape than I am...because I see those people in the waiting rooms. I imagine when they see those people...and then me...who although pain filled and crappy...can still walk with little aid...I sort of understand why my plight might not seem so bad to them. It's a nasty illness...so we all have to use ALL the best thoughts, care and reason we have...to keep on keeping on. Best wishes for you....that you get a bit more help...and a bit more tolerance for yourself and the docs. There are days I can barely walk...and then days I can walk pretty well. I figure the good days alone are a miracle...because I could be not having any of them.
Hi all. So I decided today to start my search for a new primary. I have an appointment with a former internist, female, who I remember as being very kind. I left because it was kaiser and I couldn’t stand the kaiser rheumatology dept. I’m going to keep my rheumotologist from ucsd through the research study; hopefully it won’t pose too much of a problem being different medical groups. I was proud of myself today with my rheumy. I called and demanded he call me or agree to see me this week. I was able to get an appt for during his lunch time- I don’t feel that guilty because he has been ignoring me for two weeks. Now I have to get my notes down so I don’t forget anything cuz he’ll be in rush.
Good for you!!! Make sure he DOESN'T rush you either... :)
iamlinkgirl said:
Hi all. So I decided today to start my search for a new primary. I have an appointment with a former internist, female, who I remember as being very kind. I left because it was kaiser and I couldn't stand the kaiser rheumatology dept. I'm going to keep my rheumotologist from ucsd through the research study; hopefully it won't pose too much of a problem being different medical groups. I was proud of myself today with my rheumy. I called and demanded he call me or agree to see me this week. I was able to get an appt for during his lunch time- I don't feel that guilty because he has been ignoring me for two weeks. Now I have to get my notes down so I don't forget anything cuz he'll be in rush.
Dear Poobie, by all means do what ever you have to try to get off of the steroids. You are correct it does weaken the immune system leaving you volunerable to get cancer and other conditions. Steriods killed my cousin she had Lupus also, it killed her immune system then cancer attacked her system and that is what she died from. I have lupus, I was diagnoised 2 years ago and went thought what you are going through with trying different meds to see which ones will do the job of controlling my pain. The Plaquenil with Mexthotraxte is what finally did the trick I am now back to normal and have not had a flare up in over a year. With lupus you must not stay out in the sun for very long because the ultra violet rays can cause a flare up, you must wear sun block and a protective head gear and sun glasses at all times. If you are placed in methotraxate you will also will have to take folic acid with it as well.
I hope this helps you...
Ms. P
Louters said:
So sorry to hear you are going through so much! I have only been on this "roller coaster" since March and its been a crazy one. I am thankful to have such a great doctor who is always listening and willing to do anything to make me be able to get out of the bed. I am on prednisone and I HATE it! They are doing all they can to get me off of it. I now have gained more weight, have high blood pressure and cataracts. It also has lowered my immune system making it easier for me to catch the flu which led to a 3 day hospital stay on Christmas. The next thing my doctors is worried is me coming diabetic. So I would try and avoid it at all costs! They are thinking about trying methotrexate to try and get me off of the prednisone! Hope you start feeling better soon and can get seen to get things figured out! :D