Comments on: Cardiovascular Health & Lupus: Managing the Risk

By: Dawn

Dawn — Mon, 03 Aug 2020 00:32:48 +0000

Seems you skipped Pulmonary Hypertension. In my past 12 years of dealing with it, seems to like a good Lupus patient now and again. I’ve had Lupus for 30+ years and have a pretty good relationship with my Dr.s and I’m seen at a Major Medical Institution and I couldn’t get a PH diagnosis without frustration. It took me over 3 years for someone to finally get it right. I was given Pericarditis, Myocarditis, lose weight, exercise, PE, lung fungus (some weird name), and a bunch of excuses even though my sitting O2 was in the mid ’80s. More people and Dr’s need to know what to look for in their patients, it’s no fun gasping for air while your heart races at the same time.

By: brett

brett — Thu, 14 Nov 2019 20:20:12 +0000

In reply to Jennifer.

Hi Jennifer — thanks for reading and being part of the LC community! You’re correct – it looks like the article says ’50x’ but the Newsletter had used the phrase “increased risk by 50% or more.” Considerably (and importantly!) different as you pointed out!
-Brett

By: Jennifer

Jennifer — Thu, 07 Nov 2019 06:00:48 +0000

50 TIMES greater risk is not the same as “50%” greater risk. I greatly appreciate this website but mixing up a 50 times greater risk as only a .50 greater risk is not helpful to educating about lupus. The risk of heart attack or coronary artery disease in SLE patients is ENORMOUS, and all SLE patients should have themselves checked for plaque and hypertension regularly. The steroid treatments increase the risk exponentially as well, not FRACTIONALLY. I fight to convince my primary care doctors to run screening tests like this because they think the risk elevation is marginal when it is not. Thank you for this website!

By: brett

brett — Tue, 02 Apr 2019 16:41:33 +0000

In reply to Christy.

Hi Christy,
Thank you for being part of the community and taking the time to share your experiences. I’m sorry to hear about your challenges and truly hope all the best for you. Your strength is definitely understood here!
We want the LupusCorner articles to be as useful as possible – if there are topics you’d like covered, please let me know.
Also, if you are interested in contributing to the LupusCorner Q&A Forum you can email hello@lupuscorner.com

-Brett

By: Christy

Christy — Tue, 19 Mar 2019 16:45:07 +0000

Thank you for all the information about symptoms, medications and treatment options for lupus (All types of autoimmune disorders).
It is extremely reassuring to realize that I am not alone, that someone DOES understand the daily struggle. Even spouses who are supportive often still do not grasp the true depth of the fatigue and pain of just getting through the day.
My husband tries to understand, i know i am lucky and blessed to have him. However, sometimes when i comment about a struggle he just poo- poo’s me, like “oh, it’s not as hard as you think just try harder”. He doesn’t “get” that i give 150% EVERYDAY. Not just the days i happen to mention i am struggling. EVERYDAY.
So knowing there are others who DO “Get it” really helps mentally. I am not crazy.
I fear that my grandchildren will only remember me as the crazy, sick grama who was always complaining about pain and being tired.
I used to be the “Fun” grama, trips to the beach, parks, Disneyland. That changed almost overnight after a major car accident. I had symptoms for many years prior to this car accident however, i had managed them without medications for 10 years. It was like someone turned on the light switch and i haven’t been able to turn it off… for the last 15 years. Not sure if the stress, the medications for the broken bones, age or what set of the major flair but it has been overwhelming ever since.
I mourn the freedom of being pain and fatigue free.
I mourn the loss of being able to physically and mentally doing what i was capable of doing prior to that dreadful day.
Thank you for listening, for caring. I hope you know what a blesding you give to other warriors daily. Through the information, advise, listening and support that your site provides for us.
Bless you and stay strong warrior!!

By: Cory Ferguson

Cory Ferguson — Wed, 27 Feb 2019 16:13:44 +0000

I’ve learned alot from these little deals. I’m going through several of the things that have been posted lately. I appreciate the info.

By: Debra Kendrick

Debra Kendrick — Wed, 27 Feb 2019 04:33:57 +0000

Thank you for all this great information on Lupus. Sometimes we think we are battling this alone.